Tuesday, March 11, 2014

One year, in retrospect

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

Going back home: 

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



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



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



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

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

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

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

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

New deficits/symptoms from surgery were/are:

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

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


End of MONTH ONE (April)

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

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

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

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

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

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

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

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

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

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

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

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

Every day   sh...stuff!! 

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

End of MONTH 2 (May)

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

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

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

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

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

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

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

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

Every day   sh...stuff!! 

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

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

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

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

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

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

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

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

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

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

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

Every day   sh...stuff!! 

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


End of MONTH 4 (July)


Walking:  HEELS!!!!!!

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

Vision: Distorted when I look down.

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

Dizziness/vertigo/balance:  I feel amazing!!

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

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

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

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

Every day   sh...stuff!! 

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


End of MONTH 5 (August)

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

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

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

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

Every day   sh...stuff!! 

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

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

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

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


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

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

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

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

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


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

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

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

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



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

So after ONE YEAR; 

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

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

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


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

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

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



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

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

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

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

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

I have been blessed :)







3 comments:

  1. I just found your blog & found it very interesting. I also have cavernous malformations in my brain & 1 on my C4 spinal cord in my neck I had 2 TIAs in years past but no one figured out what had caused them until Jan 2014,10 years later when I had a Stoke causing paralysis on my left side, I finally found a Nerologist who knew about this disorder & directed me in the right direction. Turns out mine was in my Brain stem had doubled in SZ since 1999 & I had 3 hemorrhages now & was told it had to come out, surgery was going to be in 1 week in Seattle WA & I lived in Boise ID. Needless to say I was Freaked out, but it hemorrhaged again & I was flown from the ER to Seattle. My incision looks just like yours they did a great job, it's been 5 months I have about 85 % of my function back on my left side, I have Double Vision still & wear a Prism on my right lense so the eyes work together but Im still hoping it will get better. I have hearing loss in my right ear just like you described, the memory loss & cognitive is frustrating or to many noises or talking all at once is Hard & people just Don't understand when things like that or others irritate us & we can't control this. I still have lots of questions about this disorder, like what should we Not be doing that could be dangerous for us, besides No blood thinners, Ibuprofen, Aspirin Etc. Have you learned anything on this? I Also would like to work but don't know what is to much on me & my Brain. Feeling Good most of the time but Frustrated with so much I Don't know about all of this, because right now I have 7 other cavernous malformations 1 being in my Brain stem but it was not close enough to the other one when I had surgery & it has bleed slightly once so we are doing MRIs every year right now to watch all of them. Thanks for your blog

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    1. I wish I was a better at expressing my words I just reread that it was terrible 😔 I forgot a lot of things I wanted to put down but that's how my Brain works now haha, but I still get headaches a lot or nerve shooting pains did you get those at all? My incision has been real tender again it was better for awhile but hurts again at times. Do you have anymore cavernous malformations? What questions do you recommend people ask their Nerologist on this matter to be better informed? It's like you said its hard to find good info online I've tried. Thanks again

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    2. Oh it was not terrible you did a great job at expressing yourself! Thank you so much for sharing your story with me! I am so glad you are doing well. That is pretty amazing after only 4 months!! What is the name of your surgeon? I dont have any more Cavernous malformations. I had the Sporadic kind, which usually only comes with one, as opposed to the hereditary kind, which usually comes in multiples. I should write a post about that. To your neurologist, I would ask where the other cavernomas are located in your brain and what symptoms to look for!

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