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Results of testing I mentioned in my last blog

Friday, December 06, 2013

I have an important decision I need to make, and it's weighing heavily on me. A few weeks ago I had testing done on my bladder. It was painful and sucked horribly. Yesterday I found out the results, and they're not good. The doctor believes the nerves to my bladder (and probably other organs as well) are not working properly. She doesn't really believe that EDS is anything more than a benign joint condition, so that means her opinion on the cause/effect of EDS on the problems with my organs (which she feels there is none due to her ignorance) isn't really applicable. However, I'm certain it's a large part of the problem. The typical causes (difficult childbirth, multiple childbirths, complications from previous abdominal surgery, serious physical trauma, etc) don't apply to me, so why else would I be dealing with nerve damage throughout so much of my body? My only thought is it's from damage & frequent dislocations of my SI joint, since the nerves run through there.

Anyways, she gave me 3 options:
1) do nothing and keep being cautious of my bladder (like I have been for years)
2) learn how to self-cath (oh hell no I can't trust my arms and legs to be able to position it well enough to not hurt myself)
3) have electrodes implanted along the nerves in my back to try to increase the nerve impulses leaving my spine and going to my organs (would also require implanting a battery pack into my hip)

I have to do some research on the implant. The doctor said they don't really know what it does and how it helps, which really doesn't make me feel confident about doing it. She doesn't think my EDS would be a factor in implanting it, since it's an in-office procedure (she so doesn't get the whole 'immune to anesthesia/painkillers' thing) without much cutting. Also, it's first tried in a 'temporary' way and if it works they make it more permanent, and both versions are reversible (except the whole EDS atrophic scaring/pseudo tumors thing). But this might not only help send some nerve signals to my bladder for the first time in a long time, it might also help increase the nerve signals in my colon and stomach too. So it's something I'm going to have to take time to consider. I won't do it until March at the earliest, if I do it at all.

What's bothering me is that they are screwing with nerves that are already damaged for an unknown reason. Nothing in my body is exactly 'normal' or 'standard', so it wouldn't be a stretch to be afraid that this could cause permanent and wide-spread damage, just as well as it could be an answer to several problems. I've lived with these issues for years (some at least since I was a teen, others for just a few years) and as long as I have a decent amount of control over my activities and surroundings I can live with them - as they are now. If permanent damage were to occur (total loss of nerve signals), the steps they would have to take to deal with the fallout (removing organs, using implants in place of or to stimulate organs, any type of abdominal surgery) could have serious consequences, even be fatal due to the complications of EDS. This makes my decision complicated, difficult, and important.

If anyone knows anything about the InterStim therapy or have tried it, I would appreciate some input. Just thinking about having to make this decision is causing some panic in me. Any advice/info would be appreciated.


I just called Dr Tinkle's office (a top EDS specialist) in case he or his staff can recommend anything I can persue before seeing him. She recommended further genetic testing for the mitochondrial disorder and she's going to speak to Dr Tinkle when he's back in the office on Monday to get his recommendations. She said they don't normally see people with EDS with nerve damage this extensive and when they have patients who have been dx with a mitochondrial disorder they often mistook the EDS symptoms for mitochondrial disorder symptoms, but with my history and family history it sounds more likely that it's a valid dx for me (hence getting further testing done for it).

At least she said that the few patients they've seen who get the InterStim haven't had severe complications and the one who had it removed didn't have major lasting effects. Still, I think more needs to be looked into about why the nerves aren't working before I make a decision about trying this.
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Member Comments About This Blog Post
    1267 days ago
    Good luck with researching and considering the decision. It's a difficult choice and learning information can only help in this matter. :)

    1268 days ago
    Even though this isn't good news, I hope there is a silver lining meaning that this new information can be used to win your disability case.

    You have a lot to think about making a decision; would your insurance cover a 2nd opinion? It's nothing against your doctor, but maybe having some information from another doctor in that field will be helpful in deciding the best way to proceed.
    1269 days ago
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    1270 days ago
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