I'm wondering if anyone has had surgery for a Chiari 0 diagnosis and what the outcome was.
My chiari was concidered borderline hard to dx,with a good NS I finally got my help.I went through many years of suffering with very little help at all.I guess that therory might be new to most reg NSs there seems to be a train of thought with many of them that the herniation has to be so much before patients can have significant symtoms.I know that NOT to be a good measure for a dx,mine turned out to be worse than my surgeon expected,my tonsil was pushing grooves into the stem.It turned out that I needed craniectomy,laminectomy,duraplasty so the chiari 0 just might be the new help coming that will help so many people,that is what I’m praying for.Maybe this can give hurting patients a better chance for getting better.I have been helped and I thank God for that everyday.The best advice as far as I have found is a specialist,that is where we can find a correct dx they just are more learned in this field.
Thank you, Lynn, for your response. It is so helpful to have this forum to meet others who share similar experiences to my own. I haven't seen a neurosurgeon and I don't think my neurologist knows much about Chiari, much less Chiari 0. Reading other people's stories, I am becoming convinced that I need to see a Chiari-informed diagnostician. I am looking into some of the clinics today before asking my neurologist for a referral.
My herniation was small, between 3 and 6mm. It took me a few tries to find a NS willing to help me, and so glad I did. I had adhesions all over my brain stem, nerves, and arteries, and large neuromas from the compression. I saw dr Heffez in WI. Please also look into Elhers Danlos too and dysautonomia. Being informed will help you with your treatment. Keep going!
Jenn
Any suggestions on a good doctor who supports the Chiari 0 diagnosis? I saw my neurologist this morning and she feels there is enough evidence of Chiari for me to see a specialist.
Take a look at Dan Heffez in WI
Dr Heffez is your best bet. I base this on Discussions other Members have posted. Go up to the search box on the Discussion Page and search Chiari 0 or CM0 or herniations less than 5mm and it should bring up many previous Discussions.
Just be sure neck instabilities have been ruled out by any surgeon you see!!
My local neurologist feels it is not neck instability but, I'm not sure that the opinion comes from an exhaustive diagnostic process. This all feels so overwhelming - finding doctors, making sure everything is covered. I've been sick for so long, I had just about given up. Thank you for your advice. This site is a great group of people.
Don’t give up, just keep taking steps. Every step puts You closer to the answer, even if it seems like a waste or a dead end.
I have a question for anyone with dysautonomia,my NS did not speak to me about this dx but did note it in his report which he sent out to me.Should I be concerned about this or wait
sand speak to a neurologist or my MD?I am having some symptoms and just not sure where to go,back to my NS or just take my report to the MD,my NS is really expensive and without insurance it is hard to afford.The question is can a reg. doc.treat my symptoms?
Lynn,
I would talk to a NL. I don’t think (my personal experience) that NSs will start a treatment plan because they wont oversee long term.
Lynn Messer said:
I have a question for anyone with dysautonomia,my NS did not speak to me about this dx but did note it in his report which he sent out to me.Should I be concerned about this or wait
sand speak to a neurologist or my MD?I am having some symptoms and just not sure where to go,back to my NS or just take my report to the MD,my NS is really expensive and without insurance it is hard to afford.The question is can a reg. doc.treat my symptoms?
I hope you’ve found more info. On the chiari 0,my NS is Dr.Rosner in Hendersonville,N.C. he has been the only help for me in 27yrs.!!it has been a hell to live in.I was so sick.The ironic thing about it all is the NS that helped me was just a few miles from the last two Dr.s I was seeing and asking to see a chiari specialist.Theywould not tell me about him.I was pretty sure I needed to look into chiari it was just too fitting to the symptoms that had pledged me for all those years.The chiari0 theory seems promising the reg. Nl&NSs can’t dx chiari unless it has presents a herniation that is significant.It seems that if you get a dx you will have to find a specialist who does lots of decompressions each year.
