Neurostimulator Patient

[Amanda]

Hi Her Majesty

Just to follow up on posts here:

You wrote:
Did you try a TENS 1st? Now I am leaning towards that instead. I just am too much improved already to accept the lifestyle restrictions. I want to get off meds, but the restrictions sound worse than the meds. But, I would dearly love to try electric stimulation as I have never experienced it and wonder how it would work for me. Do you think TENS is comparable at all (like did you try it and get a positive outcome but less so), or do the two things, neurostimulation unit and TENS, have nothing in common?
I am so grateful for this board and all of you: My Docs made this sound like no big deal and I managed to avoid something I would have been very unhappy with; by coming to you guys for info. I really appreciate your sharing your experience Amanda

Yes I did try a TENS for years prior to having many other treatments and eventually the Stimulator.
TENS is localised and has to break through the skin, muscles and ligaments of the region and therfore only reaches the surface nerves...to do this you need to have the intensity very high and it is like a serious case of pins and needles.....yes it did help me at the time as a total distraction but it never hit the internal pain. The huge difference between a Stimulator is that is it internal and is stimulating the nerve directly so the current does not need to be so high to hit the target areas.
The Stimulator however has little or no pins and needles sensations as the power level is much less and in fact the more you feel it the greater the chance of overstimulation to the PN. I had this happen to me initially when I thought I had to feel it tingling...but I discovered that it drove the PN even more mad....but when I turned it down to a lower level it calmed everything down despite my barely feeling it at all.
Having a Stimulator is not known by medics to be an intrusive surgery...however the mere fact that they tunnel through your spine and around your tummy with leads does lead to major bruising....which did take about 3 months to settle down.

I am only offering what I have experienced myself and hope that it is helpful to you.

Best wishes

Amanda

[HerMajesty]

YES you guys have been very helpful and I am crossing it off my list of possibilities!
I have been scared about living on meds and what it will do to me in the long run, but my Doc reassured me most recent visit saying I really am on a very low dose comparably; and my body should be able to process it without major reprecussions (that is, he said I shouldn't be worried about kidney or liver failure, which I was). I am dumbed down from the meds but that is a small price to pay compared to the restrictions that were described.
Florabunda, Welcome to the site - it has been moved to another domain recently and the old info lost, but the site was previously well established and most of us on it so far were "regulars" on the prior one. So there is quite a knowledge base floating around for you and your partner, if you have questions to ask!

[florabunda]

Thankyou for your welcome HM. I think that maybe your decision is a wise one for now anyway. In my case my medication has never been reduced at all in two years although I hoped to achieve that goal. It does help me in other ways and I am happy with it. I think that with all ,medications and particularly surgery the need has to be great before stepping further into the demise. Good luck with your chosen route.

[Grammy]

If you have an implant and it allows you to do more like gardening for instance--ARE YOU MAKING THE NERVE ENTRAPMENT WORSE BECAUSE YOU ARE NOT SO AWARE OF THE PAIN. I have wondered about that for some time as I might travel to see Kenneth Peters for a trial of the scs stim that he can place.

[kezalarge]

Hello, I am all new to this.

I had my daughter 3 years ago, and since the birth i have had lots of pain down below. I have been through a number of tests and they now believe that i have pudendal nerve damage. I found this out just over a week ago, and finding it hard to come to terms with. I have had a number of nerve block injections and a thousands of different drugs.
I am now on the list of Sacral nerve stimulator, which will be fitted in Feb, (the trial). I start physio next week and have counselling and the specialist nurse appointments coming up before Feb.

I was wondering if anyone has had children after having this fitted.
Is it possible?, Is carrying difficult with the pain? and does the stimulator effect or cause problems in pregnancy?

I am only 25years old and was a very activity person. I have competed for england middle distance, but since the pain i have had to reduce and some times stop during bad flare ups for pain.

Any advice would be great.
Kerry

[Amanda]

Welcome Kerry

im sure tha tyou are indeed in shock at your recent possible dignosis and at such a young age too.
Do you mind me asking where in the UK you are based and which hospital has been suggested for a Stimulator?
Did you have CT Guided Nerve Blocks?
If you are starting Physio you need to make sure that they are used to dealing with the Pudendal Nerve.

