There's a procedure called nerve block which comes under the practice of interventional radiology.It's a cat scan guided injection of a steroid. I had this done last September and it gave me great relief where I came off 700mg's of tegretol in about a month. It lasts for several months and if the pain comes back you can have it done again.I was told you can have steroids injected every 6 months.
I only heard one member (Diana) mention that she's had a few of these procedures.I'm scheduled for my 2nd nerve block July 1st. I was just thinking why this procedure is not mentioned on this site by the members. I would like to hear some stories from any members who have this nerve block. I think it's a great option to surgery,no pills,no pain,just an injection. I hope I'm not being naive here, but like I said I only had it done once.
Hi Rick Yes I have had these injections and when they work I can get up to five months pain free and I get to come off meds and return to normal. I now get the injection before the pain returns so I only have to take half my meds.I have heard of another lady here that gets the same treatment and it gives me a chance to live a normal life.
Where do you get the injection? I had this done and injected into the Trigeminal Ganglion as I have more than GPN pain. This did not work for me but thought I may want to try this in another location for GPN. Please let me know where you had the injection.
Hi Rick and Diana, I had the nerve cut 19 years ago. Aparently this surgery is not done any more with advanced surgery taking place. Back then there was no other option put to me and was elective surgery. I am left with burning pain at base of tongue, throat, left occipital and neck. This is constant. The unco ordinated swallow is the same as before surgery. If any one knows of someone who does these injections please let me know. I have again been put on Meds by a Neurologist out of the Alfred in Melb, Victoria. Refered by a pain clinic. I am one who has great sensitivity with the side effects of meds so that has been a big drawback in the control of this dibilitating pain. Thanks, and am so glad the injections have helped you. WW
I go to Dr Frank Chambers he is a consultant in anaesthesia and pain medicine he works out of the Mater Private Hospital in Dublin. He gives me my life back by getting the pain block injections plus I get to come off meds that make me more dopey than usual. One or twice the injection has not worked but five months down the line I know he will try again.
Hi Diana, I'm curious as to why the injection didn't work. Did your Dr. use a cat scan to get a good picture of the 9th nerve and where to inject. I remember my 1st & only time I was in and out of the cat scan maybe 10 times and each time my Dr.made a mark just below my right ear. He picked up my ear lobe and taped it. My head and body were tightly secured by velcro and I heard him and the assistant say over & over don't move. He has to get as close to the nerve as possible and without disturbing the other nerves.I'm lucky because I live in New York City and the hospital is Cornell Weill New York Presbyterian, Dr.'s name is Marc Schiffman. When are you due for another nerve block ?
WW....I will give you the phone # of top Neuro-Surgen in NYC...Call him and if there is any possible treatment to at least lessen the pain then it might be worth your visit. This is his field...You can also google him he has a video.
Dr.Philip Steig....212-746-4684 Cornell Weill New York Presbyterian.
PS: I had a visit with him last year, He referred me to pain management where I found this nerve block.His thought was if I could control the pain with other means than do so and avoid surgery.
Your in my prayers, Rick warrior woman said:
Hi Rick and Diana, I had the nerve cut 19 years ago. Aparently this surgery is not done any more with advanced surgery taking place. Back then there was no other option put to me and was elective surgery. I am left with burning pain at base of tongue, throat, left occipital and neck. This is constant. The unco ordinated swallow is the same as before surgery. If any one knows of someone who does these injections please let me know. I have again been put on Meds by a Neurologist out of the Alfred in Melb, Victoria. Refered by a pain clinic. I am one who has great sensitivity with the side effects of meds so that has been a big drawback in the control of this dibilitating pain. Thanks, and am so glad the injections have helped you. WW
In the neck just below the ear, target is nerve # 9 for GPN.....#5 for TN
Be well, Rick
Christian22 said:
Where do you get the injection? I had this done and injected into the Trigeminal Ganglion as I have more than GPN pain. This did not work for me but thought I may want to try this in another location for GPN. Please let me know where you had the injection.
WW,,,,mispelled Stieg is correct warrior woman said:
Hi Rick and Diana, I had the nerve cut 19 years ago. Aparently this surgery is not done any more with advanced surgery taking place. Back then there was no other option put to me and was elective surgery. I am left with burning pain at base of tongue, throat, left occipital and neck. This is constant. The unco ordinated swallow is the same as before surgery. If any one knows of someone who does these injections please let me know. I have again been put on Meds by a Neurologist out of the Alfred in Melb, Victoria. Refered by a pain clinic. I am one who has great sensitivity with the side effects of meds so that has been a big drawback in the control of this dibilitating pain. Thanks, and am so glad the injections have helped you. WW
Hi Rick and Diana, I had the nerve cut 19 years ago. Aparently this surgery is not done any more with advanced surgery taking place. Back then there was no other option put to me and was elective surgery. I am left with burning pain at base of tongue, throat, left occipital and neck. This is constant. The unco ordinated swallow is the same as before surgery. If any one knows of someone who does these injections please let me know. I have again been put on Meds by a Neurologist out of the Alfred in Melb, Victoria. Refered by a pain clinic. I am one who has great sensitivity with the side effects of meds so that has been a big drawback in the control of this dibilitating pain. Thanks, and am so glad the injections have helped you. WW
Re the nerve blocks - there is a discussion on these on the site. From memory, there's also a link in the useful links discussion. So if you do a site search it should come up. There are risks associated with having nerve blocks and you need to be aware of these - your neurologist can fill you in.
