Thursday, March 27, 2014

Ben's story


This is the story of Ben. A beautiful, happy and sweet little boy from Ireland. His story will not leave you unshaken.  I can't find words to introduce this story to you, but all I know is that the whole world deserve to know about Ben, and one person at a time, maybe change the world?

The story is told by his father, Bryan. 



Little Ben Canty was 3 when he suffered his first stroke. On the 15th January 2010 myself and my wife noticed that my two year old son was limping slightly on his left hand side. We put it down to nappy rash. The next day my wife noticed that he wasn't using his left hand much and would do so only when asked. He found it a struggle. We went to see our GP next day. He was definitely getting worse. The doctor thought it was a hip infection and the hand was failing because of the leg but sent us to the hospital for an X-ray in case it was bacterial. Within twenty minutes we had seen a junior doctor, a senior doctor, the A&E consultant and then a neurologist. We knew instantly something was seriously wrong. I stood behind Ben while the consultant spoke to him. He asked him to smile and when he did this he asked me to come round and look and was his smile always like this. I nearly
collapsed. The right hand side of his face was normal but the left hand side was sagging. He was instantly rushed for an MRI and within two hours we were told he had three Cavernoma’s on his brain; two small and one the size of a euro coin. That one unfortunately had bled. He had suffered a stroke.

We were transferred to Temple Street Children's Hospital in Dublin, Ireland for surgery but after two days of various neurologists checking his MRI, the surgeon decided not to operate because it was to close to the brain stem. He said the risk of paralysis was too great and would only operate to save his life. Throughout all this, Ben was his normal self, always happy, looking to play and cause the usual two year old mischief. He didn't seem to realise anything was wrong. We transferred back to our home town and Ben was kept in hospital for a further two weeks for intensive physio. It was then decided to move Ben to an outpatient as he was very cranky in the hospital and this was felt to be detrimental to his recovery.

After four months, Ben was 90% recovered after physio on his face and legs and occupational therapy on his hand. After two weeks he was able to lift his hand involuntarily, and this was a fantastic moment. He never complained about all the work he had to do, we turned them into games.That year he progressed so much. He was full of life. Unfortunately on the 21st we noticed that the pupil in his left eye was abnormally large. There was no inkling of any weakness like the first bleed but we brought him to A&E at the University Hospital in Cork. We explained Ben’s previous history and that he had three Cavernoma’s and one had bled previously. Ben was examined and we were told there was no issue and all was okay. We insisted on an MRI and after we spoke to his neurologist she agreed. The Cavernoma that had bled previously had bled again, had increased in size and was blocking the valve that drained fluid from the brain. It was decided to send Ben to Temple Street hospital in Dublin again so that a shunt could be fitted. We travelled that evening by Ambulance to Dublin and met with the same neurosurgeon, Mr John Caird, who had decided not to operate the previous year because of the dangers. He said that the Cavernoma was the size of a ping pong ball (his words) and after speaking to some colleagues in the UK felt he had no choice but to remove the Cavernoma, which was located on the brainstem.

Ben had surgery for over six hours on the 1st and been a success and that they had got most of the Cavernoma. There was still a little remnant left but he didn’t think this was going to be an issue. When we spoke to the anaesthesiologist after she said it was the most amazing operation she had ever been involved with. When they got to the Cavernoma it literally popped out, that the Surgeon didn’t even have to do much cutting to remove it. She said it looked like a Blackberry. Ben was released from hospital a week later and so far we have had no major issues as a result of the operation. He had sight difficulties as a result but various ophthalmologists have said that he was too young to accurately gauge the extent of these problems and will have to wait until he’s older to test him properly. He still had a lot of weakness on his LHS and wore various implements to help him. He wore a DMO during the day and a cast at night to of Feb. When we met the surgeon afterwards he explained that the operation had correct his ankle as this turned when he had a bleed. They also found two more Cavernoma’s when he was in Hospital but like the two he had left after the op, these are small and don’t seem to be a problem. He had been to see the Neurosurgeon three times since the op and on the last visit in July of that year he said he was very happy and would not have to see him again for a year. We felt like we won the lottery. He still saw his neurologist every three months and she was very happy with his progress.

When he left the hospital we were told because of Ben’s history, he would be prone to seizures and were told what to do if he had one. Ben continued to blossom and as he got older and we began to see in him the young man he was becoming. He never had any further problems since the operation and bar the sight difficulties, which didn’t seem to be a major problem, he spent most of his time playing and enjoying life to the full. He never had any seizures so we started to settle down and become a normal family. The 7th like any normal day, Ben went to school, came home, did his exercise, then went out to play. After his dinner that evening I brought him upstairs for his hour of wind down time before he went to bed. We would spend the hour doing a few exercises and then playtime. We played snakes and ladders that evening as we did most nights and he won as he did most nights, with a little bit of cheating I might add. He went to bed at 9 and I read him his usual stories and we did our usual 5 minute show with his favourite teddy, Elmo. I sat on the bed with him, as I did every night, until he drifted off. He fell
asleep around 9.30pm.

I was heading to bed around 10.40pm and as I ascended the stairs, I heard him vomiting in his room. My wife and I  went to him quickly and lifted him out of the bed and started to change his bedclothes. He was shaking a little at this stage but we put it down to him just waking up and being a little cold. We brought him into our bed, gave him some juice as he was still coughing a little, then lay down with my arms wrapped around him to get him warm. We asked him was he okay and he said he was ‘grand dad’. After a minute or 2, his shoulders started to jerk upwards and when I switched on the light, I noticed his eyes had turned up. My wife immediately rang for an ambulance and they kept me on the phone while my wife held Ben in our bed. The ambulance took around 40 mins to arrive and all this time Ben was still seizing. After the ambulance crew placed him on oxygen, I was told to carry him to the ambulance. My wife went with him to the local hospital while I followed in the car. He was taken to the resuscitation are of the A&E and they started to administer 4 types of anti-seizure medicine to try get the seizure to stop. But none of them worked. All the while we were sitting there as a team of various doctors did their utmost to stop it but nothing worked. Eventually they told us that they were going to have to ventilate him, which was basically to place Ben in a coma. When they did this, the jerking stopped and Ben was stable. However the seizure had lasted for 1hr and 40mins in total. He was taken to the intensive care and attached to various probes. They said they would monitor his brain functions for 2 days before they did anything.

We sat by his bedside for 24 hours, watching the monitors and trying to make sense of what was happening on them. At 2.30am the next night, we were called to a meeting with a hepatologist and told because of the amount of anti-seizure medicine that had been given to Ben and the fact that his temperature had risen to nearly 42deg C before he was stabilised, it had damaged his liver and they were concerned over this. They decided to send him to a specialist paediatric hospital in Dublin where they had a children’s ICU where his liver function could be monitored better. He travelled for 4 hours through the night and we followed him by car. We stayed by his bedside in the new hospital and the blood tests they took every 2 hours showed his liver function was getting worse each time. The next afternoon we met the Neurologist who said that even though Ben seized for nearly 2 hours, that his brain function looks okay and they would do an MRI to check it.

However the next doctor to see us was the hepatologist and he gave us the shocking news that if Ben’s liver continued on its present course, he would have to have a transplant. We were totally shocked. His liver was perfect 2 days earlier. We were told he would have to be transferred to Kings College hospital in London to a specialist neurological and hepatology ward. Ben was transferred by ambulance to the main airport and transferred by specialist medical flight while we followed on a commercial flight. It was a major job getting him transferred and this took a few hours. He arrived at the hospital at 4 in the morning and we arrived about 20 mins later. Over the next 2 days Ben’s liver got progressively worse until on the Saturday, we filled out forms to put him on the transplant list. He could have got a transplant that evening.

