EDS Evaluation

[czpdx]

Hi all! It's been awhile, but I'm back and have a question. I'm meeting with a rheumatologist for the first time on Wednesday and won't be surprised by an EDS diagnosis. Any tips for my upcoming appointment?
Claire

[selmaS]

  Yup, it is one of the biggest reasons I know for a patch to fail....and y I do suggest to find out b4 surgery as u can avoid using a patch other then ur own tissues to help avoid a leak or failed patch.

Not sure if or how long ur new patch will hold....I know and have known a few others with this same issue.....not sure what to tell u but to take things slow and allow everything to heal....just bcuz u look healed on the outside does not mean u r healed on the inside....so rest, rest and rest some more.

((hugs)) and good luck with the patch.

BTW- let us know of a EDS Dr out ur way, I know of one on the East Coast but not out ur way....so many lists but need a report of how the Dr is....

[czpdx]

Well, I did get the EDS diagnosis. The next step is meeting with a geneticist for testing to verify type. Guess this explains why my dural patch failed -- too bad I didn't know before I had another bovine patch put in.

I wonder if there's any chance that my current bovine patch will be fine in the long run...? Any thoughts on that? The idea of someone going into my head for the 5th time feels overwhelming...

[selmaS]

  Hi....well the questions asked by the Dr are to the point  ....the best tip I guess would be to know ALL ur symptoms ...which with having Chiari may be difficult....but I am sure they will ask u about bruising and healing....they will do the Beighton Score testing...

  Keep an open mind....cuz we never can anticipate what a Dr is going to tell us.

Good Luck.