So I have symptoms similar to Chiari ... ENT has ruled out all ear problems and has diagnosed me with Migraine Associated Vertigo (no migraine just vertigo)... because of the progression of my symptoms I am doubtful of this diagnosis.
This MRI is from 6 years ago - when I had just random bouts of symptoms... I am waiting for Images from my last MRI taken a few weeks ago...
What are your opinions of my MRI? Do you think it could be chiari? How do you measure herniation?
Thanks for your input - yes I know I need a new MRI - I got one just a few weeks ago, but I don't have the images yet... just was wondering what ppl thought of this one -
I don't know how to go about getting a CINE MRI - I think I need to talk to a specialist because the Dr. I am seeing now doesn't want to talk about Chiari. He put me on Verapamil for Migraine associated vertigo. I don't go back in until Aug 30!!
I am worried because I am having dizziness (NOT VERTIGO) that messes with my cognition and speech as well as this weird sensation (pressure like) on the back of my head - for 15-20 days out of the month!! I have an 11 month old son and I nanny for two boys.... I've already missed so much work because I can't drive half the time...
I am in Philly... so I read that the Chiari institute is only 2.5 hrs away... and I think there is a specialist in Delaware that is only an hour or so. Now I am not sure where to go because the Institute doesn't take and insurance... so if you have any input on that let me know!!
Hey Carrie...I am in Allentown...not too far from u!
I went to a Dr in Philly...was not able to help...and was supposed to be a Chiari specialist....I do not know of a dr in Del that is a good chiari dr. I went to NY and was very happy.
The Chiari institute takes insurance, it is the NS that does not participate.....so that is an out of pocket expense...u can do a fund rasier to help pay ur bills.....
The NL and the hospital staff work with insurance at TCI, and trust me when I say, u want a true chiari specialist, not a NS that takes insurance...I know how expensive it can be, I got the bills to prove it, but I would do it all again.
Hoe is ur PCP to deal with, or is that who is treating u now?
I read on the forum dr. list about the DR in Delaware - don't know anything about him though.
Good to know about the TCI - I think that is where I will start and try to get some answers.
The Dr. I am talking to now is and ENT and supposedly a specialist with Vertigo... he knows of Chiari, I know because I brought it up to him and he was shocked I knew of it... but I guess is convinced I have migraines.
I think migraines would def. be the better diagnosis, but my symptoms have changed drastically since I was in a minor car accident and I don't want to go undiagnosed and have bigger issues later on...
I was treated for yrs for migraines....and let me tell u, I now know it was the chiari all along....I am not sure y drs are not willing to be more open to chiari as the possibility....justs makes this all the more frustrating.
As for the dr in Del....and any dr on the list, u do need to research them,,they were not given a background check and are just there as a means for a starting point....members submit their drs names that they liked...so not all are chiari specialists, but treated chiari.
Who knows, mayb that dr in del is the right one for u, but until u do some checking u may never know....that is y I agreed to go to Unnv of Penn in Philly...but I was very upset as to how I was treated and charged....I had an appointment in the drs office, but was charged as an outpatient, so my insurance did not cover it either...pretty slick.
Yeah , a MVA, a fall or a hard cough or sneeze can trigger symptoms of chiari to rapidly get worse....good idea, itis best to know what u r dealing with.
I know your postings were quite some time ago but I live in Pottstown, also neighboring the 2 of you and I am going through something very similar. Severe headaches, syrinx, rashes, numbness and ear problems. I am seeing a local neurologist and that has gone no where. I have been looking into finding a specialist for at the very least the syrinx but it seems to be somewhat of a difficult task. Any insight since you have had sometime since your last post?
Many of us do need to travel in order to get to a NS that is well informed and experienced with chiari.I went to NY...but there r Drs all over, it is finding them that can be a challenge.
We do have a list of Drs, the list was compiled by the members of the drs they went to and liked...the list is not a referral and u do need to research all Drs u consider going to to be sure they r right for u.
