I am a 26 year old who in January of this year underwent brain surgery to correct a condition to stop my brain from descending down my spine. AMA
I am 26, and was born with both Neurofibromatosis type 1, a condition where my body cannot stop the growth of tissue along the nerves causing tumors, and a more recent diagnosis of Chiari Malformation.
I was born with both , and the Chiari caused my brain stem to descend down to my second vertebra in my neck, the ongoing joke with my friends was my brain was too big for my skull which it was.
Surgery was done to help corrected I and removal of part of my skull, removing part of my spine, and putting in mesh plates, also part of my skull was reconstructed.
I was having a lot of neurological symptoms, more than I realized. Many of them I was having for year and until a head MRI they were never all placed together.
I am still in recovery, and still have a lot of medical testing being done but live a semi normal life, apart from doctors all the time, and the life changes I have had to make.
Here is a link to my blog that I am horrible at keeping up on... I did however post about the first two parts of my surgery, which some pictures...
Also just some pictures of the process of healing with the whole brain surgery... now my hair fully covers the scar thanks to some awesome stylist.
Not anymore, there are several patches and titanium plates their now... but before hey I am short and you don't wanna mess with science.
That could be terrifying.
I had spinal decompression for chiari myself. This was my greatest fear.
Hey at least we would of had smart farts?
Shoulda let it keep going; you'd be a smart-ass in no time!
This made me laugh really really hard, so thank you!
Thanks for doing this, I hope you recover fully and never need to undergo surgery again!
How long did the procedure last? Does your condition affect your sight/hearing etc?
I'm really interested in becoming a neurobiologist, so the brain fascinates me. Any answers are appreciated, Thanks again!
I hope so too. The surgery was three and a half hours, but could have lasted up to 6. It has effected a little. I had and still have Nystagmus where my eyes don't track right. It especially acts up if I am tired or stressed, and is always noticed has been noticed by my eye doctor and such. Hopefully my new glasses will help with that. With hearing I get ringing in the ear, and have sound a really bad sensitivity. I am actually undergoing a hearing test in a couple weeks to test for hearing loss since the surgery was by the brain stem. The condition also still effects my balance, although it is a lot better was before. I also developed a stutter after surgery that after therapy is pretty much gone but does come out with stress or being tired, like stutters tend to do. Fell free to ask any other question.
Thanks for answering. What were the odds of the surgery being successful? I have been told that operations like yours are quite "hard to pull off". It's like pulling a chewing gum out of your hair without damaging a single hair.
I am defiantly not fully recovered, I loved the guy who did my surgery but did not like the clinic he was practicing out of so I switched places to take over my case after the surgery recently. It also had to do with they considered me healed and I knew I was not. This new places agreed, which is why I have all this new testing I am going through. I would say right now I am about 50% better than before. I don't have headaches all the time anymore but still need to be on medicine for it. The medicine is also a seizure medicine because I was recently showing signs of possibly developing them. I no longer have the constant hand and feet tingling but I cannot sit certain ways or I will get it in my feet still. I have also developed new symptoms since like I cannot look up with my head or down with my head without being dizzy. The brain is so tricky when dealing with, mine was compressed for 26 years and now it is not. Now they are trying to figure out if these are just healing symptoms or something I will have to live with.
I would suggest going to see a neuro-otologist and someone with vestibular certification in vision therapy. Your symptoms (nystagmus, tracking issues, dizziness) all sound like classic vision-vestibular dysfunction they might be able to help. :)
Source: recently attended a post-grad seminar for docs on precisely this
Thank you for the suggestion! I wrote it down and will research it. I assume the place were I see my neurologist has one since it is such a big a well know hospital but i could be wrong. Really its awesome.
Yay! PM me if you need more details on the specialties, not sure if you're in the US or not.
I am and thanks!
My stepfather had surgery for Chiari and his was a mess he had several patches fail and spent a few months in icu. Once the patch held, he had no lasting effects from the surgery. Except that the back of his head looks like a butt. There were so many attempts the skin on either side of the incision started to give out so the doctors just kept using skin from further out and stretching it.
I'm glad yours went well OP. Take comfort all his complications were within days to a week of surgery.
I joked that the back of my head looked like Sloth from the Goonies after. 5 months later it's just now looking normal. I never really had a normal skull in the back due to a mild bone malformation, so once swelling went down it was really odd feeling the back of my head and it feeling "normal". I hope that my symptoms will in time go away. Glad your stepfather is ok!
Brains for mush person delated their comment but I was answering in the process of answering it so here it is....
While there is brain functions it is the brain stem which is like the central to everything so maybe until I am in my 40's or 50's. At some point the brainstem gets so low that you start having seizures, and your develop a cyst on your spine that is filled with spinal fluid because it is not getting to the brain properly.
I'm not really knowledgeable in human anatomy so excuse me if this is a bit silly to ask: If you take part of the brain stem and plant it, can you grow more brains?
Yes, but what the CDC does not what you to know it that it is how the zombie apocalypse starts so shhhhhh.
Wow! Ok, yeah, I won't tell anyone but holy shit! Is anyone doing anything about it? Like NASA or something?
