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Sat, Mar 2 8:16am · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@bkruppa this is typical of peripheral nerve enteapment pain or peripheral nerve compression, imo. I have the same thing with my leg, i feel worse after using my leg too much and best if I rest. I'm going thru surgeries now to get entrapments fixed.

Tue, Jan 15 9:18pm · Has anyone any had the STim Wave spine stimulator installed? in Spine Health

@ws4k I did have Stimwave implanted. If you are considering it for application at spine, it is worth considering. It is very high frequency, up to 1500, and higher than my Medtronic now can go.

The stimwave worked like a charm for my pain. However, I was having it implanted as a PERIPHERAL stimulator for my sciatic nerve in back of knee, to help my lower leg. The stimwave lead is very flexible, and this made me have problems with lead migration. I had 2 trials and 2 permanents. The reps for this company were working closely with my doc to determine best approach to stabilize the lead. Ultimately for me bc it was a peripheral application. and not a scs, it didnt work bc the lead was too flexible and unstable and they couldn't anchor the lead well. In an SCS application Stimwave is very stable from what my doctor told me and he uses it often.

Due to migration, lead breakage issues, and newness of the product and application for peripheral nerves we took stimwave out after the 2nd permanent system had a lead break or had a lead problem. I would say talk w ur doc closely to determine if this is right for you and your needs. Ask him how stable the lead will be and bring up lead migration. You'll know after the trial if it helps you. It helped me a lot but just wasnt right bc the company had not done many or any sciatic nerve peripheral cases. They do tons of scs cases so you would be having an approach that they vetted and tested more thoroughly.

As an aside, my case was so unique the CEO of the company was talking to my doc to give ideas in how to put in and anchor it to make it stay. This company is amazing and really supported me through the trials and difficulties I had making it work. One rep even stayed on the phone with me for hours as I was crying bc the lead moved and I could tell it wasn't working anymore. Kind people and they really care about patients and the product.

Tue, Jan 15 9:09pm · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

I just feel lucky to have doctors who call me, check on me when I am having severe pain. They get that my pain is really bad, even though it is a weird cause and strange situation that created my pain. It took a long time to find the right team of docs to support me and help me. My main doctors saved my life honestly. Without their care, idk how I would have survived the last 4 years of severe pain anytime I used my leg to stand up or walk. I just owe a lot to my local pain doctor and my pain doctor at a large academic hospital. I am so fortunate. @lioness

Mon, Jan 14 9:01pm · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Hi all,

I have entrapment/compression of all the major nerves in my leg due to a major and poor surgical approach during a release of all 4 compartments in my leg 4 years ago. I am on the road to healing, but it has been hard to make it as far as I have made it. I am finally getting surgeries to fix my entrapments and this is working for my pain. I'm so glad I stuck to my guns and never gave up even when many doctors told me I'd never get better, I couldn't be helped, etc. I am thankful for caring doctors who listened to me and believed me, while also ruling out anything more common. I'm so lucky to have personable, caring, patient focused doctors.

Dec 21, 2018 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@bkruppa Nerve enteapment is notoriously hard to image. I never had imaging or "tests" to diagnose my problem. Doctors simply ruled out everything else and also used ultrasound guided peripheral nerve blocks to diagnose. This is a common method of diagnosing the problem of entrapped nerves. Everytime I got peripheral nerve blocks of the affected nerves (which I had done many times over 3 years of working towards a resolution to my pain, by many different and well known specialists), the pain went away 100% until the nerve block wore off. Once the nerve block wore off, the pain returned in full force. No other modality or conservative treatment ever removed my pain entirely like a nerve block.

There are some newer imaging techniques such as MRN (MR Neurography) that are not always covered by insurance and still also aren't entirely accurate – i.e. the imaging could show nothing and your wife could still have a nerve entrapment. Thus, I never did this type of imaging.

I do think you should pursue an EMG/NCS. Even if it is negative, you'll want to show a doctor you had the tests done, and please know the doctor you ultimately work with on the nerve entrapment issue may want to repeat some or many tests again at their own institution. Doctors tend to like tests from their own institution. However, to gather evidence and build your own case, go ahead and get the NCS/EMG now. Those who understand nerves know they aren't always accurate. Just do it to get in the door with a doctor in this field.

A diagnostic ultrasound guided nerve block is another test you need to have done. Interventional pain management doctors, who are often anesthesiologists, perform this. They may also want to do other tests prior to a nerve block, and just let them. Please, as you read this response, remember it took me 3-4 years to get as far as finding the right doctor to operate on my entrapment and for me (and my doctors) to believe I really did rule out all other possible conditions.

I'd find a good interventional pain management doctor at a large teaching hospital. Begin to work with them and know the first one may not be the one you need. Try to build rapport with one and go through all their tests. They will eventually get you to the right answer and right tests, but this all takes time.

You can also google search for nerve entrapment programs or mentions on academic hospital websites. The reason I suggest a larger practice is they are worth their weight in gold if you find a good doctor. I chose my surgeon because if the operation didnt help my pain, he would still help me, as would my pain doc, vs. leaving me high and dry after a failed surgery. It's good to have a team to support you and your wife through this.

Happy to help and answer any more questions. I'm here to help others not suffer for years like I have. There are great docs to help you, but know it will take time and also please get multiple opinions and rule out all else before surgery. I've tried all conservative measures and had so many tests. If helpful I can list them all out to you.

Dec 21, 2018 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

With nerve entrapment, what I am experiencing is that for true nerve compression or entrapment, the only permanent relief is surgical release/decompression of the nerve.

I had a terrible tibial nerve entrapment that caused me so much pain I wanted to die. When I had surgery to release that nerve in October, it felt better quickly. Now, I need to go back to the surgeon and have more nerves decompressed to fix my other "pain spots".

I got this problem from a surgery, too. It took 4 years, failures, trying every conservative option possible, in order to find the right doctors to fix my problem. Doctors who did believe me. And to get to a point where I believed what I was told, that surgery would help. To rule out all other options.

There are doctors who specialize in peripheral nerve release surgery and others who dont sub specialize but at very good. I have seen several sub specialists but ultimately went with a plastic reconstructive surgeon closer to me for many reasons.

Dec 19, 2018 · How do you stick to your dietary plan when traveling for medical care? in Just Want to Talk

I pack my food and stay in AirBnBs when traveling so I can cook food that doesn't make me sick. When we have a long day at the hospital or driving to clinic (we live a 3 hour drive from the hospital where my doctors are located) I pack a lunch for both my husband and I. I often get nervous before my appointments so I am lucky that I eat/pack whatever sounds good just to get calories in.

Nov 21, 2018 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@JustinMcClanahan hi justin! Have any connect members had an off label peripheral stimulator (i.e. used an SCS stimulator in another area of the body)? Previous trials worked well with another system that's wasnt inserted in an open approach and wasnt stable/durable enough for me due to limited approaches to the area I needed stim in. I'm still waiting to see how this one works for me, as I am healing from decompression of all nerves in my lower leg. Had the medtronic put in during same case. Thus, nerves are pretty sensitive right now and cannot run stimulator yet. This was all done 4 weeks ago.