I was diagnosed with a Chiari malformation type 1 about 3 or so years ago. i spoke with a surgeon then about options. At that time surgery was not an option for us. Last year I was rear ended and since then I have been getting spasms throughout my brain causing brief moments to severe pain when i do simple things like stratching. A couple months ago I go a migrain that was so intense they thought I had a stroke. I've had migrains my whole life and none had ever been that bad.
So now my husband and I have decided that maybe I should haave surgery. I met with my surgeons helper and they told us my doctor was booked until December. i received a call today however from his office. He has specifically scheduled me for a Saturday surgery in a week and a half. My husband and i have heard so many horror stories about the surgery we are now starting to doubt that it is what we should do.
We have heard that people go the rest of their lives with twitches, nausea, dizziness when standing. that for wo months you have to have help to even to shower because you can not stand without dizziness. If there is a leak in teh spinal fluid they can't fix it for 2 months leaving you to depend on morphine and percecets which then you battle with an addiction afterwards.
I am so scared now and i am not sure if this is the right thing for me now. If anyone can share their expirences with this surgery please do. Please do not hold anything back i want all the info as pos to help me in my decision process also to help me prepare myself better if we do decide this is what I need to do. Thank you.
Hello and welcome! The most important thing that you must do is find a Chiari specialist. Not just a neurosurgeon who can do this surgery but one who focuses his practice on this condition. The risk of complications and more surgery is too great to let just anyone do it. I can tell you many stories of people going to just anyone and having to eventually seek out a specialist to fix the mistakes of an inexperienced surgeon. There is a list here in the forum of docs other members have used and liked.
I did find a specialist for my 1st surgery. Today is exactly 7 weeks and the 1st 2 weeks were a little tough. At that point I was able to go off most pain meds. I was able to shower alone as soon as I came home. The symptoms will cycle for awhile but I have done great. It wasnt nearly as bad as I had expected it to be. I credit that with the skill of my surgeon. Be advised that you may have to travel as most of us do. There are only a handful of specialists in the whole country. I just urge you to not let just anyone do this surgery. If too much bone is removed you could develop "brain slump" which would require more surgery. Not enough an inadequate decompression which is more surgery too. They say the national average for leaks is about 3-5%. My doc has had 1 in over 800 surgeries. So it does make a difference.
Good luck to you and please keep us posted with your decisions.
Pam was right with the chiari specialist. I am 4 mo post op and am so thankful that I had surgery done. I was able to take a shower when I got home and slowly do things. If you overdo you definetly pay for it and learning to not overdo has been hard. I still have mild headaches but I don't have any tingling or pain in my extremities and I can think again!! It takes awhile to get range of motion and strength back in your neck that is a huge part of the surgery. Taking it easy for as long as possible is also very important. It is a huge surgery and having the right person do it is really important and waying the options pros and cons. I couldn't function anymore and jumped into surgery so you are doing great by getting input from others. I wish you the very best and keep us posted it is a big decision!
I am 2 yrs post op, and I did not have ne of the issues u mentioned...and like Pam mentioned....u have to have the right NS....u can not just get a NS it must be a true chiari specialist,One that has his/her whole focus on chiari and chiari related conditions.
Many that have some lingering issues post op could be a reaction to the surgery itself...all surgery has risks, and some could be bcuz they got treatment too late and already had some perm nerve damage...surgery is not a cure or a fix, but a means to slow progression and restore CSF flow....if u have an obstruction and do not get surgery u r experiencing a nerve dieing which is y there is the long lasting effects.
Again, surgery with the right Dr, can offer u a much better way to avoid some of those issues that scare u...but, with out a dr that is skilled in this area u could end up how u fear...This is a scary surgery....but, I am so glad I had mine.
I am not sure where u got ur info, but many that r on the internet, r out there bcuz they had a bad experience...those that had a good experience usually go on with their lives and u do not hear from....we do ask all our members to come back post op so we can help the newbies thru this very bumpy journey.
Many of the members have a journal about their surgery, u may want to read a few...click on the name of the member it takes u to the profile page....get an idea....some had a rougher time post op then others....but, know u r not alone in this : )
Hi new friend,
I am recently back from having my surgery and I am living what I can only describe as a miracle. The Neurosurgeon being a Chiari specialist, not just a cranial specialist, is a must! My doctor was able to correct all of my symptoms, including ones I didn't even know were related. (I'm no longer allergic to cats -- go figure).
I was off all narcotic pain meds in two weeks, and my only complaint is that I have to sleep on an incline for a couple more weeks. I can live with that. I am stable now, no dizziness or falling. I am learning to take it easy, but it is so hard to because everyday feels like Christmas, a gift.
It's daunting, I know, to think about the mechanics of it all. And the mechanics vary be doctor. One doctor prefers a particular procedure to another. But it is not a doom and gloom. Look for the very best. You will likely need to travel, or talk to more than one. Insist on the best. It IS brainsurgery, so don't settle. You can come through this, and you will be so glad when you do. We will certainly be praying you find a great NS, and there are lists that can help you do just that. Be aggressive in getting your best care. You can overcome this!
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