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!! 


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. 

  • 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 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


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.