Overwhelmed

[BunnyGirl86]

I am a 22 year old physically fit young woman, recently (past month) diagnosed with Chiari (9mm). I have so many symptoms and some seem to be getting worse quickly. I first noticed excessive fatigue in the fall of 2007, by January 2008 I was having bizarre neurologic symptoms and serious weight loss as well.

My symptoms always include exhaustion, head/neck pain, numbness in hands, feet, and face, tremor, nausea, photosensivity, and feeling disoriented. I had an abnormal EEG but no actual seizures and am on Lamictal, Ativan, Zofran and Codeine (T3) for pain.

I'm trying to do everything to alleviate my symptoms including cold compresses, frequent rest, wearing a cushioned neck collar while mobile, and a healthy diet. I just feel worse and worse and am starting to have sleep disturbances (hallucinations when falling asleep, feelings of vibration or shaking, and perceived suffocation) and even an episode of collapsing while active.

Is there anything more I could be doing? I'm really starting to suffer and have developed a great deal of anxiety and depression. Is surgery my only option? Should I be in a hospital (I have been to the ER twice this month for symptoms). I've seen one neurologist who does not think Chiari is at all a source for my symptoms (???) and am waiting on an appointment from another neurologist. What do I do????

Christina
Providence, RI

[Shane99]

Congrats! It's so very nice to hear back from people after successful surgery. Sometimes it seems that after people feel better, they don't come back to visit much, which I guess is normal.

I hope you continue to get stronger and "get back on your feet". Just take it easy, and keep a close eye on things. Not trying to be negative or scare you, but remember that you aren't cured of Chiari, it can come back.

Your timeframe and symptoms were similar to mine. I started noticing problems last Autumn and had my surgery this past Spring. Some of my symptoms were; exhaustion, head/neck pain, numbness in hands, and legs, and severe dizziness.

I'm doing a lot better, but I'm still having some dizziness issues. I go back to the doctor Monday,  Aug 11.

Your from Providence, huh? One of my favorite authors are from there - H.P. Lovecraft.

[dana_8142]

Good for you!!  That is fantastic, I hope your recovery goes well.  I've never had the surgery, but I have read posts from some people who have.  I hear it can people kind of tough - so hang in there!  The people in this forum can be very helpful.  Some of the more informative post-op members were:  Shane99, jjadqews, youngwife, and dieselann - try to get in touch with them if you have questions about your recovery, or read some of there posts.  It may help you deal with the long road ahead.  Good luck to you, I hope your recovery goes smoothly - and I hope you feel much relife.

[BunnyGirl86]

Update: I had decompression surgery on July 23rd at New York Presbyterian Hospital! I was only in the hospital for 2 days post-op and every day I feel a little better and a little stronger. I believe with time I will have my life back! I urge anyone/everyone with questions about the surgery to contact me; I had a very pleasant experience with it! :)

[swichngers]

It took me over 2 years to be correctly diagnosed with Chiari I Malformation (and Ehlers Danlos Syndrome hypermobility type). Unfortunately, that is considered to be a very short time comparatively. As a result of my symptoms, I had to withdraw from my doctoral program (but I started back last fall....YAY!).

I went to neurosurgeons all over the country to see what was the cause of my debilitating symptoms. I encountered the standard "it's not chiari but I can't tell you what it is" or "you have too much stress" or my favorite was when they would just keep trying medications or painful procedures without having any idea what was causing the symptoms. It was not until I went to a few of the top neurosurgeons in the country that treat Chiari that I finally got an answer.

How are you doing now? Any progress with controlling the symptoms or getting help from a doctor?

~Erin

[(Not so) Spunky]

Dr's always say your symptoms are not from Chiari. It's because most have no CLUE what all this condition entails. Don't give up your fight, and ask to see a neurosurgeon, they know more about it than a regular neurologist. NL's seem to dismiss this until it's too late, and then the damage is done. Surgery is not a cure- it's only a treatment to prevent further damage. If things are getting worse quickly, I would consider the surgery because you can't go back and change things!!