I an considering one of these procedures…
I have type 2 TN. Any thoughts or suggestions??
Radiofrequency lesioning (also called radiofrequency rhizotomy)
Or
Radiosurgery (Gamma Knife)
me-
I’d suggest you also do a search for each of these terms on this TN web site. There have been other discussions related to these procedures, & I think you’ll get even more info. Just fyi…
I also have type 2 TN or ATN. More than a year ago I was advised by my neuro to ask a neurosurgeon I went to see recommended from this site at a teaching hospital in Tampa, an hour and 1/2 drive for me to find out if RF was something that could be done for me. He was listening and patient with me but in the end he said no to RF or any of the other treatments along with MVD. He asked several times to describe my pain and because I could not say it was stabbing or electric shock like in nature he would not do anything invasive for me as he did not want to make me worse. That did end my search for a cut for a cure which I wanted so badly. This neurosurgeon did not need a positive MRI which I did not have, just a clinical dx.
I am considering neurostimulation which are leads implanted under the skin that several have found some very good relief from their 24/7 building in intensity pain. Just finding someone is the hard part as I am sure I will need to travel and most likely my advantage plan medicare will not cover it. I have had long remissions and I am hoping for that but in the meantime I am getting botox injections following the trigger points for tmj which I have a long history of and also for ON which I was having as an add on when my ATN plus atypical GN pain was unmanageable.
Everyone is different though so keep asking. There are some nerve blocks a member posted that have been helpful. My pain doc doesn't do them. Also someone did post they were getting botox for their ATN. I told my neuro about it today but he does not do it yet and I am trying to find out the sites that can be done as botox is for muscle not nerves. My chronic tmj and history with neck fusions does play a role in my facial pain so I do believe I get some benefit. My neuro is going to start specializing in doing botox only so he is open to me getting material to him about ATN and TN being treated with botox.
I did try all the meds that did help but side effects were intolerable. Tegretol and lyrica. I do tolerate low dosage gabapentin, baclofen and 50 mg. of amitriptyline which was added 8 months ago and several members have given that med a big thumbs up for pain relief from type 2 TN. I did see some change in the intensity of flare ups.
I hope this is helpful. Sharon
What about a sphenopalatine ganglion (SPG) nerve block??
See attachment for a list of relatively new TN treatment results for PSR and GKS. Many more are available by doing a web search on these terms. And, one reply below correctly states to start your search in this web site in the upper right corner of this web page . PubMed has a search bar where you can enter Gamma Knife or PSR for a listing of all the clinical trials reports showing the results of these procedures which have improved tremendously within the past five years. So, you might want to check the reports after 2007 to reduce the sheer volume of reports to review.
119-11Mar15replytolivingwithtnonPSR.docx (18.9 KB)See attachment for web sites you may find interesting.
118-nerveblockwebsites.docx (17.3 KB)I've had 2 MVD's, a lidocaine injection which didn't work and 2 PSR's. All at Stanford.
With the first PSR I thought the pain would instantly go away but what actually happened was within 3 weeks I began to have hours with no pain, then as time went on days without no pain.
I just had my 2nd one and they did it at a greater intensity and although the week after was quite a nightmare, I literally woke up one day and the pain was gone for a few hours and I'm 2 weeks out from that procedure and I have days where I'm 90% pain free.
My first MVD was for ATN but I had the electric pain too (it would bring me to my knees literally) and now that is gone and the 2nd MVD was because I had geniculate neuralgia which has been resolved too.
When all this started last fall I took a lot of medication to manage the pain (I was maxed on Gaba, Triliptal, Baclofen, Valium, Oxy, medical marijuana, etc.) and now I don't take any medication. I don't tolerate meds well and for me the side effects far outweighed the benefits.
This spring I went to see Marin Natural Medicine and learned I had some vitamin and mineral deficiencies and some food sensitivities so I take supplements and I changed my diet.
I meditate.
