I was diagnosed with Chiari Malformation and Syringomyelia back in 2009. I was informed that it was a 14 mm herniation of the cerebellar tonsils causing mild to moderate neural crowding which led to the formation of a syrinx from C6-T3 and 8 mm in diameter. I have seen a neurologist regarding this condition but he is not a specialist in this field. My appointments consist of him checking my reflexes and balance, which is the norm for a neurological appointment, however, I would like to meet with a doctor who will explain the severity of the herniation and syrinx and will listen to my symptoms and discuss the best possible treatment. Does anyone know of any neurologists specializing in Chiari Malformation and/or Syringomyelia in the NY or tri-state area?
I know that the Chiari Institute is here but they do not accept any insurance and it will cost a great deal to go there so I am hoping that there might be another neurologist that can help me.
Hi..it is true that the NS himself doe not participate with insurance, but the hospital and the NL do.....call the financial dept at TCI and see how u can arrange to pay....plus u can appeal to ur insurance comp to cover it bcuz u need a specialist and there r no others that may take insurance either.U may be able to swing them over to cover it.
Thank you so much for getting back to me so quickly! I greatly appreciate it! I will look into some of the doctors on the list. In my own research, most specialists work only with children. I had contacted a Dr. Guy McKhann, but he is a NS and I am not ready for that yet.
I know that TCI is there should I need but according to my insurance company, TCI would have to plead the case for me in order to have my insurance company pay for it. Regardless, I would really like a second opinion because my symptoms, while still mild compared to some poor Chiarians, are getting increasingly worse (especially the headaches). I would like to have the opportunity to sit with someone who knows and deals with chiarians all the time and can give me clarity on my condition.
I totally understand ur position....I know there is a dr in NY and may be in the same building as TCI .....I will have to look to see if I can locate that info.....I have the chiari brain too, so my memory is not that great : )
Yes, that Chiari Brain can be difficult at times! I feel bad for my poor husband. He is always like, "Don't you remember when I said this or did that?" and I just don't. My short term memory stinks lately.
I would greatly appreciate any info you can supply me with. I also know that there were some legal difficulties at TCI, and while I feel like they came under more fire than they deserved, it is still something that I keep in the back of my mind. It is such a shame that it is so difficult to find people who specialize in this. It would make life so much easier for all of us.
Selma, I am glad you are feeling a bit better! I know you had a rough stretch. I wonder why the drastic change in temperature causes the side effects to kick in? I am not sure what most of my triggers are yet, but I do know that stress and looking down for a long time are the leading causes of my headaches.
Last Wednesday was the worst. I had a cross between a migraine, sinus, tension and ice pick headache and along with it came tightness of my throat and heart palpitations. It was scary. I thought that I wasn't going to be able to drive home but I made it.
Yes, it was 92 here yesterday and it was also humid. I stayed in the air conditioning all day!
I looked into Dr. Roonprapunt, but he is a neurosurgeon and I am hoping to just meet with a neurologist for the time being. It is my hope that I don't require surgery and so I am not sure if meeting with a neurosurgeon would be the best move. What did you do when you found out you had chiari?
My situation is a little different because I didn't develop symptoms and start seeking out doctors to determine what was wrong with me. I was hit by a truck and discovered the chiari incidentally. The symptoms developed shortly after.
Sorry..I'm sort of nosing in on this one a little...
Hit by a truck??? That sounds really scary!!
I was the reverse I had really bad symptoms and no one could figure out what was wrong with me (or didn't care to). I finally happened upon an excellent NS who offered to take a look and he is the one that dx the Chiari. So...what I am saying..is even though seeing a NS might be scary, they are the best specialist to see b/c they know so much more about it than NL...it is more in the surgical field. Seeing one doesn't mean that you will have to have surgery but they will give you a better idea of what to expect. I think you are doing the right thing to investigate this now!!
Yes, I was walking across the street in the crosswalk and a 9000 pound Silverado with commercial plates was stopped at the stop sign. He had inched forward as I got right near his truck, he was looking left and his vision was blocked by a bus. Next thing I remember, I heard to engine rev and I got hit......he hit me hard enough to make me stumble back 6-7 feet and come out of my shoes....actually my shoes split right in half.
I was actually very lucky because it could have been so much worse, but I ended up with some shoulder and neck problems, which led to an x-ray. That showed a sprain in my neck and signs of severe spasms, so they sent me for an MRI, which showed that my cerebellar tonsils are herniated 14 mm and I have a syrinx from C6-T3 that is 8 mm in diameter.
