Spinal cord stimulator + Chinese Herbs

I’ve been having TN for 22 years (I’m 30) and I’ve tried everything on the lesser invasive side of things. A spinal cord stimulator was suggested by a team of docs at the Mayo Clinic. Has anyone tried a stimulator in their neck? I’m now weary of it bc my kaiser docs said it hasn’t worked in their experience.

I’m also starting my 4th day on Chinese herbs. Two formulas called Aurum and the Gold Standard formula. My TN is caused my a brain stem tumor pushing on the trigeminal nerve. These herbs are supposed to 1.) clear any infection In the spinal cord or any peripheral nerves. Myobacterium can cause neuritis and nerve pains 2.) shrink my tumor by allowing my immune system to better recognize my mutant cells. It’ll be a miracle if this stuff helps my pain at all. Has anyone tried Chinese medicines?

I’ll leave the question of the spinal cord stimulator to the experts.

I will discuss Chinese herbs though. Regardless of whether they work or not, there are concerns with the use of these. There is always a question as to whether they are safe or not, or even what they contain. In addition, there’s the additional cost, not covered by health insurance of course. With that said, I would also include your medical doctor in any discussion of alternative medicine or supplements.

You said that your TN is caused by a brain tumor, and that the herbs, in parts, are supposed to clear any infection. What infection? That part doesn’t really make sense to me. I fully understand that you are trying to improve your situation. My main concern for you is your safety.

Sharon from ModSupport

Continuing the discussion from Spinal cord stimulator + Chinese Herbs:

I worry a lot about trying any “medicines” that don’t come with an insert describing side effects and allergic reactions. I am deathly allergic to things, and I never know what I’m deathly allergic to until I ingest it. So many medications I took when I was a kid, I developed allergies to (even Percocet). And I mean deadly anaphlaxis-type allergies.

I tried a TENS machine for neck pain that they said could be related to my TN and Occipital Neuralgia. For some reason it made the neck pain worse. I got a jabbing pain in my neck.

I am concerned that the medication also is supposed to “clear any infection”… When was your last MRI? I was told that MRI’s can image infections and they show in a different color. So if you have an infection, that can be seen on imaging, and most likely you would end up with hospitalization to clear a brain infection, which can cause seizures, etc.

I don’t want to drown your hopes but much of Chinese medicine was created when people couldn’t see what was wrong - so headache pain was assumed to be an infection etc.

The fact that your doctors can SEE and know what causes your TN can help your treatment but also rule out a lot of it, too.

If you are on medications, there could also be side effects/interactions that are unknown with Chinese medicine.

I know TN is terrible but I also know that self-treating things can have devastating consequences. I was born with one kidney and didn’t find out until I was 38… And there were so many things I would have done differently had I known. (I have chronic kidney disease because a kidney “wears down” when it’s solitary and for years I took meds that were risky because I didn’t know)

I have TN2 that affects the right side of my face. I was diagnosed in 2014. By 2018 i had gotten to my limit with medications and still being able to work. My pain doctor referred me to a doctor in Miami that was using nerve stimulators on the trigeminal nerve successfully. We first did the test run and the relief was felt immediately. I had the permanent implant done in July 2018 and it has been a great decision. With TN2 my pain level before the implant ranged from 5-7 consistently even with my medication (Nucynta, Lyrica, Naproxen, Cymbalta and Baclofen). Since the implant my pain is 3-4 most days and i was able to decrease my lyrica dosage. I had no side effects from the implant. I have two leads, one above the eye and the other below.

I do not have any compression of the nerve. My damage is to the nerve sheathing, supposedly from being a pre-diabetic for many years. So i don’t know if it would be as successful for you, but it was a game changer for me.

C.P.

Thank you for your response. I did think a lot before starting the herbs and made sure they wouldn’t effect the meds I’m already on. I didn’t know that about MRI’s and seeing any infection… That’s interesting.
I was and still am cautious about any new stuff I put in my body. I pay attention to any slight change there might be. I want to give this a good try so I can look back and KNOW it did or didn’t help.
I’m sorry the TENS machine made your pain worse. That’s a bummer to read.

This is so nice to read! Thank you for your response. It’s nice to know of someone who has it and it has been successful. I’m glad for you. So far the Chinese herbs haven’t done much, so perhaps I might be looking into a stimulator more. CA

Does the fact that it’s in the neck bother you?

Thanks for your reply. I consider my health on a daily basis lol. I understand it as IF there’s any underlying infection going on, these herbs would clear it up. Underlying infections can cause peripheral nerve pain. I’ve been on the herbs for almost 2 weeks and so far, nothing has really changed. I’m determined to finish the month (doctor recommended at least trying for a month) to confidently say it didn’t or did help.

The battery pack is on the upper right side of my chest with the wiring running up the side of my neck behind my right ear then over the ear to the two nerve branches. I do have some pain around the back of my neck and head were the wiring runs. But I don’t really notice it.

C.P.

Thank you for your speedy reply! Interesting… does the battery pack stick out at all? What is that pain from - just irritation from having the wires there?

Yes the battery pack is about 2.5" x 1.5" and pack does stick up close to 1/4", so it is visible. The pain seams to come from the wire and the tension from head movement. My wire is tight,so days that i have a lot of head and neck movement are when the pain/discomfort comes.

C.P.