Neurostimulator Patient

[Grammy]

Kerry PLEASE post what you are going through and what symptoms are improved by thestim. Also could you find out where it has been placed.

[Narelle Jane]

Hi All,
I am new to this website and am extremely grateful to find such a wealth of information from those whom experience the symptoms of PNE first hand. I was diagnosed with PNE on 2008 and since then life has changed dramatically. I used to teach Gifted children and adults training to become Teacher Aides. Now, at times, I can struggle to string a coherent sentence together when the pain is at its worst. I have been extremely fortunate to have found Professor Vancaillie and his team, they are incredibly supportive and work endlessly to improve my quality of life. I have undergone numerous nerve blocks, PNE release surgery and take multiple pain medications and have been hospitalized numerous times recently following flare ups, where the pain was out of control.

The internet has been such a valuable source of medical information, but it is so helpful to read the information that we may not always hear from our medical team. After all our research I will be trialling the Neurostimulator in the upcoming weeks. Reading all of the above posts has been so valuable and has provided a very balanced view of the advantages and disadvantages of the implant. Unfortunately, I have now reached the point where my goal is to achieve a more manageable level of pain and increase the quality of life for myself and the loved ones around me. If having the implant means I can cease even one of my medications, the process will definitely be worthwhile.

Health & Happiness
Narelle

[JeanieC]

Welcome to the forum, Narelle! You have come to a good place to find information and support. Please keep in touch with us about your neurostimulator trial and if it works for you. There is not a great deal of info on neurostimulators on the forums, actually, not that I have found, at least, so additional patient experience would be an asset for those who might be considering this as an option. I have gathered that you live in Australia near Sydney, so it would be interesting for those who live there to have the name of the doctor who will be placing the stimulator. I have been to a couple of pain management doctors in the southern USA, and both have recommended them, although I am not ready to consider this option at present.

Best wishes,
Jeanie

[Narelle Jane]

Hi Jeanie,
Thank you for your words of encouragement I have attended the final visit and consultation with Professor Vancaillie, who is based in Sydney, and is an absolute God-send. The pain that I experience has unfortunately brought my life to a grinding halt and I have had to give up work, which is something that I have fought extremely hard to avoid. I love working as a trainer and educator but basically my life has become a cycle of medicating to work, working to afford the multiple medications, being in bed by 5.30 pm each afternoon, all in order to be able to get up and go to work the next day. And so the cycle continued. There was really little quality of life surrounding the pain.

Following surgery to release the trapped pudendal nerve, I was absolutely ecsatic!! I had pain relief almost immediately. My condition continued to improve following the surgery until approxiatemately 10 months later. The pelvic pain not only returned but it came back with avengance. Unfortunately my flare ups were quite acute and I began to experience painful symptoms that had not been present anytime previously. I cannot continue to take all of the medications that I am currently taking, I do not like the side effects and am tired of having a "marshmallow brain". My short term memory is almost non-existence, my sentences can be sometimes in coherent (which really can be quite comical) and I have gone from being able to write assignments for university and receive high distinctions, to forgetting how to spell a word.

The positive in all of what many of experience with Chronic Pain is that I have learned to accommodate my condition and cope with the pain quite well. It is sometimes my family however, who will become distressed and insist on taking me to an Emergency Room or calling an ambulance when it totally becomes out of control.

The stim will be implanted in just over 10 days. My family has a count down going I have watched every you tube available on the procedure as this helps to put my mind at rest and read all information available. I will certainly document my experience and keep you updated of the outcome.

Health & Happiness

Narelle Jane

[JeanieC]

Narelle,

Wow, that must have been terrible to think you were recovering from surgery and then have the pain return so many months later. This condition is just so unpredictable, I have read of this happening to others who were also recovering. I do hope your neurostimulator trial goes well and am looking forward to reading about it when you feel up to posting again.