When you are researching doctors make sure you also focus on doctors who are experienced in dealing with syringomyelia if you are sure you have a syrinx. What constitutes a Chiari specialist is just opinions. There has been a lot of politics within the field of neurosurgery over the issue of what constitutes Chiari malformation, and how and when to treat it. You want to ask how many cases the NS has dealt with, what their training is related to Chiari and syringomyelia, and what percentage of the syringes collapsed following surgery. I went to a NS who is very knowledgable about both conditions and who does many decompressions every year and treats syringomyelia. However, I mainly chose him because he is a highly trained, well regarded spine specialist who is highly skilled at treating difficult cancers and tumors of the spine. I figured that he would best know and understand all the spinal cord issues and be the very best person to deal with any complications with the syrinx should it have to be shunted. He also teaches med students and neurological fellows and Chiari is one of the areas he teaches. But, he would very likely not call himself a Chiari specialist nor is that what he is primarily known for.
My point is that there are many Chiari surgeries done every year. TCI, and I am sure they are great, does many of them but a lot are done very successfully elsewhere. I would go on all the Chiari related websites that are out there and ask for doctors near Pottstown. You are bound to get some good recommendations close to home so you have that as an option. I know that one of the other large message boards on Chiari has a member who was extremely happy with their doctor at UPenn and had a very successful decompression because I read many posts about it.
I wonder if TCI ever refers people to local doctors? And what is the story with the NSs not taking any insurance? What is that all about?!!!! For those of you who were treated there, what possible explanation do they give you for not taking any insurance?
Good luck with the NS search and getting help that fits your situation!
I had my surgery at TCI, and the NS's do not work with insurance companies bcuz they try to limit the Drs abilities to do surgeries....
Some ins Comps will challenge the Drs even for testing...they r not the dr....I had this issue with a Rheumatoid Dr ordered some tests and the Ins comp said no, I didn't need them. This is the reason many chiari drs do not work with ins.
Thanks Selma! That is really interesting that they say that but it does make you wonder. I guess by now we have all been in situations where our insurance companies challenge tests and procedures and things like PT, etc. However, you would think that they would take insurance and then tell patients that not all tests, etc. will be covered by their plan and let them pay them out of pocket. Even if the insurance company argued that surgery was not warranted and wouldn't cover it at all, which shouldn't happen most of the time, the patient wouldn't be any worse off than how it is set up now with those NS's not taking any insurance.
I wonder why they would get any more challenge from insurance than any other NS. Nothing I had, surgeries, hospital stays, meds, PT, etc. was challenged or questioned by my insurance and I don't have any super policy. It does make you wonder if what they really don't like is having to negotiate their fees. I hope that is not the case because there are too many people out there who really need their help and having to raise the money yourself when you have insurance seems wrong. I am glad you were able to be treated there and that you were happy with them though. They need to open satellite offices around the country!
It is not just the testing many times it is surgery itself that can get denied.
There have been a few chiari NS's that were given a hard time by their state medical boards bcuz they did not feel the surgeries being done were necessary....
The thing is these NS's mostly deal with chiari, syringomyelia, and tethered cord and a few other related spinal issues....
Tethered Cord is a biggy with ins comps as to if they will allow surgery or deem it necessary.
I do not think it is a fee issue as I know what I paid and what most NS's fees r by talking with some of the people on line...I was very lucky as to what I was billed over what my ins did pay. Using the NL's and Hospital personnel they all work with ins so the NS actually does get paid via ins in the long run....it is the office fees where we paid more.
All post ops that were not follow ups, like my 1 yr, I did with the NL so I only had a co-pay to worry about.
Each state is diff as to what they will allow...and having satellite offices around the country that took care of chiari would be great....hopefully that will happen as we get more awareness out there...until we do we have to deal with close minded people on ins boards and medical boards.
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