I went today for the first time to see a NS for my chiari. It was the actual first time that I have been seen for chiari at all. I went with really high hopes of getting some answers to my questions, I wanted to get some pain relief and to just feel like I actually had a doctor that understood what I was going through. Well I'm not quite sure if thats what I got or not. I'm still trying to process it all to make heads or tails of it but he kept telling me how he was a real conservative doctor and how the surgery was real controversial even to the point of talking about a doctor relatively close to my hometown that had lost his license for performing decompression surgery. He also was telling me that some of the symptoms that I have read could be related to chiari like hormone issues due to pressure on your pituitary gland he is just a firm believer that things like that are not related. He said he knows its out there but he doesn't think its true. He also doesn't think chiari is hereditary.
In the end he told me that he didn't think that I needed surgery as of now and that he gave me no other answersfor why I have the upper back pain only on my left side and why its so terrible that nothing seems to take it away. He said that I needed to find a pain management clinic or I think he said a pain rehabilitation??? (not sure what that would be) He basicly in my opinion made me feel like he turned me down as a patient. He told me I didn't need to come back to see him unless my symptoms were significantly worse and I really felt I needed surgery.
I'm not really sure what to do now. I feel like I am right back to square one. I don't want to keep trying to find doctors after doctor to treat me. To actually act there is something that can be done for me. I don't even have the worst symptoms yet. I have read stories on here about people who have it so much worse than I do. I couldn't even to begin to imagine what they go through daily and then on top of all the pain to have to worry about weather or not we will even get a fair shot at the doctors visit. Its so frustrating. If anyone could help me see a little bit of hope in something I may have missed in this visit today or a way to get involved with a pain clinic, Please feel free to give me a shout. Thanks!
We live in Tn (not to far) and have a great NS. He has been treating Chiari for 25 years and trains NS at Vanderbilt. While my daughter has a pretty straight forward case in regards to the Chiari and syrinx he said some things that make perfect sense. I was very stuck on the mm of pertrusion and so on. He told me that’s not what matters. Every MRI machine is different, every tech is different. Your neighbor may have very little symptoms and a huge pertrusion while yours may not seem as bad but your symptoms are worse. It’s all about the quality of life. If you can’t find what you need from your doctor then find a doctor who can. You hold the power not them!!
I can get you a list of Chiari Experienced NS in your area.Chiari Institutes are wonderful, but they are only Dr. offices that are affiliated with local hospitals. Just like 1,000's of incredible NS throughout the US. My NS is in Pittsburgh in at Allegheny General and is the God Father of Neurosurgery. Hands down he is the best NS in the world with out any arguments. I was sent to him because of my extreme Chiari situation. Please don't discredit and miss out on wonderful surgeons just because you think you have to go to a Chiari Institute to get the best possible care.
You may not know me but I have a Medical background and work in many capacities for Ben's Friends. I have been so busy the past week and ill before that I apologize we haven't met yet. You may though Message me any questions and or concerns you have about any Medical Providers. We just cannot make public negative statments about Medical Providers or Facilities.
My daughter went though a number of docs (NL's and others) who were CERTAIN her issues were not Chairi related. One NL was sure there isn't even a surgery option for Chairi 1 patients. Others came up with some pretty crazy theories (like me purposely making her seem sick). BUT, being cautious and looking at every possibility, although costly both emotionally and financially, can be fruitful. If you find an NS who knows Chairi, he or she may recommend this approach prior to surgery anyway. In the end, my daughter ended up having a decompression in Nov. and is doing MUCH better now. We went into it though confident we had tried everything else we could think of though.
Thank you all for your advice I really do appreciate it so much. Tracy Z, I would love any help or advice that you could give me on chiari, doctors, or anything that you think can help me. I am in no way trying to talk about a doctor or facility in a negative way. Was honestly trying to see if I miss understood something out of my visit. I understand that every doctor has their own way of treating patients. This doctor just may not be a match for me personally. I just realized that on my last comment I did put a doctors name and I do sincerely apologize for that. Must have been one of my many moments of confusion considering I do know the rules of the website. I will try to make sure not to make that mistake again in the future. Thanks again for all the responses.