I hope you’ve found more info. On the chiari 0,my NS is Dr.Rosner in Hendersonville,N.C. he has been the only help for me in 27yrs.!!it has been a hell to live in.I was so sick.The ironic thing about it all is the NS that helped me was just a few miles from the last two Dr.s I was seeing and asking to see a chiari specialist.Theywould not tell me about him.I was pretty sure I needed to look into chiari it was just too fitting to the symptoms that had pledged me for all those years.The chiari0 theory seems promising the reg. Nl&NSs can’t dx chiari unless it has presents a herniation that is significant.It seems that if you get a dx you will have to find a specialist who does lots of decompressions each year.
So far, I am leaning toward Dr. Heffez in Wisconsin. It is quite a journey for me but, if it gets me the best diagnostic process, I will do anything I can to get there. My HMO is likely to give me a hard time so having my neurologist on board would be helpful. She's interested in Chiari 0 but had never heard of it before I mentioned it. Her approach is to try and find a neuroradiologist in the area who is willing to look for Chiari 0 and then go from there. I'm hoping whoever she finds is good but I've only had a supine MRI and have heard that upright is more appropriate for Chiari 0. I can't imagine being sick for so long. For me it has been about eighteen years and I am already nearing the end of my stamina. Of course, I've also been saying that for a very long time. Thanks for energy and ideas. I appreciate it.
I have made initial contact with Dr. Heffez' office at the Wisconsin Chiari Center. They asked me to send in a copy of my MRI's, a questionnaire and a copy of my insurance card. Should I also be sending a short history of my symptoms or does that come later? My symptoms have deteriorated quite a bit since the MRI was taken and I want to be sure they take my case seriously. But, I also don't want to send more than what they want.
Thank you, by the way, Lynn. I am finding more info every day. Sometimes, it is hard to pull myself away from researching because I know my life won't be right until I can find some answers. It seems crazy to want a diagnosis like Chiari but it is the only thing that has ever made sense of the whole picture. I've been ricocheting around from specialist to specialist. Each one finds some problem (convergence insufficiency, vestibular disfunction) but nobody ever puts the pieces together. This would explain it all - even the weird seizure I had when I was two-and-a-half! I have been robbed of most of my adult life and would not have made it at all if I didn't have such strong and supportive people in my life to help me. Thank you for sharing your experience. I hope you are feeling better?
Lynn Messer said:
I hope you've found more info. On the chiari 0,my NS is Dr.Rosner in Hendersonville,N.C. he has been the only help for me in 27yrs.!!it has been a hell to live in.I was so sick.The ironic thing about it all is the NS that helped me was just a few miles from the last two Dr.s I was seeing and asking to see a chiari specialist.Theywould not tell me about him.I was pretty sure I needed to look into chiari it was just too fitting to the symptoms that had pledged me for all those years.The chiari0 theory seems promising the reg. Nl&NSs can't dx chiari unless it has presents a herniation that is significant.It seems that if you get a dx you will have to find a specialist who does lots of decompressions each year.
If the questionnaire didn’t ask for symptoms I don’t think it would hurt to send a short list, also saying that you have been deteriorating rapidly. I’m glad you have something in the works.
Jenn
I overnighted my materials to the Wisconsin Chiari Center on Wednesday. The waiting is killing me. I had no idea how long one day could seem and I imagine it might take several weeks to hear back. Maybe it will get easier?
I heard back from the Wisconsin Chiari Center. The receptionist said that Dr. Heffez looked at my MRI's and reported a mild cervical stenosis and possible mild Chiari Malformation. It is hard to hear words like "mild" when I am feeling so terrible all the time but it is better than a no.
They want me to come in for a consult with Dr. Heffez that would include an enhanced MRI of my head. It didn't sound like they would be doing one of the spine (only the neck has been done before) and they do not have an upright MRI machine there. I am concerned because I have read so much about syrinx's being found below the neck and have also read that upright flexion and extension MRI's are important for diagnosing Chiari 0.
Does anyone have any thoughts on this? I'd book the ticket right now but I can't really afford to fly to more than one consult and I want to be sure I am getting the most thorough diagnostic process.
Thanks for the help!