All of which I believe help keep inflammation in my body to a minimum and keep me from losing perspective.
I'm never going to be the same but I am grateful for the care I've received and the results.
Knabler, please explain PSR's. I can not download the attachment another member posted on this page as I do not have MS Office. And so wonderful for you to have had success to control your pain! Sharon
Granny, Here are the web sites listed in the Word document entitled nerve block web sites. Many pain management doctors and clinics are opening endoscopic and pain management centers to perform nerve blocks and PSR's because they are minimally invasive ( needle injections that require limited anesthesia) and are used to try to locate the source of the pain or reduce the pain. The medical terminology is changing rapidly as doctors develop the techniques. Earlier terms for some of these now routine nerve block injections are SPG nerve block injection and Stellate Ganglion nerve block injection and occipital nerve block injection. Percutaneous Stereotactic Rhizotomy (PSR) is the next more invasive step and injects glycerol or uses a RF heated needle to ablate or destroy part of the trigeminal nerve - click on the second web site below to watch the long but well done video on this procedure like the one described by Knabler as done at Stanford. They do this at many pain centers like Mayfield Clinic in Cincinnati as shown by the video or at Cedars-Sinai Pain Center in Los Angeles or Stanford near San Francisco. Hope this helps.
https://www.youtube.com/watch?v=IVeA6Jxa0bM
What is Trigeminal Neuralgia | Trigeminal Nerve Block Treatment
https://www.youtube.com/watch?v=NioxbJ7OyKI
Percutaneous Procedures for Trigeminal Neuralgia: Radiofrequency and Balloon Compression Rhizotomy
https://www.youtube.com/watch?v=syW5NUDmBXc
What is Trigeminal Neuralgia? Symptoms, Causes, Treatments | Dr. Neil Martin - UCLA Neurosurgery
http://www.ncbi.nlm.nih.gov/pubmed/24077204
Ultrasound-guided trigeminal nerve block via the pterygopalatine fossa: an effective treatment for trigeminal neuralgia and atypical facial pain
https://clinicaltrials.gov/ct2/show/NCT02024724
Ultrasound Guided Trigeminal Nerve Block for Typical or Atypical Facial Pain
https://clinicaltrials.gov/ct2/show/NCT01761604
A Nasal Applicator for the Treatment of Trigeminal Neuralgia
http://www.achenet.org/resources/what_are_nerve_blocks_for_headache/
What are nerve blocks for headache?
http://www.hoag.org/Specialty/neurosciences/Pages/Pain-Medicine/Trigeminal-Neuralgia-TGN.aspx
Treatment options for TGN
Stellate Ganglion Nerve Block images
Stellate Ganglion Blocks at CSPC
(Adobe Flash Player is required to view the animation. Free limited version of the flash player is available from Adobe as an internet download.)
http://www.keckmedicine.org/head-and-facial-pain/
Head and Facial Pain Program
Sympathetic Nerve Blocks for Pain
http://paininjuryrelief.com/treatment/stellate-ganglion-block/#ixzz3FtPGS5qD
Stellate Ganglion Nerve Block
http://paininjuryrelief.com/treatment/stellate-ganglion-block/
Nerve Blocks
Trigeminal Nerve Block
http://www.livingwithtn.org/group/atypicaltrigeminalneuralgia
25Feb15 post in reply to JessieH2 post in Atypical TN group. Had to post as two comments due to limit of 4,000 characters per post. Alsso deleted titles and provided only the web address in the second post.
https://clinicaltrials.gov/ct2/show/NCT02024724
Ultrasound Guided Trigeminal Nerve Block for Typical or Atypical Facial Pain
https://clinicaltrials.gov/ct2/show/NCT01761604
A Nasal Applicator for the Treatment of Trigeminal Neuralgia
http://www.achenet.org/resources/what_are_nerve_blocks_for_headache/
What are nerve blocks for headache?
