Hi Barbara! Thank you so much for reading and more for responding!! I wrote this just trying to process the latest doctor visit I had had, so I understand it reads a bit awkward, as I was quite shocked that my geneticist appointment gave me more questions than answers. (on top of feeling guilty that I was disappointed in the GOOD news and worse for asking actual EDSers about what to do next!)
I really appreciate your input here, and find what your saying so encouraging! I do not think that my specialist used the Brighton Criteria which would be interesting to inquire further about! (if only my insurance wasn’t such an obstacle course) It is amazing of you to tell me about your specific diagnosis journey- and very reassuring knowing you found answers eventually!
At this point in my diagnosis, I am not stressing the label so much as I am the individualized evaluation of whatever is going on with me. I’m recalling my experience with having POTS symptoms- went to the Cardiologist, told I did NOT have pots, but still put on florinef by my GP- and felt better! I didn’t worry so much that I don’t have a label of Pots, because I at least have results with the treatment and get to get on with living (well on good days)
I am trying to get my life together and move forward with as little complications as possible. (IE: I need decompression surgery, and just want to be sure that the right surgeon for me will be doing the right procedure for me) It is documented that some EDS patients that have Chiari surgery need a carefully modified procedure- so it is important for me to know if my hyper-mobility is causing CCI or something like that- even if it isn’t called EDS by my doctors- as long as they check- at least it would be one less thing to worry about for me come BRAIN surgery! (of course when I bring this up to a neuro they usually roll their eyes before I am able to cite my sources because very few will look below the neck as it is not their specialty)
Thank you for sharing your opinion- just reading your info makes me feel validated in my tenacity, you are juggling so much yourself, my heart really goes out to you and that makes me that much more appreciative of your precious time and energy!! (some days it takes everything in me to not say “I quit- hypochondria is a real disorder too- why not just let the doctor cut without asking more questions”) The truth is that I have strong misgivings, and they stem from my real experiences with medicine and with my family’s medical history of “being odd” or “unlucky” … so if EDS is causing my Chiari, or even if Chiari is just running a muck without the extra complication of connective tissue disorder- I still want to be confidant in my surgeon and realistic about surgical outcomes for my body.
I want to make this life changing, difficult decision with as much information as possible, so that it is an informed decision and I know what my risks are. I do not wish to spread fear around further, but I do want to advocate that when dealing with ‘rare’ or ‘uncommon’ disorders- maybe finding a specialist is also ‘rare’ and uncommon- your sharing reminds me of that too! I do believe it is possible to find answers! At times, I wish I was not a curious patient, that I could just trust that my neurosurgeon knows best- he probably does, he is a miracle worker for everyone else (but he has been the opposite for me in the past- so one can understand my hesitations). I am strangely comforted by details of both the problems and the solutions to them, so I will continue to ask questions because that’s what works for me. I can’t change who I am.
Seeing that you struggle with chiari 0 makes me feel that you know a lot about the grey areas of this stuff and can empathize. I am so sorry to hear that you have so much going on- I wish you all the best!! I am so hopeful for all of us here- especially finding that we care about each other enough to speak up or discuss controversy (across ponds even!!). Your story is helping me immensely, maybe mine will help someone else later… I will do anything to not feel like a guinea pig; or have someone else go through unnecessary struggles when the latest research could have better and perhaps easier answers..(smile- DRISCOLL even!) thanks again!! and thank you Dr. Diana for the place to chat! (again- can I move this topic to Chiari/eds or something so it’s not under latest research??)