I guess I had some symptoms prior to the accident but none of them were anything that would cause me any real concern - i.e. headaches, some short term memory loss, bouts of sleeping problems and occasional dizziness if I got up to fast.....but those are things that most everyone goes through so I didn't worry about it.
Thank you for your insight! I appreciate it immensely. Maybe I will go to see a neurosurgeon about it. They seem to be a lot easier to track down than a NL who specializes in Chiari.
....well once u r dx with chiari a NS is the dr u want to see...many times they have a NL in their office that sees u as well....mayb u could call Dr Roonprapunt and see if he has one he would recommend...?
A NS treats and a NL diagnoses...so once ur dx'd u need someone to guide u to the nest step....a NL will only suggest a NS or PM.
That makes sense to me since you put it that way. My neurologist never mentioned anything about seeing a NS....I wonder why? I will ask him about it next week when I see him. I think that I might reach out to a NS just to be safe. I guess they see more people with this than a general NL.
Yes, that is pretty much what I had heard from him but I told him that I already knew all of that information since my brother has it and needed to have the decompression surgery. When I asked him about the size and whether or not it was considered substantial, he said some half answer like, "Well, we base the severity on symptoms."
I already knew that too, but that wasn't my question..lol! Anyway, since then, he seems to half listen to my symptoms, read me the wrong person's MRI results over the phone (until I told him again who I was and what I was already diagnosed with) and then when I needed a letter of clearance for PT, he put that he was treating me for chiari and syringobulbia. Aside from that, I get the typical neurological check up - reflexes, walking in a straight line and hopping on one leg so I feel that I am not getting the answers that I seek from him.
I will probably continue to see him but would like to get a 2nd opinion and try working with a different NL or NS to see who I feel most comfortable with.
Now, this neurologist that I am currently with has won many awards, including patient's choice award and best doctors on LI, so I am not knocking him. I just don't think he is best for me and my condition.
After reading my last comment, I felt like it might have seemed that way and it wasn't my intention so I just wanted to clarify.
Oh I agree Erin...there can be a huge prestigious hospital, but that doesn't mean the NS's r chiari minded drs...so we do have to keep searching until we find one we know will be the right one for our treatment.
Wow, ur brother has chiari too?...who was his dr?
This is true and it is very sad. I wish more doctors were well learned in chiari......it is unfortunate that so few are.
Yup, my brother has Chiari too! He was diagnosed after several different doctors testing for everything. His back is in terrible shape and he had several other issues as well, such as chest pains, keeping food down, panic attack symptoms and more so they ran a great deal of tests on him only to find out that he had chiari and syringomyelia. Even with the minor symptoms I had before my accident, the thought to get myself checked for chiari had crossed my mind because I was getting headaches too often, but I chalked it up to working on the computer all day under fluorescent lights. Who knows, maybe the accident was a blessing in disguise...lol!
I am not sure who his doctor is because he lives across the country.
Wow..I know you're not knocking the NL but it makes me a little nervous!! Selma is right you will probably get the same old answer most of the rest of us have...it's usually asymptomatic..or something like it.
Definitely check out the NS route....Can't believe your brother has the same trouble too..crazy..and not so unhereditary like we are lead to believe!!
Yes, I honestly do believe that is is hereditary. I know they are doing research to determine if that is the case. The other theory is that while we are fetuses, we received a lack of folic acid somehow! Who knows!
I know that most general NL will probably tell me the same thing, which is why I definitely want to talk to a chiari specialist. I guess I will keep looking for the right one and hopefully I will start getting some answers!
In the meantime, all the best to you both! Enjoy your Memorial Day Weekend!! :)
i am in a similar position, & am still learning, but i strongly reccomend dealing with a NS, & only an NS, even if you are not planning surgery. In particular, an NS that specializes in chiari. TRUST me on this. The best neuorlogists in the world reffer chiari patients to an NS, & dont have the experience that an NS does, & a good one will work with you, even if you are not ready for surgery. They will monitor you to make sure you are not going to have permanent nerve damage by waiting. I too am not sure i am ready for the surgery, but my NS is keeping an eye on me.
U are so right,we all need to be seen by a true Chiari specialist....some work with NL's which is good as they DX and can help by looking for related conditions which is helpful b4 u have surgery as some can affect how u feel and heal post op.
BTW- u may want to post to a newer thread as this one is 3 yrs old and the member u addressed ur reply to is not currently an active member.
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