http://www.hoag.org/Specialty/neurosciences/Pages/Pain-Medicine/Trigeminal-Neuralgia-TGN.aspx
Treatment options for TGN
Stellate Ganglion Nerve Block images
Stellate Ganglion Blocks at CSPC
(Adobe Flash Player is required to view the animation. Free limited version of the flash player is available from Adobe as an internet download.)
http://www.keckmedicine.org/head-and-facial-pain/
Head and Facial Pain Program
Sympathetic Nerve Blocks for Pain
http://paininjuryrelief.com/treatment/stellate-ganglion-block/#ixzz3FtPGS5qD
Stellate Ganglion Nerve Block
http://paininjuryrelief.com/treatment/stellate-ganglion-block/
Nerve Blocks
Trigeminal Nerve Block
P.S. Don't be shy about calling the Principal Investigators on NIH Clinical Trials because they are looking for test patients like us. And, they also have private practices for treatments if you don't qualify for the study.
Here is another old National Institutes of Health report from 2013 on nerve block success:
http://www.ncbi.nlm.nih.gov/pubmed/24077204
Ultrasound guided trigeminal nerve block via the pterygopalatine fossa: an effective treatment for trigeminal neuralgia and atypical facial pain.
The trigeminal nerve is located in the pterygopalatine fossa. You have to look up all these terms in Wikipedia just to understand what they are talking about. Click on the underlined web link title and your web browser should open the article. Otherwise, copy the link name (the underlined web address) into your web browser and hit the return key.
RonaldS, thank you and WOW, someone has been doing a lot of research. That PSR sounds like RF. I was told to do nothing with ATN incuding RF from a neurosurgeon recommended on this site at a teaching hospital. He only treats true TN with anything invasive. His words to me were, "I don't want to make you worse." My neuro wanted me to find out if RF could be done for me but so far I have not found a doctor that will do anything like that. I have had RF on nerves in my upper cervical and have benefited. I do have a great pain doc that does injections now for nerve injury from back surgery and I keep asking if he is doing something for facial pain. Not yet.
But now I have this huge glossary of almost everything that can be done. I am getting botox at this time for tmj and ON sites that have helped settle my facial pain down when it tries to act like tmj with jaw and ear pain. I had a long remission from facial pain and when it returned 3 years ago I also got a form of atypical GN. I have the bitter taste-burning tongue with ear pain. I do think I will look at PNS before I do anything else. At this time I am still healing from a back surgery and can't drive very much. Thank you so much for all these sites. By the way I can't access Word without paying for a subscription. Sharon
RonaldS said:
Granny, Here are the web sites listed in the Word document entitled nerve block web sites. Many pain management doctors and clinics are opening endoscopic and pain management centers to perform nerve blocks and PSR's because they are minimally invasive ( needle injections that require limited anesthesia) and are used to try to locate the source of the pain or reduce the pain. The medical terminology is changing rapidly as doctors develop the techniques. Earlier terms for some of these now routine nerve block injections are SPG nerve block injection and Stellate Ganglion nerve block injection and occipital nerve block injection. Percutaneous Stereotactic Rhizotomy (PSR) is the next more invasive step and injects glycerol or uses a RF heated needle to ablate or destroy part of the trigeminal nerve - click on the second web site below to watch the long but well done video on this procedure like the one described by Knabler as done at Stanford. They do this at many pain centers like Mayfield Clinic in Cincinnati as shown by the video or at Cedars-Sinai Pain Center in Los Angeles or Stanford near San Francisco. Hope this helps.
