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

Pardon me for being blunt, but this "doctor" is a QUACK!! Dehydrating yourself is supposed to make you better??!! Did he get his degree from a roll of Scott tissue?? Holy crap...

I don't know who you have seen yet, but you need a neurosurgeon who is well-versed in Chiari, and not many are. Go to the following sites for recommendations:

www.ASAP.org
www.WACMA.com
www.chiarione.org
www.conquerchiari.org

Good luck...

LIZARD

[QUOTE=LIZARD;171291]Pardon me for being blunt, but this "doctor" is a QUACK!! Dehydrating yourself is supposed to make you better??!! Did he get his degree from a roll of Scott tissue?? Holy crap...

I don't know who you have seen yet, but you need a neurosurgeon who is well-versed in Chiari, and not many are. Go to the following sites for recommendations:

www.chiarione.org

I went to this website you recommended...and much to my surprise (AND I WAS SURPRISED!) my doctor may have had a point in this dehydration idea. He put me on Lasix (a diuretic) to try it out...and this website mentions that... as a treatment though....maybe he knows a little bit. To be honest my symptoms did seem to improve a little while on the lasix...they did not go away though!

This is from the above website, under treatments....

Prescription diuretics are also used to reduce the amount of cerebral spinal fluid produced by the body - thereby reducing intracranial pressure and providing relief for headaches.

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??