Monday, December 29, 2014

To have surgery, or not to have surgery?

This is a very big deal for patients that are diagnosed with a Brainstem Cavernoma. Not only most of us are told Inoperable right off the bat and get used to the idea, but IF we end up, like I did, finding a Neurosurgeon that has a different opinion and suggest the surgery, it is not only new territory and scary, but brings us a whole new ball game of decisions.  There seem to be NO good decision.

Damned if you do, damned if you don't. 


These are exactly the words that Dr.Spetzler assistant told me over the phone when he called with an opinion after reviewing my MRI's. 

If only there was a way to know what is best to do.  Wait and see, or just put it all in the balance, hope for the best, and have the surgery?  Each and everyone of us is different. Our Cavernoma are different. 

I have spent the last 2 years doing a lot of research on this.  The best research sources being people. Real people, with real experiences. I took a lot of screenshots, a lot of pictures, a lot of notes. I made lists and changed them  as I learned more, and as data changed.   

I am NOT a doctor, and I do NOT want anybody to read this post as if it is from a medical book. However,  I found very important to let you know of my findings, which are nothing extraordinary, but these are details that do play a role in deciding if surgery is a risk you want to take.  I think 2 years and several dozens of people later, I can confidently share what I have found, and the patterns I have discovered.

Also, keep in mind that these patients had surgery by surgeons who were confident in their outcomes and none of these surgeries were emergency surgeries. They were all planned, since there are from people who CHOSE the surgery, which make a big difference.  Having emergency surgery on your brainstem is very, very bad news from most neurosurgeons!  This simply means that you had a severe hemorrhage and whether the surgeon was fully skilled to access the brainstem or not, he had to in order to save your life.

Here is what I have observed when it comes to brainstem bleeds. Surgery is NEVER considered if someone never had a bleed. Its very common for a surgeon to not consider surgery unless there was at least 2 bleeds. Especially if these 2 bleeds were not too far apart. I will probably repeat most of these things when I talk about not choosing surgery, because if you do not have surgery, and you have more bleeds, this will apply.

  • If you were referred to a neurosurgeon upon finding out you have a brainstem CM, it is most likely because it HAS bled.  However, most neurologists dont know much about CM, and may refer you to a surgeon anyway. 
  • For the people who have the genetic kind, which usually mean they have more than one, the brainstem lesions seem to be the one who bleeds or causes problems. How cruel is that?
  • If someone bled one time in the past, and it has been quite a few years since, the cavernoma is less likely to ever bleed again as opposed to a person who have already had a second bleed.  
  • The bleeds seem to  happen closer to each other than the last, either being 3 years apart, than 2 years later, or 18 months apart, than 9 months, than 6 months.  It seems to never fail. 
  • The deficits from the bleeds come back every time, but usually more intense and severe each time. Some you recover from, some you don't. 
  • Every new bleeds brings not only bring more symptoms, more intense, but some of the deficits you have recovered completely before, takes longer each time, or even stay.

Now, surgery, or not surgery? Ahhh hard decision to make!! 

NO SURGERY

Many have not had surgery simply because their brainstem cavernoma never bled or/and caused symptoms.  The CM was either found by "accident", because they never really had symptoms, or symptoms did indeed developed.  A CM does not have to have bled to cause symptoms.  Now, these symptoms are usually not life threatening. They are mostly a "pain in the ass" as we say.  The pressure of a cavernoma can cause some dizziness, painful daily headaches among other things. Only an MRI with AND without contrast can show if you have had a bleed. A CT scan will NOT!!  It is so aggravating for me to read on my support group things like "I cant walk, I am so numb, but ER doctor said No bleed from the CT". Makes me so mad, and sad, and helpless!!   Going according to your symptoms is not going to tell you if you had a bleed either.  You need a MRI with and without contrast.  

Once you are diagnosed, if a MRI shows that it never bled, you will be told that the best thing to do is to monitor it by having an MRI once a year. Your surgeon will determine how often he does believe a MRI is needed.  To do surgery on a brainstem CM that never bled is never going to be suggested simply because it would be like breaking a perfectly fine leg, put rods in it, to avoid having to do it one day? Giving you now issues that you would never have if you never break your leg.

If you bled once, it is most likely that you will be told that monitoring is the best way to go also.  From the "data" I collected, about half the people who had a cavernoma bleed once, didn't have another bleed, and half went on to have a second bleed.  The longer it has been since your first bleed, the more chance you have for it to not bleed again.  For example, a woman had a bleed when she was 32. She is 71 now, and never had a bleed again.  However, she does suffer from daily headaches and her right side is numb from that bleeds decades ago. BUT it never bled again!  On the other hand, another lady had a bleed in her early 20's, and a second one 5 years later.

That brings us to when surgery becomes an option, is that the best option? or is leaving it alone in hopes it does not bleed again better?

Here is what I observed when it comes to people who chose not to have surgery (after 2 bleeds ore more) (I personally struggled between having surgery or not after my second one. I have not yet made my decision when I had my third and worse one yet, who left me with the difficulty to swallow, breathe, and barely feeling my legs, which made it very hard to walk.....)