https://www.youtube.com/watch?v=IVeA6Jxa0bM
What is Trigeminal Neuralgia | Trigeminal Nerve Block Treatment
https://www.youtube.com/watch?v=NioxbJ7OyKI
Percutaneous Procedures for Trigeminal Neuralgia: Radiofrequency and Balloon Compression Rhizotomy
https://www.youtube.com/watch?v=syW5NUDmBXc
What is Trigeminal Neuralgia? Symptoms, Causes, Treatments | Dr. Neil Martin - UCLA Neurosurgery
http://www.ncbi.nlm.nih.gov/pubmed/24077204
Ultrasound-guided trigeminal nerve block via the pterygopalatine fossa: an effective treatment for trigeminal neuralgia and atypical facial pain
https://clinicaltrials.gov/ct2/show/NCT02024724
Ultrasound Guided Trigeminal Nerve Block for Typical or Atypical Facial Pain
https://clinicaltrials.gov/ct2/show/NCT01761604
A Nasal Applicator for the Treatment of Trigeminal Neuralgia
http://www.achenet.org/resources/what_are_nerve_blocks_for_headache/
What are nerve blocks for headache?
http://www.hoag.org/Specialty/neurosciences/Pages/Pain-Medicine/Trigeminal-Neuralgia-TGN.aspx
Treatment options for TGN
Stellate Ganglion Nerve Block images
Stellate Ganglion Blocks at CSPC
(Adobe Flash Player is required to view the animation. Free limited version of the flash player is available from Adobe as an internet download.)
http://www.keckmedicine.org/head-and-facial-pain/
Head and Facial Pain Program
Sympathetic Nerve Blocks for Pain
http://paininjuryrelief.com/treatment/stellate-ganglion-block/#ixzz3FtPGS5qD
Stellate Ganglion Nerve Block
http://paininjuryrelief.com/treatment/stellate-ganglion-block/
Nerve Blocks
Trigeminal Nerve Block
http://www.livingwithtn.org/group/atypicaltrigeminalneuralgia
25Feb15 post in reply to JessieH2 post in Atypical TN group. Had to post as two comments due to limit of 4,000 characters per post. Alsso deleted titles and provided only the web address in the second post.
https://clinicaltrials.gov/ct2/show/NCT02024724
Ultrasound Guided Trigeminal Nerve Block for Typical or Atypical Facial Pain
https://clinicaltrials.gov/ct2/show/NCT01761604
A Nasal Applicator for the Treatment of Trigeminal Neuralgia
http://www.achenet.org/resources/what_are_nerve_blocks_for_headache/
What are nerve blocks for headache?
http://www.hoag.org/Specialty/neurosciences/Pages/Pain-Medicine/Trigeminal-Neuralgia-TGN.aspx
Treatment options for TGN
Stellate Ganglion Nerve Block images
Stellate Ganglion Blocks at CSPC
(Adobe Flash Player is required to view the animation. Free limited version of the flash player is available from Adobe as an internet download.)
http://www.keckmedicine.org/head-and-facial-pain/
Head and Facial Pain Program
Sympathetic Nerve Blocks for Pain
http://paininjuryrelief.com/treatment/stellate-ganglion-block/#ixzz3FtPGS5qD
Stellate Ganglion Nerve Block
http://paininjuryrelief.com/treatment/stellate-ganglion-block/
Nerve Blocks
Trigeminal Nerve Block
P.S. Don't be shy about calling the Principal Investigators on NIH Clinical Trials because they are looking for test patients like us. And, they also have private practices for treatments if you don't qualify for the study.
Sorry I'm so late responding. I just got back online awhile ago. I went to Johns Hopkins last October. The specialist there said "all I can suggest" is a rhizotomy. But both he and my specialist at Cleveland Clinic agree that the chances for success are minimal, even possibly worse, since phantom pain often comes into play. I've had this so long now, it's become a "deep brain issue" From research I've seen, only a neuro-stimulator laid right upon my mental nerve has much of a chance. There are some great options in research, but few can find the funding to take them through trials. I don't know much about the gamma knife. I wish I had some great news for you. Please let me know if you try either.
