After a month, I excused him, saying he was a very busy specialist, and I couldn't expect him to drop everything for me.
After two months, I excused him, saying that my situation was tricky, and I couldn't expect him to just jump in and do the nerve release we had discussed.
After three months, I started to think that maybe I had dreamed it all.
After five months, I was pretty sure that he had forgotten who I was.
After six months, I started ringing his receptionist daily, trying to get some answer, any answer. Every time, she told me she would talk to him, and call me back, and every time I would have to call again, because she never did. Until one day I actually got a call, which turned out to be a disappointing one, left on my voice mail "I am very sorry, but Dr does not think you are a candidate for surgery." NOT the call I was expecting at all. We made an appointment with him, and insisted that he explain what he was thinking, and how he had managed to forget me. He pleasantly surprised us, not only had he not forgotten me, but he had been doing some research, and decided that I must have Charcot-Marie-Tooth Disease, and I had to get the genetic testing done. So I started the roller-coaster of visiting another doctor, explaining my story, more tests, etc etc. Fortunately those ones came back negative, and I was relieved that I didn't have that awful disease. But it put me back where I was at the start of this year, having to go back to the first doctor and retry to convince him I needed the surgery.
A week ago, I sat back down with my lovely doctor. Once again he made me feel heard. Once again he made me feel like we were moving forward. He sounded very convinced that the nerve release in my arms was exceedingly successful, and that the equivalent operation in my legs was the right way to go. He warned me that I would have some rather large scars on my legs, and I answered that the scars were such a small price to pay for being pain free and able to walk properly again, and that I really didn't want to live with this pain a single day longer than I had to. He seemed very convinced. So I asked him when we could go ahead....
HE DOESN'T EVEN DO THAT OPERATION!!!! But he would be keen to watch when it does happen!!!
I don't know why my arm surgeon sent me to him?? I don't know why I have spent countless hours going to him, explaining my story, ringing his receptionist trying to get an answer.
So as I picked my jaw up off the floor, he told me that he would make some calls "tonight" and I should ring his receptionist in the morning to find out what I was going to do next. He was going to ring my arm surgeon first, to see if he wanted to do the surgery in my legs, then ring another specialist to see if he would do it instead. He reassured me that he would pass on all my story to the next doctor, so I wouldn't have to sit and explain everything to him. I left there a bit disconcerted, but certainly happy to seemingly have a doctor as my advocate.....
I rang the next morning, and was told that he had tried to call my arm surgeon, but he was away, so my Dr would be calling him over the weekend, and I should call back Monday.
I rang on Monday, and was told that he had a very busy weekend, and she would ask him last thing what was happening and call me back on Tuesday.
I didn't get a call on Tuesday.
On Wednesday, I was starting to feel despondent, so got my wonderful hubby to call, and he got the same run around, they would talk to him and call me back.
Here I am Thursday night, a week later. I have heard NOTHING.
I don't know what I'm meant to do. Where is the point that I cross from persistent self-advocate to crazy & annoying??
I don't want to live with this pain anymore. I have a specialist orthopaedic surgeon who can explain to me exactly what is happening with my nerves, that they are inflamed not compressed, so they will show up perfectly on every single scan you can throw at me, and nerve conduction velocities will be normal. I have a doctor who believes me!! But for whatever reason, he is not helping me.
So I keep waiting.
I will call again in the morning, if I can bring myself to do it.
I can already feel myself slipping, the reality of waking up each morning in pain is a lot to bear, and the thought of being rejected again, told I have to start the whole process again with a new doctor, is such an overwhelming concept to me, that I wonder how I keep pushing.
Then I find myself again in the Psalms. King David has been such a huge comfort to me, the way he seems to be struggling with depression and anxiety, but still he turns everything back to our amazing God and relies on His strength. Psalm 119:50 "This is my comfort in my affliction, that your promise gives me life."
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