Ataxia? Anyone here have knowledge about this condition?

[leftyladyfrommo]

A friend of mine has just been diagnosed. From what I have read the prognosis isn't very good. And I haven't seen anything that looks like it might help - any medications.

She had a cyst that developed over a long time just inside her skull and behind her ear. A few months ago she had a procedure that was supposed to help - a gamma knife procedure. They located the exact location of the cyst with MRI and then zapped it with radiation.

At first she seemed a little better. The numbness in her face seemed to be improving. But a couple of months ago she developed rather severe balance problems. Now walking is getting very difficult. And she seems to be suffering severe fatigue.

From what I can determine ataxia is often caused by damage to the cerebellum from any number of causes. One of them is damage due to a tumor - which she has. (I hope I have this right but I'm not very up on this stuff so please correct my terminology).

But what I am wondering is if the gamma knife procedure could have damaged her cerebellum. She was experiencing some balance problems before the procedure but nothing like she is experiencing now.

Anybody know about this?

[Lint Head]

1. Try this link.

http://www.ataxia.org/

[leftyladyfrommo]

2. Thanks so much. I went over and looked.

I am just sick about this diagnosis. My friend was always such an active person and a real go getter. Now all she does is sleep, get up and do one thing, go back to sleep.

She has been managing to keep on working but I think it is just getting harder and harder for her. She lives alone so being disabled is a major concern.

[peace13]

3. I am sorry to hear about your friend.

My sister has been diagnosed with this and has been to the Mayo Clinic for help. My understanding is that this is very hard to diagnose and predict how far the problems will progress. We see my sister's balance and physical stamina diminish with each visit. Her GP is actually very understanding and supportive and that seems to be the only plus in the whole situation. Your friend is lucky to have you looking for answers. I wish you luck in helping to find the answers. Peace, Kim

[Warpy]

4. I'd have to know more about how the procedure was done

Usually, a "gamma knife" refers to carefully targeted narrow radiation streams that converge on a tumor or cyst. The procedure is a day long one, with the patient's head bolted into a contraption called a stereotactic frame, the area carefully mapped via cat scan against the frame, the radiation streams carefully plotted to spare adjacent areas, and everything based on how the frame is attached to the patient's skull. There is little room for real error. The patient does end up with a raging headache from having to spend the day in the frame.

A tumor or even stroke in the cerebellum is more likely the culprit for her ataxia, although there can be many causes for ataxia, like CNS damage from chronic alcoholism or some hereditary conditions.

My sympathy to your friend. It's an incredibly frustrating condition.

[leftyladyfrommo]

6. You described exactly what was done.

The did an MRI to determine exactly where the cyst was. Then she had her head put into a frame and they zapped the cyst.

Her cyst was located inside her skull just behind her left ear. She had been having a lot of problems with loss of hearing and numbness in her face. The numbness is so bad that she cannot tell if she has bitten the inside of her mouth. And I think she was having some balance problems at that time, too.

But the ataxia is much worse than what she was dealing with before. She has a terrible time just getting around. Going up and down stairs is awful. She says that her mind knows what it wants her legs to do but her legs just don't respond.

The numbness in her face is back. And if she is tired her speech is really slurred.

[philb]

5. Ataxia common in autistics and toxic metals/mercury usually involved- some doc.

There was a strong association between learning disability* and autism spectrum disorder (often combined with hyperactivity disorder) on the one hand, and both simple and borderline 'ataxia' on the other

Ataxia, autism, and the cerebellum: a clinical study of 32 individuals with congenital ataxia. Ahsgren I, Baldwin I, Goetzinger-Falk C, Erikson A, Flodmark O, Gillberg C. Dev Med Child Neurol. 2005 Mar;47(3):193-8.


(Mercury causes ataxia) NIH Medline Items 1 - 20 of 76

Elemental mercury poisoning probably causes cortical myoclonus.
Mov Disord. 2007 Oct 15;22(13):1964-8.

Coordination deficits induced in young adult mice treated with methylmercury.
Int J Toxicol. 2007 Mar-Apr;26(2):115-21.

A meta-analysis epidemiological assessment of neurodevelopmental disorders following vaccines administered from 1994 through 2000 in the United States.
Neuro Endocrinol Lett. 2006 Aug;27(4):401-13.

Toxic effects seen in a herd of beef cattle following exposure to ash residues contaminated by lead and mercury.
Vet J. 2007 Jul;174(1):99-105. Epub 2006 Jun 5.

Dose-dependent effects of methylmercury administered during neonatal brain spurt in rats.
Brain Res Dev Brain Res. 2004 Sep 17;152(2):171-6.

Etc.

Those with autism and ataxia usually improve after metals detoxification, so you might do a test for toxic metal exposure. This could be a cofactor with the other circumstances and patient put over tipping point. See autism threads.

[philb]

7. more NLM Medline articles on mercury causing ataxia & ataxia improving after detox

(more NLM Medline articles on mercury causing ataxia & ataxia improving after detox)
Neurodegeneration from mitochondrial insufficiency: nutrients, stem cells, growth factors, and prospects for brain rebuilding using integrative management. Kidd PM. Altern Med Rev. 2005 Dec;10(4):268-93 (mercury and other toxics cause mitochondrial damage, electron leakage)
Autopsy case of acute encephalopathy linked to familial hemiplegic migraine with cerebellar atrophy and mental retardation. Neuropathology. 2005 Sep;25(3):228 (causes of such include mercury toxicity)

Retrospective and current risks of mercury to panthers in the Florida Everglades.
Ecotoxicology. 2004 Apr;13(3):223 (clinical symptoms, including ataxia and convulsions)

Brain sites of movement disorder: genetic and environmental agents in neurodevelopmental perturbations. Neurotox Res. 2003;5(1-2):1-26
(mercury can be a factor in ataxia disorders including autism, ADHD, parkinson’s, Frederrich’s ataxia, etc.)

The Mt. Diwata study on the Philippines 2000-treatment of mercury intoxicated inhabitants of a gold mining area with DMPS (2,3-dimercapto-1-propane-sulfonic acid, Dimaval).
Sci Total Environ. 2003 May 20;307(1-3):71-82.
(mercury causes neurological problems including ataxia, which improve after mercury detoxification)

Clinical investigation of the lesions responsible for sensory disturbance in Minamata disease.
Tohoku J Exp Med. 2001 Nov;195(3):181-9 (mercury posioning)

Chronic neurobehavioural effects of mercury poisoning on a group of Zulu chemical workers.
Brain Inj. 2000 Sep;14(9):797-814. (mercury causes ataxia/impaired motor function)

Effects of protein-deficient nutrition during rat pregnancy and development on developmental hindlimb crossing due to methylmercury intoxication. Arch Toxicol. 2000 Jul;74(4-5):196-202
(offspring from mothers on the protein-deficient diet were found to be more sensitive to MeHg-induced ataxia than those on the protein-sufficient diet)
Occupational and environmental toxicology of mercury and its compounds. Satoh H. (mercury causes neurological conditions including ataxia and similar for infants born to mercury toxic moms)
MRI findings of Minamata disease--organic mercury poisoning. Korogi Y, Takahashi M, Okajima T, Eto K. (mercury toxicity from seafoof with mercury causes neurological conditions including ataxia)
The toxicology of mercury. Crit Rev Clin Lab Sci. 1997 Aug, Clarkson TW. (merucy vapor and organic mercury cause neurological problems including ataxia)
(these are the first page of studies documenting mercury causes ataxia and usually improves after mercury detox; there were several other pages in Medline abstracts)