I am not a doctor but I have experience with many people who have Stimulators so I will try to answer some of your questions below, you could read through th rest of this thread so read the limitations I have listed.

1. I dont know of anyone who has been pregnant post Stimulator implantation.
I think it would be complicated to be pregnant with a Stimulator for many reasons, however the main one would be that you are not allowed to have Ultrasound anywhere near to the Stimulator; secondly as the leads are fixed in place and tunnelled around to the abdomen where the Stimulator is sited, those leads are not flexible so the enlargement of the abdomen would I think cause pressure and stretch those leads making them love out of place.
The actual weight of a growing baby would put pressure on the spine and also the leads.
If you were to have to have a C Section then the leads again would be under great stress and at risk of being damaged.

2. As you mentioned you are a runner, most physicians do not recommend strenuous sports regimes when you ahve a Stimulator as any injury or fall could cause the Stimulator to malfunction and or move. Contact sports and weightlifting are definitely out of the question.

Having a Stimulator is a life changing method to treat pain, it is not a cure and with the right care it will give you relief but it does have limitations.
If you would like to read more tales from people in the UK who have gone through or are about to go through this procedure take a look at this site: www.painsupport.co.uk and look in the discussion forum and there are 8 threads there called Spinal Cod Stimulation...it charts historically many peoples histories through the medical system in the UK and also the pros and cons of having a Stimulator on a day to day basis.

If you have any further questions please feel free to ask me.

[kezalarge]

Hello Amanda,
Thank you for your reply it was most helpful.

You said that the stumultor is sited around the abdomen, my doctor has said that it will be in placed at the top of my bum muscle not my abdomen., so hopefully the stretching will not effect me with pregnancy. I will mention this to my doctor and let you know what he thinks.
"the leads are fixed in place and tunnelled around to the abdomen where the Stimulator is sited"

I am under Dr Andrew Baranowski and Dr Emmanuel @ University College London Hospital, London, they have been very helpful.

I will keep you up to date with my process. Its nice to know I have people to talk.

Thank you again

Kerry

[hilary]

Hello Kerry
Was the possiblity of surgery discussed with you? Obviously it would be something to which you would have to give a lot of thought. Dr B refers his patients to Prof Carlstedt of the Royal National Orthopaedic Hospital..
I know someone who has recently had surgery that route(about 4 weeks ago) and she had quite a bad entrapment. Nerve blocks and drugs were not very effective so the pain consultant at Queens Square and Dr B sent her to Prof Carlstedt. He is really the only person in UK who regularly does this surgery although Dr Greenslade and his team at Bristol are starting up.
I could put you in touch if you wish if you pm me your email address - its too early though really for my friend to say how successful surgery has been. She had terrible pain on touch and in vagina and feeling of grapefruit in bum
Obviously if a stim works thats great but if you like to lead a very active life and also have another pregnancy then not so sure. Did you discuss all this
Hilary

[Amanda]

Hello Kerry

There are many choices for siting the Stimulator units, the abdomen is the frist choice, for many reasons as it allows recharging and changing of programmes to be done much easier, if you have one in the buttocks then you need to be aware that changing programmes needs an extra cable to see the display properly.
I think you need to discuss the potential complications that strenuous exercise and pregnancy could put on both you and the Stimulator.
As Hilary has mentioned Dr Greenslade in Bristol, there is also Dr Al Kaisy who has been inserting Stimulators for many years. You really do need to have a doctor who has experience of this therapy as the lead placement is vital for the system to be beneficial. This is why i sen tyou the link to Pain Support as there are a variety of patients there who have had Stimulators.
Depending on which companies Stimulator, you can go to the websites and read through the patients notes on each site.

If i can help you more please let me know, I do spend some time in the UK so we could talk on the telephone if necessary.

[kezalarge]

hello

Surgery has been talked about, but my surgeon believes that the nerves have been damaged for to long and that surgery will not make any difference. Should I get a second opinion? I am seeing my physiotherapy pain specialist tomorrow to help manage and learn pacing. I Will let you both know how it goes.

Thanks again

Kerry