Health Organization for Pudendal Education

I did consider a pain pump, but when I consulted with doctors they said that the stimulator was step one. If the stimulator was not sufficient then the pump would be an option.

I also used a TENS on my lower back for almost 18 months and i had sciatic issues as a result, it went away with PT and stopping the TENS use.

I have been on modified bed rest since 2010 and I am 37, I certainly understand how difficult it can be without being able to sit.

The internal stimulator is completely different, even in the short time that I have had it. It was obvious even during the trial that the simulator helped.

The stimulator uses much less power. I am using 0.5 Volts right now when i was at 4 with the external TENS, there are no muscle contractions.

The trial is just that, so I would keep an open mind about it.

I would make sure that it is a sacral stimulator they are looking at and not a spinal.

I hope this is helpful feel free to PM me if you have any questions.

Carl

Thanks so much for your detailed experience with the sacral stimulator. I am so happy that it is helping you.

I just found the link to when the sacral stimulator was approved by FDA in April of 2011 so its not that old:

http://newsroom.medtronic.com/phoenix.z ... ID=1773348

Carl, are you continuing to have success with the stimulator? Is it too good to be true? : What a relief it must be .Did you say it is 50% better? I have chronic sciatic pain.Would the stimulator take care of sciatic and pudendal ? Ellie

The pain is defiantly better, Have had a couple of flare up but the stimulator has been able to take them down to a level where it is uncomfortable. I did reach for some extra pain medication, but it was not incapacitating as it was in the past. I will update the post up top some more today.

As for the sciatic nerve pain. Most of my pain came as secondary from the whole pelvic area being tense and out of whack. If mobilizing your coccyx area and pt help your pain but it just comes back as it did for me then this would probably help. At my levels there is no muscle contraction. Except the beneficial one of the anal external sphincter which is supposed to be contracted and was not due to the PN.

Yes, the stimulation has helped a LOT, but as for the total amount of relief, I think it is too soon to tell, the stimulation and levels change as the "good" scarring is taking hold anchoring everything in place. The stimulation is changing slightly but we are talking one 0.05 bump up on a scale of 0 to 10.5. I think I may still need pain medication, but i would like to be able to manage my pain and not be in the fetal position every day from 2-4 PM. They are small but very important goals, before this I had ZERO sitting tolerance and the only time I sat was for driving. But I am not going to try any extra sitting until I feel that the stimulator and healing are complete, Dr. Ross says that is about 3 months.

Week 6 update:
10/23/2014
I have incorporated this into the posts above.

Thanks for the update. Keep us posted.


Ray

Thanks for the update Carl, you are doing well at this stage. As your doctor has told you it is important to restrict any possible migration by lifting or bending, your leads need a lot of time to embed and be fixed. I was told when I had my implantation that it would take 6 months and I was on a restricted lifting regime with no bending etc. I used a pickstick which helped a lot.
It is common to feel the stimulation a little less after the initial surgery, first of all your brain gets used to the sensation and so do the nerves; its ok to change the settings to get a more comfortable result. Bear in mind actually feeling the stimulation is not vital, even at a low rate I can get more relief than if I turn it up which irritates my nerve and negates the positive effect.
Have your doctors altered your programmes, it is normal to tweak things a little as you recover from the surgery.

Take each day at a time, I wrote a journal and it reminded me of what improvements I felt along the recovery process.

Carl, are you wishful thinking of having both the stimulator and the pump as you mentioned? That is not a realistic possibility, right.?
Amanda made a comment about keeping the stimulator turned down to allow a better effect..I will remember that when I am having my trial. .

My next door neighbor has both a stimulator and a pain pump. The stimulator worked only so much, so they added the pump after 18 months to help keep the pain down.

She just had her first pump replaced after 8 years. The stimulator a few years ago.

Dr. Ross has said that he has done both before. He told me that this was not "the end of the road" for treatment. There is more that can be done.

I am still in the learning curve with the stimulator, but chained to the pain meds is not fun, I have my phone programed for each does, if I miss one for a couple hours I am toast for the rest of the day. I would love to have the ability to set a dose schedule and forget about it. If it flares up I press a button and it administers the dose within minutes.

I am still on strict bed rest also, I have not been able to increase sitting, but driving has been easier with the implant. I am OK with being permanently disabled but I would like to be able to at least leave my bedroom and take a walk.