My choice, decisions 2.0

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Talked to my Axonics rep again today. Still have not decided what to do yet.

It seems like only twice this week did this help with bowel accidents. All told I have need seen any change as far as my bladder goes.

The big thing that my rep said was that there are a lot more settings on the full implant. (I asked how much trial and error would be needed though to get it right)

Overall, I do not see that much has changed. I would say maybe more urges where there weren't any but not enough to say that it was significant (Less than 20% improvement)

I just do not know/think that it would be worth it for only 10-15% knowing that I will still need an ostomy as it might be the only real fix.

I have until Monday to make a choice.

 

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@ThatFLGuy

Just from what you are saying, it seems like it isn't going to do what you really want. (You didn't mention anything about pain relief.)

I have seen some ads on TV that were saying that something about some babies had been allergic to the formula they were fed, and that it led to a condition later in life that reminded me of your symptoms. That's all I know about it. Have you heard anything about it? :|

 

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@MezaJarJarBinks

Nothing for pain relief, in fact, there was a bit more pain from the procedure itself.

Fun fact, I got prescribed 5 320+ MG tabs of Oxycodone but for this.

I only even get Iv pain meds and was then told to take tylenol when let out of the ER for pain.

Even my mom doesn't feel like this implant is right for me at this point.

I feel there are no positives to it at this point and only negitives.

 

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@ThatFLGuy If you go to the pain clinic, you'll get proper pain medication ALL THE TIME. They don't tell you to take Tylenol! Tylenol destroys your liver, stomach, and kidneys. It's bad for you.

This is the baby formula lawsuits. It's about *premature* babies, who are diagnosed with his problems when they're babies, not adults.

Necrotizing Enterocolitis In Premature Babies | Symptoms & Causes

Necrotizing enterocolitis (NEC) is a serious intestinal illness most commonly occurring in premature babies. Feeding premature babies cow-milk formulas may be one cause of NEC.

www.trustwelllaw.com

 

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@ThatFLGuy I wouldn't get the permanent one if I were you.

 

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Hi @ThatFLGuy, I think you still need a way to deal with the pain and try to eliminate that. The pain in itself is what's affecting your quality of life.
But if I were you I would ask myself (and be very honest with myself) if this Axonics device is doing anything to give me a better quality of life now and is there any possibility that could still happen a little way "down the road." So do you feel that things are better since you've had this device put in, or about the same, or worse???
If they are the same or worse then do the Axonics guy and your doctor feel that any kind of noticeable improvement will soon be noticed?

 

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@snow

I am leaning in that direction.

@billliveshere @snow

The biggest factor right now is that the tapping sensation is annoying and I am not seeing a change in voiding alerts so. I still have two days with it but I do not see that changing how I feel about it.

I knew going in that this was a long shot.

My only other options was to try this (Doctor wanted to) or go with an ostomy. (all doctors felt it was time to really talk about an ostomy back in November)

Now I know what is coming and how upfront I have to be on Monday.

Even If for some reason I go with the implant, I want a referral to a pain clinic, I want the ostomy set up/scheduled asap as it is still needed. I want to know what other steps we are taking in the next 3-5 weeks because this whole waiting 6 months to see doctors is BS. Lastly, I want doctors to realize that this is the end of the lab rat phase and time to come up with real solutions or get me with who can.

PS. They also have to get on board with disability and provide me with whatever paperwork I need to send social security.

 

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Having had such nightmares with my stimulators (MANY, MANY COMPLICATIONS), and my heart rhythm forever changed because of that stim device. I was so desperate for relief of my pain, they implanted 5 different devices to the point my back looks like I took a few hundred lashes and the musculature is changed forever. The agent / salesperson/ rep only gets paid when that thing is implanted in your back! Even if they have to take it out 3 days later, once it’s inside you it’s a SALE! They all get paid, Surgeon, Hospital, Sales Rep!
All I can say is my reps (multiple) including managers all promised better results with each change and newer devices, none of it proved to be true in my case.
From my perspective only, who knows how much your pain is complicating your other issues? To give you an example and thanks in part to those stimulators my heart goes into arrhythmia when my pain gets too intense. Many other chronic pain sufferers develop a variety of seemingly unrelated symptoms from IBS to chronic migraines etc. etc.
The decision is all your’s but please don’t be pressured or make an emotional decision out of frustration. Try to look at it this way, you are supposed to reach certain levels of relief from the trial alone or the insurance wouldn’t demand a trial. If you don’t feel that relief, put it on hold. Next years model will likely be even better than the current one if you really need it. You have nothing to lose by waiting, only the Surgeon & the sales rep do!
You MUST! See a pain management specialist ASAP. When your pain is under control you will you be able to make clearer decisions, possibly reevaluate what’s going on with the rest of you!
Only wishing you the best!

