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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Wednesday, March 26, 2014

Update on Erin!!!

Tonight, I want to take a few minutes to update you on Erin!

I got these updates off of her public Facebook Page: Erin's dizzyland. If you would like to receive her updates in your feeds, just like her page :)

Sunday, she posted this: 


"Good afternoon everybody! I am going to try and give a good update on how things are going. Please don't be discouraged or think I am. . . Right now I am considered a hemiplegic - I have movement in my right side, but very little in my left. They think they will get my left knee to work again, but probably not the foot. I can push my foot down, but can not pull it up or side to side. They said if they get my knee functioning that with a brace on my foot I should be able to walk short distances. They don't know if I will walk long distances or need a wheelchair I.e. Walmart, mall, etc. They are hoping to get my left elbow and shoulder moving also, but are still unsure at this point. I was told that if we get my shoulder and elbow moving I will probably always be clumsy in the hand. I laughed and said people won't know a difference. As of right now my left hand has zero percent movement on its own. They have given me tests for my thinking and for a brain surgery patient I am pretty good, but compared to most I am foggy. I say this to ask you to please be patient and understanding if I don't remember something or just can't seem to understand you. Sorry for the long update. You guys take care."



Pictured in what she calls "her new ride", with the man of her life, Mike, who has been disabled since childhood. 


Yesterday, Erin posted: "First time I have moved my arm since surgery! ! Also they reevaluated my eating and told me I could have anything I want to eat. I ordered peanut butter and jelly  I am cleared to eat normal foods instead of just soft food again. Also my OT can tell I really want my movement back and asked if they ever have free time can they grab me and I said of course. Getting an extra 30 minutes today. God is good!"






Erin is staying at the Acute Inpatient Neuro-Rehabilitation center, In Phoenix. The same Rehabilitation center I attended. I consider it the best place on earth. I am not kidding!!!   There she is, learning how recover some movement and to use her left arm. Erin, you got this girl!!

Fun story. My husband Jay once laid down on one of these green mat (they are several in the room), stroked a pose, and shouted "I am waiting for my massage!!" hahaha  These people are so human, so friendly, and it never mattered what jokes, and when, it was always very much welcome and never taken the wrong way.  It was great.   Back to Erin! 


Here she is, walking with assistance.  Go Erin!!



She is undergoing Physical Therapy, Occupational Therapy and Speech therapy.  Speech therapy is not only for speech, but it is also where you train back your cognitive functions.  In our brain, it's all related.  It's in speech therapy that I had to memorise lists, and focus so hard on stuff I had a headache by the time I was done. haha 


This is her latest message. She posted that today:  

"Today I had rehab from 8-12, then 12:30-1:30. We took an hour of yoga during that and it was nice. Tomorrow they have my review to decide how long I should be here. We also get to participate in 1 hour of gardening tomorrow and I am really looking forward to that. I am only required to take 3 hours of rehab, but take extra so I can get those results we are praying for. Thank you all for your continued prayers, they strengthen me every day!"


Last but not least, here is Erin's dirty picture.  (I had to say that *snort*)  



Bad Ass!! She is kicking ass alright, and I am so proud of her.

Excuse my language tonight. I am drunk... on mints... i think i chewed too many :)






A Stroke, a diagnostic, a courageous recovery, and a baby!



Recently, I have shared with you successful stories of "inoperable" brain surgeries, as I know how much of a God sent it is to find people who have gone thru this, and despite the long road to recovery, they not only survived the surgery with very good promises for the future, but they got their life back. As my title says, this is the courageous Story of Jamie, 
a beautiful, healthy, young pregnant mom of 3.   
She suffered a stroke without even knowing what caused it. 
Being pregnant when diagnosed, surgery was automatically out of the question. I want to share her inspiring and incredible journey. 
Jamie, I pray with all my heart that you will never have another bleed again.
Thank you so much for sharing your story with us.
-----------------------------------------------------------------------------------------

Hello,  My name is Jamie.  I am from Iowa.  I am blessed to have an amazing husband, Patrick, and three, soon to be four (April 8, 2014), beautiful daughters; Seeri (6), Jaelyn (4), and Linden (2).  I am a PE teacher at the local high school.