Actually, NASA has already planted brain stems. On mars. That's who Is driving the Curiosity.
So in others words we are all screwed.
I actually also had a chiari decompression surgery. The doctor said that it wasn't a very severe case so he would just open the base of my skull and top vertebra to give it room. When he got in there, apparently there was enough inflammation that it had to be removed. My parents said it was the longest 7.5 hours of there life while I was in surgery. This was in 2008 and I feel great now. Headaches are few and far between. Good luck to you in your recovery!
Glad you are doing better! I have to keep reminding myself that the surgery was only 4 months ago with all the symptoms I still have and that I have to give it time. That is a long surgery! Mine was only 3.5 hours. How long till you could say you felt recovered?
I was back in school and I really felt back to "normal" a couple months later I guess. 1 month post op I had to return to the hospital. I had apparently contracted chemical meningitis during the surgery. That was a pretty painful time, but it went away with antibiotics. (This, though it sucked, was kind of a blessing because the doctor or hospital never sent me a bill.) Sorry I can't exactly remember the timeline of things, because you know, drugs.
hey it's all good, drugs are well, amazing... I am so glad I am living now and not like 100 years ago... I would for sure be dead.
Congrats on the recovery. Nothing to ask, just wanted to add that my mom had the same condition. Before the surgery she would spend whole days locked in her room with all of the blinds closed and it was pretty scary/ hard to understand as an 8 year old. Her doctor told her it is a condition that could be passed along genetically so fingers crossed my sister or myself don't have to go through that.
Thank you! I will also cross my fingers for you. It was my 7th surgery but by far the worst, I think just because of the location.
What were the symptoms you realized you were having??
I was having really bad headaches in a the back and top of my head which is not really a normal place. My doctor placed my on migraine medicine even though I did not have symptoms of them and it did not go away. Thankfully he believed my pain and ordered an MRI, and the MRI showed it. At the neurologist I was shown to have balance issues, Nystagmus where your eyes do not track right, tingling in the hand and feet. The "coolest" one was when he had me stand up and hold my arms up like I was holding a pizza and close my eyes. He counted down from ten and by 7 I was super dizzy and had to sit down.
Wow that's pretty scary, apar from the headaches I can see how symptoms like that might go on for quite a while without being noticed! Hope recovery goes well!
It was all pretty crazy. I went from wondering why I was having these horrid headaches everyday to surgery three months later. I was lucky though. Chiari is on the rarer side and its harder to diagnose. Lots of times people go though the ringer before they know whats going on. I just had a good doctor who listened.
How rare is this, could my mum have this?
It is one in every 1,000 people I think. Your mum could have it but a lot of people just have really bad migraines. I was also having a lot of neurological issues with balance, and tingling in my hands and feet and my eyes not tracking right to name a few. You can't diagnose Chiari without an MRI of the head and neck so if your mum is worried it could be worth checking out. My big read flag was I was on a daily migraine med but still having really bad headaches and they were in the back of my head not the front.
Here is a link to more info if you want it http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115
She gets them on and off and nobody knows why, but thanks for the great answer and ill ask her about it.
fingers crossed she gets the answers she needs!
What was your emotional process like leading up to the diagnosis and eventually the surgery? I know brain issues can be rather frightening in the sense that you never know what can be damaged in the process.
Thanks for doing this. It sounds like things are going great now and I hope they only get better.
I was an emotional reck when I was going though testing, especially because I was also showing signs of Cancer. (There is no cancer) Once I knew what was going on and had the diagnosis and did the research I was actually pretty calm which freaked people out. They though I was hiding it all and "needed to talk", but to be honest it was my 7th surgery and even though it was scary I decided to listen to my surgeon when he said, "It's my job to worry about what is going to happen in there." I also had some really good friends that send me care packages and went out for drinks and stuff.
The day of the surgery we had to leave super early. The hospital was an hour and a half away but I life in Illinois and well it was January and it had snowed like crazy the day before. I started to get a lot more anxious once I got to the hospital but things moved really, really fast and I met a lot of people. The staff was also really good about keeping you calm. I remembered being rolled into the operating room and the guy asking me what movies I had seen recently, which really helped, because when I get in their I cracked a joke about finally being able to see cool images of my brain.
The process after was a lot more on the emotional side because it was brain surgery. I would start crying for no reason and get frustrated really really easy. I still deal with frustration but it is not as bad and I don't break down into random crying anymore which is a good thing.
Thank you for your answer. I can't imagine having that many surgeries to fix one thing. The few I've had terrify me. I really hate the thought of being unconscious while someone has my life in their hands.
Do you know if you will need anymore brain surgeries in the future?
No problem! I have only had one brain surgery, at this point I am not sure if I will need anymore but the doctors are hopeful. We wont know till further down the road.
The other surgeries I have had were done on my kidneys as a child, twice on my left arm once to go in and do a remove and study the tumor to see if what it was and the other time was to full remove it and than place a cadaver (donated) bone into it because the tumor had eaten away at the bone. Those were all caused by the other disease I have Neurofibromatosis type 1.
