New and have questions

[Sheri J]

Hi, I've posted a few times on the vitamin deficiency forum but never here. I've had multiple symptoms for 11 years, most come and go and I've never had a diagnosis and all but gave up on doctors. However, in the last half year have two new symptoms one involving my heart (racing), so I've been forced to face the medical establishment again. The other "new" symptom is headache...extreme.

I could run down a list of symptoms, and if anyone wants to know, will gladly do so, but for now I have a couple questions maybe someone could help me with.

I was told my racing heart is in perfect condition and the faulty signal to it is not from within the heart itself, but from my vagus nerve (they don't know why.) I was sent to neurology, had an MRI of my brain, which was "text book perfect." My question is, would an MRI of my brain (basically to rule out MS because of other symptoms) show Chiari automatically, or would they have to be specifically looking for it? Would it have to include an MRI of my neck?

Second question...someone posted a pic of their MRI here (sorry I didn't note the name) and mentioned receiving the CD for it. Is this something I am entitled to have if I had an MRI? If I can get it, should I send it to a Chiari specialist somewhere to review -or- would it have been pretty apparent even though they were ruling out MS?

Finally, my neuro symptoms do not seem to be measurable with the "squeeze my fingers" type tests, but I'm not making this stuff up and have too good of a life to mess it up on purpose for 11 years. The docs say I am strong, but I know my strength (esp right arm), coordination, balance, etc aren't what they should be. I always wonder if I exceed expectations on these tests because I was a gymnast and was extremely strong, balanced, coordinated. Under the gun, I wonder if my althletic experience helps me perform, but day to day, when I'm just moving thru my world, my balance, coordination, etc fluctuate. I can still walk a straight line for the doc, but can't hop up on a curb and walk it - which I could do with my eyes closed back in the day.

Finally, the one symptom that I can't find anywhere and have never had a response to, sometimes when lying down the back/inside my neck "buzzes" or feels like it is vibrating. Has anyone heard of or experienced anything like this? It destroys my sleep, which is hampered anyway!

Thanks for your time reading all this! I really need some answers and appreciated any help I can get!

Again, I could list my symptoms if it would be helpful or if anyone might have advice based on them. Just let me know.

Sheri

[jgoldie]

if the radiologist reading your films recognizes a Chiari Malformation, they'll mention it. Mine is 'zero' or minimal herniation, and all the neurologists missed it except for the Chiari Institute in Great Neck NY, Dr. Bolognese. You can request a copy of your films on CDrom from the place you had the MRI done.
You'd think something like a Chiari Malformation should be apparent...I've read about people who have said their doc said they have a '6mm herniation' for example, and that the doc ALSO said, "but it shouldn't be giving you problems and is just an incidental finding" !!!!

go to the chiari Institute website and watch the videos made by Dr. Bolognese, they explain a lot. You can send your films in for evaluation. They also treat disorders related to Chiari Malformation
good luck

[dhurlebaus]

You can check out my website. WWW.STUDIOSAFARI.COM
go to the Arnold Chiari link. There is a picture of my MRI scan there. Click it and it will appear larger. It page also lists my symptoms and surgery results. Good Luck .... Dawn

[LIZARD]

I was sent to neurology, had an MRI of my brain, which was "text book perfect." My question is, would an MRI of my brain (basically to rule out MS because of other symptoms) show Chiari automatically, or would they have to be specifically looking for it? Would it have to include an MRI of my neck?

Sheri

Hey, Sheri. :)

An MRI of the neck is probably a good idea, but from what I know, whether the ACM shows up or not will depend on: 1) how well-acquainted the doctor/radiologist is with ACM; and 2) its size. My son's ped caught his easily (head MRI only), but it was a 13 mm herniation, so hard to miss, I think. ;) If yours is, say, 2 or 3 mm, it might be missed by someone without training and experience, and it could be hard to see even if whoever is looking at it knows about ACM if the herniation is miniscule.


Hope this helps!

LIZARD :)

[krashleen]

Hi Sheri, actually a MRI of the brain isn't going to show the flow of the cerebral spinal fluid. You need one of those done.

My MRI of the brain was perfect, but until I went to TCI where they ordered the CINE(or flow study)of the brain they didn't know how compromised my flow was.

Good advice, about TCI but there are others that have had success with surgeries.

I had my decompression/fusion surgery at TCI in Great Neck and their videos are VERY educational.

HTH;)

[Sheri J]

Thanks everyone for your advice and info.

I'm not at all familiar with the lingo... What is TCI?

Thanks,

Sheri

[LIZARD]

Thanks everyone for your advice and info.

I'm not at all familiar with the lingo... What is TCI?

Thanks,

Sheri

TCI = The Chiari Institute (in New York) :)


LIZARD :)

[IndySasha]

Ok.. have a question...

I am having a MRI of the brain and a MRA of the neck on the 13th do I need to ask them to check for Chiari or will it show up? I had a siezure on the 5th of Sept and had been reading another forum and then today found out that a cousin and a cousin's son both have Chiari malformations. The cousin's son is also going to be checked as is their mother my aunt because she has had strokes and siezures. I also have fibromyalgia and depression that is becomming med resistant. I just went thru chemo and radiation for lymphoma at the beginning of the year.. now I hear about this. And from everything I have been reading all my symptoms fit.. I would love to to think that I could have something that someone actually knows something about and that I wont be looked at as ""there she goes again.. some new ailment"" Can this surgury be done at any hospital?? as I have no insurance and am on a Health Assistance Program thru one of the hospitals and Med Center here in Indianapolis?

I also have degenerative disc disease ( Arthritis of the neck ) and cervial radiculopathy... never had a MRI or MRA done yet just a head CT...
Any thoughts... comments... anything will be greatly appreciated!!!

{{{{{{ huggsies }}}}}}}
Indy:eek:

[LIZARD]

[FONT=Century Gothic][COLOR=red][B]I am having a MRI of the brain and a MRA of the neck on the 13th do I need to ask them to check for Chiari or will it show up?

I would ask them to look, as it could be very small and easy to miss if they aren't looking closely for it.

As for where to have the surgery, this is something that should only be done by a neurosurgeon with significant experience with this surgery. I mentioned several sites to you re your post on the epilepsy board. Check them out. Someone should be able to help.

Good luck...

LIZARD :)