  • People with hereditary cavernomas may have had surger(ies) to remove symptomatic/bleeding lesions in other locations of the brain, but choose to leave the brainstem alone.
  • It goes like this :  You have a bleed, which by the way, is an hemorrhagic stroke. Time (usually months) spent recovering. Recovery is usually partial (left with some deficits, mild or severe depending on the severity of the stroke)   Every bleed led to a  little longer recovery either recovery  was partial or complete. Bleeds seem to affect the same ways each time, but each time seems to take longer to recover. 
  • The bleeds get closer together. No matter what.  100% of people I know who had 2 bleeds or more, had them closer each time. If it is not a big bleed, its micro bleeds, which mean your CM "drips" blood pretty much all the time. For bigger bleeds, usually leaving permanent deficits, once they reach a second bleed, a third one usually follow closer after the second one than between the first and second one.  For example, it could be: "Bleed. 10 y later a second one. 6 y later a third one."  Or "Bleed, 18 months a second one, 11 months a third one" (these were mine)  Or even "Bleed, 8 months later a second one.  2 months later a third one"  It seems to simply never fail. 
  • There is always that chance that it may not bleed again!!  I have met several people who only bled once, years and years ago.  It is once you reach the "second bleed" club that the ball change.  However, I was told that once it become active as of microbleeds or 2-3 bleeds, you only have 1% chance of it to just become inactive and never bleed again. 
  • People live in fear of "will it bleed today?"
  • 100% of brainstem bleed survivors are left with "some" deficits/change.  
  • Those deficits/changes may or may not affect your quality of life.
  • Knowing that the surgery is most likely to  bring you more deficits/changes than you have now, in order to avoid future disaster, is still a very hard pill to swallow.  
This bring me to choosing surgery. I have said it before.... the choice given reminded me of some Doctor House show where the patients is given one of those "You cant win" decision to make.  I never thought these existed in "real life"!   I was wrong, because there are a lot of medical conditions that are so severe, that the choices given to deal with them, one way or the other, seem to just not bring a "solution", but just basically letting you choose which way you want to go thru this nightmare, leaving you "some" control.    For me, it came down to my children.  I simply realized that they would prefer visiting me in a nursing home now, than a grave yard tomorrow.   Because I had more guarantee that this thing was going to kill me sooner than later, but didnt know when; could be today, could be in 2 years, but at least, getting rid of it today, was giving me at least "some" guarantee that my children would have me around, somehow.  There are no words to describe how it feel to just throw yourself in what seemed to be "the lion's den". I was told such horrible scenario by my local neurosurgeons, that of course I got myself ready to live the rest of my life severely handicapped.  It was a grieving process.  However, finding a confident neurosurgeons, who has done this several times before, makes ALL the difference in the world!    (Click HERE to see a list of neurosurgeons who have good success operating the brainstem) 

Okay, enough rambling... here is what I learned is very typical when it comes to surgery. 

SURGERY
  • People who have had the surgery all except one, woke up with more deficits than they had before the surgery. 
  • These deficits were in general much like the one caused by a bleed, but amplified. For example, my vertigo was out of this world, I could hardly hear, and I couldnt feel my entire body after surgery, as opposed to being dizzy, having "some" hearing loss, and only my left side numb.  
  • People also woke up with completely new issues/deficits. The deficits that people woke up with that they never experienced from a bleed have 2 categories.
    1)The ones that get better every day, or at least consistantly. These, people have recovered completely from.
    2)The ones that seems to have not improve, or so slowly that you just know it will be a long term thing, or permanent.
  • The deficits that people woke up with that were "just" an amplified version of their "already there" symptoms/deficits, were the ones most recovered from, the fastest.  
  • A lot of the symptoms brought on by a bleeding cavernoma that you dealt with and got better over time, were gone shortly after surgery. 
  • People living with micro bleeds, all my symptoms from that were gone instantly. 
  • For the deficits brought on by the bleeds, most people only recover to the point that these deficits were before surgery.  So basically the way they went in for surgery. However, some symptoms do get better: 
  • Numbness seems to have improved after surgery
  • Dizziness seems to have improved after surgery
  • Two people who had seizures did not have seizures again.  
  • The better a person is doing going in the surgery, the better the outcome. 
  • The worse (more symptoms, deficits) a person is doing going in the surgery, the harder it is.   In other words, if you have recovered from your last bleed completely, deficits will be less, and recovery faster, than if you are dealing with lots of symptoms right now. 
  • All in all, deficits from bleeds are most likely to be long term and permanent as opposed to deficits from surgery, who seems to mostly be recovered from.  

This said,  do NOT wait until you have serious symptoms or deficits for this. If you are feeling fine now, and you have been offered the surgery, this is the best time for it! 

Nobody can tell you to do, or not to do, the surgery. Listen to your guts!  However, you will never not have "doubts". Not with something like this. Its about making a decision, and believe in it.

I was told by Dr.Spetzler's team that Brainstem Cavernoma are the most agressive, as once they have bled, they rarely just "stop".  But there is always that chance they wont.  

All in all, both surgery, and no surgery, has pros and cons.  For me personally, I am very happy I did. Simply because I have no doubts that, as my cavernoma was becoming more and more active, I do not want to think about how I would be today, if i would still be alive at that. My last hemorrhage (which are considered strokes) affected my breathing, swallowing and heartbeat.  I am not sure what the "next step" would of been. Needing a breathing machine and feeding tube?

Anyway, there is a lot more to this than what I just shared.

Everybody is different. It is indeed very difficult to play this game. I call it a game, because no matter what choice we make, its like playing Russian Roulette.  We just dont know. We take a chance.

Knowing what I know, and seeing what I have seen, if this was my child, would I send them into surgery? If it was with Spetzler, yes.  If it was with the local neurosurgeon, no.  So, the surgeon, his expertise, knowledge and confidence, makes a whole world of a difference.   

Do not settle for what your local doctor told you.  All of us are told inoperable at first, unless we are lucky enough to have a specialist right from the start.  Be pro Active. Research and learn, and you will reach a confidence level that will enable you to make the right decision for you. 



Sunday, December 28, 2014

XINO Hearing Aids... a tease?

I saw the Audiologist for a hearing test and tinnitus assessment last week.  After the test, I saw the E.N.T, and he talked to me about the results.  I have both hearing loss and tinnitus hearing loss, and severe tinnitus, of course.   That that means, is that I do have some "physical" hearing loss, but my Tinnitus is loud enough to give me even more hearing loss.  It makes sense... try to hear your environment with a loud siren in your head... ah!

