i had my 1st surgery for chiari decompression in Oct '11 and another surgery in Jan '12 to repair the durapatch when it started leaking causing softball size pocket of fluid in the back of my head and the worst pain ever. The dr put in 2 patches after that and basically said that i might need to accept that i might never be "ok".....Since then i've been in constant pain - somedays are way worse than others. I found a new NS and he says i have "cerebellar slumping" caused by my 1st NS taking out too much bone....apparently i'm told it should've been the size of a half dollar and mine is 4 times that size. I now have to undergo another surgery to fix the problem and this NS will make a "titanium bridge" so to speak to push the brain back up to where it should be and help alleviate the pain and pressure and also replace the patch because it is also leaking again :( has anyone undergone this surgery to "rebuild" the bone if the NS took too much bone out to begin with?? any help or advice would be greatly appreciated. this is extremely frustrating and only my fellow chiarians will understand this post and the pain i fell everyday.......... God bless you all - i pray for us every day!!!!
The brain slump or cerebral ptosis is what results from too much bone being removed as u mentioned. We have several members that have had this situation and did have the repair done.
The titanium sling or bridge is what is usually done to help keep the cerebellum from slipping further down onto the brain stem.
May I ask what type of patch was used...and if u were tested for EDS?I am asking bcuz of the issue u r having with the patch and the leaking, I am wondering if when the patch is replaced what will be used. if u have EDS, u may want to discuss them using ur pericardium to prevent further issues with leaks,.
Thank you for the welcome Selma :) The Dr used bovine patch both times... the new NS says he is using skin to replace this one this time and hopefully the last time.... the 3rd time is the charm right??? (i hope) i have not been tested for EDS - i have read about it here and will speak to him about it when i see him in a few weeks to schedule the repair surgery. Again i thank you for your time - i've been reading the posts for months here and finally joined tonight :)
First off, Im soo sorry to hear that u are going thru all of this! I had my surgery on march 6th of this year and it has been the most painful thing i've ever gone thru! I am still on pain meds and my neck stays stiff and hurts most of the time and the left side of my head (where he took the skin for my patch) is still numb but hurts at the same time if you know what i mean. The size of the whole in my head concerns me also, I can lay my hand on it and all 4 of my finger fit across it...and i can feel my heartbeat and when I sneeze, cough or laugh i have to hold it because it literally bulges out. I didn't know if this was normal or not. You are the first one I have seen on here that says your "hole" in the back of your head is that big. The brain slumping is what i am worried about also. I have been back to my ns twice now and am sched to go back in july for a last check up but he has not done another MRI or anything to see if everything is ok...wonder if i should ask for one?? Anyway, maybe i will post on here and ask selma what she thinks....I really hope everything works out well for you...it hurts me to know that anyone has to go thru this surgery at all but three times??? Unbelievable!! I will be praying for you...keep us posted..
Selma has such great advice :) If only we knew all these things BEFORE surgery!!! Lani14- So sorry things are going so badly for you! I luckily do not have slumping but do have a leak and have had one even after three surgeries and now a shunt and shunt revision. It is not fun. I too started with bovine and really wish that I hadn't. I have not been tested for EDS but as time goes on I really wonder!!! These are good things to know but hard to get tested for. I also found along this journey that I have POTS so that is a contributing factor as well. I think the number one thing you can do if find an NS that you really trust, has a great reputation and seems to understand words like EDS and POTS, or at least is willing to learn! It is very good that your NS wants to use your own tissue, I still leaked but my bovine patch had stuck to my cerebellum doing damage and I at least don't seem to have those issues now. I tried to get my first NS to use my own tissue and it was just not their thing! Especially where you need the bridge, I would want to know I fully trust this person!! I am so sorry they cut out too much bone, it sounds horrible! Sheri817- you really should get a follow up MRI to see why you are having these issues. That sounds like a HUGE dent in the back of your head! I have a hole and it changes so I can tell when my pseudomeningocele (leak) is larger but it is not that big. My head still feels weird too, it has been a year since surgery three and it does not hurt but feels odd and sometimes bothers me because I just wish it felt normal but it is not nearly as bad as a year ago :) Good luck getting an MRI, insurance companies can be very difficult to deal with but I would think with the right NS, all they would have to do is see the big hole in the back of your head and that might show you need an updated image! Good luck everyone! -zygy
Glad you found this forum, but sitting here so sad to hear your story. I had to have 3 surgeries too and it's not fun, but we do what we have to do. I think having all these surgeries really tear's the body down, so my heart goes out to you. It will be 2 yrs in June since all my surgeries and I sadly have to say I still deal with HA's ecspecially after being in a large crowd, or loud noises. I try to avoid them even though I enjoy them. I had a flow study MRI done and said everything was fine and my brain accturally went back to where it is suppose to be so everything is good. It's just hard to except not being able to do the normal things I thought would be easy in life. It helps us appreciate the little things. I also have as I call it a crater in the back of my head. It feels like a babies soft spot. I thought this was normal. I wish you the best, and yes 3 times in the charm. I still remember rolling into my 3rd surgery and I said to my NS. "Threee times and your out". I am thankful it all worked out, but it was a long journey for me and my family. Thinking of you.
