I know this is my second entry today, but I figured recipe entries don't entirely count (and I happen to be extremely windy and always have something to talk about!)
Tuesday I am going to see a new surgeon about my shoulder. I've mentioned a little previously of my shoulder woes, but I didn't really go into too much depth. My first surgery on my shoulder was in 1999. The Dr. thought I might benefit from a newer procedure. He went in laparscopic and basically heated my ligaments up in an attempt to make them tighten up. This surgery was an epic fail, it actually made my shoulder worse. Six months later I went in for another surgery. This one involved opening my shoulder up and doing some cut and pasting to tighten it. This surgery took really well. I felt almost 100% better for five year, then I started loosing up again. In 2005, I had one more laparscopic surgery to do a little more tightening. The Dr. was really careful with me and my physical therapy because he didn't want it to loosen up again. I had the surgery in April, but the end of December I still hadn't gotten any motion back in it. So we decided to do a manipulation which is where you are put to sleep and the Dr. moves your shoulder in attempt to break up any scar tissue causing problems. It worked and I got all my motion back, however the pain has never left. Seven years later, here I am. I have tried various methods of pain management in the past 7 years. Countless injections and nerve blocks, physical therapy, biofeedback, tons of pain meds, and I even had a neurostimulator implanted in my spinal cord.
Recently, I have come up against a big problem. My original shoulder Dr. refuses to do anything more for me. He is afraid that it will just make it worse (he could be right). I've gone to two different pain management doctors in the past 6 years and my current one told me a few months ago that he isn't comfortable just prescribing me pain meds without me doing injections or whatever. I was actually completely floored by this. I left the office crying I was so upset. I mean, I need a pain management doctor for the very least to help with the maintenance of my spinal cord stimulator. I had called the reps for company who makes my stimulator and wanted to set up an appointment with them to get readjusted and they said my Dr. wouldn't let them do it without him being in the office. Needless to say, I was left feeling set adrift with no real help with pain management. I understand that being on narcotic pain meds for the rest of my life is going to slowly kill me and my organs will shut down. I also get that it's difficult as a Dr. to just keep giving pills because the DEA monitors everything and ideally a patient would be getting better and no longer needing pain management. But how can a doctor whose title is to help you manage your pain leave you hanging out to dry and in pain? I had an appointment with my internist not long after all these and asked him if he could refer me to a new shoulder doctor. He asked around and found me this doctor I will be seeing May 1. At one point, my previous shoulder doctor had mentioned in passing that maybe having my ligaments replaced with cadaver ligaments could be a good option for me (I am under the understanding...FINALLY....that the reason I am in so much pain is because my ligaments are basically non existent. Between the first surgery I had and my Ehlers Danlos, my ligaments are completely worn out). I called the new doctor's office (Dr. S) and his staff told me he didn't do second opinions and he didn't really meet with patients he strictly did surgery. Ugh, why is everything so difficult? So anyway, I made an appointment with his assistant (I call him the gate keeper Dr. hahaha). I saw him in March. It was a pretty interesting appointment. At first he acted like he didn't know what Ehlers Danlos was. Then, he acted like he didn't believe me and ran my mom and I through a bunch of tests. Finally, when we convinced him we did indeed have Ehlers Danlos, he had us do our tricks and told us he has a cousin who has it too. It was all pretty funny actually. This was the first time in six years that I had a doctor listen to me. He decided that I would indeed benefit from meeting with Dr. S. I have waited for this appointment for a month and a half (calling every week to see if there was any cancellations). I am half excited and half nervous for this appointment. I am scared to get my hope up. I haven't had any luck with other Drs I've seen. If the ligament replacement surgery is something that might be viable option for me, then I have to have more surgery (duh, right?) Maybe he will have some other ideas that will be better. If I need surgery, when will I get it done? Soon? If I have it soon all my gardening and yard work will be in vain. If I have it later, it could interfere with my vacation. I am trying to decide if it's worth doing it before July 1st because my insurance is paying 100% right now (that is, if the Dr. can even get me in before then) or would it be smarter for me to just wait till after July 1 and our vacation and after this surgery my insurance will cover everything 100% again for the rest of the year (till the end of June). I guess I am putting the cart before the horse. I don't know if he can even help me. I shouldn't stress just yet. Hahaha...so much easier said then done! It would be absolutely amazing if he could find something that may help me. I don't know if I can live like this forever.
No comments:
Post a Comment