They both told me that I qualified for this new type of hearing aids especially for people with these type of hearing losses.  Just to think that I could hear better AND have relief from this, put tears in my eyes. I know that I will never ever experience complete silence again, but just to think of "some" type of relief, is a bit overwhelming right now.   Here is a short video about it:





If you are curious about Tinnitus and how it sounds, click this link
and listen to the sound file "Tinnitus, example 1" , and the 4000 Hz Tone, which is mine.   I hear that noise, and 2 others a little less loud and different tones, all the time.  It is worse at night, because there are no other noises around me to "cover" the sounds a little bit. They are always there, but when that is all I hear, they appear louder.   Jay bought me a white noise machine for Christmas last year. I cried when I opened it, because it means so much to me that he thought of finding something like that for me.   I have been sleeping with it on my head, litteraly. My left ear is where the loud one (between 2000 and 4000 depending on the day) is.   It really helps.   It fall of my head of course, but I am able to fall asleep before it does. haha 

I took this picture to show my "Tinnitus Support Group" peeps how I use it.



There are a lot of different type of white noise machine out there. Some even play beach noises, rain and a lot more. Mine has different tones that sounds like wind, fans and that kind of things, all in one.  For some reason, music is very bad at helping with tinnitus. No matter what, I can always hear the tinnitus, even with this machine glued to my ear... and with music, its just natural instinct to want to hear it and enjoy it, but the tinnitus makes that impossible. So just white noises are better for that.  

These Xino hearing aids are completely customized and it just sounds awesome. They are small and sexy, too. hahaha 




These hearing aids are like a mini computer (the gray box) which the cable goes around the top of your ear, into the part that goes inside your ear, is clear and practically invisible.  These hearing aids are super cool and gosh I can even say Sexy. haha The thought of hearing better plus somehow having a white noise machine constantly following me around is almost orgasmic to think about, so hey I will just call it sexy. It would be weird if I just explained to people that my hearings aids are giving me orgasms... even if I bet that's "almost" how it feels.  Ok, I  got way side tracked here...


*Clear throat*


 I "qualify" for this. Which apparently not all "tinnitus sufferer" do... but here is the problem... its EXPENSIVE and not covered.  It is about 2500$ per ears.   I just feel like I have been showed something I cannot have. I have been teased. I felt horrible enough that my new vision required me to get some "special' lenses that costed my poor husband, who works his ass off, 600$. Two days later I was told I "need" 5000$ in hearing aids....     Oh, I also learned that Tinnitus as loud as I have it, is proven to cause cognitive impairments! 

Man all of these "issues" works with one another don't they!  




Neuropsychologist, vagus nerve, and sanity

My Neuropsychologist appointment was December 1st. His name is Dr. Thomas Sullivan.

I really like him.  I always felt I need "brain" help, not "emotion", or mental  help...so I never thought of calling one.. but I reached a point where I believe they are both connected.  One affect the other. Makes sense.   I was very glad that this Doctor in particular agree to "take me on". When I called, I was told he very randomly takes new patients and it can take a while.  I left him a message in October, got a called that he agreed to see me and do the Neuropsychology testings in November, and was scheduled to see him December 1st.

I expected to have some testing done that day, but all we did was basically go into my medical history, surgery, recovery, and access what he felt was the cause of this, or that.  I was very impressed, and glad, that he truly know Neurology. I know that sounds bad.... You just know my experience with some neurologists... I am not sure why I doubted that he would... haha He took out one of his books and showed me a graphic of the location in my brain where the CM was, and after he asked me where my incision was, he showed me what nerves was most likely touched, or traumatized haha by the hemorrhages before surgery, and the surgery itself etc.    He started asking me questions , some of which I never even thought were  related. These were, and not limited to:

Do you cough sometimes, for no reasons at all? yes
Do you notice a rapid change in your heartbeat or breathing? yes, but i knew it was related.
Do you feel like you are going to faint, or do you faint? Yes, I cant do anything that has my heart rate elevated without feeling like I am going to faint. 
Do you sweat at night? yes
Do you find it hard to either lose weight, or gain some? yes
Do you have incontinence? i pee a lot hahaha and dont make me laugh or sneeze when my bladder is full!  teehee But that's because of motherhood and age. haha

There were more questions, but these I remember most because I didnt tell him about those symptoms. I was a bit confused as of why he was asking me about my "physical" state, since I was there for my "head".   After I answered, he said "Have you been told that your "Vagus Nerve" has been damaged?  I told him no. He explained to me what the Vagus is, where it is, and what it does.


"There are 12 pairs of cranial nerves which perform the sensory and motor functions in the body. Vagus Nerve is one such  cranial nerve that  also happens to be the longest nerves in the body that innervates the throat, thorax, abdominal muscles and other organs and has several functions, which is why it  is one of the most important parts of our nervous system.  The vagus nerve connects our brainstem to the body, due to which the brain receives, controls and monitor several body functions automatically. The vagus nerve forms a sort of electrical circuit while linking our heart, lungs, and gut to the brain-base. This type of ancient circuit connection is common in birds, mammals, reptiles and also amphibians. This vagus nerve connection resembles the USB or Firewire computer connection in many ways. It encompasses the major nervous system and contributes to motor control of physiological functions including gut mobility and heart rate. 

What are the Functions of  the Vagus nerve?

Some of the main functions of the Vagus Nerve include,
  1. Breathing
  2. Swallowing
  3. Speech
  4. Sweating
  5. Helping in keeping the larynx open during breathing (it makes  you cough when its working harder than usual. 
  6. Monitoring and regulating the heartbeat
  7. Informing the brain of the food that is ingested and food that has been digested
  8. The Vagus Nerve performs the major function of emptying the gastric region of food.


He explained that the Vagus nerve was the one with most likely the most damages, but the other nerves around it must of had some "trauma" too. The nerve next to the Vagus one controls taste and swallowing.   This brought me back to before the surgery, when Neuro's in the ER said it made no sense when i told them I had a hard time swallowing and breathing.  I cant blame them for not knowing that sometimes, the problems are from a nerve in the brain. hahaha I forgive them for treating me like shit and tell me it was anxiety, I really do :) 



After he told me about nerves, I finally had a chance to ask him what does this have anything to do with the way I feel that something is wrong in my "head", my mental state.  Why, sometimes, I am hit with this wave of confusion, this agonizing feeling of not being myself, or not knowing what to do with myself.  He said "because it is a lot more physically related than mentally related, your mental state is fine in itself, the brainstem does not control it. But the brainstem controls things that can physically affect your entire brain and body. Just like dementia is a symptoms of Alzheimer and not the cause of it.  Dementia is a word that I never wanted in my vocabulary.  I asked him if that meant that I had, or would have, dementia. He didnt really give me a straight answer, but he repeated that Dementia is a symptoms, not an illness, and not all illnesses are incurable.

