Question, appointment changes, new date for Trial implant?

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The operating room scheduler called me Thursday to tell me that they need to move the date and location of my trial implant due to covid. That is a big deal for me because now the trial and final implant are only a week apart which does not give me much time to see if it is right for me. (Side note, the trial implant also has two other doctors visits for set up and checking as does the final implant)

So now I am left with a dilemma. I have an appointment set with my surgeon that would have been for follow-up and checking the device but not that appointment is not really needed. I did think that the appointment might be worth going to so I can hash out some big questions I have but do not know if they are going to cancel it or not.

The new date is now the 31st and the final implant would be on February 7th if it is worth it.

I kind of hope that they do not cancel the face-to-face appointment so I can get to see my surgeon before we do this.

 

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Hi @ThatFLGuy, I know where you're coming from. To help you sort this out, I think the big thing is to make sure you have the opportunity to get all of your questions discussed and answered. I would not want to go into this thing with a lot of big questions yet unanswered. And I wouldn't do it if I weren't satisfied that all of my concerns have been addressed.
When you are about to embark on something like this trial all of the appointments leading up to it are worth going to.
So when you talk to them just say that you need to have your questions answered fully before you do anything.
I also think the face to face with the surgeon is the way to go and please don't let them cancel that. This is a big decision you're facing and you want all the t's crossed and i's dotted, as it were!
Good luck and just keep pushing. You have a right and I think an obligation to get all of your questions answered and concerns addressed!

 

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@billliveshere

That is kind of what I am thinking. The appointment is already set so unless the office cancels it then I could keep it. I am going to talk to my Mom and Nanny/Grandmother today and see what they think.

The biggest thing that keeps me awake at night right now is that even my surgeon feels that this will not be enough to get my quality of life back where it needs to be. He feels that it will be this trial plus an ostomy and something else.

They have to do something about the pain though because that is killing me. I just want to stay in bed or sit on the couch in the fetal position because of the pain in my guts. Then when I am up I end up in a mess with bowel and bladder accidnents.

 

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This doesn't make alot of sense rushing you through the trial period does it?
The person you reference as your surgeon sounds like the ostomy one but not the interstim person?

What bothers me is the sense you are a human ping pong ball for tests and procedures that aren't helping with the pain and sense of return ing to qualify of life?

Would make sense to me that you get the surgeon you trust the most to take charge of what is to be done and follow one path if there are multiple doctors trying to get multiple procedures done .
I'm trying to think if you were my family member what would I advocate for and this is what I come to.

That and saying I'm in PAIN ALL THE TIME. FIX IT. About a gazillion times in a meeting.

 

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@ThatFLGuy, I agree with @billliveshere. Is there a reason to push this schedule given one doctor feels, "that this will not be enough to get my quality of life back where it needs to be." My question that surgeon would be, "What needs to be done to get my quality of life back?" and "What would you do if you were in my situation?"

My surgeon wanted to implant my Interstim device (Stage 1) back in November. I wanted time to compare the Axonic device to Interstim so I delayed her wishes. When I felt I wanted to go with the Interstim device in December the surgery couldn't be scheduled due to COVID issues in Charlotte, NC. After Christmas, the scheduling was allowed. I had the device implanted on Jan. 12. The Interstim personnel started calling to get the data from my daily diary on the 14th. After just 4 days (Jan. 18) it was decided it worked well enough to have the Stage 2 procedure done. That surprised me because I have to do the diary for 14 days.

My point is, why can't they schedule you so you have the full two weeks to collect the diary data?

I'm sorry you have been put in this position, and I hope you get to all the appointments and get every question answered before anyone schedules you for surgery. If you've waited this long, what harm will a little more time do?

 

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@fleemoore @Maymay941 @billliveshere

All things are being done by same doctor. I am scheduled to see him for what would have been follow up so I am going to keep that appointment and get to the bottom of the plan for my care. I am also going to see about getting some paperwork done so the agency doing my social security has something that says I have no way to work until/unless we get this stuff under control which is not possible so.

 

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@fleemoore

Also, the problem seems to be getting the Axonic representative to come to do any of the set up. That is why they rescheduled it at the smaller hospital. Now I just hope to get my questions answered and everything set if that is what me and my doctor decide.

