Been Lied to

[Imamadpie]

Hello everyone, this is my first post, and perhaps the first time I've talked about my "problem". In 2000 I was diagnosed with Chiari malformation I though I was told I suffer from Chiari II symptoms. I was told that no surgeon would operate on chiari I and that it was something I would have to live with. I had another doctor tell me that I should immediately quit my job and stop going to school and gave me an estimated time of death, I was 18 at the time. I went to a nuerologist who said that my symptoms had nothing to do with my malformation and that he doubted I suffered such symptoms. He put me on some meds to prevent headaches and prescribed another for the migraines, and since he felt I was lying, he didn't help me with anything else. The migraine meds gave me a fever and made my throat swell, I immediately stopped taking that. The headache preventative gave me an upset stomach and I stopped taking it and seeing him. I've been solo since. I've tried many ways to ease the symptoms such as physical therapy, diet, and chiropractics. I've discovered that not much helps. In physical therapy I worked on finding a "new balance". What a load of nonsense. Needless to say, I'm still dizzy and I still have poor balance. I've changed my diet so that I have next to no caffiene, low sugars, low sodium, and have recently tried to add magnesium to my diet to control migraines. I try to work out, but I get very fatigued and often get sick, usually sinus colds nothing too serious. I see my Chiropractor once a month, I love my chiropractor thats the best way to find a bit of relief, but if I sleep the wrong way, I'll get headaches again, and can't afford to see her everyday (in fact I'm going to school for Chiropractors myself and plan on minoring in neurology). I'm very confused as what to do or think. I don't want to live like this everyday for the rest of my life, but do I have an option? I spent the last few hours trying to assess how bad I really have things, but that gives me a headache too.
If someone has advise for me, that would be wonderful.
Thanks!
~Lonely in New York

[debigolebiwski]

Chiari

Sorry, I just saw your post this morning and was quite puzzled. I wasn't familiar with Chiari at all. I did find this information though, on the internet. From the information you posted here, all of those symptoms are symptoms of the disease. That doctor didn't spend enough time with you to understand. I think you should locate another doctor who might be a bit more educated on your disease. Contact your local March of Dimes office and they will assist you. Incidentally, Happy Valeintine's Day.



Is there any treatment?


Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.


What is the prognosis?


Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent.

[Virginia]

Try this board. There are a ton of resources and doctors. Why do they say they can't operate???? http://p198.ezboard.com/fasap5881frm7

[mariaf]

Hi Imamadpie,

There is a group called Long Island Neurosurgical Associates out near Long Island Jewish Hospital. In particular, I would recommend Dr. Steven Schneider. He is a neurosurgeon - and I know he treats kids but I am pretty sure he treats adults as well. If not, then there are others in his group that treat adults for sure. Dr. Schneider is awesome. He has an excellent reputation and treats a lot of chiari cases, so if he does in fact treat adults, I would try to see him. If you need more info or prefer to e-mail me, my address is mariaf305@yahoo.com.

Good luck.

[Mom37]

Chiari

See www.asap.org which lists Chiari Malformation and Syringomyelia symptoms and you may have a syrinx with the symptoms you describe, but I"d look at that sight for valuable information.

[Jimbo]

What a moving post, I am sorry to hear of your predicament. I was looking up Chiari and found that it can be surgically improved - in fact 80 percent of people who have the decompression surgery have improvement.

Just remember that you have to fight for your health. Many doctors will just dismiss you or refer you, but keep on fighting and investigating and, I am quite confident, that many problems can be alleviated. I wish you the best of luck in your search.

[txmarinemom]

Imamadpie ... there's a listserve out there (just Google HYCEPH-L) that's great. I have hydrocephalus (and a 28 year old VP shunt), and yeah ... what you're experiencing are almost classic ACM (Arnold Chiari Malformation) symptoms.

I think you can get a lot more of your questions answered on HYCEPH-L.

Best regards,
Pam