I realized that I was very ignorant of dementia and  its causes, and how it "works". Just like cancer, or a stroke, or anything else... we can all get affected by it at some point in our lives. Hopefully temporarily!  Did you know that Robin Williams was diagnosed with Creutzfeldt-Jakob disease, and had said to his loved ones he didnt feel like himself?  When I heard that he committed suicide, my first words were "Why did he do that? Why was he so selfish and stupid? This breaks my heart now, that I have said that of him, and others...  This has taught me that suicide is not always 100% a choice...but that is another post. 

Here is more information about Dementia. 

What Causes Dementia?

The most common causes of dementia include:
  • Degenerative neurological diseases, including Alzheimer's disease,Parkinson's disease, Huntington's disease (a rare inherited disorder), and some types of multiple sclerosis
  • Vascular disorders, such as multi-infarct dementia, which is caused by multiple strokes in the brain
  • Traumatic brain injury 
  • Infections of the central nervous system such as meningitis, HIV, and Creutzfeldt-Jakob disease (Robin Williams), a quickly progressing and fatal disease that is characterized by dementia and muscle twitching and spasm
  • Chronic alcohol or drug use
  • Depression
  • Certain types of hydrocephalus, an excess accumulation of fluid in the brain that can result from developmental abnormalities, infections, injury, or brain tumors.

There are different type of dementia, one of them is called "Vascular Dementia"
"In vascular dementia, changes in thinking skills sometimes occur suddenly following strokes that block major brain blood vessels. Thinking problems also may begin as mild changes that worsen gradually as a result of multiple minor strokes or other conditions that affect smaller blood vessels, leading to cumulative damage. A growing number of experts prefer the term "vascular cognitive impairment (VCI)" to "vascular dementia" because they feel it better expresses the concept that vascular thinking changes can range from mild to severe."

Are you shocked yet?  I bet, like me before, you had no clue that dementia can be a symptoms of all these things. Some are permanent, some are temporary, some comes and goes.  Folks, I am not telling you that I have some type of dementia. I am telling you that I have experiences bits of it, and I simply know why.  Educating myself is the best thing I can do to understand it, get help when overwhelmed, and most of all, help others.  I will never look at a "crazy" person the same ever again.


... and if I ever witness, or am the "victim" someone being called "crazy" because they have issues, you will see a side of me you have not seen before.  


The doctor proceeded to tell me that stress and fatigue would be a trigger in my case.  I totally, 200% agree.  I have never been someone to stress easy, but I found that its not the feeling of being stress that affects me, its just stressful situations for me. It does not have to be dramatic, or full of emotions.  I can feel stress and start feeling confused and can't "think" if I am in a loud crowd for example. I don't "feel" stressed, but my body sure is.  Its really not the feeling and emotion of feeling stressed.   He suggested that I see my doctor and get on anti anxiety meds, just to keep the stress level down.  So I did that.  I have been on the "highest" dose my doctor can prescribe in the medicine I am taking, 200 mg of Wellbutrin, 2x a day.   He told me that I need it "physically" more than "emotionally" but the need is the same.   Thinking of it, mental illnesses are "physical", if the brain causes them, everything going wrong in our entire body IS physical. So I guess mental illnesses "are" physical... out of your control. Its not something you can control.  Its never someone's fault... to be paralyzed or have Alzheimer, in the end, its the body that let us down.

We didnt talk much about my trouble understanding, processing information, and what seems impossible for me to follow instructions unless its one step at a time, slowly... and my awful memory and "blanks" that I call brain farts.   He gave me 2 other appointments for this. They will be 3 hours each, 3 weeks apart, and I will have the results March 3. Results of my Cognitive state I guess. hahaha I hope I get at least a C... :) 

All this said, it was a very interesting appointment and I learned a lot. Being a psychologist, I think he knows that to tell Traumatic Brain Injuries (sounds better than brain damaged haha) patients that they are not going crazy mentally, its really the brain itself,  that is damaged.  

Keep sane, my friends

Wednesday, December 10, 2014

Tinnitus

My tinnitus has been driving me bunkers.

I don't talk about it often. It is something I dealt with my whole life to some extend, just not at THIS extend. When I was 13, my right ear drum ruptured and didnt close up.  I remember dealing with a ringing in that ear for quite some time. It was annoying, but not enough to really have me complain about it.  It was easily masked and forgotten about.

I've had constant ringing in my ears for 2 years now, going on 3 really.  Nothing at the intensity that I am experiencing now, but enough to really bother me. I thought I had it pretty "loud" until the moment I woke up from my surgery.   That is all I could hear at first. You know like those movies where there is an explosion and the person only hear a ringing for a while until the ears "come back"? Well like that, except it didnt come back.   Its like when your eyes adjust to a dark room and after some time, you can see better. Not all good, but better.  The room didnt get lighter, its your eyes that adjusted.  Its the same thing with tinnitus... our hearing kind of adjust.   Its hard sometimes to hear other things.

I can only hear the "tornado siren" if I am outside and its ringing at its peak (loudest).  Sometimes, I cant hear someone talk if their voice happen to have the same pitch as one of my 4 "sounds".

It is a very very dark and depressive thought to think I will never experience silence again. Ever. Never ever ever! Ok... nuff said...

Its so frustrating, because I dont deal well at all in a noisy environment.  I cant hear someone talk infront of me if there are other people talking close by.

I. Just. Cant. Do. It.

It's like my brain, or ears, or whatever, cannot multitask.  I have to focus really hard, and I manage. I often pretend to understand the conversation. I hear a word here and there. I make people repeat what they just said a lot.

I mean. A LOT.

