Sorry to hear this. My daughter is going through the same thing. Doctors, blood tests, therapies, hokey stuff,...anything and everything but nothing helps and nothing else seems to be wrong just that 11mm CM that the NL's and NS seem to write off.
I agree with Abby in that a NS who is ready to jump on this without trying other means is probably not a good thing. When do you say though enough is enough? How do you get someone to listen and back you up?
I wish I knew and had wonderful words of wisdom for you.
@Molly- Thanks! I'm still waiting to see if the insurance will allow me to go to UVA and more importantly if UVA will see me. In the meantime I got in with the neurology dept. at WVU next week. I'm nervous and trying not to go in with a bad outlook but I don't want to get my hopes up and get humiliated again!
@Gma- It is so hard to get taken seriously and it's frustrating as can be! I think doctor's need to put themselves in the patient's shoes more often isn't of just dismissing their concerns! I hope your daughter gets some answers too! I guess we just need to keep hanging in there. Sometimes support is just as important as wisdom!
Pleas stay positive! Everyone is different. I went to each Dr's appointment with hope and yes I got the same answer "I don't know...Comeback in a year and we'll see" Well I didn't accept that answer and told my PCP ok who next on the list I can see. YOU HAVE KEEP YOU CHIN UP! I have problems still with my face and all the Dr's are saying that it has nothing to do with my chiari. But they can't explain it. So i'm till battling it for 4 years. So please stay positive! Take care and we re here ifyou need us! Anglyn said:
@Molly- Thanks! I'm still waiting to see if the insurance will allow me to go to UVA and more importantly if UVA will see me. In the meantime I got in with the neurology dept. at WVU next week. I'm nervous and trying not to go in with a bad outlook but I don't want to get my hopes up and get humiliated again!
@Gma- It is so hard to get taken seriously and it's frustrating as can be! I think doctor's need to put themselves in the patient's shoes more often isn't of just dismissing their concerns! I hope your daughter gets some answers too! I guess we just need to keep hanging in there. Sometimes support is just as important as wisdom!
Vonda - Dr. Henderson is great. When he said a prayer for ME before my surgery - I felt like I was in the right place with the right person.
Shirley
Vonda Gardner said:
What great advice from Shirley. I would like to add that just because someone claims to have experience with Chiari, it does not make them a specialist in Chiari. Many of those tend to be overly cautious & don't want to take risks with the surgery. I researched the top Chiari specialists in the country. Henderson was one of those, Shirley. Glad to hear that he was everything I read about him :)
Shirley C. said:
Hi Anglyn
I grew up in Welch, WVA not far from Beckley - so hello to a fellow West Virginian. Haven't lived there since I graduated High School but still feel an attachment to what I still consider "home". I just want to say don't give up. You yourself are the best judge when something is not right. I was just diagnosed in Dec 2007. I experienced the headaches, dizziness, fogginess in the head, vertigo and pain for years and years and - a lot more years. Like you I went to all kinds of doctors and was treated for a myriad of symptoms and took a lot of different colored pills before I got a diagnosis of Chiari, so I understand the frustration you must be experiencing. I knew something was wrong; I just couldn't convince anybody else or find out what it was. After all, I didn't really "look sick". It's hopeful that you at least have the Chiari diagnosis. Now you need to find a doctor who is experienced in Chiari to give you a proper prognosis. I agree you need a second opinion. I live in the Wash DC area and we are lucky to have a couple of really good ones here. I had my surgery for Chiari and basilar invagination in 2010 and when I woke up the next morning for the first time in a very long time nothing hurt. Course part of it was the fairy dust they had given me for pain! But, I found that I was lucky and I really had to use only a very small amount of pain medication as I recovered. The surgery didn't make everything perfect but it helped a lot. I don't have headaches and most of the dizziness and vertigo are gone....to me that is success. I know it's not the most important thing but I did like that my neurosurgeon put all the stiches on the inside. I barely have a scar. I really hope you find answers too. If you can travel this direction, I will be happy to give you the info on Dr. Fraser Henderson who helped me. He not only does the surgery but he is involved in research also. He is not only a competent surgeon but a compassionate person. I feel he really cares about his patients. I know that he wouldn't recommend surgery for anyone who doesn't need it. I also know that he takes on the difficult cases that other doctors won't (that would be me) and fixes people who have had failed surgeries before. So, I wouldn't hesitate to recommend him. I hope you get some answers soon.