2 mo post op mri and appt with dr oro

[Sexybare]

Went fri, have a lot of swelling that's blocking my csf flow

[Rylanesmom]

My daughters rheum diagnosed her with EDS and did X-rays for cranial instability and is sending her to spine dr and also geneticist.  He said that we don't need geneticist to diagnose EDS yet their expertise will be helpful at further helping her:) so I agree both but as Selma said hard to get geneticist without referral...mine did not see reason to send me so I am hoping this will help us all:)

[selmaS]

  Hi...a rheumatoid Dr is who will dx EDS a bit more detailed then the NL as long as they know EDS...but they should send u to a geneticist to get more testing to see what type it is ....this is what I was told....to see both.

Not sure if a geneticist would see u without u going to the rheumatoid first...

2 on beighton is enuff to say it is EDS....but not to say which type.

[czpdx]

I'm sorry to hear about this! I was in the ER about 6 weeks post op with swelling. Now (a few weeks later) it has completely resolved -- no sign of fluid anywhere except where it's supposed to be. Hopefully yours will resolve on its own too!

[linnielou232]

So sorry to hear about the fluid, but as Selma mentioned every surgery needs more time for healing.  We don't bounce back as fast.  It takes a lot out of us.  I wish you the best and please just take one day at a time and you will get stronger.  Many blessings.
Linda :)

[Viva001]

sorry.  i guess that does explain your not bouncing back yet.
you dont take ibuprofen?  i may or may not take the stronger stuff,  but i hardly go a day w/o ibuprofen.

i hope that you're able to take good care of yourself.

[Sexybare]

So instead if rheumatologist I should see a geneticist for eds? Dr oro said I scored a 2 on beighton scale. But my nl sees more symptoms. I jst need ti see if its a possibility?! For myself. I have a ppo so I don't need referrals :)

[irislita]

sorry for u...this is a neverending trip i know...i am so afraid of tomorrow to see the specialist.i hope i dont cry again infront of him...i am wishing u the best sweety <3<3<3

[Rylanesmom]

Dana Dr Oro diagnosed me with EDS.  Was he unsure based on the beighton scale?  Good luck with the rheumatologist did you make sure they know what EDS is?  If you can get a referral to geneticist that may help.  I did not have luck getting referred being told by rheumatologist that it didn't matter what kind that he was pretty sure classic or hypermobility  My daughter however has been referred to geneticist on 11/30 and since the same type runs in a blood line the puzzle pieces may get more answers.  I called probably 15 rheumatologist and none of them knew what EDS was and then when I finally found one that treated EDS he admitted that it was a rare instance that he saw anyone with EDS and I was not excited about our visit.  I am going to revisit him now that I am post op chiari.  He had told me that my issues would not all go away and to see him when I still had pain post op.  I thought he was a jerk and was mad...well he is right and maybe he just couldn't help pre op while I was on all those drugs already.  Good luck!  Keep us posted.

[Sexybare]

I haven't been diagnosed with eds yet. I see the rheumatologist on nov 5th.  But that may be the reason, don't know yet. Thanks selma, hope u r well hugs,dana

[selmaS]

  But didn't u say u were dx'd now with EDS? If so, this is ur 2nd surgery and we tend to heal slower then most...so add the fact it is a 2nd surgery and the EDS...that could be the reasons.

  Continue to rest up...and find that PT he said u need..... <3

[Sexybare]

He said hopefully as I heal it will resolve otherwise will have to go back and discuss my options. He didn't even give me an anti inflamatory or anything? I have 8 weeks of therapy with deep heat massages and I have to find a pt in my area but he gave me a specific script for the pt. I have to keep in touch with him and I'm off work til dec 15, if ill even go back then he said. He doesn't want to go back in unless he absolutly needs to. But I can't imagine the swelling being a good sign? Has anyone else been told this? I'm a lil scared about it. Guess I have to wait and see. He said it was worse once he got in my head for my surgery than he thougjt. I had damaged muscles and a callous on one tonsil, had to take out more bone and open dura to find two venous bleeds to fix, put in plate repair muscles and cauterize the tonsil with the callous. But the swelling concerns me?!

[selmaS]

  Aww sorry...yea, what does he suggest?

[Rylanesmom]

:( that would explain feeling bad!  What now?