Anyway, my tinnitus has been getting worse lately for some reason.  Its so loud that it is very hard to fall asleep. Jay bought me a white noise machine last year for Christmas.  It helps. Lately, I have been sleeping as close to it as possible. Haha It still only covers some of the noises in my head, but its better than nothing.

So, I made an appointment with my ENT for my tinnitus. He told me to go see him if it ever got worse. I am having it evaluated. There is no cure to this, so I dont really understand how this is a good thing to do.

Here is a test online you can do, weither you have tinnitus or not.  Basically, take note of the last Hz you hear. For you who have tinnitus, once you can hear anymore, it basically means that your tinnitus is louder than the sound that is playing , since its covering it up.  I cannot hear past 4000 and can barely hear 3000.


Wednesday, November 19, 2014

Scared, Helpless, and even more helplessness


It's been a while since I posted. The past 3 months have come and gone so fast, yet, sometimes time drag so slow.  I have meant to write much earlier than this, but I rarely had the time or energy to do so.

I have spent the last 18 months sharing about my physical recovery from brainstem surgery. I have done very well.  My handwriting and poor fine motor skills in both hands are still a struggle, but my handwriting has really improved the past few months.   I deal with pretty severe (loud) tinnitus, that I chose not to talk about much, because focusing on it, even for just a minute, makes me feel so miserable and overwhelmed. The breathing issues gets really frustrating, but I manage. My legs still feel a bit numb and asleep sometimes, but not enough for it to be an issue.  I am often very dizzy and very tired but the vertigo does not last all day and night like before surgery.  It is worse when I am tired, physically, or mentally, or both.  All in all, physically, i have recovered amazingly!

Mentally, has been more and more difficult.  I have been so busy getting my body back to "normal", that I have put aside the mental effects of brain bleeds and surgery.  I started having memory loss, confusion, difficulty processing, being very bad at understanding any directions or instructions, and understanding things wrong, before my surgery.  The surgery has made this worse, but it is only very bad when I am tired, sick, or stressed.

I have not really talked about this before, because I was so focused on the physical side of things. The cognitive side kinda was pushed to the side.  I also have not talked much about it because I am afraid.

I have seen a worsening of all these things a few months ago. Its as if, as my body got stronger, it sucked some of my mental abilities. Ah! As if I was made to be well in one or the other. As if my brain, or whatever cause this, does not have enough "juice"  to make both function the way they should at the same time.

I have experienced such confusion that I pull over on the side of the road. I also see things. I see deer mostly haha I see deer on roof top, in cars, in places they should not be. Not sure what it is about the deer.   I saw chewbacca yesterday driving a car.  Yes, please do laugh with me, please.



He is looking pretty sexy with that snow. He says Hi.  He didnt wave, I just saw him driving casually.

That aside, I have had a hard time going thru this "alone". I know I dont have to be alone...but sharing my fears and what they can mean is overwhelming to me.   Its very very difficult to work so hard and want to remember things so bad, or understand someone's words or processing what they are saying, or not mixing up messages and meanings. Its is so hard to give my all, and it not being enough. Its nobody's fault... it is just so hurtful I am the cause of misunderstanding among other things. I get so confused. I feel like I should just sit in a chair all day, not talk to anyone, not try to do anything...

It doesnt matter if someone know me or love me or understand me... It is hard for anybody to hear me talk just fine, live a life that appears normal, yet express that I am having such a "hard time". A "hard time" that they cant see at all. People dont think in my head. People dont hear what I hear. The noise that makes it hard to pay attention sometimes, mixed with the difficulty to process something.  It creates stress, and stress makes everything worse.

I need help.    I want help, but feel so helpless, because I dont see how this would get better. I dont know what "help" can give me.

I saw my neurologist to talk about this. He was clueless. He was clueless the first day I met him!  I need to find another one.  He referred me to a Neuropsychologist for testing .  The referral took forever so after one month, I went to see my Doctor and he referred me to one.  My testing is December 1st.

I am so drained from trying so darn hard. I cant handle any stress at all. I need help that I am getting to understand is impossible to get.  I feel as if my brain is a computer with little memory or power to it, and it works okay to perform basic tasks, but when you open a program that is a big larger, it slows down the computer... than open one or two more programs, and it just works so slow that no matter how "good" you are at computers, there is no use. It finally crashes and you end up losing valuable information. In my case, its forgetting something important, or understanding a conversation all wrong. If I am tired, sick, or stress, I may as well be shut down....

I try to reach out for help. I tell people all the time how this or that is difficult for me. I look normal... I act normal.. (i think haha)... I talk intelligently (I hope..) so there is really nothing that can "back me up" on how much I struggle.

Its a vicious cycle.. because the harder time I am having, the more stress it creates, and the more stress it creates, the harder time I have. Its to the point where I just feel like I am running on one bar or "connection" and its about to go dark.

You know, I have over 1000 views every day on this blog. I am so thankful that many people find information thru this. I never wrote anything this personal before, so I can understand why I dont receive comment, or encouragement, or support.  I created this to support others... along with facebook support pages... but I find myself feeling very alone.  It would make my day to read a few comments... to be encouraged...

Anyway, I have to go back to "physical life" now. That's so easy to do compared to just deal with this "head" full of noises and confusions....

Wednesday, August 20, 2014

Are my symptoms related?

This is a question i hear the most on my support page, simply because we, Cavernous malformation patients, have been told on different occasion that surely, "this" or "that" symptoms is not related to the location of our CM in the brain.  Thing is, only specialist in CM would know.  

Not only have you never heard of Cavernous Malformation before, but chances are, your family doctor has never had a patient with one either.  Can you imagine the massive variety of diseases and illnesses they hear about in med school? By the time you come to your doctor with a cavernous malformation, chances are he is pulling out his big medical book to refresh his memory before calling you back. Your family doctor will refer you to a neurologist right away.  The neurologist will know what a CM is, but he will not necessarily have much experience with it, if any.  You can read my post about "The importance of finding a specialized neurologist"  just so I don't repeat myself again. haha

The reason I am bringing this up, is because I have come across so many stories of people having such a difficult time to get help!!  It has been heart breaking to witness.  Here are some examples:

-A young woman in her early 20's went to her neurologist with symptoms she could not explain. She was dizzier than usual, her lips were numb and she had more pressure in her head than usual.   He told her that she was probably just tired, and the hot summer was bothering her head. He did not offer a MRI.   She posted her concerns the following day with us, because she kept feeling worse. We encouraged her to go to the ER, which she did. She was sent home again.  We didn't hear from her for about a week and were getting concerned about her. Turned out she had a stroke that same evening she was sent home and she had been in the hospital ever since.