The others were minor with getting my wisdom teeth out and then needed a minor repair done on my other shoulder but that my bad due to an injury. Both were a very fast recovery.
You could say I have been though the ringer, I am grateful for good doctors.
Wow. Thank god for good doctors. Thanks for sharing.
No problem. Thank you for your kindness.
Brave soul. I had all the exterior nerves stripped out of my head in January following a traumatic brain injury - it was years ago but wasn't until last year that anyone figured out what was wrong. I've got two three inch-plus scars on the back of my head and had most of the hair shaved off the back of my head. I'm only just back on me feet and starting to exercise again; I was a long-distance runner before but I doubt I'll ever be able to do that again. I'm still on muscle relaxants and some heavy duty painkillers.
So. Yeah. I'm sorry you have to go through this. Kick its ass.
Thank you! Its nice always nice to fun into someone who understand. My nurse friend keeps reminding me that brain surgery is very similar to a traumatic brain injury with the symptoms you go through. I still have both the muscle relaxant and pain killers too because, nerve pain is the worst hands down.
You are also very brave! Gotta love the battle scares... I was not expecting mine to be so bug but hey it is what it is. Hope you can run one day again, never rule it our and keep kicking ass as well.
It's been over four years since my original injury and I think I've had about ten 'good' days since. At best count I've spent over 2 1/2 years of the last four completely in bed. Even now that I'm better five months after surgery, I'm still completely wiped out by about 4PM and I stay in bed all day at least once a week. I've had all kinds of weird medical things my whole life, but nerve pain is the most excruciating.
I'm proud of my battle scars. My hair is slowly growing back, and I guess I'm lucky that the scars are on the back of my head so they'll be easier to hide. It's kind of been fun rocking the scars until my head grows back; in some way, I'm wicked proud of them.
Best of luck to you. Recovery is slow and painful and it sucks.
Same to you friend, and we have no choice is the scars so I am glad you choose to rock them. Hope you only continue to go up.
Wow, I read more in the comments, and my symptoms track so closely to my own. Mine all started after a botched spinal tap where all of my CSF leaked out into my lymph system and left my brain uncushioned and banging around the inside of my skull. It did create a chiari malformation, but that was only temporary while my body created and replaced all the CSF (and that took about a year). I couldn't figure out why I was having non-positional headaches after the healing; I've spent, at a conservative estimate, 2 1/2 years in bed out of the last four, and I've had the same headache every day for about four years.
As you know, that's bad enough, but it's all the other symptoms that start cascading. My left arm goes numb on and off; I can use it normally, but I can't feel it. I had mini-seizures for the six months prior to surgery - I'd simply black out for five or ten seconds at a time a half-dozen times a day. The long-term damage of my brain resting on the top of my spine left me with all kinds of permanent nerve damage and compression, leaving me with awful neuropathy in my legs and crappy vision.
Things are generally improving since the surgery, although I know you and I both have a long road ahead of us. My vertigo, mini-seizures, and neuropathy are almost completely gone. I've started physical therapy post-surgery because the surgeon had to take out so much damaged muscle tissue in my neck to get to the nerves. I get tired and exhausted easily, so I'm usually done for the day by 4 or 5PM. I'm sleeping better, eating better, working out a bit, so I know I'm on the mend, but it's slow. You don't notice the day by day improvements, it's when you suddenly realise "wow, I stayed up til 10PM tonight!" or "I walked two miles and didn't want to die afterwards!".
Best of luck!
Thank you! Best of luck to you too! My friend is always like you should go out and walk a couple miles you would feel better... they just don't get that I walk two blocks and I am ready for a nap. So glad things are getting better for you, and I hope they only continue too. I would have never thought this surgery would have caused all this, but the brain is just so delicate.
I am always amazed by how far one can come in just a couple of months with hard work.
Questions for your seizures did your like totally blackout? I have like five ten second moments maybe a little longer where like I get really spacey and just freeze. It not like spacing out, but more just I cannot process what to do next, total brain freeze. I was wondering if yours were similar. I am going to call my doctor about it tomorrow but was just curious.
Everyone expect surgical recovery to be tough, but I didn't expect that it would take so long. Then again, I had zero endurance, crap sleep habits, and severe nausea all the time so I started far, far back from the starting line. I'm astounded at how far I've come in five months, but I realise how much further I need to go. Frankly, feeling 'normal' makes me ecstatic. Being able to walk the dog by myself or go to the grocery store to pick up my medications seem like such minor tasks but I'm dead proud of myself. I'll work my way up to having a job again. Someday.
As to my blackouts, I don't remember ever losing consciousness. I only blackout fell once but that was because I was on a treadmill and I'm a gigantic spaz at the best of times. I guess the best way to describe them is that I'd freeze up momentarily or feel like I had a sudden unexpected system reboot. I hadn't noticed them for a while; it was only when watching a film one day that I realised "oh what happened? I didn't think I was that far into to film already..." None of them lasted long, or none that I can remember. They were brief moments that I just lost time. It sounds weird but I suspect your experiences are a great deal like mine. Mine have got much better, if it helps!