When the registrar went to put his name on the list, we met a nurse who said that he wasn’t going for a transplant. We were shocked. Nobody knew what was happening. We waited by his bedside for an hour asking various health professionals what was happening but no one knew. When the registrar returned, she had a smile on her face and said that he wasn’t going on the list as the latest blood test that was done showed that his liver had made a slight improvement. Over the next 24 hours Ben’s liver had virtually returned to normal. That evening, even though he was still ventilated, he moved a few times and fluttered his eyelids when my wife asked him to open his eyes. We were already talking about our trip home, how he would need intensive physio but at least we were getting our little boy back. However, that evening they decided to ease off on the sedation to see what would happen but unfortunately, to our horror, Ben started to seize again. They increased the sedation again and that night, around 2am, the neurosurgeons installed a probe in his head to monitor his brain functions and to get a better idea of what was happening. We were told not to talk, touch or stimulate Ben in any way and they would monitor him for the next 48hrs and then make a decision.


We sat by his bedside for 2 days while we watched the figures coming from the brain monitor. We were told a good brain function was 5 on the monitor while a 40 was bad. When they switched on the monitor he was at 25 and it started to creep up slowly. Over the next 2 days they would give him medication which would bring it down to 15-16 but after a few hours it would slowly start creeping back up again. After 2 days they said they would do a CT scan and then make a decision. When the neurologist came back to the ward, he passed us and went to the head of the department. I saw him touching the back of his head and then shaking it and I knew then that our world had fallen apart. He came back to us, closed the curtains and told us there was no hope. That Ben was clinically brain-
dead and the ventilator was keeping him alive. I will never forget that moment as myself and Elma collapsed onto the bed and hugged him as tightly as we could.


After an hour, we spoke about organ donation as we knew they were going to ask us. We agreed that Ben would donate his organs as he was in the same position a few days previously when he needed a Liver. We kept him alive for a further 24 hours as a team of people from the organ donation team starting matching his organs with children that needed them. My wife slept with Ben that night in the hospital bed as he had slept in our bed every night for the previous six years. The next day, Ben was taken to the hospital theatre. In a room just outside, he was placed in our arms with his favourite teddy Elmo and they removed the ventilator while we sang his favourite song, Hush Little Baby. After about 2 minutes my wife told me to look at his lips, they were turning blue. After about 4 minutes we had to let our little darling go and he was brought into the theatre so that he could help other children.


When we got back to the ward to our family, it was without doubt, the worst time of our lives. We did speak to a member of the organ donation team and while they couldn’t tell us much, they did say that an 11 year old girl in the north of England was on her way to a hospital to get his Liver. We now know that he helped 4 children including 2 young babies and an adult so far. This might be a help to us in the future but not now. We travelled home the next day and Ben followed us home 2 days later, when the legal paperwork was sorted. We buried Ben the following Wednesday after a nice service where his school got heavily involved by way of music and readings.

Ben was buried in the local cemetery about 2 miles from where we live and I go to see him twice daily, once in the morning and once in the evening. I don’t pray there, I just talk to him and tell him what’s been happening.

What I wouldn’t give to hug my little buddy again but it’s not to be.



Giving life is just a click away. 

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Friday, March 21, 2014

You, yes you!

Hello  my loves,

Lately, my "blogger" stats is telling me that I have over 400 visits a day.  It has just
slowly gone up months by months. I would still do this blog even if it was 1 a day. Heck even zero a day, if that meant one person would one day stumble on it and find answer and support!!  I don't do what I do for a visit or that counter to go up. I don't even publish it because that is not important to me.  HOWEVER, I would love if i heard from you more. I don't mind not getting comments. That is not why I write this blog either.  If you ever tried to contact me, and i never answered, I promise you I didn't get it, and there is a glitch somewhere.  But sometimes I wonder, where are my readers from? Is this blog helpful? Is this blog answering questions? What can I do better? What would you like me to write about?    Do not hesitate to contact me :)~  


My email is lisanneklute@gmail.com  


(((love)))


That brain fart lady that loves dandelions


Wednesday, March 19, 2014

Successful "Inoperable" Surgery: Nicola!


I was 14yo when I first discovered I had an inoperable cavernoma in the thalamus in the middle of my brain.   At that age I was relieved it was inoperable as I had no symptoms at all and I did not want anyone opening my head and going into my brain. So if I had no symptoms how was it discovered? Well both my Mum and Aunt had cavernoma's removed a year apart from each other so the hospital guessed these things could be genetic and asked would I mind being scanned, and I agreed so that's how it was discovered. Thankfully for me, no long drawn out misdiagnoses. This was 17 years ago before any genetic links had been confirmed. So I lived with it, I knew to be a 
bit more cautions of things, like roller coasters, stressful situations, contact sports or banging my head but it really didn't effect me apart from the occasional migraine but I was told time and again the Cavernoma was not causing the migraine so I carried on like any other 14 year old with school and my exams. 






Three years later at 17 yo I had my first bleed, by this stage the hospital discovered the KRIT 1 gene and assumed we had that. (We have since had gene testing confirming we carry the CCM1 gene). My first bleed was a small bleed that slightly effected my vision I was left with a quadrantanopia which is a loss of the left lower peripheral vision in both eyes so I was therefore not allowed to drive as this is the area pedestrians step off the kerb. Because of this bleed I had to see my Mum's surgeon who still said it was inoperable and best left alone. Again I was happy with this because I recovered from the bleed and was back at college within weeks although the vision never returned, and I was never allowed to drive something I just accepted and adjusted to . My next bleed was another 3 years later and again was fairly small I spent a few nights in hospital and had a small amount of weakness in my left ankle but this was gone within 3 weeks again so I was happy to just carry on with the watch and wait treatment.



I was working for a small busy ad agency 2 years later when I have a slightly bigger bleed which made me fall down the stairs on my commute home from work. I had numbness in my left hand, and the leg weakness was back and a lot weaker this time, It took me about 3 months to recover and get back to work from this one so I was still fairly happy with inoperable I really did not want anyone going inside my head and strongly believed they never would as it was inoperable after all. So back to work and back on with my life, and apart from these bleeds inbetween them my life was completely normal I really didn't think of myself as ill and no-one apart from close friends and family knew anything about what was going on in my head. I even moved to Spain for 6 months I was that confident in my health. 



Four years on my partner and myself took ourselves off to Australia for work. Armed with my hospital letters and a blessing from my neurologist who advised me Australia have great neurological knowledge. I really didn't care or think I needed to. But 8 months into our year I found myself having a contrast scan in an Australian hospital with my family the other side of the world this was so scary being so far away, waiting for the Dr's to contact my neurologist in the UK.  I had had another bleed, and the left sided weakness had returned but again I seemed to bounce back and within a month we were exploring in Tasmania then heading to Thailand and home. I really was determined not to let this stop me from doing anything.  As soon as we got back to England I went to see my neurologist to give him the letters from the Australian hospital. So I am up to bleed number 4 with vision loss and can't wear high heel shoes as the left ankle weakness is becoming permanent by now, but my cavernoma is still inoperable. This is now starting to annoy me, and my thoughts are turning more towards trying to find a treatment. I would like it gone so I can carry on with my life without these hospital stays but no chance its inoperable so it has to stay put, and I just have to adjust my life to these bleeds. So that's what I did again. 