-A woman early 30's described what sounds like Partial seizures. This is what I had.  You do not lose consciousness with this type of seizure.  One or both sides of your body gets very weak, with a wave/snake crawling feeling inside of you. You cant speak, and get very confused.  You do not fall to the ground, and its very possible for you to have a seizure and nobody noticing.  They are incredibly uncomfortable and draining, but they don't last long.    She described it perfectly and several of us told her we were pretty sure she was having them.  She went to see her Doctor. His response "If you do not lose consciousness, they are not seizures in any shape or form"   What???   and he is a doctor?

-I have witness quite a few people passing away because they were told their Cavernoma was inoperable. Most people just believe it, go home, and I have had some people actually telling me to not tell them again that they can be helped, because their doctor told them no...  It breaks my heart, but I cant force people to get the help they somehow dont want.

-People go to the ER, or their Neuro, A.L.L  T.H.E. T.I.M.E to be told their symptoms are not related, that they have anxiety or that they are simply paranoid.  I see it happen every single week. It is very rare that we have a member that is not turned around.  Doctors cant "just" sent you for an MRI based on those symptoms. They don't know enough about Cavernoma to know that they often bleed little before they burst or bleed more heavily.  A lot of us have mini strokes and did not even realize it. I understand that Doctors cant send us for MRI just based on "what if" this thing is bleeding again. They have to wait for worse symptoms, which are in this case a major stroke, or death. It is not fun, and it is not fair.  That is why I cannot stress enough how important it is for you to find a Doctor that listen to you, and believe you. If you keep coming across doctors that brushes you off, move on, and find another one until you find one that listens.    

A lot of us feel on our own while the Cavernoma is in our head, and after its been taken out.  The very little they know about this when its in your head, remains very little knowledge when its been removed.   When I saw my new neurologist for my post MRI, it was very clear that he was not sure what he was seeing.  At first, he pointed at my DVA (Developmental Venous Anomaly) and said "You had 2 cavernoma and one is still there right?"  I said "No, only one, you see another one"  He said "hmm no wait.. hmmm not that's something else" That's when I knew it was the DVA, so I said "Yes, Dr Spetzler said I had another malformation called a DVA near the CM, and he made it safer. " He then said "Yea, yea, oh yea it shouldnt cause you any problems, you're good".

This just showed me how little most neurologist know about this, and I just have to accept this and trust that God has his hands on this and if I ever happen to have more problem with this condition, I will know. I have accepted that there is no doctors around here I can fully trust on this.

This experience taught me so much health wise. No matter what you are diagnosed with, especially something life threatening, do NOT take the words that come out of their mouth like the word of God.  They do their best, but they only know, and can do , so much.    Do your own research, and do not be afraid to find the BEST specialist in the country!! If your child was diagnosed with a rare condition, you would want the best doctor for her. You would not settle for a small town doctor that didn't study it and have no experience with the condition, but you would do your research and find the best in the country and you would go to him. You would move if you had to!   THAT is what you have to do. I see a lot of people not seeking the best care because its more than an hour drive away, or inconvenient. Really? If you would do it for your child, do it for yourself!  Be pro active.

However, doctors do not like when you come to them and try to educate them. I cant blame them, but we felt very helpless when it was so obvious that we knew more about what was going on with me than they did.  To them, I was a death sentence. To me, I had learned and read of possible solutions. They were totally closed minded at them, even calling Dr.Spetzler a "drive thru surgeon". Well you know what, the "drive thru surgeon" saved my life, so it was worth the drive. haha

All of this said, here is a list of questions I find are very important for you to ask your neurologist/neurosurgeon.  If you feel that he/she answered with confidence and knowledge, chances are you found a good one :)  However, please check this list for the  best Cavernous malformation neurosurgeon in the country.  All of them have operated on the brainstem, which is always classified as inoperable by 90% of other neurosurgeons.  

Also, review this list of questions to ask when you meet a new doctor.
  

Wednesday, August 6, 2014

What to ask your neurologist/neurosurgeon.

It is very important to come prepared in order to feel confident that your neurologist/neurosurgeon knows about the condition. Chances are he does not know much. However, try to find a neurosurgeon that specialize in Vascular malformation/disease, and chances are he knows more.

I found that it is crucial to find a doctor that is confident in what he is talking about. If he sounds unsure, he probably have never seen a patient with this condition. Here are questions to ask:

Questions to ask your Neurologist.

  1. How many Cavernoma(s) do I have?
  2. Where in the brain is(are) my Cavernoma(s)Located?
  3. What does (location in which the cavernoma is located) control in the brain? (this helps you to identify new symptoms)
  4. I have (this and that) symptoms (don't spare anything, as little as you think it may be) Do you think its related?
  5. Has it bled before?  (If more than one, which one (what location) bled? )
  6. If it bleeds again, how “bad” can it be; what deficits can I end up with?
  7. How much experience do you have with Cavernoma/Vascular Malformation?
  8. What are the signs to look for to indicate a new bleed?
  9. According to my current symptoms, is there anything I need to avoid? (for example, anything that would elevate my pressure, like working out or anything strenuous physically gave me simple partial seizures. I was told to avoid getting my heart rate elevated)
  10. If my symptoms get worse, when should i go to the ER?
  11. Should I come see you if I develop new symptoms?
  12. How often should I get a MRI?
  13. I do (job) for a living, is that putting me at risk?
  14. Should I go see a neurosurgeon?
  15. Can you refer me to a neurosurgeon with experiences in Vascular Malformation?