I feel like our experiences are so similar, it nice to find someone to talk too as much as its sucks at the same ti,e I totally agree with building the endurance bit. I know I have a lot farther to go, but hey I can go shopping on my own now if I remember my list and that is huge! Thank you so much for your tips.
Fellow zipperhead!! :) kudos for the awareness boost. what symptoms do you still have? Are you able to work stll?
I have not been cleared to fully work yet which sucks because I really want too... but some days I wake up and I am just like "oh man no" I still get headaches and tingling in the hands and feet sometimes. I also still have trouble with eye tracking. They are now more concerned with post issues I developed... I have really had nausea and vomiting, can't look up or down without getting dizzy, and am showing signs of developing seizures so it more testing. My memory also got a lot worse after the surgery and I have want I call "brain overload" and "brain fog" a lot. I will got out and if I don't have it planned or have a list I get really overwhelmed and have to leave... I also get like listen to my music and shop anymore or that happens which suck... I found like wearing earplugs in stores and sunglasses helps, but I most likely look crazy.
I feel ya. My memory was pretty shot after and still is. I am going to a speech pathologist to help and so far ive seen improvement. For the dizziness see if they can give you something for vertigo. I had mad issues with that immediately after bit meds help. Its a huge misconception that chiari is just a head ache. Im a year post op. Feel free to pm me.
Thank. I know I can do therapy for memory but insurance only covered so much so we were waiting to see if i needed anything else more serious first. I see my neurologist in a week so I will ask about the vertigo. Did they ever worry about you have seizures after?
I feel ya. Give yourself adequate time to recover before worrying about memory therapy. A lot of it comes back with healing. Try lumosity for some at home stuff. My ST told me it's a great brain work out. So far it seems pretty useful. Sorry to hear about seizures though. I didn't have that. They did keep checking me for it prior to surgery though. What symptoms are leading them to believe you have seizures now?
I went from having no sensitivity to light and sound to all of a sudden having one and it being really bad... wearing ear plug and sunglasses all the time bad, and I would not have a headache or get one before/ during/ after... also what I described as a lot of "spacing out" period where i feel like i just freeze and I cant really process what to do next or what i going on. I just freeze and tune out. They don't last long, but because I have been having issues with nausea and vomiting and tiredness they want to make sure that its not seizures. It very well could just be the brain healing.
The way my doctor discribed it is that areas of your brain that used to not be able to communicate, or at least not properly, suddenly are getting CSF. Essentially it's waking up. The problem would be if it doesn't go away with time. I got all kinds of weird effects on my body that would randomly show up after that surgery. I completely understand spacing out. Part of my ST is working on attention. It's like I was able to hear EVERYTHING and focus on nothing. She's helping me learn to tune out the background noise and focus in on one person or what I am doing. I've been making improvements but I honestly don't know if that will ever get 100% better. The tiredness should go away. The brain healing is a lot of work since it essentially controls your body... it's exhausting! How far post op are you? I believe there needs to be A LOT more research done on procedural options for this condition. Taking out a piece of your cerebellum seems to have a lot more effects than they are saying. I'm not sure if you know the history but way back when, they attempted surgery on 5 patients with a chiari and they all died so they didn't start surgically treating it again until the 80's. That's not long ago whatsoever when it comes to learning and treating a disorder of the brain. There are some really good support groups on fb if you are ever interested. They can help because some of the doctors are ignorant and it's nice to have someone to vent to that understands.
I will be 5 months in like 4 days. I agree it is exhausting, like I would love to get a job and return to a normal... I really really want that, but some day I just can't even function at a normal brain level. Everything overwhelms me, or I have a lot of freezing a just not computing moments.
I agree with the doctors, the place that did my surgery kept claming that, I could not be having any of these symptoms from their surgery and that I needed a phyc evaluation. I got one to shut them up and when the doctor said I was completely fine they said he was wrong, so I switched places. My new doctor was extremely upset, I told the story and you saw his face change to a deep shade of red and he had to leave the room. He came back promising to take care of me and so far they have.
I did not know that about the surgery, thats crazy... science comes so fare.. I assume 10 years from now the surgery will be totally different.
For any other people here who may have NF, we have a small sub over at /r/neurofibromatosis Also, did you ever go to a summer camp for kids with NF?
Yes for the NF camp! My bestie and I went one summer when we were in high school. It was an experience of a lifetime. We traveled to 3 different states and got to go white water rafting. We had both just had like really serious surgeries 2 years prior so it was nice to get away from being sick all the time, although I have yet to really escape that like she has.
sounds to me like you almost lost your mind
I think I may have lost it a long time ago...
Not at all. I like that name better... It most likely only has the name it does because of who discovered it, and they there is also that quote that everyone likes... "not all who wander are lost." something like that. So my vote is yes.
Hey man, I really hope ur alright. What kind of anasthesia were u on during the operation? tc man. Edit: whoops I just realized u were a gal. Sowie :/ Get well soon :)
I was totally knock out, although it would have been cool to have it be one of those where you are awake for. I think because it was both brain and spine they did not want to mess around, and its all good. =)
Glad to hear that you're doing better and recovery is going okay. I just wanted to let you know that I have nystagmus too, but mine is caused by albinism. The only thing that seems to help for me is not straining my eyes too much, getting enough rest, things like that. I do hope your symptoms/headaches improve.
