Recurrent trigeminal neuralg
 

I am a 53 year old male and I have had TN for 37 years, (much of that in remission). In 2002 I had MVD surgery and it was mostly successful however this year my TN has returned in full. I am presently taking Dilantin which does not help much and next month my neurosurgeon is going to perform a PSR (Percutaneous stereotactic radiofrequency rhizotomy). I would like to ask if anyone reading this has had a PSR and what was the outcome good or bad?
Thanks

Hi I never had that done.But i wonder why your doc just has you trying Dilantin and that is it? They are not going to try any other meds before they do the psr. That seems really odd. How much dose your neuro know about t.n.? how many times have they done psr with good results? I would think they would try other meds first like neurontin or tegrotol or something else besides just dilantin.
I would love to help you with question but i cant have any surgeries or even an mri anymore so that part soome one else will have to help with.
I am sorry you are dealing with this t.n. monster pain but we are glad you found n.t. and I want to welcome you to this forum . I will see if i can scare up some others and get them to come by and post if they can help.
You take care and best of luck. keep us posted when you can
PEACE
BMW

Sorry I did not give enough information, I have tried tegratol and neurontin and it seems that dilantin is the drug that works best for me however the side effects are to severe and the drug is less and less effective as time goes on.
As for my nero he is one of the leading neurosurgeons in the country and has done many MVD's and PSR's. I have had a MRI and it looks like another MVD would be pointless and the PSR is about the only real option I have besides trying the Dilantin long term.

6 more days until I get the PSR procedure, my TN pain is getting worse because the effectiveness of the Dilantin I'm taking is decreasing. I'm still apprehensive about this surgery because I would love to have the TN pain gone again however the prospect of having the left side of my face numb in some areas for life is kind of scary. Again I would like to ask if anyone has had the procedure or knows anyone who has had it and what the outcome was?
Thanks

I've not had and I won't consider having it. I saw a Neuro surgeon who strongly warned me against it since I have TN1 and 2. He said that it would only make the pain worse when it returned, which he feels very strongly that it will.
Good luck, Ellena

Tomorrow
 

Well tomorrow I have my PSR Percutaneous stereotactic radiofrequency rhizotomy. I have mixed feelings going into this, my neurosurgeon tells me I should have almost complete TN pain relief I will also have permanent numbness and other sensations in part of my face on the left side.::(
Sometimes life gives us choices but just not the choices we might prefer.

it sounds like you are being told ...you wont have any t.n. pain yet at same time you will have numbness and other sensations PERMANTLY on left isde of face??? like you will have anesthesia dolorosa on left side ??? how dose that make any sense?? I have anesthesia dolorosa.... it is THE WORST TYPE OF T.N. PAIN THERE IS. it has its own classifaction . please BECAREFUL .
PLEASE be sure this is what YOU want to do and this is what YOU think is best for you. I am keeping you in my prayers!!!!!!!! THE DOC HASNT CONSIDERED A NEURO STIMULATOR FOR YOU I DONT UNDERSTAND WHY THEY WOULD RATHER GIVE YOU PERMANTE DAMMAGE AND NOT OFFER A NERUO STIM TO YOU AS IT WILL NOT DAMMAGE ANYTHING!!! WOW BECAREFUL!!!!!!! MANY MANY BELSSINGS TO YOU!!!!!!!!!!!!!!!!
:hug: :hug: :hug: :hug: :hug: :hug:

My decision
 

Thanks for your prayers and concerns.
I am not making this decision lightly; I have suffered from TN off and on for over 38 years and all through that time I have been treated by the same neurosurgeon that I trust completely.
He is a past president of the American Academy of Neurological Surgery
and is well published in the Journal of Neurosurgery.
These are just two of his many references.
Because I have had TN for so long I can see that my condition leaves me few options so I'm putting my faith in my doctor and trusting him with my health.
Thanks again for your good wishes and I will post again after my recovery.

Yes please post when you recover .It would be such a blessing to learn more about this and even better blessing to hear you are doing much better with no pain or dammage! It is something I have never heard of and that is why i seem so worried and not sure.Please know I wish the best of the best that you heal fast and all the pain is gone without any permante dammage! That would be such a joy !!! Remember we are here if you need us we listen good and support the best we can as much as we can. :hug: :grouphug: :hug: . I have been thinking and praying for you all day! May this surgery be sucessful and you recover quickly! :hug:
Peace
BMW

I am sorry I was away and wasn't able to post before you had this done. I am sure you know all about the pros and cons so I will just pray you have success and no lasting damage. Please post when you are able and let us know how you made out. Best wishes, Nikki

Surgery Yesterday
 

The surgery is over, it was rough, I was put out but not totally and when the doctor put the needle in my face it felt like I had just been shot with a gun point blank, I know I yelled, good thing my arms were held down.
I have pain from the surgery however my TN pain seems to be gone now, (but I am still taking Dilantin too).
The numbness from the surgery is in my left lower lip, tongue tip and pretty much all along my lower jaw line covering most of my lower cheek; I guess I will get use to it?
My jaw is VERY stiff, I also have to keep drops in my left eye so it does not get to dry.
I will know just how successful it all was when I'm off the Dilantin in 2 weeks.
If I do still have any TN pain when I'm off the Dilantin the doctor may want to do this again.
I think the worst is behind me now, I hope so anyway.

August 20
This is just a follow up to my original post.
It has been almost two weeks since my PSR and I am happy to say that I am feeling better.
My TN pain is not 100% gone but it seems to now be limited to the middle branch on my left nerve, I still have pain in my cheekbone and sideburn area however it is not as sharp as before the PSR but sometimes it does get real intense.
My jaw area has had no pain to speak of and that is the area where I have the most numbness; mainly my lower gum, lip and corner of my mouth and some of my chin but it's not as noticeable as I feared.
I still have some pain, light dizziness and occasional blurred vision from the surgery but it is becoming far less frequent and I still have more healing to do too.
Tomorrow I take my last dose of Dilantin unless the TN pain is too much.
If anyone is considering a PSR I'm just posting this because before I had mine I could find very little firsthand information from people who have had it.

great to see you feeling better and thanks for posting. yes anything you can share is so much appreciated and welcomed and helpful!!!
I hope the pain continues to stay away ..for good for ever. anyway to get less pain is the best thing and I am glad you took those sacry steps to find your way. Many Blessings to you and yours. :grouphug:
keep us posted when you can.
PEACE
BMW

reply to Cithmore
 

Oh I really feel for you. It is like we are all swimming in darkness, doctors and surgeons included. I think that we all have to find our own channels of escape. It's a very individual situation. Please God, in years to come the medical gurus will understand the functioning of the brain and offer quick relief to sufferers. At present, it is all guess work and feeling in the dark. I hope that you are ok...