I do realize now that the way that "dehydrate myself" came off as being a little much. However that is exactly what he told me to do! Sorry for the drasticness of the comment!

I did notice an improvement in the pain in my head and behind my eyes, and my eye did not swell while on the Lasix. However I did not realize how thirst that medication would make me and was waking in my sleep to slam glasses of water...so I kind of cancelled the med out a few days into the trial. My MD has me on Prednisone right now, he is also thinking that I could have Sarcoids...even though he did a biopsy 1 month ago to see if that was what I had and it came back negative...

I am looking for a good doctor to go for to get a 2nd opinnion. 2 months ago I had no symptoms, and now I am almost falling over, and in constant pain. Not to mention how this is affecting my school work and job! I am worried at how much my symptoms are progressing and want to see a doctor that may be a little more proactive and not just waiting to see what happens. I am having trouble locating a DR around Rochester NY. There is a lady in Syracuse, but she is considered out of network, and I cannot afford covering the whole visit. Anyone have any suggestions? What did you all do to get insurances to cover these different doctors??

When I was diagnosed with Chiari, I was extremely lucky that my insurance paid a portion of whomever I chose to see. The neurologist was considered 'out of network' so I had to pay 50% of the bills, instead of 20% that 'in network' would have cost. However, getting a correct diagnosis at the time was more important than the bill. We paid 5 dollars a month, for two years, with larger payments with our tax return, till the entire neuro bill was paid.

The major important thing, at least in my personal opinion, is to find a specialist in neurology (whether a neurologist or a neuro-surgeon) who is experianced with Chiari. I live in the heartland and not east coast, so not sure about doctors in your neck of the woods. It's hard to look at high medical bills, but 5 dollars a month, or whatever you can afford will get you there. Dont give up, honey.

I'll be praying for you!



Dawn


PS - Dun worry bout that dehydrate thingie, we're all on the same page now.... we'll laugh about it in a few months

in the other post you said you didnt have insurance . did you get some ? WHat did the dr. say about your mri

no hon, I had insurance through my job, back when my ACM was originally diagnosed in 2000. I no longer have insurance, because I am a stay at home mom. Although we're in the first stages of applying for SSA/SSI, due to complications from the ACM, myofascial entrapment, anxiety issues, vision loss and residual nerve damage.

As to your next question... exactly which MRI are you referring to? LOL. Cause I had the original MRI that diagnosed the ACM, I had a post-op MRI, and I had subsequent MRI's at 3 months, six months, 1 year and 2 years post-op. Then I just had an MRI recently to evaluate possible causes of vision loss last month. (Yeah, I'mma pro at head and neck MRI's ROTFL).

Lemme know which one ya wanna know about, and I'll letcha know as much as I can remember.

God Bless ya All!!!

Dawn

oops totally forgot ..


thats a Chiari moment

LOLOL. Completely understood

God Bless ya sweetie **huggs**

Dawn

My son found out by his derma running a MRI. He spoke to a NS and they said he had a thumb size portion decending. That was in terms for me to understand. They said he would not have to have surgery but a thumb size sounds like a lot compared to 3-4 cm. We have not got to actually see a NS yet so I do not understand any thing about CM. I am trying to find out all I can from online>

Does sound like a major size, huh? First off, I'd wanna know, thumb length or thumb width? Secondly, whose thumb are we measuring?

Seriously. The actual size of the herniation is not as important as the signifigance of the block of CSF (cerebral spinal fluid), in Chiari DX's. Some people have thin very elongated cerebral tonsils, so even though there is extreme herniation, there is very little to no blockage to the CSF flow itself.... while in others there is very slight to no herniation, but the tonsils are "thicker" and therefore block the fluid flow severly. Other people have absolutely no heriation of the tonsils but major symptoms due to over crowding of the hindbrain its self and the resultant blockage of CSF flow (Chiari0).

So it isnt the actual amount of herniation as much as the symptoms, rate of progression and the degree to which a person is experiancing them at, that most NS's use as a guideline to whether surgery is required.

Hope this helps honey!!!

God Bless you and yours!!!!!

Dawn

I wondered the same after his derma told me a thumb size portion. I have one week to go and maybe all my questions will be answer to a degree. His symptoms are not extreme so I really do not see him having surgery anytime soon. However, I do not think he is going to tell the doctor what symptoms he is showing and I was instructed by the nurse too allow my son to explain his symptoms.

I only hope he will tell them the truth because he tries to down play the headaches, dizzy spells, vision issues, and pains in his legs. He does not to me, but he has always told his derma that he did not have headaches and I would have too step up and say "well you have been complaining all week" or "you said you had one this morning."

I will let you know when we find out about the thumb size portion.

Thanks,
Tina

Sorry it took so long to respond hon. I hope ya had a Merry Christmas!!!!

Been busy the last couple days, and will be gone to SIL's house for the weekend and New Years. Then have a doc's appoint. on the 2nd.

Please be sure to keep us up to date on the situation and how it goes. Best of luck to you and your son!!!

God Bless Ya'll!!!!

Dawn