Chairi symptoms or something else??

[LGH]

Hello everyone,

I just wanted to know if anyone else out there who was dx CM had any of the same symptoms I have. I recently had a Brain MRI secondary to vague neurological symptoms and it came back with a Chiari I Malformation. But my symptoms don't seem consistent with it and my neurologist isn't sure that a CM would be causing them either. He told me that this could just be an "incidental finding" since there are a lot of people who have CM but don't have symptoms.

I've been having a weird fluttering senstaion mostly down my legs which comes and goes and occasionally down the back of my shoulders and arms, all over muscle twitching including my lower eyelids and intermittently my face. And my lower eyelids will twitch when I yawn too. I also get a kind of myoclonic jerk movement when starting to fall asleep at night if I lay in certain positions, but once I change positions I can fall asleep without a problem and usually feel better in the morning. I suffered from migraines as a child but they are few and far between now although I do have a sense of pressure in my head with straining movements at work.

Does anyone know if a tethered cord would produce muscle twtiching and weird sensations since I know it can also occur with CM?? I just know that I if I move or sit in certain positions I can provoke or relieve some of my symptoms.

[LIZARD]

Chiari symptoms can be practically anything. If you haven't seen a neurosurgeon yet--particularly one well-schooled in ACM--please do yourself a favor and get to one. Neurologists know next to nothing about structural abnormalities or growths in the brain; they are not qualified, therefore, to give any opinions on treating them. Try the following sites for referrals:

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


Good luck!

LIZARD :)

[pringlec]

Hi LGH,

I had weird feeling in my back and down my legs and arms too. I had tests done that revealed pinched nerves in my upper and lower back so I figured that was what it was from. Although, after my decompression surgery the feelings decreased greatly. Also, my right eye use to twitch frequently, it doesn't anymore.

It's hard to say what symptoms are related to what. Usually with Chiari there are other malformations also. For example, my right vertebral artery did not form completly (hypoplastic) and I have spina bifida occult. Some of the symptoms I have experienced may be related to them but after my compression surgery some of my symptoms disapeared, some lessened, and others remained the same. I have read about so many different symptoms. If these are new symptoms I would not rule out it being caused by your chiari because of one doctors opinion. Find someone experienced with Chiari, preferably a neurosurgeon. Good luck.

[LGH]

Thanks for the info.
I'm having a NSG consult after the new years so hopefully then I'll get some answers.
One of my colleges (I work in the medical field), also mentioned something about my nightime "jerks" and my muscle twtiching during the day. He said it could be related to the Chiari since they only come on when I'm lying in certain positions which could be due to a sort of positional hypoxia due to the crowding at the foramen magnum. Which would make sense b/c I only get this "buzzing" senstion in my face and shoulders usually just before a "jerk" comes on and the will continue until I move positions. I also notice there worse a day or two after I fly as well.

[roz1950]

Welcome to the club . I got the buzzing then like a jolt . Mine is in the middle of my chest. But I am on Keppra which has stopped it. I do hope you are seeing a neuro that is familar to Chiari . There are some experts around . Where do you live maybe we can help with a chiari expert .

[LGH]

I actually live out on long island NY and have heard of TCI. So I figured it would be best for me to try to get there for an evaluation this way they can figure out exactly what is causing my symptoms. Another Neurologist whom I know also told me that this would be a good idea b/c even it an MRI came back with a pinched nerve or something else in my neck (I know I have a retrolisthesis on an x-ray so far), he would want to be conclusive as to where the symptoms are coming from before deciding on any treatment etc...

I'm only 30 but Weird thing is..... my mom had a weird buzzing feeling in her legs x 3 years ago when she came down "sick" but with what they never concluded what she has, everything from severe Fibromyalgia, a neruopothay, dystonia in her foot and loss of balance easily, among a whole lot of other things. Although her brain MRI was "normal" according to the report. Now I'm wondering if it was mis-read.
Now my older sister is starting to have the same symptoms but her MD refused a brain MRI and told her the "buzzing" all over is anxiety and put her on meds.....which made her worse, as did my mom when she was taking them too!

[LGH]

One other question.

MRI report stated a 0.7cm caudel displacement of cerebellar tonsils and mild crowding of the foramen magnum.
Does this mean a herniation or are the tonsils just sitting low compared to there normal position. Everything I've read mentions herniations in mm not cm's so wondering if there is a difference between herniation and caudel displacement??

[maridane]

My first MRI that found the chiari said that I had a 1cm tonsilar herniation. I am now sitting at 2.3 cm or at least I was about 3 years ago. I am just biding my time until I can get back to TCI for my decompression and let me tell you, the pain and symptoms are just horrible. I have decent flow anterior but no flow posteriorly. My daughter had her decompression at TCI in June of 04. She is not doing well but it isn't the chiari at this tiime causing the problems. TCI is testing her now for tethered cord. I pray they will find the answers soon.

Let me just tell you that I gave chiari to all three of my children and possibly my granddaughter as well as she is having all kinds of problems now. It has a tendency to run in clusters of family members. There is research being done at Duke specifically about some kind of genetic disposition.... My best to you, please don't waste your time with a neurologist... You need to be seen by a neurosurgeon and since you are in Long Island, TCI would be the ideal place for you to go. There are some great videos you can watch on the TCI website. Just go to: www.thechiariinstitute.com

Good Luck, Marilyn

[roz1950]

yes get to the TCI .