Can anyone tell me,to there knowledge,what has been the smallest amount of physical evidence of Chiari, where surgery has been performed?.I`m asking this because my NS thinks that my 6mm (or in his opinion "it`s not that big")does not indicate surgery ,even though I have many symptoms too long to mention.My CSF is not that bad and I do not have a syrynx,so I can understand his reluctance to operate,but at the same time my quality of life is deteriorating rapidly and I can tell the difference between Chiari and my connective tissue symptoms.I will seek a second opinion , but in the meantime I would appreciate any reply.This NS ,by the way,is considered the best in Australia.I`ts got me very confused.Thanks.
Thank you Abby.I absolutely have rapid progression of symptoms and I have cognitive impairment eg. memory,motor skills,decision making ability etc.I am most concerned about the loss of feeling in my feet,legs and hands,not to mention the increasing headaches and general pain.Maybe I did not make myself clear enough to my NS regarding these issues.Do I wait for things to get worse and then go back to him or do I seek a second opinion?.He is the best in this country,but I think in this case he may have it wrong.Thanks for the information.I didn`t even mention to him about the dysautonomia , but he did seem very rushed.
Putty, this NS may be one of the best in the field…but only to people who fit into his tiny criteria! My herniation was small (around 5mm) my CSF flow was not significantly blocked on the cine, but my Chiari was making my life unbearable- and making nerve tumors in my head. I’m glad you aren’t satisfied with his opinion- it’s outdated. You are not the only Chiarian being told these things (rubbish)so please do not be discouraged. There are surgeons out there that “get it” and who want to help. Keep your head up!
Jenn
I have decompressive surgery coming up on januay 20th for my chiari. Size of my herniation is only 3.5mm, however its big enough to cause problems for me and a syrinx that extends all the way down to t12.
My daughter's is a 7mm (MRI report), 8mm (NS who did her surgery - Aug 2013) & 9 mm (from another NS we sought for another opinion) with no syrinx. The size varies depending on who is reading your MRI (strange I know) and should not be the only indicator your NS should be considering, your symptoms and quality of life should account for something.
While my daughter's NS did not initially say "she has to have surgery" they left it up to her to determine when the best time for her would be. She carefully talked to us about the risks associated with the surgery and while she was reluctant (which made me happy because I didn't want a NS who was willing to just cut) she listened to her and told her that only she would know if and when the time was right based on her pain and quality of life.
My daughter (who was 15 at the time of diagnosis and 17 at the time of her surgery) opted to do the surgery after several years, lots of research by both of us and careful consideration and her quality of life has improved because of it. We did find out during surgery that there were additional issues that were never seen on any of the MRI's she had and we were told that having the surgery by far was a good decision (which really eased her mind).
The best advice given to both of us was to remember that surgery is not a cure, but a treatment. Know all of the risks & benefits, ask lots of questions to doctors and others who have gone through it, and get more than one opinion. Go with the doctors that make YOU feel most comfortable & remember that you will hear good and bad about every doctor....follow your gut.
Best of luck with this journey.....as we all know all too well it's not always an easy journey but that's why we have this wonderful support group!! Hugs to you!!
Dr. Fraser Henderson will make a recommendation based on the whole picture.
A patient (my daughter) who had severe symptoms and a 3mm Chiari was a candidate.
A patient with 7mm and no symptoms may not need surgery.
Other surgeon's go "by the book" and will only operate if they see a certain __ mm Chiari on the scan.
However, surgery may (usually) only prevents symptoms from worsening (does not reverse the problems you may be having.) The exception, in my experience, are operations by Dr. Henderson - my symptoms reversed, as did my daughters, and 2 others that I know personally. But that is unusual for Chiari.
Good luck and gentle hugs.
As others have posted, quality of life is a huge consideration. I have a 7mm herniation and go for surgery on Monday. Headaches and blurred vision were my worst symptoms and were interrupting me at work. After r/o other possibilities, we scheduled for January 6th. I would seek another opinion or sit and have a heart-to-heart with your NS about you quality of life issues. Best of luck to you.