On October 25, 2013, I suffered a stroke in the Pons area of my brain stem at the age of 32 while 15 weeks pregnant with our fourth daughter.  I was in the best physical condition of my life and ate very well.  All my blood work was exceptional and my blood pressure and heart rate were very low.  Before this incident, I was completely healthy.  Needless to say, the stroke came as a complete shock to me, my family, my friends, and my doctors.  My original MRI did not reveal the cause of my bleed because the blood impeded the view of what was behind it.  So, my doctors had to wait until my follow-up MRI on December 26, 2013 to get a closer look.  

I was in the ICU at the U of I Hospitals in Iowa City, Iowa for 2 ½ days before I was transferred to their stroke recovery floor for 2 ½ days.  I was then transferred to the Covenant Rehabilitation Center in Waterloo, Iowa.  I spent three weeks there.  I tested out of speech therapy after two days, but completed three weeks of extensive occupational therapy and physical therapy.  I went to a skilled nursing facility after in-patient to test my ability to be more independent before heading home to my busy house.  I quickly realized that I was physically, mentally, and emotionally ready to return home.  I completed two months of outpatient occupational and physical therapy after returning home.

After my stroke, I took to Facebook to journal updates about my condition to my friends and family.  They eventually started to encourage me to write a book or a blog.  After much consideration, I decided to begin a blog.  It was the perfect way to express my thoughts, keep a journal that my family and I would have forever, and possibly reach others who have a condition like mine.  My first Facebook post was a simple thank you to all who had prayed for us and stepped up to help us in our time of need.  I mentioned in my post that everyone who had helped us had motivated me to “Do Better.  Be Better.”  That personal slogan of mine resonated with many and has since "stuck", hence the name of my blog.  My blog chronicles my recovery from my first CavMal bleed on October 25, 2013.  I try to be as honest as I can about my symptoms, my recovery, and my feelings throughout this crazy journey I am on.

(also on the top tab bar of this blog: "Do Better. Be Better")

Below I have listed my deficits at the onset of my stroke:

My head: I had tingling in my face from my nose down and my left ear had hearing loss. I could not chew food on the right side of my mouth because it was like my jaw didn't move right. I would look at items with my head shifted to the side thinking I was looking straight ahead. I had facial droop on the entire right side of my face that my doctors called "slight". I would have classified it as major.


My eyes: My right eye was affected by my stroke. When asked to "follow my pen", my right eye would not move past midpoint and would cicade or bounce. My vision was like looking through a kaleidoscope. I went a week and a half refusing to wear anything to correct my vision. I wanted to challenge my eyes so that they would get stronger faster. Eventually the nausea I experienced constantly became too much to handle and affected my therapy too much. I first got a solid eye patch and when one eye was covered; my vision would be clear and normal. I would switch it from eye to eye. About three weeks after my stroke, my right eye began to turn in completely towards my nose. Four weeks after my stroke, my patch was replaced with a film. This allowed for more light to reach my eye and did not impair my vision as much. Two months after my stroke, I received a prism for my lens. My prism is a sticker on the inside of my lens that refracts light to stop my double vision.


My left arm and left leg: My arm and leg were extremely stiff, heavy, and hypersensitive. I could best describe them as feeling like tree trunks laced with nails. Anything that touched me felt like ice and would send intense tingling down my body. Since I felt so heavy, I would tip to my left side and my balance was severely impaired. My sensory input was also impaired. If my left arm/leg was put in to a certain position while my eyes were closed I could not mimic it with my right side. I could not tell whether my extremities were bent, straight, resting on something, covered, etc. unless I was looking at them. If I was asked to close my eyes and hold my arms, palms up, straight out in front of me, I couldn't keep my left arm still like I was supposed to. The crazy thing was, I had no idea it was moving! I also could not touch my left pointer finger to my nose to someone else's finger. My hand/arm would waiver all over the place and I could not pinpoint my touch. Everything, even as light as a fork, felt like it weighed fifty pounds. I could not tell how much pressure I was putting on my arm or leg so I would fall if I was resting on my left hand or forearm. My hip would drop out or my ankle would roll out if my weight was on my left leg. I really had to learn how my muscles flexed and where my pressure points were so that I could mimic my right side and reteach my left side how to move.



