I read the link you provided, and it does make sense in a strange sort of way. (kinda like everything dealing with ACM makes a wierd sort of sense LOL).

I think my initial "psycho reaction" was probably caused by the statement.... "...that one way to test if it is Chiari is to dehydrate myself..."

I had visions of someone depriving themselves of liquids for a 2 week period, and I kinda freaked. I hope you forgive me. *blushes* However, to your doctors credit, a controlled diuretic doesnt "dehydrate" the body, however it does cause the body to flush out excess fluids. I had never heard of the use of diuretics either, to be completely honest, and they were never tried with me in my personal case. But that may be because it struck me so hard and so fast that surgery was the only viable option in my specific case.

For others whose ACM isnt presenting in such a rapid fashion, or arent exhibiting such an extremely fast and severe neurological progression, it might be plausible to consider trying a series of diuretics before opting for surgery, especially since you seem to have had some success with this treatment (if only minimal).

However, thanks so much for bringing up this treatment option. I am sure that in the future it will bring hope to someone else. And keep us informed how it is going with you and yours!!!

God Bless you!!!

Dawn

I agree..........the above quote freaked me out too. Flushing out excess fluid is one thing....."to dehydrate myself" is scary.

How are you doing now?

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