I am 17 years old and diagnosed with trigeminal neuralgia on the right side about 2 years ago. My doctors (neurosurgeons) keep telling me that because of my age, they would not recommend any major surgery.
I had a glycerol rhizotomy 2 weeks ago (after practically begging!), because no medicines work on me. However, today, the "usual" nerve pain was back...
The MRI i had showed no obvious blood vessels on my nerve, however, they said that there is a possibility that offending vessels are present that just dont show up on the MRI.
Has anyone (or anyone you know) had a successful microvascular decompression without solid evidence of blood vessels on the MRI?
Also, does anyone know people as young as me with Trigeminal Neuralgia and what they have done to treat it?
My neurosurgeron said nothing stood out on the MRI, but it is possible blood vessels are there, but not visible on the MRI. My pain occurred randomly.
Damaged by Sargenti Paste R/C said:
If u didn't see a suspect blood vessel, what would your MVD surgery be on? Where is your pain and was there anything that happened prior to the pain starting like any dental or surgeries?
I am 2 weeks post mvd surgery. I have bilateral TN.
I had mvd on my left side, which is TN2 and TN1, NO compressions were ever seen on any of my MRIs. My pain became worse over the past year, resistant to all meds.
My NeuroSurgeon who has performed over 700 MVDs had never seen a case like mine, and ONLY agreed to do my mvd because my TN responded well to Tegretol initially.
There were no guarantees going in, it was a leap of faith…I had no other choice but to try mvd.
Sure enough he found 2 small blood vessels compressing on top and 1 large vessel compressing underneath my nerve.
As I said I am 2 weeks post op and having NO TN pain.
I am feeling minimal pain along my lower teeth and within my ear but feel this is because I am drastically reducing my meds and still healing. I feel this surgery was successful so far…
I would highly recommend consulting with a neurosurgeon who specializes in TN and has performed MANY MVDs. Get at least 2 opinions. You want someone very experienced. I had to fly an hour and 40 minutes to a different province to get my surgery done. It is worth it.
My neurosurgeon said that even the tiniest of vessels can cause the worst TN pain.
My MRI was clear and yet 3 blood vessels were the culprit
Don’t give up hope, please feel free to message me or KTRsmom and ask questions.
(( hugs )) Mimi
I am 23 years old and was diagnosed with TN on the left side when I was 18. They didn’t find a blood vessel causing compression on the left side although I did have a neurosurgeon offer to do an MVD, but I become temporally blind when I go under general anesthesia which is becoming longer each surgery, so any surgery really isn’t an option. I am currently on several mediations, but they aren’t effective. The only thing I have found so far to help was a lidocaine infusion.
I know two people in their early twenties there were diagnosed in there teen and both had multiple MVD’s and Gamma knife, but the surgeries we not effective so they we back on medications.
I’m sorry you have this horrible disease so early in life, but I hope you are able to find something to help you
I would email dr. ken casey - he wrote the book on MVDs and patient experiences and he has done MVDs for decades.
He consulted with me by email - I eventually flew to Michigan to have
MVD --and 2.5 years later only 2% pain comes and goes now. But he will direct you to the right person--- you need a TN top dog. You have to be VERY proactive with this.
Email him and Tell your story brief but thoroughly. Your age, meds tried and procedures. You can leave your doctors name out of it.
Also print off a McGill Pain Scale and fill it out - he may want you to send him one.
Most compressions do not show up on MRI. They usually find them when they go in there to do the MVD. Find a neurosurgeon who specializes in TN and go see them. Good luck to you hun!
Hi Sweetie,
Yes there are alot of times where mri are negative for compression, my doctor explained this to me that what they are doing is ruling out everything else. This does not mean there is no compression. I am sad to hear at 17 years old you have to deal with such horrific pain. There are options sweetie aand never loose HOPE! i am sure there are people out there that had negative MRI’s with compression when they went in there. Stay strong and remember there is help for you!
My Best
Joanne xo