I hope you’re all having a pain free day today! This past week I had a second MRI done and confirmed with my neurosurgeon that, I’m perfectly healthy. No nerve compression. Which as a 27yo, I’m happy about. He recommended Internal Neurolysis. It’s intentional nerve damage, done by separating the nerve fibers. It’s the same process going in and almost the same surgery as an MVD, with the same recovery period, etc. When I left the office, I was ready to schedule it. Just get it over with. Last week had been a really intense pain week for me. All sorts of new pains had popped up; riding in the car, air conditioning, no reason at all. But this week…I’m fine. Other than the side effects of my meds, I feel great. I ate a sandwich yesterday and i’m not paying for it today! It feels like a brand new world. And so of course, I’m doubting whether I should have surgery. Maybe this was all because of my insane stress levels this year. And how sick I was. I’m just conflicted. And probably a little scared. and I would love to hear from people, whether pro or against surgery for treatment of TN. Oh, my surgery would be at OSHU in Portland performed by Dr. Kim Burchiel, which is about a 3 hour trip from my house. Thanks in advance for your input!
I’m very anti surgery until other non invasive options have been considered/ used and then ruled out as unhelpful. The trigeminal nerve complex extends to the facial territories, but the other end of it extends to the middle of the neck, neck dysfunction can cause pain in the face with or without neck pain…
Especially in the absence of vascular compression on MRI, I’d consider this as a starting point prior to invasive procedures. Vascular compression findings on MRI are not proof of cause anyway.
Perhaps take a look at the other end of the trigeminal complex with regard to posture, stress etc…
Wishing you well.
I am a bit confused. If the MRI showed no nerve compression, why are you scheduled for surgery and "Internal Neurolygis? It woulds like a bit of a fishing expedition. Dr. Berchiel as OSHU is a real expert on these things, and so presumably your MRI was done on their high resolution scanner. Bit at 27 years old, you are relatively young to have TN, if I am recalling things right. The fact that the meds help certainly suggests you have pain somewhere, since they block the sodium channels that transmit pain. But it could be your jaw, your teeth or some other source than tangled nerves in your brain. The problem with the meds is that your body adjusts to them over tie, which requires you to take larger doses over time. It also means that the pain feels worse without meds, over time, In my own opinion, that is why TN is reputed to inevitably get worse over time. For what it is worth, I have had facial pain for almost 20 years, and never treated it long term with pain meds. Perhaps that is why now I am almost pain free. Best, SwedeP
I read your post today while doing research about Internal Neurolysis and felt like you were echoing my very thoughts! I saw Dr. Burchiel yesterday and he too recommended IN. I too have severe TN pain but had a clean MRI with no compression. I am about 10 years older than you but still “young” to be diagnosed with TN (TN1).
Have you had the surgery? I am waiting for dates but am a little scared. So tired of meds and already up to 800 mg of Carbatrol after only 6 mos. I have good weeks and really bad weeks as well, so also ups and downs for me.
Look forward to hearing back from you!
It sounds like we’re on the same journey. SO WEIRD! Why is this happening to us??
To answer your question, I haven’t had surgery. I can’t commit. Because much like you, I have great weeks! Weeks where I’m totally normal (minus the anxiety of when it’s going to happen again). I have no compression, no other nerve problems. And although I know that internal neurolysis would help my symptoms, I know it’s not going to fix the problem. And I’m not ok with that.
I’m a pretty firm believer that stress and my immune system are my biggest triggers. When I had my first attacks I was seriously sick with mono and selling and moving out of our house. All within a week! My wedding was quickly approaching and we were starting the home building process. It was all so exciting and I was miserable. I couldn’t eat. At all. Even smoothies were painful some days. Not to mention the emotional effect. There’s nothing like TN to make you feel terrified and helpless and pissed off all at the same time.
I really liked Dr. Burchiel and if I was to have surgery, he’d be who I’d want to do it. But being a surgeon, he sees fixes in terms of surgery. And my regular neurologist sees fixes in terms of medication (600mg carbamazepine. I was at 800mg but I got yelled at by my neuro…I kinda went up without her permission). So this leave us in a really tough position. Who’s looking for the real problem? Who do we go to? My next step is hormonal testing. Adrenal fatigue can reek havoc on your system and maybe after the year I’ve had that’s what’s going on.
I hope that you’re having more good weeks than not…and although it’s a crappy way to meet, I’m glad to have another PNW girl to talk to (:
It is a crappy way to meet, but nice to meet you too. I’m a new PNW girl (as of 2 months ago;). I just had two really good days and its been great but your mind plays tricks on you thinking it’s not there anymore (only because the meds are working) and then BAM! I’m having attacks and ready to go to surgery again.
I do think severe stress has something to do with exacerbating the pain or stimulating attacks. When I had my first attacks I was at the happiest time in my life, in fact I got engaged the very same day it all started.
I am tempted to wait it out and keep increasing the Carbatrol as needed but pretty sure my neuro said the effectiveness maxes out at about 800mg…I am waiting for dates for surgery and will just see how I feel through the process. What I am fearing is he pain and recovery of surgery but if it gets me off the meds…
I will let you know what I decide, maybe we can stay in touch through this process?
Absolutely! Keep me posted on what you decide! I definitely know the ups and downs and how when it hurts so bad all you can think is, why WOULDNT I get surgery?? And then a few days later you feel ok and start to second guess it. That’s the vicious circle I’m in right now. But like you mentioned, the recovery sounds brutal. And the reality of taking 6 weeks off work is just a little too hard to swallow right now. I hope your Monday starts you off to a pain free week! If you ever need, feel free to text me (:
Thanks - I will keep you in the loop. Right now I am going to schedule it for a few months out. My neurologist said “see how the pain feels in a month” and she too would recommend surgery. Side effects from the meds are really getting to me. I’ll stay in touch!
I’d encourage you to avoid surgery due to its uncertain success rate and high risk. I had my first shock at 13 years old. Didn’t come back enough to bother me greatly until in my twenties when high stress / weakened immune came along. I’m now 37, been through a few horrible bouts…unable to speak or eat, etc. Never taken a single pill for it or had surgery, etc.
Currently completely pain free, thank God. Several things I’ve learned.
- Docs don’t know what causes it or how to cure it.
- It’s clearly related to stress and a lowered immune system
- I believe it’s caused by a viral infection crossing the blood brain barrier and getting into the nerve system
- Upper Cervical Chiropractic definitely can have an impact
- I believe killing off the virus in the nervous system may be a permanent cure. (Very hard to do, but possible with Olive Leaf)
Once you do surgery, nerve damage can occur that I believe could make it difficult to ever heal completely.
Before trying surgery, consider trying both Upper Cervical Chiropractic, and at least three months of Olive Leaf Treatment. I’ve written about it some in my other posts.
In any case, blessings on your journey. Know that I truly feel for you. The pain cannot be understood until it’s been experienced personally.
You should try the options all the medicines before deciding for any type of surgical or oral interference with the trigeminal nerve. I tried & ended up with anaesthesia dolorosa (a 24,hour burning pain) ultimately had to go for big surgery cutting the nerve at the root which brought permanent relief from pain but also ended up with lasting numbness.