Life Update.

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So, ER visit went well but now I have a lot more to think about. The big issue is pain and that is not being addressed. They did call me while I was at ER to set up the trial of the Axonics Stimulation implant. My issue though is that it is not made to do anything for pain and as I told the call person I would not be okay with only a 50% improvement in order to do the permit implant.

The Temp is set for the 24th and my Nanny will be taking me for that.

Still not completely on board for this. Going to talk to my PT again the week before so I will make up my mind then.

 

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In the meantime I would talk to all of the medical people you are in contact with regularly and sound your concerns out with them, if I were you.
Since you're not completely on board with this, that is a sign that you should get as much info and opinions as you can and that will help you say "yeah or nay" to this implant. Your main issue is how to get rid of the pain and if this implant isn't designed to help you with that then the question is, "what is going to help with my pain?"

 

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It seems even the simplest of issues becomes a conflict in decision making. I had a "trigger finger"in my right index finger on the right hand. Got a shot and it fixed it immediately after dealing with the problem for several weeks.

So then I got trigger finger in the ring finger on the right hand. Well, I thought, optimistically, a shot will fix that up too. Got the shot. Nothing, the finger kept locking up only it hurt more. I got a splint for it, kept putting glucosamine liquid on it and went back for the follow-up appointment SIX weeks later.

Since that shot didn't work, the doctor gave me the choice of either getting another shot now and making an appointment SIX weeks out for surgery if the shot doesn't work. Or not get the shot and in 5-7 days someone will call me to set up a day for surgery, probably SIX weeks out. He said surgery will fix it and I will have 3 weeks of recovery and the finger will be fixed immediately. But, either way nothing will be fixed for at least SIX weeks. Since the first shot in this finger didn't work I thought there was very little possibility that a second shot would work and then I'd have wasted another $50 on co-pay. On my income that's huge. I consulted with my granddaughter who had accompanied me to the doctor visit and she agreed with me to opt for the surgery hoping that I'll be called earlier and perhaps the surgery could be scheduled earlier than SIX weeks. SIX must be a magical number!

I'm assuming that this red tape has to do with insurance requirements and nothing at all to do with the doctor's schedule or the patient's need. I can't help it everybody; it just reeks of being all about the money.

 

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I am being evaluated to see if my peripheral nerve stimulator migrated and caused my bladder incontinence. It was for pain relief but did not do much. Please be very careful about asking the chance of migration of the device. Just ask questions.

 

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@ritanofsinger , I have a friend that had trigger finger. I found a YouTube video that demonstrated how to self-treat this condition and passed it on to him. He tried it and it worked for him. I think you will find many videos about this, but one of the most popular channels for PT is "Bob & Brad". They have hundreds of PT videos that have helped me. Maybe you can save yourself the pain of recovery from surgery too!

Here are a couple of links on YouTube:

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thanks MezaJarJarBinks - I like Bob and Brad and have watched other of their videos. I have done what they suggest but a couple of things I will try. It looks like my finger has gotten to a point where these exercises alone won't fix it. But like I said, I will try a couple of their ideas. I'll let you know if it works. I do have osteoarthritis in other joints and I tried the apple cider vinegar with mother a couple of times in my life for weight loss but because of acid reflux I had to give it up. Oh to be perfect and free from all the little irritations of life!!!

 

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@ritanofsinger

Good luck my friend, and may your faith in God and Christ sustain you!

 

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Did a lot of talking things over with my mom this morning and my Nanny. Both feel like even if it is the right thing that I need to be 100% ready for it or don't do it. I kind of agree at this point but I would really try anything to get better quality of life if there was a good chance it would work.

That being said I am going to call Tomorrow now that I have a few big questions set out that I need answers to.

 

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MezaJarJarBinks - thanks, but you're mistaken about my beliefs. I am a-theist since 2019. I appreciate your concern.

 

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MezaJarJarBinks - you asked me a question but I don't know how to reply since it is an email and I can't figure out what to do to reply. Sorry

 

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So, Today the hospital reached out for me to call my insurance (Medicaid) about this operation as they need to discuss benefits with me. Big thing is that the Axonics therapy sacral neuromodulation is not approved for bowel issues by FDA yet. I had an issue with my insurance before I had Botox because there is nothing on my records that tells all that is going on so they just look at the dyssynergic defecation that it says that this treatment is not for that.

In studies, sacral neuromodulation for dyssynergic defecation has been done for people with other mobility issues but not someone that was/still is as active as I am.

I do not think that the phone call is going to go well unless there is an RN to talk to. And again I still have a lot of unanswered questions about all of this.

This is Copied from the notes my doctor posted about our last visit.

"Plan / Recommendations
Extensive discussion about his symptoms and next steps. Counseled patients on sacral neural modulators, two-stage implant, r/b/a for fecal incontinence. We discussed that it may not improve his abdominal pain however could help with continence. It does not prevent an ostomy as a possibility for symptom management if he is also refractory to the modulator. The patient highlighted his focus on QoL (Quality of life: added by Me) and the disability burden this disease process has had on him. He is amenable to a trial of the sacral neural modulator. Consent obtained in clinic."

Again He does not think this is the cure-all for what is going on with me. Still thinks an ostomy will be needed and doesn't think this is going to do anything for pain.

Just do not know that this is worth it if it is not going to help what I need help with.

 

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So difficult to decide what to do. Can you get a 2nd opinion from a doctor who is familiar with you and your situation? Please take care.

 

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Hi @ThatFLGuy,
I second @boasammy's suggestion to get a second opinion from a doctor who is expert in this type of matter, as well as being familiar with your situation.
Since there seems to be no "black and white" with what you're facing but a lot of areas of gray, I would get an opinion from someone else and explain exactly how you feel about this and wish to get some good facts to help you make an informed, solid decision.
But if it comes down to it, maybe even a third opinion might be the way to go as well. If that happens then it's the majority opinion may help you decide.