chiari 1 malformation & marfan syndrome - does anyone have both?

[sara]

just looking for more info on connection between the two

[Mike Weins]

Hello Sara and welcome to BrainTalk

I unfortunately have no answers for you. However I will give you the links to the 2 forums that might hold the answers you seek.

Arnold Chiari Malformaion forum <--click to visit

Marfan syndrome forum <--click to visit...even though it's empty right now there may be folks reading.

If you have further questions don't hesitate to ask

[~Pansy~]

Hi Sara and welcome!

There is also an Overgrowth Syndrome forum here, but unfortunately, the info is gone due to the major crash we had recently. The hope is that JL, the owner of this site, will be able to save the info and restore it in the near future. I had some great sites posted for a handful of overgrowth syndromes, including Marfan.

Another forum that you might want to post on is the Child Neurology forum as there are parents with CM and that have kids with CM. Collect info where ever you can. Every little bit helps.

P.S. I have a 15 yo son with an "unnamed" overgrowth syndrome and cerebral palsy

[salbayram]

Dear sara,
my opinon, marfan syndrome has a connection between Chiari 1. If you want to talk about please sent a email to me.

sait

[rosie444]

Hi,
I would go to the Chiari Institute home page. They have several great webcasts!. Dr. Bolognese is world renown in the complexities of the entire complex of misalignments etc. that create Chiari. It is not sufficient to say you have Chiari level 1. Depending on odontoid placement, clivus, c1 etc., all explained in webcast, your cerebellar dip may not be rated as high but the compression on the brainstem could still be a major problem and cause of symptoms. I am new to site but have studied topic closely. I could not read your entire post. A Hopkins doc is now making the connection between chiari, c.f.s., and ehlers-danlos. A lot of people with ehlers danlos ( just google also have marfans syndrome.) My daughter and I have it but have not been staged yet. Staging identifies which organs may be involved. Or you may not have any organ involvement. The main presenting feature is hyperflexibility of joints. Not necessarily double jointed. This decreases elasticity of blood perfusion creating low b.p. dizziness, ***tigue, prob. contributes to Marfans as well. Once dx. Marfan's heart probs are easily curable from what I have read and witnessed. Best solution- call numbers listed on The Chiari Institute website in Great Neck, NY. They have staff RNs to answer questions. Do not have surgery without checking with a lot of docs!!!!!!!! Hopefully, new upright MRI's will give a new accurate read on actual cerebellar tonsil dips, since sitting will allow gravity to descend in this area. Lying down in MRI does not reflect much. Rosie 444

[razzle51]

http://www.chiariinstitute.com
Thomas H. Milhorat, MD
Chairman of Neurosurgery
The Chiari Institute
Great Neck, New York

[tonyabeth]

I have chiari, sygronen's and osteoporosis. does anyone else?