 

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@Sprung87 Oh my goodness, more horrible medical things done to you. How challenging! I don’t think I would have been able to keep myself alive if I were you, but then again, 10 years ago, I never would have thought I’ve survived what I have in the past 10 years.

I think your advice for poor @ThatFLGuy is well spoken.

@ThatFLGuy I really like what you’ve written here. Your determination has a new clarity in this statement. I think you have your priorities straight. It is good to be able to tell the damn doctors what you *NEED*. They have jerked you around way too much already. I think you have it figured out now. I’m sorry the stimulator hasn’t helped but I’m really glad you tried it.

 

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Small update.


So, depending on how I sit changes how much tapping I feel with the implant. The big issue is that if I turn it up then when I stand or move I get a strong sensation that includes a headache. Yea not okay with that.

I talked to my Gram and she feels like there are too many negatives to this.

It just sucks because the other option is very bad.

 

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@ThatFLGuy I would strongly suggest going through an attorney for disability. DO NOT try to navigate the system on your own. And yes, be prepared to get denied first time out. That is standard even with an attorney. My husband who is a below the knee amputee got approved second try. He also went to SS and the gal he talked to was very helpful.In the end it cost us $1500.

 

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@Pammy53 Several of us have been telling him that for a couple of years but he doesn’t listen. He is relying on his workers’ comp insurance lawyers to do it. They’re not going to help him with the problems he’s having with doctors screwing things up. One letter from an a proper disability attorney and they’d all shape up! He lives in a small, rural town, doubt there are decent lawyers there. He has to drive 2+ hours to get to his doctors’ appointments or the hospital. The ambulance service isn’t reliable where he lives, and even if one is called, it takes them a long time to the city.

Nobody I know who has succeeded at getting disability has *not* been able to do so until they got a real disability attorney.

He has already been through the initial denial that pathetically, the federal government unnecessarily tortures people with. By requiring so much paperwork, they’re making sure some people fail to complete the complicated process. It makes me really mad on behalf of the disabled. I’m sorry to hear that happened to you husband, both about the amputation and the problem securing disability.

 

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@snow
That is so not true.

My insurance disability is through www.unum.com which has nothing to do with works compassion.
I was never hurt at work.

UNUM hired www.genexservices.com who specializes in social security disability claims and who I have two disability lawyer working with me on my case.
I still have to go through the initial process before the fight really gets started which it has now.

I am in the reconsideration stage and my lawyer filed a for a full review of my medical records.

I have been working with UNUM for over a year now and they are who hired GENEX for me as part of my insurance package.

I can not do more than what my insurance and lawyer working on my case want me to do.

 

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@snow Nobody gets approved first time out. Even we were told that. Must be some sort of "rule" - Pam

 

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Just want to wish you all the best going forward. As always.

 

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@ThatFLGuy I get workers comp and disability mixed up; I’m sorry. I had all that fancy stuff from age 15-21 when I worked at the hospital corporation, but I haven’t had any kind of corporate work until my new job started in October. I’ve always worked on music video and movie sets. They don’t offer things like FMLA or disability or 401k or life or health or dental or vision. So I apologize for that mistake on my part. I *meant* disability. No offense meant.

@Pammy53 and all: I’ve taken classes co-developed by the NIH and Stanford called 1. Living With Chronic Conditions, and 2. Living With Chronic Pain. From my learned from my peers in those classes, yes indeed, everyone is rejected the first time they apply. Why do we put up with our government treating us like this?

 

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@snow I know snow. Why everyone is denied first time out I have no idea. Do they think that we are making an amputation up just for fun? Our lawyer was on top of things though. Every doctors appointment, what when on and occasionally more detail was requested. But,true to their word, we got approved second time.