I had decompression 21/2 years ago At 56 ( I have had symptoms since I was 6 but no body figured out what it was) 21/2 years ago I had decompression no duraplasty, had no pain for five weeks then just got worst headache 24 hrs a day I have my nerves burn which takes care of that. I am now having symptoms really bad falling, numbing, eye problems coughing , etc, my doctor talk with my neurosurgeon and he wants me to come, I have heard that about 37% of people have to have a second surgery at about 21/2 years how many of you have. Thank you all they might have an answer for me.
Sorry you are having issues again. I am one that has had two surgeries. My surgeon didn’t do the duraplasty the first time either. I’m hoping that with your case that you will not have to go through that again.
What did your surgeon do the first time?
I would get a 2nd opinion if you could - I'm kinda of having similar issues and I'm about 1 1/2 years out - Hope you get the help you deserve - There are a lot of helpful and informative folks on this site
I am 45 and had my first sugery May of 2014 and when I went for a check up in September I had a CF leak that caused me to have the same kinds of issues I had before the same issues. I had the second surgery to repair the patch in December 2015 . I in the healing process but I am back to work each day is different. I go for a follow up in April 2015 . An MRI would show if you have a leak. best wishes.
I also had decompression surgery with no duraplasty. My life was pain free for approx 10-12 weeks. The headaches then returned and almost daily. I returned to my neurosurgeon and he advised that he could not help me. I had a second opinion with the same results.
I just want to throw some positivity out there. I am 2 years post op. I had some complications with infections after my first surgery which led to a second and third very shortly after but nothing to do with chiari again if that makes sense. I feel pretty great. My headaches were gone the moment I woke up from my first surgery, and haven’t returned. i get random other symptoms of chiari like vertigo (like right now my room is spinning) and every now and then I get pins and needles for no reason. But if the surgery is done correctly I do believe the headaches and the body aches can be eliminated completely. I had a pretty large herniation.
Stay hopeful. I’m not sure where you’re from or if you’ll travel, but I’m from boston, and my neurosurgeon was dr curry from mass general hospital. He’s a genius.
I found out that i had a chiari malformation in december 2010. I was preggo so they couldnt do a surgery. I had surgery where they took out part of my skull bone in December 2011. I was pain free for about 4 months and then all my symptoms came back. I also had a syrnix. We decided to go back in and do another decompression surgery. I had that done march 2013. I was again pain free and four months later all pain was back. I am still in pain and we are looking at other causes. I am back seeing my spinal doctor and they are thinking maybe my nerves are damaged or something…
I had my decompression surgery in 2001 and was pain free (with minor headaches/migraines) until 2009 when I developed epilepsy. This past October I had a seizure and have had daily intractable migraines. I’ve been hospitalized and everything. In a month I’m getting an occipital nerve stimulator put in to help with the pain and I’ve read it has a great success rate.
WOW!! You must be my almost twin!! I am 60 and found out I had Chiari at 45, so, 15 years ago. . .and at that time, suffered a TIA - that's how they found out about the Chiari.
My sympathies to you!! It seems doctors really don't know much at all about Chiari. About 3 years ago I had a decompression and laminectomy of C1 and C2. My neurosurgeon said I would feel 80% better. . . YIKES. . . Only feel 20% better, if that. . .
Recently, I went to a neurosurgeon for children, and she has done both Chiari surgeries on children and adults. Her impression was that the 1st surgeon did not complete the surgery, or that he was just being extremely cautious in what he was doing.
Her opinion (and I had a 2nd opinion to confirm - at Mayfield Chiari Clinic in Cincinnati) . . . that I needed to have completely removed the tonsils at the back of the head as well as a bovine covering (duraplasty??) to keep the brain lifted. . . .
Whew!! I am a little nervous about having this done, but, I cannot keep going like this. . .
Yes, for me it feels like someone hit me with a 2x4 also. . . . right sided pain, where I'd like to pull my right eye out, since there's so much pain and vision is poor anyways. . .
Just really confirming I guess that yes, a 2nd surgery may be the option. . . According to my neurosurgeon, there will be other surgeries. . . we are not done!! Oh joy!!!
Well, do take care, Ella
We found out for my daughter decompression failure linked to intracranial hypertension/pseudotumor. it is something that needs to be ruled out before a second (or even first) decompression surgery. They go along together. The symptoms are very similar and overlap.
If you are interested in learning about it, this is a good reference.
Also a two timer when it comes to decompression's. Had my first in 2011, without the duraplasty. Symptoms were gone for 5 months or so and came back full force. The cerebellum was decompressed, but scar tissue developed which limited the csf flow completely. Had the second operation in 2013 with the duraplasty and have been pain free; that is until a month or so ago. So far, surgery has been a yearly thing for me over the last few years. A new operation every March/April.
Anyway, I suggest the duraplasty. Done with the right patch, scar tissue build up can be minimal.
I’m almost 5 years post op with duraplasty and I am wondering if anyone had a second surgery with that done? I’ve read a lot about people needing second surgeries if the dura wasn’t addressed but no info on the ones who did… experiencing a return of symptoms years later
The interesting thing is that at 5 years its a wash in terms of re-surgery.
At two years the non duraplasty group has higher rates of re-surgery, but as I said at five years, its a statistical wash at around 15%. requiring a second surgery.
The other thing is the numbers for "improvement" of symptoms at five years were the same at right around 60%. Interestingly while not statistically significant for rather complicated reasons (you needed more patients in each subgroup to be "statistically" different) the number of patients having no duraplasty actually had more success (62%) from the surgery than the duraplasty group who were more symptomatic (57%)
You can read about it in :
The Chiari Malformations
By R. Shane Tubbs, Jerry W. Oakes
Its a pretty pricey text book, but as its widely used in most programs your local hospital should have it available or inter library loan from your Public Library. It goes into much more detail of course.