Bleed number 5, just 3 years later shook my whole world, I had a busy high stress job, lots of friends, a brilliant social life, but my Dr's all said carry on as normal so I did. We were trying to rebuild our lives after our trip away and get permanent jobs and a mortgage and just boring grown up stuff, I had lost my job, my partner couldn't get a permanent job and everything was incredibly stressful when I noticed at my pilates class I couldn't do any of the moves that I could normally. I didn't feel to concerned as tiredness brings out my symptoms, and I was under lots of stress. I remember I  had a spa day brought for me as a Christmas present so I booked that and thought relax for a day and it will be fine but that night I could not hold my fork in my left hand at dinner I still  thought a good nights sleep would fix it tiredness always brings out my symptoms. When I woke up the next morning my face had dropped on one side, and I could not move my left arm or hand at all and I was dragging my left leg. My local A an E sent me straight to the neurological hospital in London, and I felt for sure this would be the time they finally operate, this is the most severe symptoms so far and I was terrified I would never walk or move my left arm again.I saw a new surgeon on this hospital stay, and she was adamant it was still inoperable. I could not get my head around it at all five bleeds, a full stroke, 6 weeks inpatient rehab and all I could do was watch and wait for the next stroke. This seems an important time to mention that Health care is slightly different in the UK. It might seem strange to some, but we don't tend to seek second opinions due to the NHS we just listen to what we are told and trust the Dr's. Although we can look for second opinions with NHS choices lots of people are not aware of this, but I would urge anyone who is unhappy with their care to do so. But it never occurred to me because I am lucky enough to be under the treatment of one of the best neurological hospitals in our country, they saved my Mum and Aunts life after all,  so I had faith in what they said even though I didn't like it. By now though I was scared of more strokes and how much worse they could get if I was left to have another 5 bleeds. This bleed left me in the hospital for 8 weeks in total as I was admitted to the neuro rehab ward to get my arm, leg and face working again, and they were brilliant they helped me get lots of movement back it was the hardest yet most rewarding and amazing things I have ever been through, despite hospital food and beds for 8 weeks. 




After  inpatient rehab I finally went home to my own bed and started community rehab which is a local rehab center who would pick me up and work with me an hour each day. I worked hard with them for 6 months I had physiotherapy, occupational therapy, psychology and cognitive behavioral therapy because I was suffering depression, anxiety and panic attacks. My therapist said she was not surprised at all, and I deserved to feel a little sad for my self after everything I had been through. It was at this stage I discovered Cavernoma Alliance UK and discovered actually I was not alone, and there are many others going through this. What an amazing find I learned so much more about my condition from talking to others who had cavernomas. I turned 30 that year and could not believe my life I was unemployed, lived with my boyfriends parents, didn't yet own our own home,  had suffered 5 strokes, could not drive, and it all seemed so unfair. The therapy picked me back up, helped me to get through the depression and anxiety and to get better and come to terms with everything. I thought to myself right well this little monster in my brain (Freddie) is going nowhere so I need to at least keep him happy, so no more stressful job, I gave my diet an overhaul and went completely healthy, no alcohol and just a really nice chilled out lifestyle no more worrying or stress. Helped along with the coping mechanisms I had learned from CBT. I decided to sign up to a course and train to be a nail technician follow a new and different dream, I was busy designing flyers, finding premises to work from, practicing and thinking of ways to find and keep clients I was so excited I really believed maybe that big bleed was 1 last finale. 





Nicola set up a fundraiser for
Cavernoma Alliance of UK
and donated all of her hair a few weeks
before surgery! Gorgeous! 
But no just 7 days into my course less than a year since my last bleed I woke up one morning with a killer headache, the only bleed that has ever caused me a headache, weakness in my left arm and my vision on my left seemed to be getting darker and darker until eventually I could see nothing on my left side it was just black. After working so hard in physio to get my left hand working again I was devastated that once again it was not moving and heartbroken at the thought of going through all the rehab again and having to quit my nail course, my new dream. My trip to the hospital was slightly different this time, my surgeon didn't want to see me until I had some peripheral vision test so I was given lots of morphine for the pain and sent for scans and vision tests which both confirmed a huge bleed, fluid, swelling, and I now had a full hemianopia meaning my vision was gone on the left completely in both eyes. When my surgeon eventually came to see me I got the biggest shock.  They could now operate. I cried so much, but they were tears of relief not fear. With the damage done to my vision a new way in had opened up they were now able to get to my thalamus without the worry of damaging my vision or my left arm and leg function. I was sent home to think about things and try recover from the bleed. And what happened? My vision started to return, I could not believe it, normally good news but would they still operate now with out the new route in? Off I went to discuss the new changes with my surgeon and thankfully she said if I still want to go ahead they would but as long as I was fully informed and aware of all the risks my vision, arm and leg function could be left a lot worse or gone completely. For me it was a scary decision after being told for 17 years its inoperable, if we take it out you will have less life quality, you could end up in a wheelchair I still wanted to weigh everything up. This is the point I felt  incredibly lucky my surgeon saw me so many times while I was making the decision and everytime I was in her office for an hour with all my questions, and I never felt rushed or like I was bothering her or that my questions were stupid. I asked her if it was her would she have it done and she replied that with all her other patients she could say definitely yes or no but for me  I could 50% regret having surgery but I could 50% regret not having the surgery, but she also said something else that stuck in my mind which was "now is the right time while I still have enough function left to save". To me this meant she must of thought she could do it. After lots and lots of thinking and talking with everybody who would listen I came to the following  conclusion.





Just woke up. 








Whatever happened, whatever deficits I got at least they were the last deficits, it would be the last rehab, the last time my whole life had to stop so I had to say yes. I had my surgery 5th March 2014, and I was told it would be a 6 hour procedure what a horrible wait for my loved ones. I was taken down to theater at 11.30 and when I woke up and asked my partner the time I was so shocked to hear it was 4 o'clock! My surgeon came to see me and told me the procedure was quicker than expected and simpler than expected and only took her 2.5 hours! 





And I had not one single new deficit so even though I was in a lot of pain I could not have been happier. I was home from the hospital just 5 days later.  


Of course I have thought if only they had done it years earlier it could have saved me so much pain and upset but actually my left arm has come out stronger than before I went in, and my vision isn't as dark as it was.





I am having some physio, but it is all to fix stroke damage not surgery damage. My surgeon felt that the amount of time and bleeds had moved my cavernoma into a more accessible place and made it an easier operation so I am glad I waited as long as I did. I just was never ready before, and I think you know yourself when you are ready for that step. My life might of been so different if I had surgery earlier but actually I'm happy with the path its taken me on I might have made some pretty bad decision in my youth if I hadn't been conscious of my health and I definitely would not of quit my stressful job to follow my dream of working for myself as a nail technician and therapist, I'm returning to finish the course at the of the year. So in my opinion inoperable does not mean inoperable. It means finding that perfect surgeon who makes you feel safe, and it means weighing up the risks of surgery against the risks of not having surgery.







Back home Smiling BIG!! 



Nicola at home, recovering one last time!!!! 
         



Monday, March 17, 2014

Fatigue after Brain Surgery



This excellent article is from BrainLine. The subject is about Fatigue after a
traumatic brain injury, but since invasive brain surgery is considered a traumatic brain injury, I felt very appropriate to share with you all. I copied and paste what I felt was related to surgery, from what I have experienced. 


BrainLine sat down with Dr. Nathan Zasler to talk about the issues of fatigue after a traumatic brain injury. Dr. Zasler is an internationally respected neurorehabilitation physician who specializes in brain injury.


BrainLine: Describe fatigue. What exactly is traumatic brain injury-related fatigue?

Dr. Zasler: Think about a car. It needs gas to run. If your tank is low, your car will start sputtering and then stop once you have reached the end of your reserve. It’s the same way with fatigue after TBI. Fatigue is caused by a decrease in physiological reserve, which includes a person’s physical and mental reserves. When your brain is “tapped out,” you feel tired. Basically, when a person’s brain is overtaxed, fatigue will set in.
Although one formal definition of fatigue that has been proposed states that it is the failure to initiate or sustain attention or physical activity that requires self-motivation, there continues to be debate about how best to define "fatigue." In part, it’s difficult to define the term because fatigue is subjective — that is, it is solely based on patient report — and it is really more a symptom than a diagnosis. Just like it is difficult to tell if someone is in pain, it is also challenging to know if someone suffers from fatigue unless they tell you so. But generally, people with TBI have described fatigue as a sense of mental or physical tiredness, exhaustion, lack of energy, and/or low vitality. Unfortunately, we don’t have any definitive screening tools for fatigue, so there is no universal way to measure it.
Cognitive and physical fatigue can occur separately or together, but most people seem to have more problems with the mental side of fatigue after a brain injury. They say they are not as quick as they used to be, mental tasks that were once easy are much more difficult, and they tire far more easily even doing something that used to be simple like reading, studying, or working.
Although there are limited long-term studies, some research indicates that fatigue is usually short-lived after most mild TBIs. And in my experience as a physiatrist, fatigue in patients with mild TBI usually lasts no longer than three to six months. However, for some people with mild TBI, their fatigue is more persistent.

