I have had TN and occipital Neuralgia for 7 years now. It is secondary of MS. I have been holding on with medications until recently. My pain is no longer being controlled with medication.
I need help with suggestions for surgery. Is there a specialty center with TN as their focus in the US? My doctor wants to send me to Mayo Clinic in Rochester. I have had gamma knife which has failed at Froedert in Milwaukee. I want to make the correct choice. I am struggling to continue functioning as a business owner. Life is hell right now. I would love any help you all may have.
I have found that Imitrex (sumatriptan) or Maxalt help with occipital neuralgia. Have you tried either of them. They are meds for migraine, but seem to help me. I have MS as well...had a glycerol rhizotomy and it helped.
No I have not tried them. I will take my notes in to my next appt.
Where did you get your procedure and how much did it help?
I appreciate you taking the time to replay to my initial email. thanks
LOIS E COLETTI said:
I have found that Imitrex (sumatriptan) or Maxalt help with occipital neuralgia. Have you tried either of them. They are meds for migraine, but seem to help me. I have MS as well...had a glycerol rhizotomy and it helped.
Glycerol rhizotomy ...see a neurosurgeon near you...ask how many they have performed and how many successfully. The second time around with it, I had more numbness that affected my eye and interfered with tears production. Now I have to use gel drops in my eye to keep it lubricated. The first time around...no side effects, but it wore off within three years. Good luck!
Did it work completely the 2nd time? What kind of pain did you go in with? Several nerve branches?
LOIS E COLETTI said:
Glycerol rhizotomy ...see a neurosurgeon near you...ask how many they have performed and how many successfully. The second time around with it, I had more numbness that affected my eye and interfered with tears production. Now I have to use gel drops in my eye to keep it lubricated. The first time around...no side effects, but it wore off within three years. Good luck!
hi. my husband has ms and tn. in april he had gamma knife done but it only lasted 2 days. he was laid up for 5 months. then went to a pain center which did a numbing procedure it lasted for awhile since he went once a week. but the pain came back. so the pain dortor tried sphenopalatine ganglion block. it is a procedure that covers more of the nerves. now the tn came back full force. tried to get ahold of pain doc since monday. therefore i took him to a different pain doc. who seems to know more abt tn. they are going to do an RF (radiofrequency) on him. this is a needle in the bottom of the spine which burns off the nerve that sends messages to the brain that there is pain. also going to change his lyrica to gralise. (used to treat shingles) i
hi. my husband has ms and tn. in april he had gamma knife done but it only lasted 2 days. he was laid up for 5 months. then went to a pain center which did a numbing procedure it lasted for awhile since he went once a week. but the pain came back. so the pain dortor tried sphenopalatine ganglion block. it is a procedure that covers more of the nerves. now the tn came back full force. tried to get ahold of pain doc since monday. therefore i took him to a different pain doc. who seems to know more abt tn. they are going to do an RF (radiofrequency) on him. this is a needle in the bottom of the spine which burns off the nerve that sends messages to the brain that there is pain. also going to change his lyrica to gralise. (used to treat shingles) i
Is that spine treatment a medtronics unit? A battery operated unit - the thing that is woven through the spine is and electode. I just had a consultation on that. They stated that with the implant... I cannot have MRI's and also cannot trip or move suddenly or I will dislodge the implant. Is this the same thing?
Where are you having it done?
guppy said:
guppy said:
hi. my husband has ms and tn. in april he had gamma knife done but it only lasted 2 days. he was laid up for 5 months. then went to a pain center which did a numbing procedure it lasted for awhile since he went once a week. but the pain came back. so the pain dortor tried sphenopalatine ganglion block. it is a procedure that covers more of the nerves. now the tn came back full force. tried to get ahold of pain doc since monday. therefore i took him to a different pain doc. who seems to know more abt tn. they are going to do an RF (radiofrequency) on him. this is a needle in the bottom of the spine which burns off the nerve that sends messages to the brain that there is pain. also going to change his lyrica to gralise. (used to treat shingles) i
Glycerol rhizotomy ...see a neurosurgeon near you...ask how many they have performed and how many successfully. The second time around with it, I had more numbness that affected my eye and interfered with tears production. Now I have to use gel drops in my eye to keep it lubricated. The first time around...no side effects, but it wore off within three years. Good luck!