Henry, I searched for almost 2 years for treatment for my ATN bilateral and atypical GN and after seeing one of the neurosurgeons recommended on this site at a teaching hospital to ask if RF would be beneficial for me I was told no. My neuro who now does botox throughout my scalp but does not inject botox in a nerve nor does he know yet what sites are beneficial for ATN recommended RF. This neurosurgeon frankly told me he only treats true TN and a clinical dx is all he needs. He asks if the pain is stabbing or electric-shock like all the time and if you can't answer yes he does not do anything invasive and told me he would not do anything for me as he did not want to make me worse.
I too am very interested in the PNS. There is a great discussion of this on another page with sufferers getting good results. I am still recovering from back surgery and when I think I can drive again I am almost sure I will have to travel to find a doc that does PNS for ATN. I am also unsure if Medicare will even cover something like this. But I can imagine the mild stimulation moving across my face and masking all the pain.
Sharon
Henry said:
Sorry I'm so late responding. I just got back online awhile ago. I went to Johns Hopkins last October. The specialist there said "all I can suggest" is a rhizotomy. But both he and my specialist at Cleveland Clinic agree that the chances for success are minimal, even possibly worse, since phantom pain often comes into play. I've had this so long now, it's become a "deep brain issue" From research I've seen, only a neuro-stimulator laid right upon my mental nerve has much of a chance. There are some great options in research, but few can find the funding to take them through trials. I don't know much about the gamma knife. I wish I had some great news for you. Please let me know if you try either.
I just got back from seeing a neurosurgeon at the UNM hospital who told me that there was really nothing that could be done surgically for ATN. There aren't any teaching hospital's in New Mexico so like many of you I'm sure the only way to get to one is to travel. I am considering going to the Mayo Clinic in Phoenix AZ but at this point I really don't see the point in putting out the expense to go there. I'm am feeling a bit lost and somewhat hopeless as I deal with the continual burning pain up my nose and the aching along my front teeth and the stabbing pain on the top of my head. No matter the day I know the burning pain will be there continually in my nose and the others come and go. Meds are helping some I guess, I can't imagine what would happen without them. I think it just hit me yesterday and today how hopeless ATN can be. I saw the neurosurgeon on Friday and it took a few days to sink in. I will look at the research you have put out there Ronald S. It is great that you did that and we can look into it. I have already checked into some of those and many seem to deal great with regular TN. I just really wish there was something for ATN that they could do. My neurosurgeon basically said that anything they do just makes ATN worse or doesn't help at all. I feel like I'm losing my life. I am a Christian and desperately holding on to my faith. I know this depression I feel for me is temporary but right now all I see is darkness.
glosmenagerie, I left a teaching hospital in Tampa, FL over 2 years ago with the same feeling you are having right now. I had to drive 50 miles north and I did it during one of worst rain storms we have ever had. I saw a neurosurgeon recommended from this site and I was told the very same thing. My neurologist suggested RF for me. This doctor listened carefully to me. I did have an MRI that had a finding of a blood vessel on my left side however my pain was much worse on the right. It is also a finding that is normal in most people. This doctor asked me several times if my pain was electric shock like and I could not say it was. ATN is constant boring intensifying pain and as you describe burning pain I have burning "cold" pain across my cheeks, nose and along the jaw line. Because I could not answer yes to the electric shock like pain he ruled out all invasive procedures for me and said he did not want to make me worse.
Don't despair. I finally found a combination of meds that help subdue and control bad flare ups. I have better hours of the day and sometimes not so good. I take gabapentin, baclofen and amytrptiline. I also get botox injections from my neurologist for neck pain. He also goes up into my scalp and does all the sites for ON and tmj which I have a history of. He does not know where to go for TN and told me he can't inject botox into a nerve. But this does help me as I do get neck spasms and tmj flare ups that contribute to my ATN and GN.
There is a page on neurostimulation for ATN. I was on my way to research where to go for this as it seems to have helped a lot of sufferers but I ended up needing an extensive back surgery and am still healing from it as I sustained a nerve injury. The site to look up doctors that are doing this can be found on a site for St. Judes Medical Center. You simply click on neurostimulation and you get directed to enter your zip and a list of doctors will come up within 100 miles. A lot of them are doing spinal cord stimulation. I haven't taken the next step by calling all of them to see if one is doing an implant of this device. The electrodes are implanted under the skin following the nerve paths.
