My TN Journey to Freedom

After a year of misdiagnosis, I was correctly diagnosed with Trigeminal Neuralgia (TN) in 2015. As you know,TN is often called the “Suicide Disease”, because of the level of pain and no cure. The TN nerve on the left side of my face was damaged, because a blood vessel was in constant contact and had worn away the Myelin Sheath, which protects the nerve. With every pulse I experienced excruciating pain. After seeing multiple neurologists and neurosurgeons in December 2018, I had Radiosurgery on the damaged nerve. This doesn’t heal the nerve, but blocks the pain signal from the nerve to the brain. The hope was that I would be pain-free for up to three years. After 13 months in February 2020, the pain returned like a freight train.

The next step would have been Microvascular Decompression Surgery. The possible complications from this surgery include a stroke or loss of hearing or sight on the side where the damaged TN nerve is located. While they have success, it’s not known how long one might be pain free. Not excited about this option, God opened another door for me.

Today there are lots of stem cell clinics. Although Centeno-Schultz in Broomfield, Colorado pioneered stem cell and PRP. Dr. Jason Markle, one of the doctors at the clinic, decided to do a small trial with me. I have had three Plasma Rich Platelets (PRP) injections over and around the damaged Trigeminal nerve. Because I was patient number one with PRP for TN at the clinic, each procedure was slightly modified. Initially, I had about three months free from pain after each procedure. It was explained, the PRP, if correctly placed, pushes the nerve and blood vessel apart and then initiates healing. It was expected after a period of time, the nerve and blood vessel would come in contact once again causing pain. When this occurred, I would have another PRP treatment.

I’m ecstatic to say, PRP is the answer to my prayers. It’s been 10½ months since my last PRP. NO PAIN for 10½ months and counting! When there’s no pain, you can easily forget that TN was ever an issue! NO PAIN whatsoever. I’m praying the nerve and blood vessel will stay in place where they belong… apart from each other. If the pain reoccurs, you can be sure I’ll schedule another treatment with Dr. Markle.

CSCEducationCenter@centenoschultz.com

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That is wonderful. The service de effects from the mvd you described where similar to what i have, numbness on the left side of my face, tongue and gums, hyperacusis- an increased sensitivity to noise to the point of pain, and double vision in my left eye. My tn is predominantly type 2 with type 1 being present but less frequent. There is still tn pain but not in my front tooth which was what finally drove me to the mvd.

Was your pain type 1 or 2 predominately? Was it just one part of the nerve that was affected or multiple? I’m really curious about this treatment and will research it. Thank you for sharing!
Camia

I had type 1. The first pain I felt was in my tooth, but changed over time. It got progressively worse and I no longer felt pain in my tooth. If you are curious, contact Dr. Markle. The patient mentioned is me. I sent this to Dr. Markle after posting it here. Another Trigeminal Neuralgia Patient Helped - Regenexx

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Nonna, where did he inject these? Behind the ear through the skull ??

Right over the damaged nerve, which is located on the left side of my nose.

Thank you for being patient #1 & trying stem cell therapy. I’ve had 2 MVD’s & the 2nd luckily on 11/15/21 will celebrate 9 years pain free. As you mentioned when without the pain we forget all about it. My husband had stem cell therapy on his knees & a big fan, he also had several PRP treatments. If the pain ever comes back & I hope not I will talk to his dr and or seek out yours. Each year since #5 I call my neurosurgeon and thank him & let him know he was a miracle worker! He didn’t do my 1st surgery however after researching drs through the facial pain association was very lucky to find a local dr in Tucson Arizona. Wishing you continue to stay pain free!

Thank you NonnaJoann for your information and I’m so happy for you that it has helped so much. I’m am in the same situation and only managing with medications. Do you have an idea of how these injections into the left side of your nose (which is one of my trigger points) can help with the repair of the nerve/blood vessel closeness in your skull? Thank you.

This is my same question.

I can’t tell you. But you can contact Dr. Markle at the Centeno Schultz Clinic: Ph: 303.429.6448
Cell: 954.850.9323

Hi Nonna. I’m so happy you found relief from your pain! I’m wondering if you used Gabapentin or duloxetine (cymbalta) for pain management before the PRP procedure? I have TN1 and live in Boulder, so I’m interested in anything you can tell me about this. Thanks!

Wow you are closer to Centeno-Schultz Clinic than I am. I took NO meds as I’m extremely sensitive. Trust me that’s no fun.

https://regenexx.com/blog/new-treatment-for-trigeminal-neuralgia/

Contact Dr. Jason Markle

Centeno Schultz Clinic: 403 Summit Blvd, suite 201

Broomfield, Colorado 80021

Ph: 303.429.6448

Fax: 303.429.6373

Cell: 954.850.9323

Blessings Joann

Thats cool! i’ve also had Gamma knife in 2004 and MVD in 2010. I’ve just started to get stabbing pain in my right temple and nose area. Won’t have another MVD - lost hearing in my right ear. If I can ask, how do they do the injections? Are you under or is this outpatient?
Thanks

Out patient. I’m under light anesthesia and go home after the procedure. You need to have someone drive you there. I know that Dr. Markel will be able to answer your questions in more detail.

First I’d like to say how happy I am for you. As I read a about the PRP it sounds interesting. I have a brain tumor (menginoma)that is resting on my brain stem. Second one. First one was removed with an 11 hour operation. Because of the severity, at my age it is inoperative. I had radio surgery (radiation). It didn’t last. So Dr Lim at John Hopkins in Baltimore, Md administered a Rizotimy that deadened the nerve in 2016. So far I’ve had only a few bouts with my worst pains but several minor ones.
That is why i was so interested in your good fortune. And I definitely plan on doing research on it in my area. Let us continue to hold one another up. I so appreciate your information. And I’m praying your treatment will last forever. Good luck and thank you. Gloria37

I’m sure Dr. Markle will be happy to answer your questions. In my case, it was one part of the nerve that was affected. It got so inflamed that I couldn’t open my mouth to eat or drink. The quote in this article is mine: Another Trigeminal Neuralgia Patient Helped - Regenexx

I’m 74 and the PRP was an answer to prayer for me. If you read the article (https://regenexx.com/blog/stem-cell-treatment-for-trigeminal-neuralgia/?utm_source=infusionsoft&utm_medium=email&utm_campaign=dailyblog) then you know my history as the quote is from me.