Are there anyone with inoperatable Arnold Chiari Malformation?

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My sister has been diagnosis with this and has been told by her doc that it cannot be operated on. She would like to know what will happen and I would like to communicate with people who have this. We have already gone to all web sites about this and would like to talk with real people. No satisfaction, we would like the truth
YES, I ALSO HAVE SYSTEMIC LUPUS WITH ORGAN INVOLVEMENT...HEART, KIDNEYS AND LESIONS OF THE BRAIN. MY SPINE IS CURVING MORE AND MORE EVERY YEAR (SCOLIOSIS, WHICH I WAS NOT BORN WITH), I HAVE ARTHRITIS, BURSITIS, OSTEO, OSTEOPINA ( HAD A COMPLETE HYSTERECTOMY IN MY EARLY 20s) OF THE SPINE AND HIPS AND OTHER JOINTS. I HAVE DEGENERATIVE NERVE DISEASE. SEIZURES (FROM LUPUS, AND ACM) SLIGHT BRAIN DAMAGE FROM LUPUS AND SEIZURES....CFS OF COURSE IS FLOWING ALL OVER MY BODY , NOT WHERE IT SHOULD BE...30% LOSS OF VISION...I DO NOT WANT TO GO ON AND SCARE YOU, I HAVE LUPUS ALSO, SHE DOES NOT.... YOU NEED TO SEE A NUEROSURGEON WHO IS QUITE KNOWLEGEABLE ABOUT ACM. JUST TYPE IN THE LETTERS TCI...(AND YOU WILL SEE THE CHIARI INSTITUTE, LONG ISLAND, NY). READ ABOUT IT, LISTEN TO THE VIDEO WITH DR. B. AND CONTACT THEM, THEY WILL HELP...I PROMISE. PLEASE GO TO MY 360 PAGE, INSTANT MGS ME NOW, IM ON! PEACE......  (+ info)

anyone else on arnold chiari malformation, (chiari i)?

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arnold chiari malformation is when a bone in the back of the head/neck is too thick and it blocks fluid from flowing down the spinal cord. and fluid builds up behind that bone. if not treated, it can eventually result in paralysis from the neck down. i had surgery for it when i was 8, and everything has looked fine since. i'm in high school now and as of the past couple years my neck and back-of-the-head area aches a lot whenever i take part in any strenuous physical activity or if i carry something heavy for a long period of time. sometimes it feels like there's a pole jammed up my neck. i went to a physical therapist and she gave me these stretches to do that strengthen other muscles. if i do them then i feel fine, but if i don't, i can't really run or anything without neck pain. a couple of times it was so bad i couldn't sleep. i'm learning to handle it, i just wanted to hear from other people who have had a similar experience with (or possibly without) arnold chiari malformation
I have Chiari too.

A lot of people with Chiari have multiple symptoms that aren't specifically addressed.

You'll be able to find out a lot of helpful information on the Chiari Institute site.

They preform 300 corrective surgeries per year and are the leading Chiari specialists.

Another site that has the BEST information is the Chiari Connection International.

Good luck...it's a hard thing to deal with when people can't "see" your condition.

Also, feel free to get in touch with me if you'd like more information.  (+ info)

I have arnold chiari malformation, can i do weights?

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Does anyone know about arnold chiari malformation?

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Yes, it is a defect in the back of the brain... usually something causes it like the spine being tethered or spina bifida, causing the spinal cord to pull on the base of the brain. The back of your brain curves under a little and there are abnormalities that result. From what I understand, since the stem and base of the brain control critical functions such as body temperature, it can cause lots of weird symptoms like erratic temp fluctuations, irregular breathing or fainting spells. that's all I know. I would suggest doing research on the internet though from a more reliable source. I'm not a doctor. I do have a niece who has spina bifida and has this problem too. I hope I explained it right, it was just how my neice's parents tried to explain it to me.  (+ info)

Arnold Chiari Malformation botched surgery?

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My sister had surgery. & has never been the same since. she claims that if she was to do it again, she would rather suffer the malformation side effects. Is ther hope for her to "recover"? Has anyone had a botched surgery for this malformation?
Sorry to hear that happened. Botched is a subjective term. It is common for multiple surgeries of this condition, especially if it is stage 2 or stage 3.

It is a blockage caused by a skeletal malformation pinching the spinal pathway as to restrict the flow of Spinal Fluids.

Decompression is the only known surgery, and it depends on the extent of the malformation and how restricted the spinal tube is as to the need for surgeries, and not a single surgery.

No one can give you a prognosis, as to recovery. It is different for each patient. But without additional surgeries it is likely her condition will stay the same or worsen.

Sorry, if you expected a positive spin but this is a rare disease. Your sister needs to research this intimately before making any concrete decisions about not having another surgery. Get a 2nd opinion !!

If your confidence is shaken with this doctor seek out another. The March of Dimes is a great place to get some info as well as the NIH (if you are in the US).

When I researched it, for a friend's child, and talked to several people about half said they were able to get some relief from surgery while the other half didn't have any change of symptoms.

I assume your sister has Stage II Chairi, and I wish I could say she'd benefit from additional surgeries, but as I just said the prognosis with Chiari is mixed, and depends largely on the severity and the person.

Also the previous answer is correct. If there is any spinal cord damage (seperation, athrophy, etc.) then the prognosis is that any additional surgeries probably will not change the outcome.

She has to weigh this into her decisions.  (+ info)

Has anyone ever been diagnosed with an Arnold Chiari Malformation type I?

