UPDATE: So...after the MRI hullabaloo yesterday...went to my neurosurgeons office appt today and when they heard what I was told, Jessica my surgeons awesome PA was cursjng too!! :( So we pulled up the xrays and looked at them together. SONOFA*BLEEEEEP*!!! The Radiologist said the 4 staples we left in on one of my rib incisions in to heal another week was what the radiologist said was Spinal Cord Stimulator reminants... on my RIBS!!! no where near my spine!!...Grrr!!!! 1. Location...seriously? 2. When he/radiologist compared to where my stimulator was and physician and PAs charting on the 3 incisions its noted we left 4 staples superficially in longer for better closure over mr ribs. 3. FYI for some: you can have incision staples and still have MRIs. I also have clips inside me from various surgeries he did not mention or have an issue with...because they arent an issue!! Modern material is for the most part MRI COMPATIBLE!! So my PA called and educated the radiologist (which is scary...what does he miss or call wrong that is so basic or even more complicated all the time????) To be sure lol, we removed the staples. Tomorrow 10:45am will go again for my MRI of my low back or lumbar to sacral spine which is for the numbness in that area to back oh my thighs post op. Then 3pm to see the orthopedic surgeon for both knees as my good one is giving me hell too lately...lol...all one can do is laugh at this point. Thankyou Ehlers-Danlos Syndrome. The bad knee we are in progress to move forward for a total knee replacement and will likely do MRIS for both knees. We know I have 5 fractures in my bad knee right now already. Am a little scared to find out the rest of the damage. Wish I could say just MRI the hell out of everything I have, head to toe lol and cover all of the bases. Why not? EDS affects everything...makes sense to me lol. Wonder if I could request a different Radiologist read these films and someone re-read anything else of mine that hes read. I just am so sick and tired of tests I dont need his BS too. When I was done today my neurosurgeon gave me a hug. Which was nice and surprising considering everything. Apparently the radiologist called back and apologized profusely according to my PA. ;) when I got home the radiologist had cancelled all of my MRI orders and the tech who answered the phone was so rude. I tried to say that the radiologist made a mistake which I described and that I was told *BOOM* she says I am going to stop you right there, and she goes into detail as to why they deleted me from their system because I was never going to be eligible to have an MRI since I had spinal cord stimulator remnants. (Seriously??!!! Shut the front door) I asked for her supervisor and we got that straightened out real quick. I swear if I had any other alternative at this point I would tell Tualitys Healthcare System to go to hell. I would do it now but I really like and trust my orthopedic surgeon and need him for my knees. I also really LOVE my primary care doc and the whole clinic. He doesnt accept other insurances so eventually I will have to after my knees. Paid out of pocket to see the EDS therapist and she was amazing AMAZING!! We just talked and she took a look at a few things but no PT yet for a few more weeks but gave me a great list of things to get going on some supplements and diet for EDS and Mast Cell Activation Disorder MCAD which was visibly flaring yesterday. If I have am stressed, in pain, have dental work, surgery, and the list goes on my skin blisters sometimes, I have malabsorption of some nutrients (like iron), my skin on my face and chest flush and turns red...Ughh Anyhoo she was very helpful. I am going to have to get really dedicated for Sophia and I nutritionally (low Fodmap/Paleo diet). Am really bummed on the no grains thing...I like my grains. I will give it a good try and if it helps I will make it a permanent habit as much as possible. And I have to say good bye to my diet coke :( (super sad face) I love me my diet cokes. Embarassing but true many days its all I used to drink. I feel more positive that there are things I can still do and new things to try that I have the ability to help Sophia and I and maybe others again too someday. (A girl can hope :) )
Posted on: Fri, 16 Jan 2015 03:36:44 +0000
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