My left hand and foot: My hand was useless. My fingers felt like wooden spoons. I couldn't pick up anything. If I did pick something up, it would take SO much focus and I could maybe hold it for five seconds before I would drop it. My in-hand manipulation, the ability to rotate things in your hand, was non-existent. I would have to move my entire arm in crazy ways to try to place something how I needed to. I could not move my fingers separate from one another. They would always move as five. I had virtually no sensation. Unless I was looking at it, I couldn't tell its shape, texture, or size. For example, I couldn't tell if I was wearing my wedding ring or not. I couldn't tell if my fingers were bent or straight. My foot was much the same. I still had good mobility but I couldn't sense when I was hitting the floor with my heal, my toes, or the side of my foot. Unless I looked, I wouldn't have been able to tell you if I had socks or shoes on. I had to really focus on how my leg moved and pushing my big toe to the floor so my ankle was protected.



On December 26, 2013, I found out that my stroke was caused by a cavernous malformation cavernoma (CM) located in the Pons of my brain stem.  My bleed was nearly 2 cm in size which was very large and filled most of the Pons.  My MRI scan also showed evidence of old blood, so more than likely it had bled before without producing symptoms.  This is the only CM I have; the rest of my brain is "clean," and as a result my doctor does not believe it to be genetic or familial.   After extensive research into my and my family's medical history, it is believed that my CM is a result of my "shitty luck."  Currently, much of the blood from my bleed has been reabsorbed back into my brain and healthy brain tissue has begun to form around my CM.  Patrick and I have decided not to have surgery to remove it.  The rarity of my CM, the location of it, my current pregnancy, and the uncertainty of my quality of life afterwards were all determining factors in our decision.  If it were to bleed again, the blood would push the healthy tissue away from my CM providing a much clearer and safer look and path to my CM for my surgeon to remove it.  I will pursue surgery by Dr. Spetzler of the Barrow Institute if I bleed again.  I am not going to allow myself to suffer through numerous bleeds.  I would rather have surgery, never worry about it again, and focus on living and accepting my new normal.

Today, March 25, 2014, I celebrate the 5-month anniversary of my stroke.  My deficits as they are today are as follows:

Memory/Cognitive Functioning: Was never affected by my stroke and still remains intact.  Thank goodness!  I do not ever want to stop being "me."

Head/Neck/Left Ear:  Movement and functioning are all completely normal and 100% functioning.  I have not had dizziness since week one of recovery and with the exception of the day I ended up in the ER, I have never had headaches.  Even the one I had was slight.  I would actually describe it as feeling pressure in my head rather than an ache.

Right Eye:  I have moved down to a 20 (started at 30, then 25) in prism strength to correct my double vision.  I see so much clearer because there are not as many grooves in the stick on prism as were in the other strengths.  I can still see them at times, but my vision is much improved.  We go back to the neuroopthamologist on May 19.  I pray every day that I will be able to wear contacts by June 1 because I hate wearing glasses in the summer heat.  BUT, if the worst I have to deal with is glasses, then I will take it!  My right eye is still not mid-line but it is only slightly closer to my nose.  You would have to really look at me to notice it.  My right eye, from what everyone tells me, blinks normally and tracks pretty dang close to normal.  Without my glasses, I still see double.  However, there are times when I am not sure if I am seeing double or just blurry.  If I look at something, the double image is to the left of it.  That double image is right next to it and I only see the outer left edge of it.  The image fades in clarity and leaves a few inches of space between itself and the actual image.