Thank you for the tips. I finding that is what helps to most too, and knowing my limit and not pushing it.
I also had surgery for a chiari malformation 4 years ago. The scar is a cool story and I too like to brag about my "oversized" brain. Just take care of yourself. Do neck and shoulder stretches everyday. I've had a ton of problems with muscle tightness and it stems from the surgery.
Nice to meet a fellow Chiari person! Can I ask how long your recovery was? I am still recovering and feel like its been really long compared to others. I def have muscle tightness, so thanks for the tip. Do you have any lasting symptoms.
I found that at least in a 14-15 year old male, recovery was 2 weeks after a week in the hospital
I am jealous... but you were a lot younger. Glad yours was so fast.
I actually spent about a month in rehab learning how to walk talk and eat again. I got the surgery 4 days before my birthday. He said I'd spend a couple days in icu then they'd release me. Needless to say it was rough. I feel like I'm still recovering. The surgery was in feb and I played softball that summer and flag football in the fall. It really helped get me back in shape, but I don't think I'm near what I was. GET MASSAGES !!! I've been getting deep tissue massages on my neck and shoulders and it's working wonders. Just stay positive. I like that your doing a blog and posting like this, seems like you already have a good attitude. I have no lasting symptoms, other than the muscle stuff. Yours seemed way more drastic than mine. I didn't get the mesh and stuff like that. Did your other problem have something to do with that?
Sorry that was so long, it's a rare illness, you don't get to share experiences to often.
I still may have to do pt for walking and balance.. Right now they keep playing the whole lets see if it gets better game but it has been a long time now. So sorry you had such a rough time, a and glad you are doing better. My plate was due to a growth plate never fusing as a child and as I grew the soft stop got bigger. By time time he did the surgery it was bigger than a golf ball he said. The mesh and stuff is just because the Chiari was so bad. He had to do remove part of my skull and keep it out to make room and than mover that as well as remove two pieces of my spine and than cover the bottom part of the brain to give it protection.
I should def look into massages I bet they are amazing.
I hate getting MRI's to the point where I need drugs and a cloth over my face to help me get through so don't be afraid to ask if you need it. I am surprised your guy told you that with the tingling and balance issues, I know mine would have done the surgery, but to each his own. Surgery by far is not an immediate fix, it takes a really long time I am finding for my body to adjust to my brain having its new found space. I really attribute a lot to my general doctor and him doing his job.
My speech actually was effect but I did not know until I saw the neurosurgeon, and he was able to get me to slur my worlds and stutter when normal people would not. As for hearing I have always had very sensitive ears to noise, but I am not sure if that is a symptom. I know you can have hearing loss so I do go through a hearing test soon.
I wont sugar coat it, it was a really painful surgery but you really don't remember the pain months later. Only that it hurt. They give you drugs... enough that you sleep and I was never in so much pain that i could not handle it... in the beginning I was but that was when I woke up and it took them a bit to get the meds flowing. The only issues I have with sleeping on my back or sleeping at all is sometimes waking up with neck pain and pain at the surgery site. Also I have never been to a chiropractor before, if I were to go now I would want them to know what I was ahead of time since they removed part of my C1 and C2 and my brain is doing the whole resting outside the skull deal.
I would encourage you to get it checked out again. I do not regret getting the surgery even with the setbacks I have had. It has reduced headaches, tingling in the hands and feet a lot and I am sure helped with other stuff.
Hey fellow chiari patient. I hope your recovery is going well!
It is getting there. It is defiantly not as "easy" as I was told it was going to be and I still have a ways to go but I have always been a fighter.
It's been a while since you posted this but instead of scrolling through thousands of comments I'll take a chance. So you have mesh and plates in place to prevent the tissue descending but have you stopped the growth? Would it not then continue to grow and push against the plates eventually running out of room?
The hope is that it will not push or drop anymore, it is kinda all in a sack now. From my understanding the reason it drops in the first place is there is nothing stopping it and gravity is at work pulling it down. There is a rare chance that bone can start to regrow and compression can start again. If that happened they would have to go back in and then remove part of my skull again.
Wow fastest AMA reply for a 19h old post. Thanks so much! Fascinating.
anytime! It's the weekend so that consists of my watching Netflix and being online... living the highlife
Best of luck to you! I had spinal decompression surgery myself. Have you had random people ask you about your scar? I tend to mess with people when they do. How'd you get your scar? What scar?
Yes I do. I like going for the random stuff, like shark attack, or aliens. My hair does a pretty good job hiding it now but still get it sometimes.
Jealous you have a hairstyle that can cover it. I like the shark attack one! I may use that.
Go for it!
I approve so much. I already call myself a mutant bc of of the whole genetic mutation thing i have going on. Now I feel like I need to see this movie, even if it may or many not be horrible.
Is it possible that research into your condition could lead to developments in treating damaged brain tissue to regrow?