BrainLine: How common is fatigue after a brain injury?

Dr. Zasler: In the general population, fatigue is a common complaint with some studies citing an incidence of 10 percent. But for people with traumatic brain injury, it is one of the most common problems post-injury. Fatigue affects not only people with moderate to severe TBI, but also those with mild TBI. And we still need more research to better understand this issue.

BrainLine: What does fatigue look like after TBI?

Dr. Zasler: The spectrum of fatigue is as broad as the spectrum of traumatic brain injury, itself. Everyone’s brain injury is different and everyone’s symptoms will be different. There are also many variables when it comes to post-TBI fatigue — from levels of severity to pervasiveness. Some people may be very fatigued all the time and others may only be fatigued after mental or physical exertion.
Most people who have fatigue resulting from brain injury only experience the problem at certain times and not all the time. They have more energy in the morning and tend to be more tired later in the day. People’s levels of fatigue also depend on how much they are pushing themselves physically or cognitively, and whether they are making time to rest periodically during the day and pace themselves.
Depression, anxiety, or stress can also contribute to the degree of a person’s fatigue or, alternatively, may even be the cause of the fatigue. Not everyone with a TBI will experience fatigue due to their brain injury. So, each person’s levels of fatigue, if present, may change over time during their recovery, in terms of both cause and level of severity.

BrainLine: Why do these problems occur?

Dr. Zasler: Unfortunately, we don’t really know. There have not been a lot of conclusive studies conducted on fatigue after brain injury. Much of what we are discussing is experiential. Some have theorized that damage to the basal ganglia — which are structures deep in the brain — are the critical areas involved in the generation of fatigue. Others have noted that other areas of the brain may be involved as well.


BrainLine: Can you explain why making sure you get a specific or accurate diagnosis is so important?

Dr. Zasler: With any medical issue, an incorrect diagnosis can set a person back in his recovery. It is important to make sure that you are seeing a clinician who is knowledgeable about traumatic brain injury. You can ask for references from other clinicians, from TBI organizations like your state’s Brain Injury Association, and from other patients. And you want a doctor with whom you feel secure, someone who is truly listening to you and asking questions.
Don’t be afraid to take your time in selecting a doctor. One thing that surprises me time and time again is that no one these days takes the initiative to interview potential doctors before making a selection. You can set up an appointment with a doctor you are considering to get a sense of his bedside manner, knowledge, and philosophy. When it comes to TBI, the patient/physician relationship may continue for many years, so choosing well is very important.

BrainLine: What can make fatigue worse?

Dr. Zasler: If you have neurogenic fatigue — that is, fatigue related to the damage in the brain’s nerve cells — here are some things that can make the fatigue worse:

  • not using pacing strategies appropriately, like dividing work into “chunks,” and not getting overly fatigued by working to long at a given task
  • not getting regular, restorative sleep
  • not taking the necessary naps or getting the rest you need throughout the day
  • not getting proper exercise or nutrition
  • taking medications that have sedative properties
  • having too much stress in your daily life
These suggestions are basic common-sense guidelines that clinicians should apply to help people with fatigue after brain injury. After all, the more a person learns about how and when his fatigue manifests itself, the more he can schedule his day around his levels of energy and create strategies to keep symptoms at bay.

BrainLine: Are there related problems that often occur with fatigue after TBI?

Dr. Zasler: The main ones are depression, anxiety, and stress. These often go hand-in-hand with post-TBI fatigue; one can exacerbate the other.

BrainLine: What advice or strategies do you offer your patients who are struggling with fatigue after a brain injury?

Dr. Zasler: Once I’m pretty sure that the fatigue is related to the TBI, I emphasize basic strategies like:

  • getting good regular, restorative sleep
  • making sure to get rest when you need it, not after you have become overly tired, stressed, depressed, or in pain
  • breaking activities into several steps through scheduling activities, “chunking” (that is grouping certain activities together) and pacing exercising
  • eating nutritious foods
  • asking for help when needed




Nathan D. Zasler, MD Nathan D. Zasler, MD, Nathan Zasler, MD is CEO and medical director for Concussion Care Centre of Virginia, Ltd. as well as CEO and medical director for Tree of Life Services, Inc.  He is board certified in physical medicine and rehabilitation and fellowship trained in brain injury.

Saturday, March 15, 2014

Successful "Inoperable" Surgery: Josephine.


As I share with you stories of people who become dear to me as they are going into surgery with Dr.Spetzler, I also get to know people who have already gone thru it.  This is a beautiful, amazing lady that I met thru our Cavernous Malformation support group on Facebook.  Only a few of us share the Brainstem  Surgery bond. haha So i find it so important to share with you!  She sent me a link to her story, which was feature in this "Women you should know".  It was with delight that I read her story, and asked her if she mind that I share with you.   Thank you so much Josephine for sharing your story! 


May 19, 2012 marks a very special 1st anniversary for Josephine (Jo) Macaluso. It’s one she is happy to be alive and well to talk about and celebrate. Over a year ago, a rare medical condition suddenly turned Jo’s world upside down and we are honored that she was willing to share the details of her deeply personal struggle with us. “I think it is important for people to know they are not alone. The only way for this to happen is to share our experiences. Raising awareness is the key.” Here is her incredible story in her own words.
 
My story begins December 16th, 2010 at 2:45 pm. It was the day after my 41st

birthday. I was driving and noticed when I looked to my left, my eyes could not focus and every image I was seeing appeared to be splitting. My assumption was that my prescription eye glasses needed a change. Simple, right? Not by a long shot.
As it turned out, my vision had not changed and the problem persisted. I have been a hospital pharmacist for almost 20 years, so I was very aware that double vision is not caused by anything benign. That’s when I knew I was in deep trouble.

Welcome 2011

My complete medical workup begins. I was scheduled for an MRI on January 6th and panic set in. Not only was I scared about what they were going to find, I have a horrible fear of doctors, needles and blood. I had never had an I.V. in my arm, never been in an ER (except while working) and never had any surgeries. But, I felt so much better having my tests and exams at the hospital I worked at for the last 5 years, St. David’s Medical Center in Austin, TX.
I made it through the MRI with a little sedation, a cloth over my eyes and the help of a caring tech who talked to me throughout the long table time. I finished and was sent home. As soon as I walked in the door, my phone rang. It was the hospital telling me that I needed to come back for a CT scan. I hadn’t even had a chance to cut off my patient I.D. wristband yet. So, back to St. David’s I went. This time after the scan, they wouldn’t let me leave and had me wait in the lobby instead. I paced the whole time. They now needed more MRI images.
At this point, I still had no idea what could be wrong with me. But, you know you have something uncommon when the radiologist has your images opened along with a Google search. The next several weeks involved me seeing lots of doctors and “ologists” in all different specialties, to get an accurate diagnosis and to manage my worsening vision and headaches.
illustration of woman's brainOn February 18th I saw neurosurgeon, Dr. Douglas Fox. He knew exactly what I had… a cavernous malformation, also called an angioma, which is the result of abnormal blood vessels that form raspberry-like clusters in the brain and spinal cord. Cavernous angiomas are estimated to occur in approximately 1 out of every 500-600 people, which is approximately 0.2% of the general population. For at least 20% of those with the illness, cavernous angioma is hereditary and in some of these cases people can have multiple angiomas, some too many to count. If angiomas bleed they can produce seizures, neurological issues, headaches, and hemorrhages.
Dr. Fox was familiar with this condition because he did a residency with one of the top angioma specialists in the country. I thought, “Hallelujah, I finally have a diagnosis.” But, despite having clarity, it was nothing to celebrate. Having a symptomatic (a.k.a. bleeding) angioma was rare, and it was even rarer to have one in the brainstem area… I had both of these conditions, as it turned out. Lucky me!
Let me give you some perspective on what that means… the smallest of intrusions in the brainstem can result in significant, and potentially life-threatening, symptoms. The nerves that transverse the brainstem control basic, involuntary functions such as respiration, gag reflex, heartbeat regulation, body temperature, pain and heat sensation, and hiccupping as well as other voluntary functions including eye movement, swallowing, facial muscle control, walking and speech. In a nutshell, the functionality of almost every critical system in my entire body was being comprised by this angioma that bled.

