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!

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

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!!

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.

Morning Broken,
What is your doctor's name from Vanderbilt?
I have a friend that her son has just been diagnosed with Chiari Malformation Type 1 with Syrinx (cyst) and they have surgery scheduled next Wed with Dr. Noel Tulipan at Vanderbilt. We are just trying to find information to make sure he is the best choice.
Thank You, Lisa

yes Dr. Tulipan and Dr. Peter Konrad are both knowledgeable in Chiari . good choice , and warm wishes and prayers

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!!

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!

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