I don't have nerve blocks for GPN but I have had a number of them for a spinal injury, not altogether dissimilar. The results, as I've mentioned in previously, can be a bit hit and miss. Even though you may get exactly the same block each time. For example sometimes - I'm in blissful pain free state in a day, others I'm in agony for 4 weeks, before it settles down again. This can be full on nerve pain without a break. The blocks, I've found usually do "reset the nerve" a term my spinal guy likes to use. Eventually, though, the pain does return. There is no guarantee how each intervention will pan out - it really is down to chance - so that is one of the key things you need to be aware of. There are a number of potential complications and risks, again, your neuro or anaesthetist needs to brief you on these before you make an informed decision. I do agree with Trippir, if you haven't investigated this option, its definitely worth having the discussion with your health team.
As with anything we try in an effort to find some relief, use extreme caution. Along with glossopharyngeal neuralgia, I also have a cranial cavernous malformation. (a form of AVM)
Early on in my experience, I thought about Nerve Blocks and inquired with various doctors that perform them. Due to the complexity of my issues, no one would touch me! Later, my neurologist had me try lidocaine infusions last year. Treatments were every 3 weeks. I was up to 1200 units that took 24 hrs to intake via something like an IV with a bottle pump. After 2 or 3 months I experienced my first seizure.
Nerve blocks manipulate the electrical charge (or potential) of the transmitter (nerve), neuron and the receiver (brain).
According to the doctors explanation - All humans have the potential for seizures. Its the balance of electrical signals in our bodies that prevents seizures. The lidocaine infusions manipulated the electrical charges, and lowered my threshold to where I had a seizure that landed me in the ER. (btw... It was at the end of the 3 week cycle on a Friday night and my appointment for the next infusion was that next Monday, at the same hospital!). Recovery seemed to take a vey long time after that event.
Looking back, the treatment was very hard on me with too many roller coaster Highs and lows. The seizure event is a very unpleasant memory. Recovery took a long time, and was frustrating. I'll never try that again!!
In order to find a therapy that works for us, we need to be open minded, and I don't want to detour from that in the mssg I'm reflecting here. I just want to express a word of caution to anyone considering Nerve Block treatment.
EXPERT-ID: E-000116A severe reaction to anesthesia is not a common occurrence but it is reported in the medical literature. There is no fool proof method of predicting the response of patients to drugs but an extensive discussion with the patient about their medical history is crucial to avoiding such issue.
Rick
Eddie said:
As with anything we try in an effort to find some relief, use extreme caution. Along with glossopharyngeal neuralgia, I also have a cranial cavernous malformation. (a form of AVM)
Early on in my experience, I thought about Nerve Blocks and inquired with various doctors that perform them. Due to the complexity of my issues, no one would touch me! Later, my neurologist had me try lidocaine infusions last year. Treatments were every 3 weeks. I was up to 1200 units that took 24 hrs to intake via something like an IV with a bottle pump. After 2 or 3 months I experienced my first seizure.
Nerve blocks manipulate the electrical charge (or potential) of the transmitter (nerve), neuron and the receiver (brain).
According to the doctors explanation - All humans have the potential for seizures. Its the balance of electrical signals in our bodies that prevents seizures. The lidocaine infusions manipulated the electrical charges, and lowered my threshold to where I had a seizure that landed me in the ER. (btw... It was at the end of the 3 week cycle on a Friday night and my appointment for the next infusion was that next Monday, at the same hospital!). Recovery seemed to take a vey long time after that event.
Looking back, the treatment was very hard on me with too many roller coaster Highs and lows. The seizure event is a very unpleasant memory. Recovery took a long time, and was frustrating. I'll never try that again!!
In order to find a therapy that works for us, we need to be open minded, and I don't want to detour from that in the mssg I'm reflecting here. I just want to express a word of caution to anyone considering Nerve Block treatment.
I'm hesitant to move forward with anything until I've looked into it. I did a lot of on line searching after I was told I'd be starting these treatments and did find this info at that time. I couldn't find anything negative, or that would detour me at the time.
In addition to that, I have to trust the specialists. I myself never put 2 & 2 together with respect to Seizure's being a prominent symptom of the malformation, (meaning I was already prone) and I would hope the specialists would have put 2 & 2 together. They didn't correlate the symptoms of the malformation, specifically seizures with how the drug works, or that it might bring me down below that threshold.
Because of my experience, when I saw your Post this morning, I wanted to share my experience. We're all different, our physiology is different, our tolerance or reaction to drugs is different, etc. Nerve blocks seem to be effective and safe in general terms.
