Sacral Stimulator Implant for PN updated 3/6/15

[river133]

Stephanies, are you still having pain? I see that you found relief, but it returned about a year ago. .? Thanks for your response. Are you aware of any questions I should ask .? .Or do they fool around until they find the place to implant the leads.Maybe I should google this. Maybe you can answer ?

[blightcp]

Ellie,

Do you have a copy of Dr. Anotlak's surgical notes? The surgical notes, it will tell you if there is a compelling finding of why you continue to have pain. If there is something there that may help with the determination of where the pain is.

Was your EMG a pudendal emg? If they tested the anus and genital areas, then they tested the PN. If they only did your legs and backside them it was for sciatic. If they did not then they really have nothing but Dr. Anotlak's operative notes and physical exams to go buy.

PN can cause sciatic due to the pelvic muscles guarding, and sciatic can irritate the PN by changing your gate and messing with.

You may also want to consider a follow up appointment with Dr. Anotlak if possible. He may be able to help with the pain clinics to get you some relief.

As for the stimulator, they test the leads as they go along the nerve. You are awake and able to tell them if it is covering the pain, the coverage is much bigger than the trial. My stimulator does a great job of controlling the anal area for both pain and motor issues. I only had a total of 2 active leads with the trial and the final count was 10 adjustable leads in the surgery. In the surgery they test the leads as they go, YOU give them the feedback of if the lead is in the right spot.

I hope that you can get some relief and some rest from the pain. A lot of us here have been fighting this battle for years and it is never easy, hang in there.

Carl

[river133]

Carl, Dr.Antalok has retired. DR.David Schultz is at the same clinic that Antalok was. So hopefully they can look up my records. I am going to print your response. Thanks buddy.

[Violet M]

Carl, wow, I was just catching up on reading the forum and was glued to reading your posts. You have given such a great description of the neurostimulator trial/surgery, etc. I'm sure this will be valuable information for a lot of people. Thanks for posting. You are a pretty tough guy after all you have been through.

I hope you are able to get your disability approved because it seems like if anyone should qualify you should. I think it's typical for people to have to appeal at least once.

Violet

[blightcp]

Thanks Violet,

I really wanted to give as much information to people as as possible. There are a lot of us the just do not respond to surgery, the sacral stimulator is one of the only other drug free therapies left.

I was really anxious about the stimulator, and I wanted to help other people understand what a sacral stimulator would entail and how it might help.

Dr. Ross and his staff here have been the most PN aware pain clinic I have seen, unlike all of the other pain clinics, I did not have to re-educate the staff as to what PN was or the extent of it's impact on our lives.

[river133]

I believe my unsteadiness in my legs is neuropathic. I get up from the couch,and I just can not get my balance. Once I get up and get moving my steadiness returns somewhat. . I guess I just didn't want to admit that the pn would affect me in this way. I am wondering if the stimulator will help this? Maybe not. Pain has been horrendous, depression, crying. I am just so tired of it all. It has been a month since my consult with Dr.Schultz. I call and of course leave messages. Never get a return call. I have no clue when my trial will begin.I just need something for the pain.

[quilter]

Dear blightcp,

I had a Medtronic Prime Advanced non-rechargable which unfortunately had to be removed a year later. However, every rep I worked with during procedures and many programming sessions were very patient with me, and great people. I fully understand the leg contractions; that was always a challenge with mine and is normal with sacral leads. We'd start to find a good spot for pain relief but then my foot would contract or thigh would cramp. It sounds like you have a fantastic medical team and support, much different and better than mine was, and I will pray that you continue to do well. I quickly got in the habit of turning all settings down to 0 before turning it off or changing positions; it only takes a couple of unexpected shocks to learn that lesson.

There will be ups and downs the initial months as the leads settle in. What worked well once may not work be so effective weeks later, so be patient - it's an ongoing process. The programming sessions tended to flare me up a bit and I always took it easy for a day or two after. Keeping good notes (as you're obviously doing) is a big help. I truly hope the stim will finally bring you the pain relief you need. I have a PNE patient friend who had her sacral stim implanted by my doctor 4 years before my procedure and she's always done great with it. I wish you all the best!

If you don't like the programmer belt holder they provided, check out a cell phone case shop. Because of vulvar pain I couldn't tolerate pants that required belts, and bought compact phone cases that snapped onto waistbands. I used the larger Medtronic case only to carry the charger extension cable in my purse, but it was rarely used as the stim was in my abdomen and easily reachable without the extension.

[river133]

It has taken 5 months and 3 Dr . appointments to finally have the stimulater trial. I have 3 appointments .March 13,16 and 19. The last appointment will be to discuss with the Dr.as to when to have the final implant. I am hoping and praying .
I called both the phyciatrist and my gp a couple of days ago for some diazapam,they both flatly refused. Maybe Dr. Schultz will prescribe some for me. I have not had any opiods for 9 months . My leg pain has increased and is affecting my gait. I wear my tens to bed ..a diazapam would certainly help. I live in this hick town out in the sticks. I can just tell when I tell my Dr.s or the nurses that I get information from pudendal hope,that they think they know better . They get this look on their faces,like a big ? Look. I am so fearful, being this may be my last chance for hope.

[blightcp]

Hi everyone,

I am sorry I have not been on much I have had a lot of work with my legal team to finish up on the disability claims and a new computer to move everything onto...

It has been a while now, and I can say that I have been living with the stimulator now and it is a "normal part of my life. Charging takes 1.5 to 2 hours a week.

I have been the "guinea pig" for a lot of different types of stim patterns and what I have found works the best is a short pulse width, high pule per second, low voltage. The voltage is to the point to to where you don't feel it most of the time. Sometimes I will move and you will get a small change in stim, its not painfull but it's just enough to let you know it on.

My controller settings are:

0.75 Volts
450 micro second pulse with. That's 0.000450 seconds
540 pulses a second

This setting is so fast that you don't perceive a pulse just a gentle stim.

So, now the big question, what about pain and function?

Last week I went to charge the stim at night, and I turned off the stim to help it get charged faster. I went to bed and woke up the next day, halfway through the day I felt like my left testicle was in a vice, it was the worst most persistent flare up in a long time. It took me almost the entire day to notice that I had left the stimulator off. Once I put the stim back on, the symptoms slowly went back to normal.

That event gave me a really good idea of how much the stimulator is helping. I would say that it helps by about 30% of my pain, everyone is different, and the extent of damage to the PN is different .

Functionally, it has helped me regain a lot of function over the bowels and bladder. Once the stimulator was on the muscle tone of the sphincters returned and over a few months, I slowly recovered more muscle control. I am not at 100% I would put them at 60% to 70% of what they were before PN.

I am now 30 months post TG and nerve decompression surgeries.
While the decompression surgeries themselves were successful, they have been declared surgical failures to reduce my pain.
Dr. Conway has declared the PN injury permanent with no expectation of recovery.
I have been out of work on disability for 17 months following modified bed rest.
I still have zero ability to sit or recline without pain.

Would I do the stimulator again, yes. If I could change anything to do with the stimulator, I honestly don't know what could have been changed to make it better.

Both Dr. Conway and Dr. Ross have been great and have done everything that they can to help me. I am still pursuing further treatment, including a local anesthetic pump to drip local onto the PN, and my goal is to eliminate the need for narcotic pain killers. I will post more on that as things develop.

As always, feel free to PM me if I can help with questions.

Take Care

[Patty]

Are you still fighting for permanent disability? You certainly seem deserving of it.