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New Member Introductions If you just joined, please introduce yourself here. Please add a signature describing your spinal history (use the "User CP) and ask us how we can help you get started.


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Old 01-15-2023, 07:15 PM
itsdevo itsdevo is offline
Junior Member
 
Join Date: Jan 2023
Posts: 9
Default Hello, new here; introducing myself!

Hello, I am so glad I found this forum!
This emotional roller coaster never ends. If you have been stuck in back-pain-prison I'm sure you understand. While sitting in a chair at 3pm on Oct 1, 2018 my L5S1 sponteneously ruptured and I have not been able to sit upright since. I am thin and pretty young and ended up being diagnosed with a connective tissue disorder (Ehlers Danlos Syndrome) as the only explanation for why my disc would just burst spontaneously. For 5 years my life is but a shadow of my pre-disc-rupture life- I used to rock climb, do kung fu, ski, do standup comedy, and I was a musician who fronted a band for 15 years, I used to be a nerdy tabletop/D&D gamer seated around a table as us gamers do. But then, 3 of my discs extruded (ruptured) in 2018 after falling off a roof and landing on my arse. The L5S1 is completely toast.

Because of this, forget skiing, I can't even sit in a chair for more than 15 seconds. *For 5 years now*. I can't stand more than 5 minutes. Yes, I have to squat on the toilet; I have hand controls in my car so that I can drive while squatting; But I'm done with this, and with the American doctors telling me they'd have to fuse several levels. It's been 5 years of this proverbial "prison", I've tried everything, BUT I will never give up hope, I know "parole" is possible now that I know about Lumbar ADR!!

I am actively researching surgeons in Europe for a multilevel Lumbar ADR. Last month, I was *almost* scheduled to see Dr Bertagnoli, my first choice, who agreed I need a 3-level surgery, but then I never heard back from their office after his international liaison said they'd contact me for scheduling. My only point of contact is the int'l liaison who is not giving me any clear expectations. I am in the process of refreshing my German (spent a year rock climbing in germany 15y ago) so I can call Dr B's office directly to see what the hang up is. In the meantime I am reaching out another German surgeon
(Dr RitterLang) who has a much more helpful int'l case manager but the surgeon has lots of negative reviews..
So I'm looking for discussion and advice about:
1.) Which surgeon is as good as Dr Bertagnoli for multilevel Lumbar ADR, and
2.) How to reach Dr Bertagnoli's office bypassing his checked-out international liaison.
__________________
At 3 pm on the afternoon of Thursday Oct 11, 2018, while sitting at my desk, my L5/S1 spontaneously collapsed and the two discs above herniated. I have not been able to sit or drive since.
5'6', 135lbs. Diagnosed with a connective tissue disorder, explains the cause.
Allergic to opiates. RFA, PRP and intradiscal stem cell no help. Epidurals every 8-12 weeks, 15 and counting.
Was 'getting my affairs in order' when I learned about overseas multilevel lumbar ADR. Hope restored!
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