Well that didn't work.. Now what??

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Yesterday at 7:30am EST I had the temporary implant removed and was done with Axonics sacral neuromodulation. After talking to both the Rep for Axonics and my surgeon it was determined not to do the full implant. The Rep checked my daily logs and saw that there really was no progress. The logged into the temporary implant and saw how high I had it up at times this past week. My doctor looked over everything and agreed with me and the rep. so no implant.

So now I have to heal up and then I will see my surgeon next month and he is going to talk to all of my doctors about the next steps.

He already has me set up for follow-up on the 28th as well. So now to just wait to heal up.

I knew this was a long shot but was hopeful that it would be something that helped me.

One thing my surgeon wants me to do is to see a neurologist regardless of them when we do the ostomy. He also is going to push for a big zoom appointment with all my other doctors so we can all get on the same page. He also knows about my disability claim so wants all my other doctors to get on board with that this trial was the last maybe I had left.

Now just to wait again.

 

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I am sorry about the implant. Mine for SI joint pain will have to come out too. I had an appointment tomorrow but since I hadn’t been feeling well the last couple of days, I took a COVID test today and it was positive. Can’t win for losing. I really agree on your Zoom call idea so that everyone can get on the same page. That is what I am doing but I had to cancel my MRIs and renal X-rays tomorrow too. I know that more minds can make better decisions about your care and disability work up. Best of luck and just heal well for right now.

 

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@ThatFLGuy

So sorry to hear this, but I think most of us (including yourself) expected it.

The ZOOM meeting sounds like a very good idea. So, here's praying that they all cooperate and get something done that actually makes a difference for you.

 

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@ThatFLGuy Sorry to hear it didn't work out, but you did the right thing by trying. It sounds like you're making progress with your surgeon trying to get all of your medical staff on the same wavelength!

One question: you had botox once, and it helped you. Why don't you get it again? I know it didn't help *enough*, but maybe it's worth getting that while you're waiting to get to surgery.

 

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@snow

I am going to talk to my surgeon again about that. The thing is that it took away the spasms but left me like a newborn as far as my bowels go so he was not happy about that.

To me, it doesn't matter because I am already having two-three small bowel accidents a day so what difference does it make if I can feel when it is happening.

 

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I am so very sorry that the implant wasn't successful. But you sound very accepting, which is great. Also, it is wonderful that your doctors are on board with you, and I would love for you to have a zoom meeting with all of them.

With lots of hope for you.

 

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Not a lot has happened in the last few hours but I wanted to give you'll a small update.

Still healing up from getting the temporary implant removes. I have three sets of stitches from it.

I have done a lot of thinking and I am still hopeful that things will change but now know that moving forward means a lot more risks.

There is a lot of information out there about living with/ complications of an ileostomy. Some of them are already giving me anxiety.

My follow-up from this removal is also with a nurse, not my surgeon (Likely to take stitches out) so that means more waiting.

Also, I have to try to work whatever is going to be done around having my parents here for it.

So, yea, Just ready for something to be done.