The second glycerolol rhizotomy did get rid of the jaw pain, but I have residual numbness that encompasses my scalp, half my face down to about the jaw line. The numbness is preferable to the stabbing pain, but I do have more of a tendency to have left-sided migraine headaches. I also need to be careful not to eat too many crunchy foods in one day as that seems to stimulate the nerve and causes some spasms that are very painful around my left eye. The numbness does not happen to everyone but with each rhizotomy, the chance of the numbness as a side effect goes up.
I want to make sure I have this correct... rhizotomy -This is a balloon compression procedure? Where did you get yours? Also what drugs are you still taking?
If I had to do it again, I'd opt for the following:
No it is not a balloon compression procedure although that is an option. It can interfere with your ability to chew food by weakening the jaw. (not good).
Another procedure that I wish I had done instead of the glycerol rhizotomy is:
Radiofrequency thermal lesioning. This procedure selectively destroys nerve fibers associated with pain. While you're sedated, your surgeon inserts a hollow needle through your face and guides it to a part of the trigeminal nerve that goes through an opening at the base of your skull.
Once the needle is positioned, your surgeon will wake you from sedation. Your surgeon inserts an electrode through the needle and sends a mild electrical current through the tip of the electrode. You'll be asked to indicate when and where you feel tingling.
When your neurosurgeon locates the part of the nerve involved in your pain, you're returned to sedation. Then the electrode is heated until it damages the nerve fibers, creating an area of injury (lesion). If your pain isn't eliminated, your doctor may create additional lesions. Radiofrequency thermal lesioning usually results in some temporary facial numbness after the procedure.
I feel that the radiofrequency thermal lesioning would be more targeted and may not have damaged the area around my eye. So for better targeting of the treatment, that's what I would do.
s an injection by a long needle into the root of the trigeminal nerve near the base of the brain. I'll try to get you the website that explains the procedure.
Other procedures may be used to treat trigeminal neuralgia, such as a rhizotomy. In a rhizotomy, your surgeon destroys nerve fibers, which causes some facial numbness. Types of rhizotomy include:
Glycerol injection. During this procedure, your doctor inserts a needle through your face and into an opening in the base of your skull. Your doctor guides the needle into the trigeminal cistern, a small sac of spinal fluid that surrounds the trigeminal nerve ganglion — where the trigeminal nerve divides into three branches — and part of its root. Doctors inject a small amount of sterile glycerol, which damages the trigeminal nerve and blocks pain signals. This procedure often relieves pain. However, some people have a later recurrence of pain, and many experience facial numbness or tingling.
I also have ms and have not had surgery yet I have been doing acupuncture it does help, in one month I went from taking two tramadols three times a day to none. The pain is back but nothing compared to what it was and I can eat and brush my teeth again. I am going to see a neurosurgeon and possibly try surgery only because of cost of acupuncture but will continue it until then.
What is the dosage of your drug? How long have you had this problem? I will look into acupunture. I know however, that the progression my disease has taken WILL require some sort of surgery. It keeps getting worse and worse for the last 7 years.Thanks for your suggestion. It seems that is the only thing I have not tried.
I am noticing that not many people on this site take tegretol. I thought it worked the best.
Melanie Armeli said:
I also have ms and have not had surgery yet I have been doing acupuncture it does help, in one month I went from taking two tramadols three times a day to none. The pain is back but nothing compared to what it was and I can eat and brush my teeth again. I am going to see a neurosurgeon and possibly try surgery only because of cost of acupuncture but will continue it until then.
I also have ms, occipital neuralgia came way before trigeminal for me. My first neuro told me occipital WAS trigeminal even though it was behind my ear and the back of my head when it started. I have no input as to surgery, but wanted to say I know what it’s like to have your whole head feel like it’s under attack.