Wait & See

With all that, my doctor’s approach was to wait and see, simply because there were very few options. The only current treatment is surgical removal of the angioma, which is complex; so complex that only a few neurosurgeons in the world will even attempt brainstem angioma resections. If left alone, I was told that the blood from my angioma should, in theory, reabsorb and my symptoms should lessen. But, the odds of a re-bleed were as high as 30% per year for the rest of my life. Being a poker player, I usually make decisions based on understanding odds and probability. I didn’t like those odds. After each re-bleed the symptoms get progressively worse and the healing takes longer, if it happens at all.
Female eyeAt this point, my vision was so bad that I had to wear the ever-so-attractive eye patch. Trust me, it’s not easy to pull off pirate chic! The angioma was sitting on my 6th cranial nerve that controls the lateral eye movement. As the weeks went by, I was terrified as my range of single vision became nonexistent when using both eyes. My left eye was deviating in towards my nose causing complete double vision. Without the patch it was like looking through a kaleidoscope.
So, I started seeing a wonderful eye muscle specialist, Dr. Melinda Rainey, who recommended Botox injections in my eye muscle. Long before Botox was used to treat wrinkles cosmetically it was used to treat strabismus, also known as crossed eyes. Crossed eyes occur when the muscles on one side of the eye are weaker than those on the other side, causing the eyeball to be pulled towards the stronger muscle. Botox works to relax the overactive muscles in order to bring the eye back into proper alignment. I made a total of three trips to the operating room to get the injection. The Botox was not going to “cure” me, but would allow more time for my 6th cranial nerve, which was damaged by the angioma bleed, to heal. Thank goodness for anesthesia!
In the meantime, my overall health continued to deteriorate. The head pain was intense and I was sleeping long and deep. New symptoms were developing and I had all the signs of a stroke; slurred speech, numbness and partial paralysis on one side, facial drooping, loss of coordination and difficulty swallowing liquids. I also had severe increased sensitivity to sound. It all got so bad that I was barely able to function and had to stop working. I knew my angioma had bled again.

Under The Knife

Still seeking help for what was happening to me, my case was then reviewed by world renowned neurosurgeon Dr. Robert Spetzler at Barrow’s Neurological Institute in Phoenix, AZ. He and his team determined I was a candidate for the brainstem angioma resection surgery. If there was any doubt that I had to proceed with surgery, this new bleed within 3 months of my first one answered that.
May 2011, we have a surgery date set, but I was getting worse as the days approached, and we were advised to get to Phoenix immediately. I was only able to walk a few feet and needed a wheelchair most of the time. I first met Dr. Spetzler two days before surgery. He looked me squarely in the eye (pun intended, as my left eye was covered with the pirate patch) and told me the risks and statistics. While he impressively had performed more brainstem angioma resections than anyone else in the world, his grand total was still only a couple hundred surgeries of this kind because of the complexities and risks. His best hope was that I would come out of surgery the way I went into it. His job was to get the angioma out as safely as possible. I was warned that coma, stroke, paralysis and death were potential consequences. But, I did not have a choice at that point; I was so sick and felt if I survived the surgery, that I would just face whatever followed.
May 19th was my surgery day. I was nervous, but ready to proceed. The surgery lasted many long hours as my family waited anxiously in the waiting room. I awoke in recovery and immediately noticed I was able to move the fingers on my right hand. Pre-surgery, I was unable to even sign my hospital consent forms.
Jo Macaluso Post SurgeryMy first surgery and hospital admission lasted a total of 48 hours. This was pretty much record time for a brainstem angioma resection. I was prepared mentally for a much longer stay. I didn’t need intravenous pain medications, was eating well (I’m Italian… we can eat through anything) and had stablized neurologically. I had no pain and felt great. I really did. I was back at the hotel for a few days to rest before flying home to Austin. Just to make sure I would be OK for the travel day, we did a test run to a local Phoenix casino and I got to play some blackjack for an hour. I was on the mend!
Back in Austin, with my cane, I start my physical therapy at St. David’s Rehab. I was well enough that I did not need to be admitted. Dr. Thomas Hill, my post-surgical neurologist, set me up with physical therapist, Natasha Johnson. Despite feeling much better overall, I had some balance issues, coordination problems and my vision was very impaired. I spent many hours with her as well as on my own getting stronger. My home still has charts and visual exercises posted everywhere. I try to spend an hour a day doing eye exercises. Natasha sends me reminder texts to make sure I am doing my eye work. She has been incredible in my healing process. I can’t stress enough how supportive all my co-workers and the staff at St. David’s are to me.
At my 6 month post-op mark, I got a good MRI report. “Things could not look any better.” I got a pat on my back and was told to get on with life. It was a strange feeling when I left the neurosurgeon’s office.
Despite that good news, I soon realized that my body was not quite done causing me issues just yet. In November 2011, only 6 months after my brain surgery, I wound up having another surgery… this time to remove a suspicious nodule that was found on my thyroid during one of my neurological workups earlier in the year. So, I get though that and then just over a month later, I end up in the ER on December 31st, the last day of my hellish year, with a new onset cardiac arrhythmia (I had a sudden, unprovoked heart rate of over 200 beats per minute). As I was being rushed to the “crash room”, all I could think was that I was NOT going to die now after surviving all I did this past year. I survived (again) and triumphantly shouted, “Goodbye 2011!”

Moving Forward & Giving Back

The great news is that my vision has improved tremendously and as the weeks and months continue to go by, I have gotten a larger field of single, focused vision. Today, I am almost starting to feel like my pre-December 16, 2010 self again, which is incredible. But, I am also very aware that I will never be quite the same again. I have good days, many great, but I also struggle with some bad days. Folks with brain angiomas often liken the condition to an “invisible” disability. We live with chronic issues as a result of either having the surgery or having periodic bleeds. While we may look fabulous to others, many of us suffer residual problems that not everyone can see. We just know we are different physically, mentally, emotionally… guess that makes us special in some way.
I know the odds of my angioma coming back are very slim, but my fear will probably never go away. When that fears starts to creep up on me, I draw strength from a line in the Melissa Etheridge song I Run For Life that really resonates for me, “It’s a blur since they told me about it, how the darkness had taken its toll. And they cut into my skin and they cut into my body, but they will never get a piece of my soul.”
Angioma Alliance LogoI am proud to say that in January 2012 I was elected as a Board Member of theAngioma Alliance, a wonderful support group I joined when I was first diagnosed. Diana George, an Angioma Alliance peer supporter who happened to live in Austin, contacted me when I joined. She came to my house several times and held my hand and let me vent my frustrations. She and the entire group have been a continued source of strength and information for me.
Now, it’s finally my turn to give back to others affected and spread the word about the Angioma Alliance, whose mission is to raise awareness and to find a cure. It is a non-profit organization created by people and families affected by this rare disease. Donations for research are always welcome and you can learn more at AngiomaAlliance.org.
I am grateful each and every day for all my blessings. I am also so thankful to my family and loved ones, co-workers and friends who stood by my side, prayed for me and continue to be there during my long road to recovery.