I know if you read and read more of the posts from others on sites who have TN and do get the dx for it and are offered MVD and other invasive procedures they are also at risk to having the pain become worse or go away only to return even worse than it was before surgery.
I know how you feel right now. I wallowed in that feeling for a while but am no longer anxious about finding a complete cure. I have had a 12 year remission. This returned about 3 1/2 years ago so I am waiting for that too.
Take care, Sharon
Thanks Sharon,
After a few days of letting my self hang out in depression land I went back to more of an acceptance attitude and have enjoyed doing things on my good days or during my good hours. I do so enjoy the time I feel well. My pain doctor has upped my hydrocodone to 7.5mg from 5 mg and it is making me sicker than a dog (so to speak). I do feel frustrated about that. With the pain I can do very little. On pain medication I can do little. So, I must enjoy the times I feel well. I am trying to decide if I am going to give up playing on the worship team at church and working with the children's ministry because I just can't predict what is going to happen from one day to the next. I've also been a CASA volunteer (Court Appointed Special Advocate) for children who end up in foster care and it is harder and harder to keep up with that. I find it is easier to keep going if I have things to do. But at this point the bad days outweigh the good days.
I now have to decide how to change my life and how much change must there be. The people I work with understand that I have ATN and it has affected me in such a way that I may not be able to come on any given day. I think I must be realistic and let go of the things I've been trying to hold onto, that way others who can be more predictable can take my place. I can still enjoy attending church and helping out there when I am able. As a CASA volunteer I can keep going with that for at least a little while longer and see how I feel. One thing I'm not on yet is amitryptalin. I have had depression problems in the past and worked really hard to get off of all antidepressants. It has been nice to feel my emotions for the first time in many years. I know that the amitryptalin will flatten my emotional responses again. I asked my neurologist about going on it last month but we had only upped my Trileptal for four weeks and she wanted to see if that would work as time went on. It did about three weeks into the change but now I have more bad days than good again. I don't see her for another month and a half. I guess I will have to see about calling her and inquiring about it again.
Thanks for your reply,
Gloria
Glosemenagerie, don't give up everything you enjoy doing but do give yourself a break when you simply can not commit to a schedule. Do not let it bother you or others bother you if you are a no show.
I think when we learn there is no cure for something we so desperately search for we experience a loss. Grieving over a loss of good health is no different than grieving from any loss in life. Give yourself some time to heal emotionally.
I think there are other things you might try. PT at the base of your skull for the head pain. Botox if you think it is behaving like ON. And I think this neurostimulation is something to look into. Has your neuro suggested medications for migraine?
Take care, Sharon
glosmenagerie,
Don’t give up just b/c one dr says that he/she cannot help. You may or may not be a surgical candidate, but there are other things to try. Have you read the book Striking Back? (Offered by the Facial Pain Assn). It talks about a lot of different things that people have tried. I, too, have ATN, and I understand what you mean about your faith being taxed. I agree with Granny on learning to do what you can, & forgiving yourself for what you can’t do. Do a search on the Type 2 group page. They have a number of discussions on things that help atypical (non-classic) patients.
I tried multiple specialists, who all told me there was nothing that could be done. I finally found some things that helped, but after a long time of many dead ends. Keep putting one foot in front of the other & keep the faith. I will keep you in my prayers,
mrl
"me",
Did you ever get the sphenopalatine ganglion block? How did it go? I am thinking of trying it asap.
me said:
What about a sphenopalatine ganglion (SPG) nerve block??
I've had both the surgery and Gamma Knife. I would try Gamma Knife first, if I were you. That way, if it doesn't work, you can do the surgery and Gamma Knife is a lot less invasive. if they would have had it back when I was first diagnosed 20+ years ago, I would have done it.