My doctor told me about this surgery where they go in and shave away the bone to release pressure. Has anyone had this done? He doesn’t want to rush it so I’m on this anti-dizziness medication and is making me SO tired…and a little dizzy (funny how that works). I just want to know what other people have done.
Do you have other symptoms as well as the dizziness?? When they found the Chiari in the MRI did you find out what the size is?? Size really does not matter however...it is the Sx's. Also have you had a full spine MRI done?? The reason I ask is b/c some folks w/Chiari develop a syrinx on the spine cord..it is a fluid filled sack of cerebral spinal fluid (CSF).
As far as surgery...I had what is called a Posterior Fossa Decompression...the Neuro. Surgeon (NS) cut a piece of bone out of the back of my head, opened the dura (the covering of the brain) put a patch where he opened the dura..this is to make more room for CSF to flow...the bone he cut out of my head was replaced with I believe cadaver bone.
The Posterior Fossa Decompression is the standard operation for a Chiari patient that is in need of surgery...many patients feel as though they are ok with treating their Sx's with meds and use the wait and see appraoch...Personally, my Sx's were too bad....we did a wait and see , so to speak...while I was trying to get a proper diagnosis...only to get worse..I am glad I had it done..still have some issues..mainly now is my walking/balance...before the operation I was a total mess...Took a long while for me to see/feel good results..but they came...now some folks here felt relief soon after surgery....
I know other members will give their experience..We are all here to help each other..we are not doctors...but we can and will share our own stories..Hopefully , some of your questions were answered!
Hi John, after i was dxd with Chiari it took a long time not to find out why my life was turned upside down but to find a doctor who truly believed that chiari was causing ALL the problems, I was on a tremendous amt of medication some with some relief, others with more complications, I finally found a NS who was an expert in chiari and other chiari tag alongs. eventually I had the same surgery as Lori had,however I had a mesh "plate" inscerted to hold up the cerebellum.
while after surgery i felt that many of the problems have subsided, how ever I was one of the lucky ones who had suffered, a complication called Hydrocephalus (fluid in the brain) it was not discovered 19 days AFTER decompression surgery(read my profile or my About me post) which caused me ALOT more problems. and now almost 3 yrs later I still have issues but am in pain mgmt AND Finally feeling MORE relief, and feeling like smiling again! :D
so the choice is yours and if you are having many symptoms that limits your daily life, I personally would consider it more. Are you seeing a chiari Expert? Just remember that complaication CAN happen and you need to be prepared incase they do. and Please Make sure you Understand What the surgery is and how long it takes for healing etc..
.Each of us have had different experiences in healing and pretty much there is no "standard" in healing..
good luck and best wishes
Hi and Welcome!!!
I had a similar procedure done because I hav EDS (Ehlers-Danlos Syndrome). I had the full ammount of the tonsils removed, a portion of my skull and part of my C1 shaved away to maintain the integrity of my neck strength. It is what NS's call the "conservitave" method. I don't think it is wise to have them go in there and just shave the C1, when down the road you will most likely need to have another procedure to correct another herniation. There are so many factors that effect Chiari and gravity is not our friend. Just think about it?? Even though my NS did take this route, because I wanted to have mobility in my neck. Now in heinsight I should of had the more invasive procedure with the rods and fusion, because now I am suffering from 4 herniated discs and my right arm is losing it muscle tone and is extremely painful. In essence I will mostlikely need the surgery that we tried to avoid in the first place. So I would most definately do my research and just because it is the "latest thing" doesn't mean it is the greatest thing. Good luck and by the way I would definately do my surgery again, because what I am now is 100 times better than what I was. In no way am I bad mouthing my NS (he is a genius) or the choices I made, but if we could only have a crystal ball how much easier life would be. (LOL)
Much Love and Blessings,
oops sorry got your name wrong
I had the posterior fossa decompression surgery done three years ago. My herniation was 25mm and I was starting to have symptoms. My upper arms were so painful, stiff neck, headaches, balance issues, trouble swallowing, etc. I also had further complications with developing hydrocephalus. I had a VP shunt put in 6 months after decompression. I don't know anything about the less conservative procedure you are talking about. I had C1 & C2 shaved as well as a portion of my skull in the back removed. The surgery has helped in many ways. I still have symptoms and am in pain management, but things would have continued to get worse for me if I hadn't had the surgery. Good luck in your decision making, and keep us all posted on what you decide. Oh and if you are seeing an "expert" please tell us his name!! LOL!
Thank you to everyone who provided their input on my question! After reading and re-reading, I think that I may consider going through with the surgery. Most of you have said that it isn’t always 100% (which my doctor has also told me) but if it improves my symptoms at all, I will take the chance. Does anyone know if there is a Chiari expert near Nevada or California?
Good advice, Crystal. We have to trust our instincts. I too found that I trusted my doctor and that helped a lot with my decision to go thru with the surgery.