I had an appointment to see a NS at UVA today. Basically he reviewed my MRIs and said that my headaches are definitely due to Chiari but that he can't say that the rest of my symptoms are. I also suffer from tingling/numbness, lightheaded/dizziness, neck and shoulder pain, and extreme fatigue. He said that in his opinion the headaches are the only symptom that is definitely chiari related and that if I thought they were debilitating enough to risk the surgery then the decision was mine. He said take my time and think about what I wanted to do.
He said when making my decision i should ONLY consider the headaches. He said in his opinion the other issues are not related and would not improve with surgery. This just leaves me completely confused. Taken as a whole package then the surgery would definitely be worth it but not for headaches alone...I can take pain meds for those. It's the other symptoms that are most debilitating to me. :(
What is most frustrating is that I asked what else could cause the symptoms and he said my MRIs show no reason for them. I asked if there were any other tests I should have and he said nothing warrants further testing. I'm starting to think I'm crazy. :(
You are not crazy!! I have all of those same symptoms, and from what I have read and have been told those are all Chiari symptoms. Of course they can be symptoms of other things, but if you definitely have Chiari then I don't know why he would have told you the decompression surgery wouldn't help those symptoms?!?
Maybe you should consider another NS opinion. You mentioned UVA, so I am guessing you are in the Virginia area? If so, here are two possibilities - Dr. Fraser Henderson in the DC area and Dr. Jon Weingart in the Baltimore area. I met Dr. Henderson at a local Chiari support walk a few weeks ago, and his patients had nothing but good things to say about him. Dr. Jon Weingart is at Johns Hopkins, and he is my NS. I am scheduled to have surgery on July 13th and am counting down the days. My husband and I were very impressed with him, his office and his significant experience working with Chiari patients. He also performed the surgery on a young woman from my church and her family highly recommended him.
If you can find them on the site, you may want to ask Shirley Cleaver for more information on Dr. Henderson or Kismi about Dr. Weingart. Both have had sucessful surgery outcomes.
Thanks for the reassurance. I will try to get a referal to one of those doctors. My insurance is for WV state employees so it is hard to get the ok to go outside WV.
To complicate matters my NL trained under the doctor I saw at UVA and had already told me the referal would be a waste of time because chiari wasn't causing my issues. :( My PCP previously refered me to a NL at WVU who also said my issues weren't chiari related so I'm going to have a really hard time convincing anyone I need another referal. It's all so frustrating and hopeless.
Further adding to my doubting myself is that my CINE came back showing normal flow. If blocked flow causes the symptoms then perhaps these doctors are right? My flow wasn't blocked so why am I having the issues?
Who did you see? I had my surgery there last week and my symptoms were very close to yours. Dr. Oldfiled treated me he didn’t hesitate. Prior to seeing him everyone else made me think I was crazy. I would recommend Dr. Oilfield, if you didn’t see him.
Overall, my experience has been good. It’s been 9 days and each day gets better. I have some complaints, but the good outways the bad.
I saw Dr. Jane Sr. Which is another thing that confused me...I was under the impression he was retired. So if I were to decide on the surgery I don't even know who would be doing it! I just know that I don't want it done unless they think it will help ALL my symptoms. The headache isn't that major compared with the everything else combined. :(
Do you have copies of your MRI’s? Dr. Oldfield wouldn’t even make the appointment until I sent all my records to him. Once he reviewed them he accepted me as a patient. Maybe, he can get your files from Dr. Jane, Sr. Thais way you shouldn’t need another referral .
You r not alone. I also had issues with dr not really knowing how to treat Chiari. I finally found a doctor who spevializes in Chiari. I sm a nurse for brian injury patients, andin 2001 I hadnever heard of Chiari. So in the past few years we have made it know. It is crazy how all the syptoms come on. I have a lot of nausea, numbness, and pain that feels like electricity going through your body. I am glad that I found this site and know that I am not alone, because sometimes you do feel like your crazy and know one understands. If youever just need nto talk you can contact me.
Thanks edock. It does help to know you aren't alone.
Felicia-I do have the MRIs. He gave them back so I guess I'd have to send them to the other doctor. Not sure how that works when you've already been evaluated by one doctor in a group. :(
Now I'm struggling with my husband because the local NL said the symptoms weren't chiari, the NL at WVU said it, and now the guy who operated on Christopher Reeve said it!!! He says he doesn't think I'm a hypochondriac but I can tell deep down he does. He says things like "what do you think is wrong with you now". I guess I can't blame him for believing well trained doctors over me but it hurts. I can tell he thinks my trying to see other doctors is a waste. :(
I would call Dr. Oldfield’s office and ask them yourself. They should be able to give you some direction one way or another.
I know it gets hard for others to understand. I started seeking treatment, in October 2009. After three neurologist, two ENT, and my PCP. It wasn’t until February 2012, after my second MRI that I had a name for my problem. I knew there was doubt, but I didn’t give up on"me". The neurologist called and I started my research, the one thing that sticks out is you want someone who is a specialist. They tried to send me to a local hospital but I found Dr. Olfield and made my own appointment.
Sorry for all my thoughts, but I’ve been where you are. This is not about what others think, it’s about you! Always remember nobody knows you better than you.