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just wondering as I have, and wondering about your experiences.
Thank you
i have chiari malformation type 2 i think.. i dont really know because im only 13 soo its either 1 or 2.. i just got surgery for it about 1 or 2 weeks ago.. its helping alot they took out part of my skull and two pones in my neck to releave pressure [the fluid] in my spine that has been building up. i have to go for an mri soon to see if the fluid in my spine has gone down any. My neck was sore after the surgery and all that but idk if you need this type of surgery.. i got it done at the mayo clinic in minnesota. GOOD LUCK!  (+ info)

I want to start a fundraiser for a friend that has Arnold Chiari Malformation. He can't work-Needs Med.Attn.

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Arnold Chiari Malformation is a malformation of the brain and causes nerve pain. The pain is exruciating for my friend. He is at his wits end and we really don't know what to do. I have some puppies right now and I thought maybe I could use themin some way to start the fundraiser. Use them as prizes in a raffle or some other contest. If he doesn't get some help soon, I am afraid he may take his own life due to the unbearable pain. WHO CAN HELP??????
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.

Where do you live? If you are near a major medical center then there has to be a neuro surgeon that can treat him. If he is unable to work he should be able to get Medicare. I do not know a neuro surgeon that does not take Medicare. E-mail me [email protected] and I can point you somewhere. He needs to go to the Medicare office and apply. Is he showing signs of hydrocephalus, syringomyelia, and spinal curvature?

He might contact the March of Dimes and see if he can get assistance through them.  (+ info)

Does anyone else have arnold chiari malformation?

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I do. Hi, nice to meet another chiarian. How is life for you? I have been diagnosed with ACM since 1999.  (+ info)

in how many people does the Arnold-Chiari malformation happen in?

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like 1 in 10 or wotever
No one knows. It happens a lot in people with Spina Bifida though.  (+ info)

questions about arnold chiari malformation type 2?

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My daughter who is 27 months old was found with this condition and last year had a decompression surgery to help fix the problem. My question is for either people who have experience working with this disorder, or for parents with children who have it. Do these kids often have issues with growth? Are they found to be more apt to turn up with metobolic issues? Does the decompression surgery have to be repeated in the future? FMI: My daughter wieghs just shy of 19 pounds, and struggles to keep that much. After having done every test known to man it seems, nothing has been found to explain this. She did not eat orally for some time, which improved after the surgery, however she still has a night pump. As of late she has begun to express pain in her back and head, in her 2 year old way(which is putting her hands on her head and SQUALLING) We have an apt in two weeks, I am just curious about others experience with this.
Thanks
I don't know anything about kids, per se squalling...here are some links to arnold chiari malformation...almost lost your question after I found all these links..

Arnold Chiari Malformation and syringogmelia (brain and spinal cord disorders)

http://www.clinicaltrials.gov/ct/gui/c/a2b/screen/BrowseAny?recruiting=true&path=%2Fbrowse%2Fby-condition%2Fhier%2FBXR.b%2FD001139%2BArnold-Chiari%2BMalformation.k&JServSessionIdzone_ct=andm6prvo1 (clinical trials)
http://www.ninds.nih.gov/disorders/chiari/chiari.htm (national institute of neurological disorders and stroke)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=mesh&list_uids=68001139&dopt=Full (national library of medicine)
http://www.nlm.nih.gov/medlineplus/headandbrainmalformations.html (medline plus)
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arnold-Chiari%20Malformation (national organization for rare disorders…scroll down for related resources)
http://www.pressenter.com/~wacma/ (world Arnold chiari malformation association)
http://www.pressenter.com/~wacma/info.htm (link list)
http://www.pressenter.com/~wacma/usdocs2.htm (list of doctors in the U.S. referred by their peers)
http://www.pressenter.com/~wacma/alldocs.htm (list of doctors outside the U.S. referred by their peers)
http://www.asap.org/resources/deciding-physician.html (choosing a physician)
http://www.pressenter.com/~wacma/surgical.htm (results of a study on surgical treatment)
http://www.pressenter.com/~wacma/bovgraft.htm (information on bovine dural grafts)
http://www.pressenter.com/~wacma/milhorat.htm (scroll down for resouces for families)
http://www.asap.org/syringomyelia.html (what is syringomyelia
http://www.asap.org/chiari-malformation.html (american syringomyelia alliance project…chiai malformation)
http://www.asap.org/research/duck-study.html (Duke genetic research study)
http://www.asap.org/resources/symptoms.html (symptoms)
http://www.northshorelij.com/body.cfm?ID=6407 (the chiari institute)
http://www.northshorelij.com/body.cfm?id=6475&oTopID=6475&PLinkID=6407 (marissa’s story …I think her story was on a medical mystery show)
http://www.chiaricare.com/ (the chiari treatment center)
http://www.theannconroytrust.org.uk/ (the Ann Conway trust for syringomyelia research)
http://www.theannconroytrust.org.uk/about.htm (about the charity)
http://www.theannconroytrust.org.uk/info.htm (chiari)
http://health.groups.yahoo.com/group/ChiariConnectionInternational/?yguid=124775342/ (yahoo chiari groups international)
http://www.experienceproject.com/group_profile.php?g=4146 (patient stories and support)
http://www.mayoclinic.com/health/chiari-malformation/DS00839/DSECTION=8 (chiari malformation..mayo clinic..see box above for more links)
http://rarediseases.info.nih.gov/asp/diseases/diseaseinfo.asp?ID=9232 (NIH ..office of rare diseases)
http://rarediseases.info.nih.gov/html/resources/info_cntr.html (NIH, office of rare diseases..address and phone numbers)  (+ info)

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