Not sure. Right now all the research is to figure out what causes is and if there is a gene like they think there is, but it's a good idea.
Hope all is well
Thanks you. Thinks are slowly starting the forge a new normal and I am ok with that. Life is all about change anyways. I find myself happier now after the surgery. I was just in so much more pain before. There is still pain but before was a lot more and pain can just get in a destroy.
How did you find out you had this condition?
Though an MRI. I got really lucky and had a good doctor who was persistent and listened to me when I said "this is more than just your average headache" I have heard horror stories of people going year of having incredible amounts of pain before someone listens to them. From the time the everyday head pain started and I had the surgery it was a 4 month process.
Ok ive been recently diagnosed with Chiari Malformations and now im scared shitless.
What symptoms were you having and how severe were they that it made you decide to have surgery?
I started off with really bad headaches that nothing took away and a persistent general doctor who ordered an MRI that found it. Several weeks later I saw the neurosurgeon and found out that I was very symptomatic. My eyes did not and still don't track right all the time. My reflexes were off. I had dizziness and tingling in my had and feet. He was able to make me dizzy with simple task and make me slur my speech easily. I also had trouble with not chocking on food and pills and sleeping. There is a lot more but those are the major ones I can remember right now.
How bad is yours? I know some people never need to the surgery while others do. Like I said before, it by far was not fun but no surgery is suppose to be and even with all my after struggles with are not that normal I don't regret doing it because there have been improvements.
I am show some of those sign.
I've started to notice I get tongue tied and frustrated easily when talking where a few years ago I never had that problem, balance issues while walking up the stair and looking up wards. I have to look down at my feet when walking up stairs most of the time.
And the headaches my god the headaches. Come outta nowhere and range from mild to hulk smashing my brain.
And my hand are super weak. If it comes to opening things like jars or most twist caps its a no go. And im a big muscular guy arm and body wise.
Discovered I had in the e.r. when I got a really bad headache and felt like pressure behind my eyes and slurred speak. Thought I was having a stroke or something.
The headaches are by far the worst. I think earlier I described them a someone cookie cutting my brain. Another one I had was my hands shock really really bad but no one knew why... almost 5 months after the surgery and its is almost gone in both hands now.
Have you consulted with a neurosurgeon yet? I would suggest going to a bigger hospital where they treat rarer things. My surgeon was a great guy and well known but I am very complicated person medical wise. If i had gone to where I am going now I feel like I would have had treatment faster for some of my post surgery symptoms instead of being told that they were not possible by other staff members.
I live in upper Illinois. So I think I am going to take your advice and try the chicago areas for my options on treatments and possible surgery.
Thanks for answering my questions and posting this. So glad your recovering and things are getting better. My biggest fear is having this surgery and not coming out of it the same mentally.
It's a small world after all (but you have to sing it) I live in Illinois too. My surgeon was out on INI (Illinois Neurological Institute) like I said he is a really smart great guy, but I would not go back bc I feel like they screwed me. My best friends aunt however had him for something and LOVES him to death so your know... I go to the University of Chicago right now. My doctor would not be able to take you on just because he Only originally treats child and considers adults with Neurofibormatsis but I do know that they have like a crazy amount of doctors up there and he told me I should of had my surgery with them. That could have been his preference because of the whole NF but really they have been great. They are teams of doctors and nurses who work together, and are all really nice even for it being a hospital. Also like with my NF it is one in every 3,000 people and they are the only hospital in the midwest that treats that, so you know they will know Chiari. When I was in the hospital post after my surgery some people did not even know what it was and they were my nurses.
also to rely mentally... I came out the same mentally. I do get frustrated easier and get overwhelmed a lot easier than before. Memory is also not the best but it has all been stuff that I have been able to adjust too and find little ways to help. If anything I felt like I could think clearer a few moths after the surgery, and that brain processing was at a better level.
Chiari sucks a lot. my friend had surgery in the last year. She loves the Nsorry i had brain surgery" excuse, but the headaches she has are terrible
My headaches have gotten a little better and meds help. I did have to go up on those recently though because going light and sound were giving me really bad ones. I do have really bad "brain days" though were my memory and function is totally off. Like this week I went to the store to get food and forgot my list. I though I would be ok, but I got so overwhelmed by not knowing what to do I had to leave. I was kinda just so overwhelmed by trying to remember and everything go on around me my brain just could not take it. My friend who is an ICU nurse relates it to you are pretty much coming off of having a traumatic brain injury, so you need to adjust. I also forget words when typing and texting all the time. Does your friend have any other issues?
Yeah, she's got 3 kids. 2 of them are 2 yrs and toddler ages. I'd count that as an issue. :) I go babysit every now n then when she just simply needs a 4 hour nap n quiet time.
I use this Any.Do android app for my to do list. Has a chrome extension and gmail integration. It's my basic list/calendar/dont forget this app. Always nice that it syncs from anywhere and keeps my Today/Tomorrow/Sometime on track.
I have a friend who has thee kids under three so I totally get you. Thanks for the tip I will look into it. :)
What does your recovery process look like from this point on? Are you anticipating any further surgeries?
Good luck with everything!