If your CM has bled, most Neurologist will want you to see a Neurosurgeon to see if surgery is an option.  A lot of Neurologist will suggest the “wait and see”. I suggest that you do see a neurosurgeon anyway, just to have a better idea of everything.

Questions to ask your Neurosurgeons.

  1. Have you resected Cavernous Malformation before? If so, what location of the brain? How are the patients doing?
  2. Are you experienced in resecting cavernoma in (the location)?
  3. If the neurosurgeons tells you that he can, indeed, operate, ask him if he would do it strictly in case of emergency to save your life, or is he capable of performing surgery while you are still doing well, to avoid such a situation.
  4. What are the deficits I could have from the surgery?
  5. What are the deficits I can have from further bleeds, if I chose not to have surgery?
  6. If he is telling you to “wait and see”: What new symptoms would be an indication that surgery would be preferable?
  7. If I have a new bleed, would it be better to have surgery?
  8. If the neurosurgeons tells you it is inoperable, ask why. He will most likely say “location”


If your neurosurgeon tells you right off the bat that your CM is inoperable, this simply means that "he" cannot do it. has either never done it, or has done it with poor results, like the majority of neurosurgeons. That is why the brainstem is always "inoperable", unless you happen to have one of the best to diagnose you! There ARE Neurosurgeons that do indeed operate on the brainstem successfuly. Here is a list of the best ones. If he does tell you that he would operate if he "had to", that is simply an indication that he believe surgery to be the last resort, only to be performed as a emergency to save your life from a sudden bleed. The CONFIDENCE level of your neurosurgeon EQUAL most of the outcome! NO neurosurgeons in the world is going to tell you they can operate just for the fun of it. IF your surgeon tells you that, indeed, this is something he can do, with decent outcome and no major loss of quality of life, you can truly consider having surgery with him/her. Take the time to find out how many brainstem surgeries he/she has done and what the outcome for the patients were. Surgery is a very hard decision to make. None of us want to wait until we have a major bleed/stroke, and have to have surgery with a surgeon that does surgery simply because he was there, and save our life, but most likely leave us with severe handicaps. After many months of regrouping datas from people who chose to have surgery versus the ones who didnt, I wrote a post about my findings HERE. Maybe that could help you a little bit with this heart wrenching "damned if you do, damned if you don't" decision.

Friday, June 6, 2014

Those surgery related injuries to learn from!

One of the thing I heard over and over again at Rehab was "You are here until  we know you can go home and wont kill or injure yourself the second you walk in the door" haha  I wore a "fall risk" bracelet the whole time I was there, and they were very strict on what I could and couldn't do without supervision.  If you read my rehab experience, you know that I didn't only re learn how to walk, but I also cooked (which included using a very sharp knife with double vision haha) and had to prove I could shower myself without falling.   Joy oh Joy!  OH by the way, I learned that you are less likely to cut yourself with a sharp knife than dull one, because you will automatically be more careful with the sharp one and do not need to press hard.

However, unfortunate accident happens. To anybody, anywhere, surgery or not, rehabilitation or not!  The key is to learn from them!   I have injured myself bad enough for a trip to the ER twice in the past year.  Once in July 2013, and last one this past Monday.   Both are totally related to my awkward hands and wrong depth perception  resulting in horrible aim.   This was very severe right after surgery when I led my fork to my nose to eat, and snorted drinks thru my nose instead of my mouth. haha When I drive, I always take a tad longer than the person behind me would hope for.  It does  not matter if I KNOW that the cars are further than I see them, but I will just NOT take a chance!!   Its not that severe that it really makes me sit at a stop forever.  I rarely get impatient people, and I much prefer be safe than sorry.  SO as far as driving, I got this. However, for the "easy" jobs at home, I am not so good. I drop things every day because I think i am setting something down but miss the surface  by an inch.

In July, I "thought" i was putting a bottle of champagne (that I had bought for a
Independence day party the next day) in
the fridge, but I missed the shelf and it landed on my left middle toe.  I drop things on my feet all the time, but my hands are not strong enough to hold anything too heavy so it was never a big deal.  Makes me more mad that I cracked my tile floor than bruised my foot zillions of time.   Back to that bottle, it didn't break, it was intact, but after the initial sharp pain and making sure my bottle was intact, I looked down and saw my foot covered in blood.  I could feel how much pain my toe was in, but didn't realize how bad it was because the blood kept covering how bad it was.   I finally touched my toe and realized the top half was hanging. It had cut my toe in half but horizontally, not vertically.  Jay was in the living room and I was in the kitchen. I just said,  "I need help in here, I cut my toe." I am not a dramatic person. As much as it hurt, I was not crying or panicking, I just kept saying "I cut my toe". He didn't come until I specifically asked him to. haha  We went to the ER and i will never forget that, because I was laughing (at myself) and just limped to the counter and said "I cut my toe". The receptionist looked at me like "and... you are here for a toe cut??"  like I was crazy. I repeated, laughing " I think i cut my toe in half". She looked down and said "Holy Shit!!' and got me back. hahaha  They took care of me right away.  I didn't laugh anymore when they were cleaning it, and especially when they shot numbing medicine in there to numb it. That is just horrible. Jay was laughing at my face and I got mad at him. haha  This happened just 4 days before I was to leave on a road trip to my hometown, 2000 miles away.  Since it was my left foot, I decided that I was NOT going to change my departure date!  I got dissolving stitches for the "inside stitches and about 5 that I was supposed to go back to get removed after 2 weeks.  I wore a boot, learned how to removed stitches, and decided to endure the pain without pain meds so I could drive :) I was told the nail would not grow back since the bottle ripped it off, but it did.  It looks completely normal now. Guess what, it sucked and was painful, but I made it and my toe didnt fall off.

SO, that was my first severe injury.   Since then, I am extra careful when I put something down.  I have been dropping less big things. What I still drop are smaller things, mostly related at my poor fine motor skills.