Sheri817 - its funny you mention still being on pain meds - i take Fiornal, Motrin, Topomax (topamax) - i have scripts for Valium, Oxy, and Flexiril but the ONLY thing that works for me is Flexiril(a muscle relaxer???) and I only take it when I can't take the pain anymore. The back of my head feels like a giant weight - almost like I'm carrying around a kettle bell - I just wanna hold onto it with my hands - but the pain only subsides some when I finally get to lay back on an icepack with some meds and put my feet up and relax. - Does your head feel like that too? And it hurts all the time - and sometimes WAY worse than others? but always a constant throb? To the normal person it feels like a bad headache 24/7 - and then for us (chiari patients) when it gets real bad - my face gets beat red and i just wanna cry and the pain level goes to 10.
zygy2 - you still have a leak? they have talked about shunting me as well - but its something they would do after this "bridge" surgery......If you do still have a leak how do you manage your pain w/the headaches? mine was so severe yesterday i almost went to the ER - it gets to be such a drag to live like this too - i feel like such a burden to my awesome family as well as i'm sure you all have felt like this at some point too - in some ways i'm so sorry i ever did this surgery. the original NS scared me and told me that my herniation was SO big that if i didnt do it i could wake up paralyzed one day - so i went ahead and did the surgery without alot of research - i left the 1st surgery in a wheelchair because somehow even though i didnt have a stroke - my left side didnt work. it took a few months for it to come back and then when it did - the patch broke and i found myself back in the hospital for round 2 - my new NS said the reason my body reacted the way it did (pseudo = stroke) was because the 1st NS took out too much bone and shifted my brain and sent it into shock??? i dont know - i'm not a dr - but it makes sense i guess.... sorry this post is so long - i'm SO happy to be here and meet people who know exactly how my head feels :) i love you all already!!!!!
I think my leak is getting worse -it's a slow leak because my former NS double patched me- but I'm getting nauseous now - and the headaches are getting much more violent and frequent - i'm supposed to be going in this week and the new NS will be doing a CT-guided aspiration of the Pseudomeningocele - they will be studying the fluid to see if it is infected before they schedule the next surgery.
linnielou232 - i call the back of my head the crater too - lol - and i'm so careful around a crowd so as to not get knocked in the head - i'm so paranoid around people.
i sent you a note to ask about your surgeries :) hope you are well today :)
thank you all
I'm 26 and the exact thing happened to me when I was 11, I had chiari and underwent surgery and was still in horrible pain. Since my problems occured when I was so young, about 14 years ago very little was known and was another 3 years before a completely different NS found the slump. My prognoses was poor and I was in a great deal of pain. Went to UCLA where a shelf was built to hold my brain up but after only weeks my brain re slumped. At this time it was my 5th brain surgery, 2 return visits to UCLA for a shunt and follow up were fruitless, and finally my Mother found the Chiari center in New York. There they put in a titanium mesh plate in, that holds up my brain keeping it off my brain stem, though in most cases slumps can never be 100% fixed. My best advice would be to research NS, many have a lot of big talk but little real experience. I had my best luck after 4 other NS with one at the Chiari center in Long Island New York. You said your NS recommended a bridge, I have after having one of my own that failed just 3 weeks post opp I would suggest more looking into a plate to keep it up. I've never heard of any surgery where the bone could be rebuilt, I've been where you are and wish you nothing but the best, feel free to write anytime.
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