[Narelle Jane]

Hi Jeanie,
Thank you for your words of support. The word "UNPREDICTABLE" describes this condition to a tee and my family and I have used it constantly over the last 6 months! While I feel my symptoms and the pain/ spasms rising.... the intensity to which they can suddenly escalate to, is extremely unpredictable. I have collapsed with the pain being totally out of control too many times now, which in turn causes my blood pressure to rise rapidly. Over the last 2 months I have had to be taken by ambulance to Emergency from:
* my workplace ( I had been trying to hide my condition from them.. I failed and am now without work)
*from the middle of Sydney CBD, highly embarrassing
*from home in the early hours of the morning, and once after cooking dinner for a friend.

I do not want to be a victim to this dreadful infliction and I refuse to wrap myself in cotton wool in fear of a severe flare up. This forum is proving an extremely valuable location to share and speak with others who REALLY understand and when unable to sleep at night (which is when my pain levels are usually at their lowest due to the 5-6 medications I take in the evening) I am able to find solace and support, which tops up my emotional bank account, ready for the next day.

Health & Happiness to ALL

Narelle

[egley]

Hi All,
I had a terrible experience with a neuro-stim and wanted to post to let others know that things can go wrong. Be careful.
This is MAJOR surgery, so tread with care. They are sticking things in some very tender places, i.e., your spinal column.
At least that's where mine was.

I do not know exactly what went wrong, only that I now have another problem as bad as my PNE.
I recently had the neuro-stim removed, but am left with painful muscle spasms in my buttocks and back of legs.
The surgeon who removed the stim told me that the surgeon who put it in may have knicked a nerve, or that it was simply not in the correct position and causing inflammation. Since the surgeon who put it in was an idiot (pardon me if I offend anyone, but if you want I will give details of why I give him that moniker). I don't like to refer to anyone in such a derogatory manner. But this surgeon needs to be boycotted. He is simply dangerous.

My thoughts are that the paddles may have done some damage to my spinal cord. After removal, my symptoms improved. They are maybe 40% less intense. It has been slightly more than a month since removal, and I seem to have flat-lined. No more improvement. So, I'm wondering if I will have this for the rest of my life. I cannot stand for more than 10 minutes. When I finally do sit after standing, I get 'waves' of muscle spasms up and down my legs and through my buttocks. It is fairly painful.
It is difficult to walk. I force myself to exercise in spite of the pain, so that the rest of my body doesn't begin to deteriorate.
Standing, which used to be my relief for PNE, is now a source of pain. I'm running out of places to get away from pain.

So, I am adjusting to this new state of affairs and praying that somehow whatever damage was done will heal. And wondering what I can do to keep this surgeon from causing injury to others. Don't be taken in by his credentials - they are impressive. His problem is more that he is in too much of a rush and thinks way too highly of himself (IMO). What can I say? I don't know exactly what he did to cause this. Perhaps it was just a fluke. But I don't think so. His behavior afterward makes me very suspicious. He knew something was wrong, but he put the blame on me. He actually went into a mini-rage.

I found a few comments about this fellow on the internet, but they were quickly removed. I suspect he has hired a company to keep his public internet record clean.

I am in the bay area. So, if you are considering having this neuro-stim implanted. Please go to Stanford (Dr. J Andersen). That way I know you will avoid this fellow.

If you wish, you can PM me and I will send you his name.
I don't get on here much, but I think the system sends me an email when I am PM'd.

Sincerely,
Eagle Eye

[Violet M]

Eagle, I'm sorry to hear of your difficult experience but thank you for telling us your story. I hope with time you will continue to improve.

[Karyn]

Eagle,
I am so very sorry for what happened to you. I think I can guess who the "surgeon" was. But thank you for sharing your experience with us. Most people put a lot of faith and trust in their doctors. I've found patient testimonials to be very helpful. After all, we're the ones going through the "treatments".
Do you have a new plan of action?
Warm regards,
Karyn

[smileygram]

Hi, Amanda

Thanks for the great information. What is causing the zinging in your bladder and vulva? Is it the stimulator? I had right side PNE surgery In Houston, TX in 2009. But it only made things worse. I also suffer from vulvodynia which causes a lot of stinging, burning, and irritation. I cannot sit at all. I am wondering if the stimulator has helped with any vaginal stinging, burning, or irritation for me. Please reply. I would appreciate all experiences with the stimulator.

Debbie