Tuesday, March 11, 2014

One year, in retrospect

It has officially been a year on March 1st that I had surgery!!  In the past few weeks, I went back and shared what it was like the first 5 days after surgery, then the 2 weeks in Inpatient Rehab. That now brings me to the next 11 months after that to recovery at home!!  I want to go , month by month, the best I can, to share the improvement that I lived thru in the past year!! Before and After my surgery, I was told "What you regain in one year, is what you are left with". Even tho I do believe that these things that "I am left with" can improve overtime. I don't know if its an improvement as far as getting use to them, finding tricks to deal with them better, or true changes. I think its a combination of everything.

Going back home: 

We drove to Phoenix for me to go have surgery.  We knew that I probably would need to fly back, depending on my condition. We just went with the flow.  I was discharged from the Rehab center on March 15th. I flew back home on March 18th while Jay drove. :)  We didnt tell the kids! It was a surprised! This is my first picture with the kids, shortly after arriving home! It was so wonderful!!



I walked in the door using my walker and sat on the floor right away because I knew that our dogs would go crazy and didnt want to be knocked down.  haha Our dog Shiloh was so happy, he was running around the house in circle, just so excited haha  My mother in law also had already prepared my kitchen chaise for me :)  



See, when I had eardrum graft surgery 18 months earlier, I had insane vertigo so awful I couldnt function. I didnt want to just be in my bedroom in bed, while my family was downstairs. I may of need to rest and just sit, but I was not going to be in quarantine. Some people may enjoy being locked in a room away from the kids for days, but not me. I love being with my children. I love being around the people I love.  "Me" time was always so overrated in my book.
Five years ago, when we re-did our kitchen (by ourselves woohoo)  I put a chaise in front of the fireplace that is right next to our kitchen. Our kitchen was like a small box before, but we decided to take it in what was once a very small family room and make it a much larger kitchen (its still not that big, but its much nicer for our family) I later found out that when there is a fireplace/sitting area connected to a kitchen, it is called a "heart room".  My heart room is my heart room alright. I have spent so many hours there, recovering from bleeds, eardrum surgery, brainstem surgery. Countless hours of recovery in that chair :)   Here is why I preferred that chair to my bedroom, and I will leave it at that, no explanation needed:



Like I said, no explanation needed :))    Also, being there, I can still be a mom. My kids know their mom is right there to talk with them, and of course, tell them what to do. haha

This is a personal choice, you may want to lock yourself in your room, especially if you do have little ones running around. My youngest was 9 at the time of my surgery.  She understood that because I was right there, didnt mean I could just get up and fix her a snack, or play with her.  If I had a toddler around that sees mommy and not her limitations, that would of been more difficult and probably easier to everybody for mommy to be in her room.

Before I go over all my deficits improvements, from my cavernoma bleeds and surgery, I think I should make a list of them, and this way, I can go over each one as far as progress went/go.
From the bleeds (we call them bleeds, but they are in fact Hemorrhagic strokes), I recovered with time and some therapy, but some symptoms were there and never went away, a combination of permanent deficit from the bleeds , and just by the cavernoma being there.  These were:

-Hearing Loss
-Tinnitus
-My own voice sounding like I am talking thru a microphone, in a cave. haha
-Memory loss
-Confusion, out of the blue. (Not remembering if I turn left on red while driving{not good}), not remember which house is my friend on their street, even tho I have known them for years. These episodes would come very sudden and last between 5 mins to an hour)
-Trouble focusing and processing information
-Simple Partial Seizures
-Dizziness, Light headed, Nausea, Balance issues, Vertigo
-Left side of body Numb
-Tingly feet and hands
-Felt like i had to pee ALL the time (yes, its a symptoms, believe it or not) 
-Very sudden wave of incredible fatigue. NO physical strength.
-Paranoia
-Very high insatiable sex drive. Nah im kidding... teehee
-Difficulty walking, bending over (forget that)
-Headaches, daily.
-Very short of breath
-Odd feeling when swallowing
-Lots of sensory issues (noises hurt, cause dizziness etc )
-Cognitive issues (cant "think")
-Speech (slurred when tired)

So these symptoms were constant and never improved after a bleed and before surgery. I know some people who have recovered completely after a bleed, and living with the cavernoma is really not that big of an issue for them. Other people like me, gets worse and worse symptoms. The cavernoma's seep blood constantly, not enough to cause stroke like symptoms, but enough  to slowly disable you. I learned that this happens the most in brainstem cavernoma. Oh Joy! 

New deficits/symptoms from surgery were/are:

-100 % Numbness of entire body. I could of burnt alive and not feel it.
-Tingling of face/lips
-No Movements of Lower body
-Little movements of upper body
-Tunnel vision
-Quadruple vision, which settled to double vision at day 3. 
-Intense Head/Ears pressure
-Very weird hearing. Everything sounds very far away, cave like. 
-Very intense Tinnitus (ringing in the ears)
-Vertigo, so severe that any head movements  spins the room uncontrollably. Closing eyes helps only a little.
-Light headed. 
-Head/Neck pain 
-Totally forgot where the letters are on the keyboard, and how to count. 
-Right hand useless. NO fine motor skills
-Terrible depth, distance perception
-Loss of sense of taste

If you missed it, you can go read my account of the surgery deficits and how they improved the following days after surgery. The light headed/vertigo/dizziness really feel like they will last forever, and its beyond scary.  I would pick not being able to feel my legs to this any day.  I was somewhat ready to deal with it, because I have been dizzy for 2 years, and experienced it after eardrum surgery...but the fear of it being permanent was my worse one, of all the other things I felt and dealt with.  You simple cannot function.   However, I was told it made it worse for me since I had loss my eardrums.  


End of MONTH ONE (April)

I posted an update a month after I was home to share my progress:  "How am I doing? very well thank you! "    I will let you read that if you want a detailed account, because there are no sense of me repeating everything! However, I will still go over it some!
First, let me give you a list of the deficits from bleeds AND surgery that went away during Month 1, so i never have to talk about them again :)  So in other word, surgery got rid of those within that first month! 
-Seizures. GONE! 
-Numbness of entire body is gone. Still has some on left side.  
-Tingly feet, hands and lips
-Love handles (*sigh* Im kidding)
-Paranoia.(Can I get a Amen? this was horrible. Some people would say it was anxiety, but in my case, it was true felt paranoia-horrible. I knew it was gone the minute I woke up. Those mental "symptoms" were gone right away and i was myself again)
-Headaches!  
-Taste is coming back, sweet first, sour was the last one to come back and was distorted for months. 

These things were GONE pretty fast!!!  I was still in Rehab and noticed I didnt have anymore headaches! 

Walking: The first month was amazing as far as walking again. I went from not being to fell and move, to be able to move myself from bed to wheelchair after a week, to be able to use a walker in 2 weeks.  At the end of the month,  I can walk with a walker but I need a wheelchair for long distance like the mall or grocery store.  

Numbness:  To my amazement there too, I went from totally numb all over to gaining all sensation back without the end of the month. 

Vision: From Quadruple to Double vision . Very distorted when i look down.  I alternate the patch from right eye to left eye all day long, about every 10 mins.  I cant wear my regular prescription glasses. It feels like I have a complete new vision. My vision before surgery was not bad. My prescription is only -1.75 but i need them to drive.

Hearing: Still the "cave" talking and far hearing, but my head does not feel as full as before. I still feel pressure in my ears, but not in my head. It is slowly getting better.  I have  very little if at all, hearing if you talk behind me.

Speech: I slur my speech when I have a overload of brain multifunction. haha My brain simply cannot multi task.  I also "hear"  or say the wrong words all the time. I work VERY hard at articulating my words so i wont sound drunk. My french accent is very strong. 

Dizziness/vertigo/balance:  Still pretty bad.  I believe that if I didn't have those, I would of walked without  walker earlier. The walker was a way for me to walk normally with great balance. I could walk on my own holding on to furniture once I got home. I went up the stairs on my knees and down on my butt. That extra fat came in handy.

