I have had TN for several years, I've had two procedures done over the last few years i. Gamma Knife and 2.Rhysotomy, both procedures gave me pain relief for 6 months or so but the pain came back and I had to resort to taking Oxcarbazepine. This is the only drug that has worked for me.
Last week I was at my wits end with pain and called up my Neurologist.The pain had changed for me in that it just would not go away. She e mailed me to call up her nurse who I am very familiar with.
Her nurse told me about a new procedure and she reassured me it worked and told me she would refer me to intervention radiology. A nurse from Intervention radiology called me and I asked if I could be seen ASAP.She scheduled me for an appointment a few days later. I was very skeptical but went to my appointment. I was introduced to the doctor who performs the procedure. The procedure is called 'Sphenopalatine Ganglion (SPG) and took about an hour from once I checked in to when I was discharged. After which, I drove home. No medication were administered and it is not an invasive procedure.
Its been over a week since the procedure, I have no pain and I have not taken any medication. I am able to eat, talk and get on with my life.I have talked to the Nurse who gave me the information. She stated that it is a relatively new treatment for TN. It has been used for patients with headaches for some time but only recently has it being used for people with TN.I told her it was a miracle for me as I never thought there would be a cure.
Any body reading this please call your neurologist and ask them about this procedure.I know all about the pain that TN brings. This does work. I live in WA state.
Here is a nice article about SPG and SPG blocks including a good anatomy lesson. Its worth a read. I've been amazed at the growth of interventional radiology the last few years. They are doing practically miraculous things:
Thats exactly what I thought when I heard about the procedure for TN, I do not have any pain and I am not taking any medication.I know how bad this pain was and I would not joke about it or give false information to other people affected by it.
Ask your doctor or who ever is knowledgeable about TN and about this procedure Sphenoplatine Ganglion (SPG)
It has been around for a while treating people with headaches but recently it got approved to treat TN.
All I know is I had the procedure done over two weeks ago. The doctor who did the procedure for me told me it had worked for other people. I too was skeptical. He did say if the pain came back one can repeat the procedure, there are no side affects. I did have the procedure done now over two weeks ago, there were no side affects and the pain is gone. I am not taking any medications.This pain is no joke and I needed a cure without another procedure or medications (mainly seizure meds) Please talk to your doctor about it.
And not to be a bother but, how are you feeling, Angel?
Any break through pain? Have you grown a Siamese twin out of a shoulder? Or is this a case of no news is good news?
angel said:
Hi Annie
All I know is I had the procedure done over two weeks ago. The doctor who did the procedure for me told me it had worked for other people. I too was skeptical. He did say if the pain came back one can repeat the procedure, there are no side affects. I did have the procedure done now over two weeks ago, there were no side affects and the pain is gone. I am not taking any medications.This pain is no joke and I needed a cure without another procedure or medications (mainly seizure meds) Please talk to your doctor about it.
I had a SPG done twelve years ago so it isn’t an overly new procedure.Unfortunately for me then it didn’t work.I had another done three years ago and again didn’t work.But I have heard of many people being helped by this procedure.I have ATN so maybe SPG does not work as well .
Todays SPG has nothing in common with what was done several years ago. The new Kid on the block "interventional radiology" has change almost everything. Some centers know and use other docs are oblivious.
A good example is they spent three days trying to stabilize my FIL last spring, so he could withstand a general anesthetic to have ports installed for dialysis. Along came his cardiologist who was livid. He sent him to the Interventionl radiologist and 20 minutes later he had the ports, no wait for "healing and was recieving dialysis an hour after that.
Angel, that is reassuring. Yesterday, I had the results of my MRI of the brain and was told it showed I have had headaches for a long time, I still do and they are excrutiatingly painful. My first treatment is next week and every two weeks after that. Keeping my fingers crossed. An FYI for those who live in Bakersfield, Ca, Dr. Alexan is the only one offering this procedure and for what it's worth, I do like him, he listens and takes the time to answer your questions, and his staff is also very efficient.
Good luck with your treatment.I know the STG is used for people with headaches.I myself do not get headaches, What I have is the most excruciating pain known as Trigimminal neuralgia, as I stated before the STG procedure did work for me for a short time but the pain came back, I repeated the procedure twice and when the pain came back soon after the procedure was done so I gave up the notion that it could get me 'cured' .I am now back on Oxcarbazepine , I was so hopeful it would work for me.
I had a SPG done twelve years ago so it isn't an overly new procedure.Unfortunately for me then it didn't work.I had another done three years ago and again didn't work.But I have heard of many people being helped by this procedure.I have ATN so maybe SPG does not work as well .
I was not aware about SPG until a few weeks ago when My doctors office told me it was a new procedure and I thought when I had it done it was a cure, The pain went away for a week before it came back, I repeated the procedure thinking 'now it will work' but the pain relief lasted a short time again I repeated the procedure two more times before I could admit to my self 'its not working' so I started back on Oxcarbazepine.
Thanks for replying Angel! A post on here told me that the procedures for SPG have vastly changed since I first had one done years ago!Im sorry it didn’t work for you and it is hard to accept that something isn’t going to work! However we are ever hopeful we fortuitous facial pain sufferers!
How are you on oxcarbazine ? Do you have side effects? I did when I started on it many years ago and quickly gave up.Now I’m wondering that I wasn’t patient enough and maybe should try it again.do have a very happy Christmas!
but i just wanted to take your attention to explain how is your type of TN,because ,may be the procedure is not usefull for all types of TN .
me also i underwent "Pulsed radiofrequency of trieminal ganglion-sphenoplatine",but did not give good result,it decreased little bit my headaques but increased pain and pressure on right face,it may damaged.
I had this treatment done in Seattle WA Dr Crane, I have added to my discussion that this treatment did work for a while. Curently Im taking Oxcarbazepine, It takes the pain away. I was advised by the Doc who did it that it doesn't work for everyone.