13 replies to this topic

[Magic8Ball]

I had a baclofen pump implanted in January of this year. I am a T4Incomplete SCI. Prior to the pump I was able to have an orgasm. I cannot at all anymore. Seems like no matter how hard I try whether it be sex with the wife or masturbation no ejaculation.

I also have noticed that my rectal function has all but stopped. In order to have a bowel movement I have to have a stool in the bathroom, put my knees up so I am in the fetal position and strain until I see starts and it feels like my head is about to explode in order to pass anything. Even then sometimes nothing happens. I have had to resort back to enemas.

Has anyone else had this problem. Currently I am at 460mcg of Baclofen, and I know for sure I noticed the issue around 300mcg

Thanks:
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[NurseLisa]

Some of our patient do have this problem after ITB pumps. It does affect the bladder and bowels and sexual functions. It relaxes all the muscles affected by the spinal cord in the area of the medication so this is why everything tends to relax. Unfortunately the only way to stop it from doing that is to go back down on the dosage. Yes some of our patients have had to resort back to cathing for the bladder and dig stim for BM's. I am sorry this is happening.

NurseLisa

[2ndChance]

Yes. I have the EXACT same problem. It started at 200mcg for me. I am having my dosage reduced today. Hopefully that will do the trick.

[2ndChance]

Just reporting that reducing the dosage did relieve about 80% of both problems. But then I became very spastic and had it increased again. But the problems have not returned. I think that maybe my body needed several months to adjust to the intrathecal delivery system and I needed to increase the dosing slower.

[megatrig]

EXACTLY the same problem and the "fantastic" Dr I was under said it never affected bowel control!! Ahhhhhhhhhhhhhhhhhhhhhhhh

My life was truly awful so much so I had the pump out.

Now under a different consultant a new pump in and I'm waiting to deal with bowels in a different way

[2ndChance]

megatrig, on 12 January 2011 - 07:59 PM, said:

EXACTLY the same problem and the "fantastic" Dr I was under said it never affected bowel control!! Ahhhhhhhhhhhhhhhhhhhhhhhh

My life was truly awful so much so I had the pump out.

Now under a different consultant a new pump in and I'm waiting to deal with bowels in a different way

Megatrig: If you had the pump removed, why did you decide to have another implanted? I'm going to try to wean the IT dosage down to zero and supplement with oral Baclofen before deciding whether to have mine removed.

[davebahm]

Wow! Similar problems to what I've had, though not quite as severe as what you're experiencing, 8 Ball. It's been a few months since your post... how are you now?

When my pump was installed in June 2006, I asked about these issues because they were obvious immediately. My neurologist had no advice (she still has no clue what to do with me), and someone from Medtronics denied that these problems were side effects. So it's a relief to know I'm not alone.

[tsh3406]

I encourage all of you to research a drug called 4 Aminopyridine. For a lot of spinal cord injuries (mostly incompletes), it completely eliminates the need for baclofen and oxybutinin (sp?) and it's method of action can even improve some nerve impulses (including sexual function, bowel and bladder control). I've been on it for about two years now, and will never go back to baclofen.

Tim

http://www.sci-thera...arm-Chronic.htm

[davebahm]

Hey Tim,
I visited my neurologist yesterday and asked her to begin reducing the baclofen pump flow with the plan of having it removed in a couple of months. To my surprise, she didn't object, but said I'd be the first of her patients to completely remove the pump. I asked her about the medicine you mentioned above. She said it's some kind of complex mixture done at a pharmacy that has not been approved by the FDA (so I'd pay for it 100% out of pocket because insurance won't cover the cost). She also said it's primarily for people with MS. Is this consistent with what you've learned?

Dave

[tsh3406]

davebahm, on 26 January 2012 - 04:17 PM, said:

Hey Tim,
I visited my neurologist yesterday and asked her to begin reducing the baclofen pump flow with the plan of having it removed in a couple of months. To my surprise, she didn't object, but said I'd be the first of her patients to completely remove the pump. I asked her about the medicine you mentioned above. She said it's some kind of complex mixture done at a pharmacy that has not been approved by the FDA (so I'd pay for it 100% out of pocket because insurance won't cover the cost). She also said it's primarily for people with MS. Is this consistent with what you've learned?

Dave

That is partially accurate, and with a twist. Yes, it is intended for MS patients, and acts to improve transmission over damaged myelin sheaths of nerve axons. The twist; many incomplete SCI's, myself included, have damaged myelin at the site of injury also. No, it is not FDA approved to treat SCI injuries. As far as insurance, sorta. I have Blue Cross KC through my employer, and they do cover part of the script. I pay $50 per month out of pocket.

[darryl]

I have heard the identical thing. Have had the 'pump' for 2 years and nothing but trouble, and have yet to achieved a level where spasm was controlled. My physiatrist is attempting to talk me out of it, however he was never active in my increases or decreases; my main issue is how it effected bowel function, however he stated it was not possible, and over the first year sent me to internal med and gastro for tests etc. etc. The ironic part is that he assisted in research with a resident in 2010 and attached his name to a position paper presnted at the Canadian Physiatrist convention in 2011, attached is the link, some of you will find this very interesting as it applies to ITB and bowel function. My other compalint is that I was never provided the information that was available from Medtronic re their clinical findings, prior to implant, and thus was never provided a fair and just informed consent. Anyway, I've had enough of this 'thing', now to find oral treatment that will hopefully provide at least a 25% relief. Too bad Amprya is an orphan drug, designated to MS, another physiatrist in the same rehab hospital (London Ontario), performed his own clinical trials with mixed results.

Open "2011 Conference Proceedings' and Read paper A38 > this is my case study verbatim and used by the resident, Daniela Lanc, my doc is Sequeira.

http://www.capmr.ca/...m_content&id=89

Would appreciate any comments.

dk

Edited by darryl, 27 January 2012 - 07:47 AM.

[davebahm]

Tim, what you explained above is exactly what she said to me. I guess I don't understand what an incomplete spinal cord injury is, just like a lot of the lingo I read on these boards. I just know I was a big, breach baby born with CP. I do have spasticity, but not to the extent of some others on this website. Growing up, so many of the other disabled kids that I knew had surgery after surgery and didn't appear to get around any better or see any improvement in their condition. Before this pump, my only surgeries were for wisdom teeth removal and vasectomy. Guess I should have stuck with my "no surgery for my disability" plan, but trying to reverse that mistake now.

[tsh3406]

It's because of the nature of incomplete injuries that studies get mixed results. Incomplete, short and simple, just means the cord was not completely severed. It may still be partially severed, compressed, bruised or something else. Mine took a lot of bone shrapnel from a compression injury. Very few nerves were actually cut completely, but their was significant damage. Any bennefits from the drug will be closely related to what kind of nerve damage was sustained....

[Tetracyclone]

Tim'
i will check out 4 Aminopyridine. Big advantage of baclofen, of course, is it is CHEAP.

That said, i have to couple my dosage with 1500 mg of gabapentin, and that runs $80/month for the insurance company.