Appointment with new geneticist coming up ...

[The_beat_goes_on]

Hi guys ...   I was really on the fence about seeing another geneticist but my neurosurgeons in office genetic counselor referred me to one who is more familiar with EDS and in the hospital network where all my records are (easy!)  the appointment was so far out when I made it (like 4 months ago or something?!) and its quickly approaching ... August 4th, next Thursday.  

I've had a lot of complications after all my surgeries (two decompressions, I don't even know how many shunt surgeries?) and I'm dealing with a lot of pain still.  Head and neck pain, nausea, dizziness, tingling in my arms and I feel so dumb for not doing this before jumping into the first decompression surgery. Like maybe if I would have done this first, and combined a decompression and cervical fusion I would have been better off?  I can't go back so I don't know why I'm torturing myself with these thoughts.  I'm just so tired of surgery.  My last surgery was traumatic for me and I don't know how I'll deal with whatever the geneticist has to say.  

Why am I so anxious? does anyone know what I can expect from a new geneticist?

[selmaS]

  I know far too many are finding out after surgery just how important knowing about a EDS DX b4 hand is....AND I do not have the stretchy skin either....and after seeing so many have issues post op and it leads back to EDS I have to  always tell everyone about it....

As for the flexible part I am not flexible either...at least not when I try to contort the way they tell us we should be able to BUT because our joint are lax our muscles tighten and that is why we do not feel flexible....

[The_beat_goes_on]

The genetic counselor actually had to refer me twice because I called too late the first time.  I chickened out and stalled and they lost my referral.  My insurance doesn't require referrals but I guess you can't just make an appointment with a geneticist without one?! at least here.  I guess I'm mostly anxious that this will only lead to more surgery.  I don't know why that is my fear.  I know I don't have to do anything I'm not comfortable with.  It's crazy, though.  I remember you mentioning EDS before my first surgery and how it can drastically impact the outcome of surgery ... and I was like .. ahhhhh ... my skin isn't stretchy, I'm not that flexible ... no way Jose.  Dun dun DUN!  

What's sad is I know a lot of people are like me.  Most of us don't get diagnosed for decades and are SO ready for a fix that the rest just gets tossed aside. It is a critical piece of the puzzle.  

[selmaS]

  Hi sweetie....look forward as looking back will not change anything now...and you need to focus on what you need to do next.

WOW only a 4 month wait...when I called it was more then a year wait so I never went and can not give you any inkling as to what to expect...

Just focus on this new Dr may have a way to help you feel better.....keep us posted on what you find our....wishing you the best news <3