I can see up to about two feet in every direction singularly.  If I focus extremely hard on something I can usually get it to go to a singular image.  However, it takes A LOT of focus.  My neuroopthamologist says I can do this because 1) I am retraining my eyes and brain to communicate.  2) My right eye is my dominant eye and it really wants to remain dominant.

Left Arm/Left Leg: Both my arm and leg function at about 95% and feel about 90%.  I would not be able to run, jump, or lift weights.  BUT, I can do everything else at pretty close to the same speed I always used to and I walk completely normal.  My movements are much more natural and fluid and my strength is probably at 90%.  When I flex my quads, my left feels pretty close to my right.  My balance is probably at 95%.  My growing belly contributes that that a bit!  I never worry about falling.  Both my left arm and leg still feel stiff, especially my toes and fingers.  When I get fatigued they become stiffer.  Or if Patrick gives me a back, neck, or foot massage they feel stiffer.  Picture your extremities having dried wax on them or arthritis without the pain and I think you would be able to relate to what I feel. People would no longer be able to notice the deficiencies on my left side, but I can feel them.  My sensation in my leg and arm is probably at 95%.  I can tell now when I am on my toes or heals and I can feel how much pressure I have on my elbow, wrist, hip, knee, and ankle.

Left Hand: My fine motor function is at about 90%.  There is nothing I can't do, it just may take me a bit longer and require a little more focus.  My hand and fingers are moving much more naturally.  I sometimes just need to remind them to curl rather than stay straight.  They respond correctly when I remind them, but I never used to need to remind them!  I can type at about 80% of what I used to.  It is difficult because my pinky finger and ring finger still are a little disobedient and like to work as one a lot.  I do not think my sensation has improved much in the last two months.  It still feel things like you would if you were wearing thin gloves.  I can feel my wedding ring on my ring finger a bit more but still not enough to trust knowing if it would ever fall off.  So it stays on my right hand!

Stamina: My stamina is great!  Any tiredness and discomfort I feel is from my pregnancy and the daily changes my body experiences.  I did go on a walk with the girls last week.  I was wearing winter boots, pushing Linden in the stroller, and walking a few hills.  We went about a mile.  I took it very slow and could definitely feel the fatigue in my left side.  Everything just becomes much more stiff when I tire.  On the positive side, my heartbeat remained low and I never became short of breath, lightheaded, or dizzy.

So how do I feel?

GREAT!  My eye is the only thing that makes me feel sick or disabled.  I think it bothers me still because it's the only deficit I have that others can notice.  When I am around those that know my story I am not bothered by my eye.  But when I am around complete strangers I feel like they are trying to figure out what is wrong with me.  I understand that I could be crazy thinking this, but I can't shake the feeling.  It makes me want to start every conversation with, "I had a stroke in October." just to get the awkward tension out of the way.

Other than that I feel strong and healthy.  I am so unbelievably happy and feel enormously blessed because of the AMAZING people I have in my life.  Yes, there are moments when I am overcome by fear of the what if's, but 99% of the time I am just trying to do my best to enjoy my second chance at life that I have been lucky enough to receive.  

And then there is baby #4.  In 14 days she will bless our family with her arrival.  Other than obviously having a stroke, this pregnancy resembles my other three.  Same symptoms, same weight gain, everything.  She has been insanely easy on me considering I have been absolutely awful to her!  I am so ready for the moment when I hear her first cry, when she is placed on my chest, and I can kiss the soft skin of her forehead.  I don't think I am ever going to want to stop holding her.  I am just so ready for the feeling of overwhelming joy.  I have never been more excited or more ready to meet one of our children.


The last two months I have not experienced the major improvements that others would notice like I did the first three months.  But I consider becoming more "natural" in my movements a major accomplishment.  It means my body and my brain are starting to coexist again and there is nothing better than that.  Most importantly, I am slowly transitioning into accepting Jamie 2.0.  I am beginning to find peace with what has happened to me and learning to regard it as a blessing rather than a curse.  This mental and emotional shift has sky rocketed my improvement.

Thank you for reading!
Jamie

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.