 

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I understand. I assume you are not near a big city which makes it more difficult for flexibility like I had. I wish you the best as you go forward.

 

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@ThatFLGuy I have been through far too many surgeries including 5 different interstim implants after a “RUSHED” 1week trial. It almost killed me when that “MINOR” surgery went sideways and started shocking the nerves to my heart. Luckily my wife found me unconscious on my shop floor and I was rushed into emergency surgery to remove it for the 5th time! Now every time my pain level shoots up I go into cardiac arrhythmia. You have competing & complex issues you are dealing with and I would caution you to slow things down. It appears right now the pain is controlling your life, and nothing else is going to matter until that gets some resolution. There are chronic pain advocacy groups out there that might help guide you, but you should have a specialist that focuses on nothing but your pain, they can guide the rest. Unless they can guarantee you relief from your pain I would not move forward, possibly seek out a new doctor. This Covid has thrown a wrench into our medical system, so a lot of surgeons are piling on the procedures as they can. It’s your body and you only have ONE! Don’t let these guys experiment, demand a clear & concise expected outcome from each procedure. If they can’t provide that I would hit the brakes….
Hoping for the best!

 

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Just want to caution you about these procedures. Mine was the Stimwave’s Peripheral Nerve Stimulator inserted for back pain. I had some relief so they proceeded with the permanent. It had to be redone 2 weeks later due to migration of the wires coming up through my skin. I should have quit prior to that because they are pretty sure my neurogenic bladder has developed from another migration. I never had any incontinence before that. Now I am having to go through kidney X-rays, 2 MRI’s , cystoscope again, kidney ultrasound. They have to locate the damn thing. The specialist at MUSC thinks the wires have damaged my renal nerves and the ones to the bladder. I will have to have it removed but I can’t know if that will cause more damage. What I am saying is completely understand the procedure and possible side effects. I wish you all the best in your decision but don’t rush it.

 

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@Sprung87 @ThatFLGuy I completely agree that our friend needs to go to a pain specialist.

 

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A pain specialist is good, but he has to believe us the pain we feel
it was my case for ten years
Its still worth a try

 

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@philippe It’s true; they can’t fathom the depth of the endless pain we’re in. If the could, they would be much nicer.

 

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My father had bladder cancer which eventually took his life. He had a pain specialist the last 6 months of his life who was an absolute godsend. When he put my father on opioids I got a little nervous about his getting addicted. The doctor looked my in the eye and said "SO WHAT?" He understood it was all about my dad living his remaining months without pain and nothing else mattered. I am forever grateful we had someone who understand what my dad was going through. You just need to find the right doctor. Good Luck.

 

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Will someone stop this ride, I want off!!!

So, they rescheduled my implant to the 31st as I said before. They canceled all the follow-ups as that is all they were so now I do not see my surgeon until the day of the temporary implant.

Now they have to also reschedule all the follow-ups as well as when/if they are going to do the final implant.

Also because when it rains it pours on me. My food stamps got cut way back (Everyone got max before because of Covid well I got to cut back to a whole $20 a month due to what I get on disability insurance)

So now my budget is messed up and the money is already spent so there is nothing I can do about it. Luckily February is a short month and I do not have anywhere to go now.

 

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I am amazed at the quality of the suggestions you are getting. I recommend that you not have any surgery until you have all of your questions answered. It reminds me of the old adage, "measure twice, cut once." Please be careful - it's your one body. Wishing you all the best.

 

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I do agree! Please do not commit to any surgery until all of your questions have been answered and you are satisfied with all of the answers.
I think the old adage @boasammy mentioned is really spot-on in your situation and couldn't be more appropriate! Do keep pushing for a face-to-face with the surgeon. Your body is counting on that and deserves nothing less.

 

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Well, one good thing happened today. Got the max amount of my food stamps but also was let know that it will be a month-to-month issue depending on if the Department of Human services feels that giving everyone the max is still needed due to the pandemic. Well, at least I can budget for it now.

 

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That is good!

 

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That's good about your food stamps and it's good the HHS is still taking the pandemic into account. But let's just hope for the sake of anyone and everyone that this pandemic will be over much sooner rather than later!!!!