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.
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
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.
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!
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
Hi, I am thrilled that the PRP worked for you! Are you still pain free?
I am very interested in regenerative therapy!
My husband is taking PRP treatments for his knee pain (thru a Naturopathic Doctor in Oregon) and he said it’s feeling better (he’s able to run again).
I’m 61 and have had TN since 1997. I was managing the pain with carbamazepine until I was taking too much. I had two radio frequency procedures which after the first one I was pain free for 6 years then it came back. I had another RF and it allowed me to reduce the carbamazepine I was taking for a couple of years then it came back stronger than ever. I had two MVD surgeries at UCSF 2007 & 2013 (two different surgeons). The first surgeon said there was a compression but the pain was still there. The second surgeon said there was no compression.
So… long story… I’ve been relying on the medication and I’m back up to a high dosage. Most times it’s controlled but then things happen that trigger it and I have to take a lot that wipes me out.
I was pain free for almost a year. The pain returned in December. Had PRPin mid december, with no results. Had another in Feb. and presently am pain free.
It pushes the nerve and the blood vessel apart and promotes healing of the nerve. After a period of time, the blood vessel and nerve retract and come in contact once again.