Fast forward to Monday.  I was starving (just for your information, since its totally irrelevant to my story) teehee!!   and took my sharpest/pointiest  paring knife and cut an avocado in half.  OH wait, here, its the red one, from this IKEA set, and as cheap as they are, they are the bomb. I never use the blue one, it sucks, but the other two ware great!   I held the pit part in my left palm and aimed for the pit with my right.  I usually don't go as hard, but for some
reason, I did... and you guessed it, my perception of depth was off and I stabbed my hand.  Oh wow it was like an electric shock. Almost cool. haha   I knew right away it was bad because my thumb and index finger got numb right away and the pain, oh my!!    I put some pressure on there, wiped out the blood on the counter, went upstairs to tell my mother in law where I was going and just left. I didn't want to wake up Jay. I knew I could drive.  I went to Urgent care this time.  Its cheaper, and as efficient. Plus a great friend of mine works there and I didn't see her in a while so i figured I would catch up. She ended up being the one that cleaned my hand and put a bandage on it once I was all sutured up.    "Come back in 2 days" the Doctor said "So we can access the damage and see if you need to see a hand surgeon".  Urgh!!  I decided right away that my hand WAS going to heal perfectly and was not requiring a hand surgeon. hahaha      The doctor asked me how hight my pain tolerance is and I said "I convince myself than its high".  He laughed and told me "If you change your mind, do not hesitate to call me and I will call you some in"   I didnt want to take strong meds because I had a busy few days ahead, places to go and didnt want to burden Jay with driving when he is busy enough with work.  I have to admit it has been more painful than the toe, but I was so busy, including the set up of my customized workout that night, that time flew. Later that night, I went to stay over with Angelina at my wonderful friend that is moving to Chicago tomorrow.  I would not of missed that date for nothing, even if it was as school night.  We stayed up late drinking wine, had  a great time and wine turns out to be the best pain meds :)    My follow up appointment was yesterday and it is indeed healing great. It is very sore but I will not need to see a specialist. Yay!! From that, I have learned once again, to think before I do that. Such a ordinary action that I have to think about!!    When she saw my hand, the Doctor said "Wow you heal amazingly well!!"    :)  I do know that. :)

You gotta move it! move it!



One of the thing that I was looking forward the most at being able to do again was working out. I have not been able to work out since I was diagnosed, May 2012, so 2 years already! wow time fly!!  


The past year has been focused so much on getting back to a more normal self, taking care of my family and not depending on anybody for anything.  I am forever grateful that I was so blessed to prove my local doctors wrong with their "95% you will be in a nursing home" prognostic!!  Dr. Spetzler has a very long list of people who are doing amazing after trusting him with this surgery! I am far from being alone.  


Back to working out, I did push myself every day, which I believe the body is made for; just gotta really find the balance of how much is enough.  My limits never allowed me to do anything very strenuous, and cardio is what has been super hard for me because as soon as my heart rate rises some, I get very very dizzy and struggle to breathe.  Anyway,  2 weeks ago, I signed up for a YMCA Membership and this Monday, I had a customized workout set in place thru a program called Activtrax  (yes with my injured hand, no way i was going to cancel this appointment)  I did my first workout yesterday and I never felt so empowered, hopeful, somewhat depressed, strong and weak all at the same time before. haha   


I was a bit nervous to see if I could complete the workout, but determined to find out.  This workout is a paper you print out and simply do what machine and cardio it says.  Yesterday was arms work and cardio was up to me, but at least 20 mins, and some core work.   I must of looked funny when I sat down to do my first arm machine and my right arm flew the weight while my left struggle to pull it.   I got up and it is only after 1 mins of scratching my head than i thought "Wait, my left side is THIS much weaker than my right?!!  Yes, that's it!!"   SO here we are, it took me 15 months to notice how much weaker my left side is. Both my hands are weak from surgery, and not very coordinated, and I drop things  ALL the time, but I never did anything to show me how much weaker is my left side.   I also noticed that my right side could feel the burn, but not my left.  I laughed and somewhat enjoy my discovery! Makes me feel in control somehow!   For just a very quick 30 seconds, I felt like crying, because here I was, so excited to finally be there again, yet here was another challenge.  “How am I going to do this now?! “ I thought for a very quick moment.   

My thoughts went very fast in my mind and I wondered how I would be able to work both side equally  when the left side is weaker and number.  This image popped in my mind of my right side being all buff and muscular and my left side all fatty and weak. hahahaha  Made me laugh and I just remembered that even if I didn't feel my aching muscles, it didn't mean my workout are not going to work!! So I made the choice right then to push those depressive thoughts aside and focus on getting my left side stronger!!   I learned so much in Rehabilitation that I feel very confident that I can do this myself.  I have experienced the amazing things the body is capable of doing and healing like i never would've thought possible if i never got thru it.  

SO, I was able to do all of my arm workout.  In the past, I would of felt SO sore from this.  I was able to lift between 10-50 pounds depending on the machine. I used to do a lot more than that, but I am not comparing myself to before anymore. This is now, and I am happy with that. It can only get better.   

I was able to do 60 mins of cardio.  I did the elliptical, and old favorite.  There are handles you can put your hands and it shows your heart rate. Its very helpful for me even if its just an estimate!  I am learning a lot about myself.  I do feel the burn in both legs, so again I discovered that my left arm is the numb one, but my leg left is fine.  Its very nice to discover those things.   The assessment given by doctors don't go as deep as really finding out your limits, like how numb your muscles are. haha

So all this said, I was not sore this morning when I got up.  Believe it or not, I cant wait for the day that I feel sore again. You may think “You crazy!!” hahaha  The thing is, my  legs has not felt human in over 2 years.  I feel like im dragging some robot legs. I just want them to feel more. They do feel pain on the outside, but its like the inside is numb. I did feel the burn while doing my cardio and I was so excited haha  

All this said, I am very excited, so excited!!   I cannot wait to lose the weight I put on, but more than that, I cannot wait to feel, and be strong again!!  I dont care if I fall, pant like a dog, struggle to catch my breathe, fart, pee my pants, rip my pants (you see the picture) I WILL do it!!    

According to my plan, it will take me 17 weeks to reach my goal weight, both with exercise and good nutrition.  I just want to get back into all my clothes and be healthy/fit!