I am hoping for no more surgeries brain wise. If one is needed it would be something like to place a shunt, or do fix a dura patch with is holding my brain in place now.
Recovery as of right now is continuing to get things like balance,dizziness, and headaches under control. I also have been suffering from some really bad nausea and vomiting. I am going though more test soon to check if it is all related to recovery or something else like my stomach or kidneys so they know how to treat it.
On my part it is working on ways to set and keep a schedule so I can function better. The better I keep a schedule the better I am with memory and don't get what I call "brain overload" It's also working on my memory by playing those memory games on my phone and making sure I practice my speech because after surgery I developed a really bad stutter. I also kinda developed a I just want to be in my home all the time attitude so I try to make myself go out and walk once a day. It not depression more just with being off on balance and stuff you get looks sometimes and some days I don't want to deal with it. Overall things are going a lot better though. I got cleared to drive as long as it not over a hour away recently and that was an amazing feeling to have back.
Thank you for your well wishes!
I was going to ask about "brain" games but forgot! I've read some research about how the blue light emitted from electronic screens can be bad for your eyes, especially at night. I personally get headaches if I'm on the computer too long, or on my phone when it's dark. Has this affected you at all?
Light does effect me, but its more from the lights that are in the department stores. When this is getting really bad I know it's time for a med adjustment for my headache meds. I think it helps that I can turn my light setting down, so if my eyes or head hurt I can adjust. :)
I had this same thing. My surgeon said (afterwards of course) that it is one of the most painful brain surgerys you can have. I had the surgery at 15 and at 19 I'm still having headaches from the neck pain, although physio has helped. On the bright side my brain is exactly where it should be.
Ug.. I passed out from pain after words when they moved me from my bed to the ct scan... it was by far the worst surgery I have had. I still have neck pain and headaches... but the headaches are not as bad. My eyes also still don't track right and I cant move my head to look up or down without getting dizzy. I am hoping these things will pass but who knows. How long was your recovery? Do you have any other issues?
Whaaat? Fuck, why weren't you loaded up with morphine?
Edit: Oh, got it.
Yes it fing sucked. I am pretty sure I have no allergy and has a kid all I did was throw up. I would have taken that, but they were playing it safe.
Same. They even gave me a lollipop beforehand that I never got to eat. Then like a day after my surgerythe pain team took me off the morphine. Sooo I proceeded to vomit everywhere. Thankfully though my surgeon made them put me back on it. I was on two bags a day for 8 days..so yeah, I ended up being somewhat addicted. All in all not a fun experience. But my surgeon has been amazing and is still being amazing trying to help me figure out what's causing some other problems. So I wish you luck with your recovery and I hope the surgery eventually helps with the headaches. I feel for you.
Thank you... I was not on morphine bc I was tagged as allergic so it was Vicodin and tramadol, which in the beginning was not high enough and I woke up screaming at one point. My doctor upped it and I told them I wanted it every time I could so I was getting drugs like every 2 hours.
I have actually switched doctors since. The people who originally did my surgery keep saying my symptoms were all in my head and that the surgery was a success. I went to another doctor with everything and it took about 30 seconds for him to be like they are full of it and he took over my case. He has been really good, even responded to my case when he was on vacation so I feel really well cared for now.
Realized I forgot to answer the second half. My recovery took about a year. I find it hard to maintain looking up or looking down for long periods of time. Simply because they took out my c1 vertebrae. And the muscles don't always compensate. I'm also a bit wary of the things I do because I don't have a patch over the hole like I lot of people seem to have.
Thank you for your answers. I know I have a patch, but they also took out part of my C1 and C2 so that could be part of the issue. I know my neurologist is doing more when i see him next.
No problem. It's nice to talk to someone who's had the same experience. A good physio who's had experience with chiara could be a huge help to you. It certainly has been for me. I'm sure your neurosurgeon can give you some advice though as to what they think could be beneficial to help with the pain. If you don't mind me asking, why did they need to take out the c2? Can the muscles support that properly?
My brain tonsils and brain were descending down that far, and yes.. they did not remove the whole thing but the Lamina.
Did they take the tonsils out? They took mine out because they'd haemorrhaged to the sides. That seems to be the part that shocks people the most when they find out I've had brain surgery. That and the fact that the lower part of my skull is all squishy. I find it interesting about how the way surgeons choose the fix this. Mine seems to have just taken stuff out so that my brain floated again.
No they did not. I joke though because the did a craniotomy (removed skull bone) and did not but it back in one back and than in another part but in a titanium mesh plate to cover another hole that was a skull malformation. They did attempt to shrink the tonsils back up but they did not go very far... the hope is in time they will go up on their own now that the brain has room. So now my skull just has a lot of mesh, titanium, and screws in it. The other day the doctor was feeling the back of it and it was making a "knuckle popping" noise... it was really gross but he was checking the flexibility of the plate, which was also kinda cool.
Damn. Best of luck to you friend!
I delated my first response because I totally read you question wrong, so I apologize. Yes it is all functional brain tissue it is just functioning outside the skull, the human body is amazing like that.
It has nerves and neurons and...I'll just let Hank explain the brain because he is awesome...
