[peetie383]

Hello everyone! I am 24 years old and have been going through a large part of my life with "migraines" and other problems like numbness in my arms, and pain in my back that feels like it should be bruised along my spine. A few months ago I got sudden vision change in my L eye and have been seeing a neuro-opthamologist since. In one of my MRI tests he noted that my cerebellum is 3-4cm low. We have discused Chiari since and my mother and I actually both suffer from identicle symptoms, although she recently has had falling episodes and a few more things happen than I. I am looking for more information as to what other people went through to get diagnosed. Within the past month my headaches seem to be almost constant. My neck feels as though I cannot straigten it, and I am miserable. My MD suggested that one way to test if it is Chiari is to dehydrate myself for ~2 weeks. This he said would decrease the spinal fluid production and should result in a decrease of my symptoms. Then for the following 2 weeks I should over hydrate myself to see if the symptoms come back...Has anyone heard of this, or even done it?? I would love some feed back please!

[MorningBroken]

Hey there peetie. So sorry to hear what you and yer mum are going through. I've written about my experiance in the thread "My Chiari Experiance" in this forum. I'm keeping it updated as I find out things. I am 7 years post-op after Chiari Decompression surgery. I'm more than happy to discuss it with other chiarians on the board.

I must say first off that I am NO expert. However, I AM a survivor .

Second, remembering I'm not an expert, but I have never heard of dehydrating yourself being a way of testing for Chiari???? My hubby (who is an EMT) said that the body compensates from the periphreals inward. (Laymens terms outside inward). IE, other body systems would be affected aversely, in his understanding, before a reduction of CSF would be negligible. (Please remember, this is opinion only, not actual doctor talking). But still, I'd be very wary of such an "experiment". The body can dehydrate very quickly.

Please keep us updated, its a pleasure to meet cha!!!!

God Bless,

Dawn

[peetie383]

Thank you for your response. I have been researching this idea of dehydration and have not come across anything really. Makes me a little nervous... I look forward to reading about your experience and having people to ask questions like this around. Thanks again!!

[Zelda]

That experiment sounds.....well, dumb. And too be perfectly honest your dr doesn't sound much smarter.

I too have a chiari malformation and had surgery 10 yrs ago to help relieve some of the symptoms. It was very successful and I am doing much better.

There is an organization called ASAP, that deals with chiari malformations among other related disorders. Their website is very helpful with lots of information on everything from symptoms to local drs who are experienced in dealing with this disorder. Having experienced drs is very important, other less experience drs can make you feel like your a hypochondriac or worse.

Feel free to pm me with any questions.

[peetie383]

Just curious because I have been reading...a lot... about Chiari and cannot seem to find anything that states if a 3-4cm descent line mine would cause the kind of symptoms I have. Have any of you had symptoms with a lower drop in the cerebellum like that? Or were they further dropped? Thanks for the help!!

[theoneRogue420]

I'm sorry I can be of no help, but I sure am glad to see the subject brought up.

I developed epilepsy a few years ago, and had an EEG and a CT scan done. I was dissatisfied with the first neuro, so asked for a referral to another.

When we had gone through the usual Q&A stuff, he went on his puter to view the scan. The first thing he said was "forget the epilepsy, he didn't even mention this Chiari Malformation"!!!

I am scheduled for a contrast MRI and a new EEG in early Dec., so I'm hoping I'll find out what is up soon thereafter.

I was already a member of NT for my epilepsy and my rsd/crps, so I figured I'd find a place in here to talk about it.

I'll read your Chiari Experience thread now, MorningBroken. I'm sure it will explain a lot.

Thanks for being here, peeps!

[LIZARD]

Originally Posted by peetie383

My MD suggested that one way to test if it is Chiari is to dehydrate myself for ~2 weeks. This he said would decrease the spinal fluid production and should result in a decrease of my symptoms.

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

[peetie383]

[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.

[MorningBroken]

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

[Zelda]

Originally Posted by MorningBroken

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 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?