Tinnitus:  No improvement. I am now afraid its permanent and struggle to accept it.  I already had Tinnitus before the surgery, but it is louder than it used to be. 

Fine motor skills:  My right hand cannot hold small object. It is also very clumsy. I drop most of everything. Cannot write . At all. 

Sensory:  (The adjective sensory describes something relating to sensation — something that you feel with your physical senses.): 
Being affected by noise horribly and easily.  I cannot handle more than one noise at a time. I cannot "hear" if there is music and kids talking and you talking to me.  It affects me greatly and makes me feel like a bad mother/friend.   Somebody who whistle, sing a tune over and over, drives me nuts. 

Cognitive:  (In sciencecognition is the mental processing that includes the attention of working memory, comprehending and producing languagecalculatingreasoningproblem solving, and decision making.)
I still get confused and forget things that were just told to me or were just thought off.  No improvements or getting worse. I feel that this is permanent since it happened from bleeds and not surgery.  I find it degrading and frustrating for a girl that was always straight A's and once had 2 medical scholarship and 
I cant focus on anything. I begged a friend to stop reading me articles because I simply couldn't focus, even if i was not trying to retain the information, just any mention of anything i need to "understand" or "listen" was too much.  I simply feel that I cannot "think".  I can physically "hear", but its as if I don't.
I  slowly remembered where the letters where on the keyboards, but my poor fine motor skills in my right hand still made it very difficult to type. 
I can count to 10 without thinking too much about it, but after that, i have to focus. 

Every day   sh...stuff!! 

-I know far too well that I have improved so much in a month.  The way i felt after waking up compared to that one month mark is amazing.  I know how amazing I am doing and I have no doubts that i will still see improvements.   I cant cook yet, or clean, or do any of that. I am still too weak.  My stamina is improving and I do not need nap, but I need a good night sleep, 8 or 9 hours.  I spend my time mostly sitting down. Walking makes me tired, very quick. I can NOT drive. 

End of MONTH 2 (May)

Walking: I still need my walker, but long distance only. Where I used to need my wheelchair, i now use my walker.  Where i used to need my walker, I now use a cane :)  
Vision: Double is mostly gone!!! Its only there when I am tired late at night. Still distorted when i look down.  I still use the patch to write on the computer but I am able to take it off if I dont have to focus on what i am looking at. I still can wear my glasses. My vision improves drastically that month while everything else stayed the same.  As if my brain focused on that.

Hearing: I still feel pressure in my ears, but its steadily going away and as it goes away, i can hear better and better.  I still have very little hearing if you talk behind me.

Dizziness/vertigo/balance:  Its getting so much better, pretty fast by now. I am not afraid of it being permanent anymore. I can go up and down the stairs normally by walking, but I hold on to the railing simply because my vision is very distorted when I look down.

Speech: I still focus on articulating my words. I say the wrong words sometimes. I still slur when my brain as been working overload. haha

Tinnitus:  Same, constant, loud ringing in the head, at 10'o clock. (Think of your head being the clock, that's where the ringing is. Sometimes, 4'o clock join in on a duet)

Fine Motor Skills: Right hand still act like an ass. haha I can write by putting the pen in the right end but holding the right hand with the left. 

Sensory: 
Still the same. No improvement. I am afraid its permanent because its been there for more than a year now. I endure it as long as i can before telling my children to stop what they are doing. They have already adjusted well to my limitation, I am not going to make their world a complete silence hell.  Plus the tinnitus is so loud anyway, I know i will never know silence again. 

Cognitive:
No improvement there either. However, I now know where all the letters are on the keyboard and I am up to number 30. 

Every day   sh...stuff!! 

I feel pretty good overall!! I started to cook simple meals, do light cleaning. I dont sweep or mop or fold clothes, as those action makes me very sick and dizzy. Moving my head side to side is no fun.   I was given the ok to drive if i feel that I can, and can wear my glasses, but i am still a bit nervous.  I only go for very short drive by myself.

End of MONTH 3 (June) 
I wrote about it HERE

Walking:  I can walk just fine!! I am working on wearing high heels again, but not quite there yet. 

Vision:   I can wear my glasses, but noticed they are too strong when I look close.

Hearing:  Pressure is mostly gone. I still can hear better and better.  I still have very little hearing if you talk behind me.

Dizziness/vertigo/balance:  I still feel dizzy, but i feel so amazing compared to before surgery!! I have learned to live with this fairly well.

Speech: I still slur when my brain as been working overload. haha I still work at articulation but its more and more natural for me to talk now. I dont notice the effort I put into this. Its normal now. Like being fluent in another language. 

Tinnitus:  I saw the specialist and was told it is permanent brain damage.  I try to brush it off as even as today, i want to cry when I tell myself I will NEVER know what silence is, to the day I die.  Hear Tinnitus here.   I had to ask my daughter if she could hear the ringing in the  video, because I cant. Its a video to raise awareness on the effect of loud music (which too much can cause tinnitus temporarily)  My tests revealed very acute tinnitus. Different noises were given to me to listen thru headphone. If i couldn't hear it, my tinnitus was louder, covering them.  I was told I was amazing to deal with this as loud as it is.  I will take that.  I understood how bad it is when i was told the tornado siren was ringing and I could NOT hear it. 

Fine Motor Skills: Still the same. Hand is a butt hole. I sign by making a L. 

Sensory: 
Still the same. No improvement. However, my tolerance/endurance/acceptance to it is getting stronger.  

Cognitive:
Not much  improvement there either. I mourn the very smart girl that always had it all together. 

Every day   sh...stuff!! 

I feel Great, despite some discouragement!!  I feel so good physically. I feel better now than i did pre surgery.  The sensory and cognitive issues I acquired pre surgery are not worse post surgery, so i just focus on how amazing that was, because I know it could of made it worse!  I do a lot in the house now, but the kids have more chores than before. They are amazing, never complain, and oh guess what? I drive!!! I am insane and contemplating driving 2000 miles to Canada with the kids to my hometown. NOTHING is important anymore but the people we love.  Driving 2000 miles using my GPS is NO big deal to me, simply because I chose to only see the best of everything, every day. I am happy!  I am HERE.


End of MONTH 4 (July)


Walking:  HEELS!!!!!!

Neck Pain:  NEW symptom, 4 months later. Doctor said its due to nerve damage in my next during surgery, that is just now getting "un numb" so i feel it.  I cant turn my head very far to the right. (incision on the right side)

Vision: Distorted when I look down.

Hearing:  I hear fine!! Other than that one angle, my hearing is great. 

Dizziness/vertigo/balance:  I feel amazing!!

Speech: I still work on that one, but again, just like a language I am very fluent at. My french accent is not as pronounced anymore, like it used to be. 

Fine Motor Skills: Same. I am thankful for modern typing.   However, I am good again with a kitchen knives. I just suck at writing. 

Sensory: 
Still the same. No improvement. I am still adapting and do not expect those around me to stop enjoying what they love. I endure the much I can but I also use my judgement. My kids know that I do not have any tolerance of yelling/fights.  NONE.  The good thing is, they rarely ever do. When its just a lot of happy noise, i endure as much as I can, before asking nicely to move on to something else. 

Cognitive:
Not much  improvement there either. I call myself a "blonde". I feel stupid. It makes me sad.....

Every day   sh...stuff!! 

My depth perception is very bad.  I prefer be safe than sorry while driving and i know i piss people off  by waiting until a car is obviously too far to turn. Especially when I am turning left. haha Oh well.  I drop things on the floor (or my toes) all the time by thinking I have reached the counter /shelf, but have not.  I cut the top of a toe almost all the way off by dropping a bobble of champagne. haha OUCH.  I had to wear a brace. This did not stop me from driving up to Canada and spent the entire month of July there!  