Can you please elaborate on the kidney surgery that you had as a child? thanks.
sure. I was about 5, and the only way it was caught was because my mom was a nurse, I was super sick and no one could figure out why... medicine has come so far. The main artery in my kidney was not working so as you can guess blood flow was way off in my body. I had super high blood pressure, even on medicine levels for an adult. The were scared I was going to have a heart attack, seizure, ect. My mom finally though of my kidneys and had them checked out and they found it. So they had to go in and fix it and then put clips in and stuff. They then had to go back in because I started to get an infection and a scan showed it was from a forgotten sponge. My mom is some kind of saint and did not sue.
Forgotten items after surgery always seem particularly ironic to me. Did they make you pay to 'fix it'? (Assuming you're in the US)
I am not entirely sure. I am assuming they did because you know US heath care... but they may not have and their was just some kind of settlement I was not aware of.
Along with others as well, I want to say congrats on the recovery! My brother was diagnosed with a Chiari malformation about 6 years ago now after a lifetime of misdiagnoses. Two surgeries later he is now completely pain-free and living his dream! My big question, what would you compare the headaches to?
Glad your brother is living the dream now!
Thats a good question and one I never really thought of, I guess it depends on the day. When they were really bad it was like someone was cookie cutting my brain I guess is the best way to put it some days, other says it was like it as being squeezed into a tube that was too small. It is better now but I still get the pressure squeezing headaches in the back of my head. I have only had I think one of two cookie cutter headaches since the surgery.
What do you do for fun? Also what is your favorite ice cream if you enjoy ice cream.
I have no shame in saying that I enjoy the nerdier things in life like, learning and reading for pleasure. I also really enjoy movies and love animals... they are one of the things I am really nerdy about and get really excited about. Ice cream is a hard one I guess I would have to say mint chocolate chip but it depends on the mood I am in. Also random adventures with friends.. I like the just get up and go... some of the best memories are in those moments.
So basically what I'm hearing is that you were becoming an uber-morlock from The Time Machine? I'm not going to mess with you...or time travel.
You are the second person to reference this and I have never seen it! Totally going to now though, and I am in a good sparing mood.
I might have missed it, if you have already answered, but how far was your brain descending down out of your skull?
2 years ago, the MRI showed my brain was sticking out about 15mm out of my skull. Primary care doctor diagnosed it as Chiari malformation after seeing the results. Just curious to how bad yours had gotten before the doctors considered surgery?
I was diagnosed and than 2 months later had the surgery... it happened crazy fast. Mine was down to my C2 vertebra in my neck I think but it may have been further and I am not sure how far down that is. I will grab my records to see if they say.
all my records say is that "the tonsils extended all the way to the superior aspect of the C2" I know that is not much but it is something.
I know that is worse than mine as far as herniation goes, I think mine came to somewhere near the mid C1 vertebrae. I read the flow of cerebrospinal fluid is more what causes problems than the actual amount of herniation (15-20mm might not cause some people problems, while 3-5mm can cause severe symptoms, etc.).
Hopefully I will be able to find a neurologist/neurosurgeon soon which will look into it more. I've been plagued with headaches (especially when doing any type of manual labor), dizziness, fatigue, etc. since my mid-teens and severe migraines for just as long.
Hopefully you keep doing better as far as your headaches and pain go, the surgery looks like a pain but if it could help me lead a more normal life, then I'd be all for it if it was an option.
Not going to lie the surgery sucked, but I don't regret it. Sounds like you have a lot going on with your. I will keep my fingers crosses all goes well for you and you get the answers you need.
Studying for a pre-clinical board exam that's coming up in less than a week. I just trivialized your life experience into a mini-review. Never been so excited to see the words "Chiari Malformation."
I'll show myself out.
Glad I can help, if you have any more questions you know where to look. :)
Hey! My brother underwent surgery for Arnold Chiari Malformation! Did you experience any symptoms that could be attributed to partial complex seizures?
Not sure, and I only say this because I show symptoms of seizures but they have not been diagnosed yet and I have not been know to have one yet. Issue like my memory seem at times to get worse, so does concentration, and alertness, but this could also be due to medicine I am on. My neurologist is aware of this and I see them in about a week.
Damn dude. I was in a car accident a few years ago where I was getting my neck MRI scanned for soft tissue damage. They said I have this. They also said I don't need to worry about it unless I start showing signs like dizziness. Hopefully I don't need brain surgery for it and I can just not worry about it. I am almost 27 years old.
A lot of people go through life never knowing they have it, or find out they have it with something happens like like with you. (Hope you are ok btw). Don't get too worried unless you start getting horrid headaches or like the crazy dizziness and such. Can't live life wondering about the worries of tomorrow or it will steal today from us.
how many hours did the surgery last ? are you better now
Surgery lasted three and a half hours. While I still don't have the horrid headaches all the time and some of the otter symptoms I still have a long way to go. The important part I guess is that my brain is now protected.
I have you tagged as droopy brain
That works, technically my brain is still outside my skull.. now it's just protected better.
Would it have been possible for your brain to end up in your butt?
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