Hi guys,
Finding this site has been really comforting. It's nice knowing I'm not alone. I have been searching for a doctor that is knowledgeable in minimally invasive surgeries. I found one doctor William D. Butler who is a chiari specialist and have been talking with him, but he doesnt specialize in minimally invasive surgeries. Can anyone recommend someone in the MA area?
Britt, glad you are here 
have you checked out member recommended list of docs? It’s under the DOCTORS tab at the top of the page. IM not too sure what you mean by minimally invasive surgery for a decompression… Or is it for a decompression? The surgeries I’m aware of for this are:
Boney decompression only
Boney decompression with duraplasty
Boney decompression with duraplasty and laminectomy
I think they all involve cutting the back of the head. The boney only decompression is less trauma and cuts down the risk of infection and eliminates the risk if a CSF leak, which sounds great, but it also may not be enough intervention to relieve the issue of not having enough space for your brain inside your skull. Some people do fine with this surgery, others don’t and end up having a second decompression with the Duraplasty. I had a duraplasty with my first decompression and so glad because the NS found arachnoid webbing that had grown around the area and was further blocking the flow of csf- easily just cut away.
What ever you decide it has to feel right for you and your situation, that is the most important thing, just be sure you have the full picture of your unique situation before you decide. Also, have you looked into Ehlers Danlos Syndrome? Not ALL of us have it, but many of do and it causes cranial cervical instability or at least increases the likelihood of it developing. Check the Brighton criteria and the Beighton criteria to get an idea of how it’s diagnosed.
Jenn
Thank you so much for all that information! Wow. There is so much more to Decompression surgery than I thought. In regards to the boney decompression surgery does that just involve shaving the outer bone without opening the skull? That sounds less invasive. I am really uncertain about what to do. I hate that it is up to me to make this decision. Such a hard decision. Also: how long was your recovery time? I know this will be different for everyone, but I don't know how to tell my work how long I'll need off. Thank you again!
jcdemar said:
Britt, glad you are here :) have you checked out member recommended list of docs? It's under the DOCTORS tab at the top of the page. IM not too sure what you mean by minimally invasive surgery for a decompression... Or is it for a decompression? The surgeries I'm aware of for this are:
Boney decompression only
Boney decompression with duraplasty
Boney decompression with duraplasty and laminectomy
I think they all involve cutting the back of the head. The boney only decompression is less trauma and cuts down the risk of infection and eliminates the risk if a CSF leak, which sounds great, but it also may not be enough intervention to relieve the issue of not having enough space for your brain inside your skull. Some people do fine with this surgery, others don't and end up having a second decompression with the Duraplasty. I had a duraplasty with my first decompression and so glad because the NS found arachnoid webbing that had grown around the area and was further blocking the flow of csf- easily just cut away.
What ever you decide it has to feel right for you and your situation, that is the most important thing, just be sure you have the full picture of your unique situation before you decide. Also, have you looked into Ehlers Danlos Syndrome? Not ALL of us have it, but many of do and it causes cranial cervical instability or at least increases the likelihood of it developing. Check the Brighton criteria and the Beighton criteria to get an idea of how it's diagnosed.
Jenn :)
Brittecook-I had the decompression removal of the skull bone (mine was about 1/2" diameter) with the opening in the dural sac and removal of the posterior C-1 vertebrae by a minimally invasive surgeon in Ohio. Initially, I was just "signed up" for the decompression, but once they were inside the skull, the surgeon said there was more pressure than they anticipated and went ahead with the duraplasty and laminectomy. I had given consent to do what he thought to be medically necessary-I didn't want another surgery a few months down the road. The difference I've found between minimally and non-minimally invasive is how they treat the muscle surrounding the incision. Minimally-invasive surgeries often take longer time in the OR, under general anesthesia, but have a quicker recovery Non-minimally-invasive have less time under anesthesia, but they generally cut through the muscle tissue which causes a longer recovery. Definitely check into the other things like Ehler-Danlos and CCI. I do recommend minimally invasive surgeons, but only if they're experienced with Chiari. I wouldn't trade invasion for experience what-so-ever! Best wishes! XOXO
Britt, even the less invasive decompression involves removing whole bone from the back of the skull- the idea is to create a larger “house” for your brain to live in and accommodate the flow of CSF. I think if the skull was only shaved it would not actually increase the areas size. It sounds better right off the bat to have less surgery but you also need to consider what needs to be accomplished with the surgery. For some of us less is not more and we all have different anatomy that needs to be accounted for. My advice is to find the NS who thinks he has your full, unique picture and knows how to accommodate for it to get the best results. That being said I will also say what you choose needs to feel right for you, follow your intuition.
Jenn
There is a good bit of debate as to whether or not duraplasty is needed. I had the decompression with duraplasty and C-1 laminectomy. Recovery seems to be different for everyone. Compared to others on the site I had a pretty easy recovery. I consider my surgery to have been successful! :)
Personally I've heard of too many people who needed a second surgery when duraplasty wasn't done so I was relieved that it was done in my case. A good NS with chiari experience will be able to evaluate your individual case and see what is best for you! :)
Hi Britt,
I have Chiari and suspected EDS or other connective tissue problem too. I have an appointment with Dr. Heilman at Tufts. I'm considering seeing Dr. Butler for a second opinion. What's your experience with him been like? Did you end up having surgery/who with?