I'm wanting to hear from anyone regarding their experience, or knowledge, of:
-how long they suffered from TN before getting the surgery
-how long they were on medication before it was decided that surgery was required
-how many periods without medication were tried and unsuccessful before surgery
-was there any evidence in MRI's of further compression of the nerve-based on comparison of initial diagnoses scan and any thereafter
----> I have read that TN is a degenerative condition -If this is true, I am wondering if allowing it to degenerate reduces the effectiveness/success rate of surgery
The reason I ask is because I started to suffer severe TN symptoms about two and a half months ago (though I have had mild/on and off symptoms in the past 10 years that I think may be TN related) and I have now received my MRI results, the relevant parts read as follows:
'There is vascular contact of the left trigeminal nerve, just anterior to its root entry points by the left superior cerebellar artery. There is slight indentation and bowing of the left trigeminal nerve. Both mastoids are clear although there is fluid within the left petrous apex.' (the latter is not necessarily relevant to TN)
'Vascular contact and indentation of the left trigeminal nerve, within the ambient cistern just anterior to the root entry point in the brainstem. No enlargement of enhancement of the left trigeminal nerve.'
I'm nearly 32, female, also have a degenerative back/disc condition for which I have had 2 surgeries. I waited too long to take serious action for my back and I don't want to do the same with TN.
I'd like to hear of people's journeys through this and their thoughts on the choices they made...I'm feeling so lost about where to go/what to do next, and I'm scared to come off my meds (I am taking 600mg of Lyrica per day!)
Tree,I am so sorry, I know those feelings also, it is very scarey not knowing what to do or what the outcome might be.You wanted to know about other experiences.Well, mine is a pretty scarey one. I now wish I had never had the gamma knife in 2004, mvd in 2006,nerve blocks from 1997 untill 2004,tens unit in ,whoops,don,t remember (lol) By the way mine started in 1993, and yes mine has done nothing but get worse over the years.All of the above other then the tens unit made everything worse.Rember that this is me. Yes, my mri and mra’s showed a tangled mess of blood vessels wrapped around the tn nerve I had great surgeons, dr.casey being one! He and 3 other surgeons have said leave surgeries,etc alone at this point,I have been through every med. in all types of combos, have tried all types of alt. thearpies,all of the med. creams, lidocaine did nothing maybe changed the feeling some.My neurologist is done with all the meds. me too!I am glad to say it has taken 20? years to be doing better then ever,without pain pills.3years ago I did some research and asked to be put on lyrica,improved my eye pain by about 75% witin a month,next phenobarbital which I have been on 1and a half years that is an old med I know but my dose is fairly low still,that saved my life, not last winter but the one before.Also my BEST THING EVER GALLIXIA cream it saved my life for real this last winter!!! I FELT TOTALLY HOPELESS and had run out of options.It has helped ME SO VERY MUCH!! IT HAS BEEN yON REAL!!! Last is remaron for sleep.Hope this is what you asking about. Willing to chat and will probably post again soon. Wishing you the best day possible. Dawn
I had intermittent, undiagnosed ATN pain for almost 10 years on my right side before it became constant, and the shocks of TN 1 started in December 2012. It took 6 months to get the proper diagnosis, and I was started on Tegertol. I developed an allergy to that medication in three weeks, so was switched to Gabapentin. In October of 2012, I started getting both the shocks and burning boring pain on my left side. By then I was taking 2400 mg of Gabapentin per day,(which was the maximum dosage for me) and was still experiencing pain. In November, I went to a TN expert and had scheduled the MVD for my right side for January 2013. While the surgery did relieve the shocks, the burning boring pain remained, most likely due to the fact that I had had it for more than7 years. In August, I had a PNS implanted to manage the pain on that side, and October I had MVD on my left. That surgery was completely successful, and I am med free.
While everyone is different, my surgeon explained to me that the longer the nerve is compressed, the less likely it is to completely heal once it is decompressed. If you have become resistant to meds, it may be in your best interest to consult with a surgeon who is experienced with the treatment of TN. I live in Georgia, but traveled to NY to see my doctor. I would not go to anyone else.
Best of luck to you!
Hello Tree . . My story seems a little unique in that I think I may have about the shortest window from start of symptoms until I had my successful MVD surgery. I had classic TN1 on my left side that just started literally all of the sudden one day. It took me just 4 days to get a diagnosis and I was started on Trileptal. I had to gradually increase my dose on that over a 4 month period and eventually at a very high dose, the side effects became intolerable (hallucination like "episodes"). During those 4 months and after my MRI/MRA, visits to two neurosurgeons and a pain doctor, I had already made up my mind to have MVD surgery. I had read the book "Striking Back" forward and back and knew from that and the research that I had done, that the sooner I got the surgery, the better. My pain doctor literally told me to "run to an MVD". The problem was that the first two neurosurgeons I consulted with were not TN experts, did not see a compression, and one even tried to talk about getting the Gamma Knife procedure. He also told me that the extreme fatigue and mental fogginess I was experiencing could be helped with coffee.
I had by then switched neurologists and he transitioned me off Trileptal and onto Tegretol XR (extended relief) in order to relieve some of those drug dump episodes. Again, my meds were slowly increased as the pain broke through to the point I was on 1200mg of Tegretol XR taken 6 times a day. The side effects were intolerable and I couldn't live my life that way. During that time, I decided to consult with Dr. Ken Casey (who co-authored Striking Back). He saw the compressions on my MRI/MRA immediately and I liked that his stats for success were better and that complications were much lower. I knew he was my surgeon. I scheduled my surgery with him (out of state for me), got all my ducks in a row for my recovery and jumped right in. That was 19 months ago and I am 100% med free and pain free. I only had my TN symptoms for 9 months and honestly, that was 9 months too long. I am so grateful that I made the choices and decisions that I did and have committed to pay forward and keep in touch with this support group and others that helped me tremendously during those long 9 months. I hope that my story helps.
crikey Tree, sounds like me, i have back problems too, had slipped that was operated on a few years back and they left me waiting for surgery and have a numb foot. and have another one now. my TN started nearly 4 months ago im on 2400mg Oxcarbazepine and the same for Gabapentin and i still get pain breaking through and if thats not enough, i have this dreaded thing on both sides and i need this sorted out asap. i saw a neurologist who i swear was the hospital janitor, absolutely useless he was just said i had to live with it and that was it, but wrote a letter to my doctor and made himself out to be the best neurologist in the world! im going to read the rest of this thread as i would like to know the answers to you questions too.