Chiari confusion...
 

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
 

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.

Quick question
 

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!! :)

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...:rolleyes:

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 :)

i am a little surprised!!
 

[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...:rolleyes:

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.

about diuretics
 

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?

help finding new MD?
 

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??

Dr's and Insurance
 

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!

:hug:

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 :winky:

dawn
 

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

to razzle
 

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

mri
 

oops totally forgot ..


thats a Chiari moment :eek:

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>

Thumb Size
 

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

information
 

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

drs
 

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