May 25, 2014 at 4:04 am #705RaeParticipant
I’ve stopped by several times over the past couple of years following your research with great interest. I have a problem that has become severe and intractable and currently has my drs very puzzled…and I have a phenomenal team of drs. Short story, I have a EDS Classical with some vascular access issues and multi-system involvement. In addition I have Chiari, Dysautonomia, Crazy bad Intracranial hypertension, gastroparesis, etc. I’ve had a successful tethered cord release & Chiari decompression & fusion. After my decompression surgery, my headaches got worse and my intracranial pressure went up considerably (verified). My CSF pressure is labile (not steady but moves with breathing,speech etc.) After multiple different attempts at shunting, my pressure remains high with the shunt valve at the lowest pressure setting. They are now realizing that something with my EDS/Chiari mix is causing problems but we/they don’t know what that might be. I’ve tried Diamox for months with no relief (and very sick from it) as well as it’s cousin drug methylzolamide (sp?) with no success.
If you have any thoughts on this, I’d really like to hear them. You can email me, contact me via these forums or whatever works for you. Mine is a complex case with numerous doctors following me. I don’t know I if it will interest you or not and either way is fine. Of course I’d love to hear your thoughts but I know your time is limited and you must pick and choose what to get involved in. I just desperately need to get my pressure down as I can’t cope with this constant crushing brain pain.
Either way, thanks for all of your work in the connective tissue communities. Take very good care of yourself.:-)June 1, 2014 at 9:52 am #5020Dr. DianaKeymaster
This is Dr. Diana’s husband. I’m sorry to hear that you continue to be symptomatic. Dr. Diana has been in the hospital and is still in recovery mode so unfortunately she is unable to do consults for the time being. She looks forward to getting back to the forum, but for now she has to focus on getting stronger. Sorry we can’t be of more help at the moment. She sends gentle hugs.
RADJune 1, 2014 at 4:28 pm #5022RaeParticipant
Thanks so much for taking the time to respond when you also have so much on your plate with Diana’s being in the hospital. I wish her all the best in her recovery and hope she’s feeling better soon. These are challenging illnesses that we’re all dealing with and I hope for the best for both of you. Take very good care.
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