End of MONTH 5 (August)

Speech:  I still slur my speech when my brain has an overload, when I am tired or sick. However, very slowly, its getting easier. You would not notice it at all. I only have to slow down once in a while and it comes naturally now with little efforts. 

Fine Motor Skills: I can now write 4-5 words, looks like a 5yo wrote it, but no more. Other than writing and dropping things by being clumsy, i can do anything. 

Sensory: 
Still the same. I am not giving up quite yet. 

Cognitive:
Not much  improvement there either. I am sad to the idea that i will never be able to focus good and long enough to ever going back to school like i always wanted to.  

Every day   sh...stuff!! 

I feel as if as month 6 is starting, I have a really good grasp of my new "normal". Not much have improved since Month 4, I feel great physically and I am just so thankful and never stopped counting my blessings. The kids are back to school. I can run the all the household errands and take care of the house and kids.  I know that i will never feel the same again, but I dont view it as a bad thing. Change is good if that's how you chose to see it.

This said, I still believe in the "what you gain back in a year is what you are left with" instruction that I heard over and over before.  But I can say that most of my improvements were made Month 1 thru 5.  So here goes 

End of MONTH 6 to MONTH 9 (September to November)

Running/working out??:Trying different things.  My breathing gets out of control. Its frustrating. I feel like passing out. The first 5 months, I recovered so much physically that running and working out was not on my mind, simply because I still had a lot to recover from mentally.  However, as I got stronger every month, I did try to include more and more physical activity. The first time I tried to run, was month 4. To my horror, I had a simple partial seizure. I didnt see the doctor, because I had those so much pre-surgery, and was told meds was optional. I just had to listen to my body. Now after 6 months, as i became more and more physically active naturally, with being on my feet all day as a busy mama/wife, I noticed how easy i get short of breath, and some crazy heart palpitation that makes me cough and have to catch my breath. I learned what my endurance and limits were.  I wrote about it HERE.


Speech:   I am officially fluent in Slur, have no "accent" and nobody can tell :)

Fine Motor Skills: Each month, I would say I gain about the ability to write one more words before my hand give in.  I figure that by age 125 years old I will be able to write 100 words without taking an hour break~!! hahaha   

Sensory: 
It did not improve much. But I have learn to adapt.  Instead of  asking the kids and their friends  to be super quiet, I moved the video games and movies in the basement and made a very decent hang out area there. I now have my main floor pretty quiet most of the time.  I noticed that I do much better cognitively in a quiet environment.

Cognitive:
I never noticed an improvement. I learned to write things down, use my smart phone calendar with alarm for each tasks. I slowly got better at paying attention to informative tv.shows, news etc.  I still cant process too much. 

Every day   sh...stuff!! 
I know my limitations, and when I can push their limits, and the signs that shows me I push too hard.    I learned that if I lack sleep, everything gets worse. Having extra sleep does not really make things better, in fact, its as bad as not enough sleep. 8 hours seem to be the magical number!! I used to only need 6 or 7 pre-surgery. I really need my 8 hours now. I dont always get it, but if i dont, i get either sick or start bumping into walls. haha  


End of MONTH 10 and 11 (December/January)
Running/working out??:  I saw a new Neurologist!! I talked about my breathing/heartbeat issues. He told me that because the brainstem control them, it was probably damaged all along, but I didnt noticed to what extend until i truly tried to become active again. It is most likely permanent, but I can build endurance.  My body would protect himself and always show me that its time to stop.
I started simple exercises like lunges, squats, floor exercises etc. I can do about 15 mins before I have to stop. I plan on building this up to at least an hour. To follow!!

Speech: I very rarely notice my way or articulating my words. Just like a language I was raised in :)  I still slur when I am extremely tired or sick.  
Fine Motor Skills: Same

Sensory and Cognitive: Same. Its my new normal. I wrote about HERE.

Every day   sh...stuff!! 
Lisanne, version 2.0, is almost complete. Thanks to Jamie, who has a terrific blog, for the term. I love it! Follow her on her own journey with a cavernoma in the brainstem. She has not yet decided on surgery. 



Last by not least,
1 YEARS!
Let's take back that first list and go over!!
After One full year of recovery:

So after ONE YEAR; 

WalkingPhysical Activities/: My goal is to build some endurance  back up!!!  I dont have asthma, but it is as if I do if i do anything that raise my heartbeat.  A rise of heartbeat makes me struggle to breathe, and I am on a mission to see if i can improve this.   STILL IMPROVING.

Numbness:  My left side is a little bit numb, but not that much.  It has improved a lot!  Its weaker, but its really not something that I think about or affect me. My hands and feet will get numb quicker than normal if same position too long, like it does everybody. What is 20 mins for most people is 2-3 mins for me. Like holding a phone, my hand gets numb quick, so i switch hand.  NEW NORMAL
Hearing: I "hear" just fine, except one angle, damaged that has been there a long time ago. My latest hearing test showed 20% loss in one hear and 30% in the other. So not as bad as the initial loss of 80 % and 60% before surgery!  I am convinced that my tinnitus contribute a lot at me "not hearing" right. NEW NORMAL

Speech: Its part of me that I talk with a good articulation. I am not being a snob. STILL IMPROVING.
Dizziness/vertigo/balance: SO SO much better. I rocked 4 inches heels at Jay's Christmas party, no problems!   UNLESS I am sick or very tired. I get very light headed, dizzy and I know that i have done too much. (I still experience these if I am sick, overtired or just did too much)NEW NORMAL


Tinnitus:  PERMANENT  (poop brown is a good color to define it)
Fine motor skills:  Its hard. But i can write. Still just a few words, but its improving in look :) just not so much on how much i can write at a time.   STILL IMPROVING or Permanent??

Sensory and Cognitive: Both PERMANENT and STILL IMPROVING. Simply because it will never be the way it used to. Progresses are very very slow, but I still believe in things getting better!! 

Aches and Pain: I've never been one to focus much on my aches and pain, but i will put it out there for you. My neck still cant turn very far to the right. I use those special dead angle mirrors on my car.  I have horrible headache if I have been doing too much or lack sleep. My incision site is still very sensitive. However, compare to the pain and physical limitation pre surgery, as you saw, I forget about those :)  STILL IMPROVING



From my own experience and the ones of others I
have come to know, the symptoms and deficits that came from pre-surgery bleeds (hemorrhagic strokes) are the ones most likely to be permanent in the end. The surgery makes them a LOT worse at first, but it gets better quicker than not. The new ones brought on by the surgery are scary, very scary, but they go away more rapidly.  Everyone is difference, but one thing I got from different people, is that the numbness and balance issues caused by the bleeds or cavernoma itself do improve a lot from the surgery!!  Its the other deficit, like Cognitive, Sensory, Tinnitus, that seems to be permanent damages.

However, the surgery seems to bring at least one very random permanent limitation, but not everybody! My right hand was totally normal for example, and have nothing to do with my cavernoma at all. It is clearly a surgery "injury".

I often wish I would of find Dr.Spetzler sooner and get the surgery sooner...before my cavernoma slowly affected my cognitive, sensory and tinnitus. I cant help but know deep down that these would not be there for the rest of my life if I had surgery sooner.  However, I am so thankful that I did have the surgery. I was deteriorating so fast after my second bleed... the third bleed came only 5 months after the second one, and its proven that they come closer and closer. If the third one affected my heart/breathing, i have no doubts that the fourth one would of killed me.  The Neuro at the ER didnt even want to believe that I even had "one", despite my record from my Neuro that said I did, because "if I had a bleed in the brainstem, i'd be dead". I know how fortunate I am to be here. I dont think I would be here today if I didnt have the surgery with these bleeds coming closer and closer.

All in all, I consider myself "cures" of many symptoms I had pre surgery, but they creep back in as a sign of my body being weak in those department.

But overall, I am very satisfied and happy. I have no regrets. I would rather recover from this invasive surgery , as long as it takes, ONE time, than recover from bleeds/strokes, over and over again!

I have been blessed :)