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Spinal AVM/F - surgery and bowel issues


#1

Hi I was recently diagnosed with spinal dural av fistula (T11). I just had angiogram and embolization but the embo didn’t get the entire fistula so surgery may be an option.

I’m reading these posts and it almost looks like for some people the AVM symptoms became worse after surgery before they became better. Am I understanding that right?

My other question is about bowel issues. I’m having fecal incontinence. What are people’s various experiences after surgery? I don’t want to gross people out but I kinda want to get advice for what to expect.

Thanks so much. This forum has really been a great source of information and positivity for me.

Stephanie
San Francisco


#2

Hi Stephanie, you are right. Symptoms do seem to get worse before getting better, at least mine seem to. I am 1 1/2yrs since angiogram and ablation. I have burning all the time and balance issues, uncomfortable at best. I empathize with your fecal incontinence, I have the opposite issue. It can be debilitating sometimes. The best advice I know of is to retrain your bowels. Set yourself a schedule so your body becomes accustomed to going at certain times in the day. It’s not foolproof out may help. All the best.


#3

Thank you Jolan! I just had the surgery yesterday. Well see how it goes. The anesthesiologist (who is actually my sister’s friend) talked about how important diet is to help nerve regeneration. She talked about omega 3 and fish oil a lot. Also one of the nurses suggested warm prune juice for helping [quote=“jolan, post:2, topic:20358, full:true”]
Hi Stephanie, you are right. Symptoms do seem to get worse before getting better, at least mine seem to. I am 1 1/2yrs since angiogram and ablation. I have burning all the time and balance issues, uncomfortable at best. I empathize with your fecal incontinence, I have the opposite issue. It can be debilitating sometimes. The best advice I know of is to retrain your bowels. Set yourself a schedule so your body becomes accustomed to going at certain times in the day. It’s not foolproof out may help. All the best.
[/quote]