Please update on this procedure for botox for TN. My neuro does botox for me once every 3 months for neck pain and also goes into my scalp area but only knows where to go for occipital pain. Once I did get some relief for my ATN. He does not know how to treat TN with botox yet. So please let me know how this is done. I don't know where this doctor is. I live in SW Florida. Thanks and good luck to you. Sharon
Christine said:
Just want to let you know that the peripheral nerve stimulator is implanted just under your skin. The surgery is out patient, and the surgeon does not go near the nerve itself. I see you are on Medicare, and I have heard that this is covered . I understand your reluctance to have another procedure, but I do hope you investigate the PNS. It works so well for me on the pain in my head face and teeth, I would recommend it to everyone. My neurosurgeon , Jeffrey Brown , in New York, is one of the few doctors using this for TN. I see that you are in PA, so perhaps you would be able to see him? He is an expert in TN and all its treatments. Christine
santafered said:
Her symptoms sound similar to mine. There is no test for AD from what my Dr. has told me. It is decided simply by the symptoms. I truly will always think I waited too long to do anything invasive and the nerve was so damaged. I took strong doses of meds for so many years. Afraid to do the surgery. Broke down and had the Gamma Knife at the University of Kentucky. Pain free for 6 months. Then back with a vengeance. So 2yrs. after the Gamma Knife I had an MVD done at Alleghenny General in Pitsburg. Went to Dr. Peter Janetta's office. Had an easy time with recovery. But sortly after it I started with these symptoms. Kept getting worse. It first started in 1999., had Gamma in 2008, the MVD in July of 2013. Either the nerve was already to far damaged before surgery, or it was damaged during surgery. At this point I'm truly scared for them to go in again. Even for a pain stimulator. I have tried just about every drug on the market. Now that I'm old enough for Medicare, they won't pay for so many things. Now living on SS, my resources are limited. Thanks for your concern. I appreciate it. Grecio said:
I am so sorry for your pain. My wife has had MVD, gamma knife, and numerous injections to the face at Emory Hosp., as well as radiofrequency stimulation for type 2 TN. Nothing has helped.
She describes the pain as a burning, pinching, gnawing pain in the roots of her teeth on one side only. Sometimes on the top, and sometimes top and bottom. It even radiates to the ear on occasion. It doesn't hurt when she is asleep. Upon wakening, the pain starts slowly and gets worse as the day goes on. If she chews anything, the pain flairs up.
I wonder if she has AD? Does anyone have any idea how AD is diagnosed? We are investigating Botox injections for TN at this phone# 412-647-6776 in Atlanta. Ask for Lois. God Bless!!!
It is Anesthesia Dolorosa. I recommend that you look it up. It is a condition you suffer when the Trigeminal Nerve is so severly damaged, there is nothing they can do with it. Seems it is like Phantom Pain. it's there but you can't see It or get a grip on it.
Santafered, good name for this time, anyway, I am so sorry for your desperate feelings. I am atypical, I am not a surgical option, nor would I allow any neurosurgeon that would operate on me to do so as I was advised by a the top neurosurgeon for TN at a teaching hospital in Tampa, USF, recommended on this site, he did not want to make me worse as in AD. The only other option I am looking into is PNS. I have read your comment you are afraid to have them go in to do anything else. I understand as I am also dx'd failed back surgery 13 plus surgeries and am now living with the consequences, sure it helps a lot at first but they don't tell you about the scarring and bony growth that comes back to mimic the condition you were operated for and the surgery failed to correct a deformity. Anyway, I don't like anyone feeling desperate, I am 58, SSD, Medicare too and this PNS may not even be covered. I have read some have been quoted $60,000 to have this done. It looks like a far reach for me. But as far as I know from googling on this, it is irreversible, can really do no harm as the leads are implanted just under the skin, not directly on the nerve but the area or dermatome that the nerve sends sensations to. At best 50% pain relief, meds are usually continued. I am not jumping at this at this time, but I did find a good site www.sjm.com where you can enter your zip and doctors that are implanting this device pop up within a 100 mile radius, all neurosurgeons and pain management doctors. I have had a spinal cord stimulator for neck pain and the leads were bouncing off scar tissue and I did not get 50%, not sure if this is similar. I do understand your hesitation but I am remaining optimistic for more research and more success with treatments that do not leave you damaged. Happy holidays, Sharon
I went to that sight and could not find where to put in your zip code. I actually didn't have much luck with the site. But thank you.
Granny said:
Santafered, good name for this time, anyway, I am so sorry for your desperate feelings. I am atypical, I am not a surgical option, nor would I allow any neurosurgeon that would operate on me to do so as I was advised by a the top neurosurgeon for TN at a teaching hospital in Tampa, USF, recommended on this site, he did not want to make me worse as in AD. The only other option I am looking into is PNS. I have read your comment you are afraid to have them go in to do anything else. I understand as I am also dx'd failed back surgery 13 plus surgeries and am now living with the consequences, sure it helps a lot at first but they don't tell you about the scarring and bony growth that comes back to mimic the condition you were operated for and the surgery failed to correct a deformity. Anyway, I don't like anyone feeling desperate, I am 58, SSD, Medicare too and this PNS may not even be covered. I have read some have been quoted $60,000 to have this done. It looks like a far reach for me. But as far as I know from googling on this, it is irreversible, can really do no harm as the leads are implanted just under the skin, not directly on the nerve but the area or dermatome that the nerve sends sensations to. At best 50% pain relief, meds are usually continued. I am not jumping at this at this time, but I did find a good site www.sjm.com where you can enter your zip and doctors that are implanting this device pop up within a 100 mile radius, all neurosurgeons and pain management doctors. I have had a spinal cord stimulator for neck pain and the leads were bouncing off scar tissue and I did not get 50%, not sure if this is similar. I do understand your hesitation but I am remaining optimistic for more research and more success with treatments that do not leave you damaged. Happy holidays, Sharon
Santafered, so sorry, I should have given you a more specific search on this site. I will give you the directions. As I have not researched the doctors in my zip area yet, I think if you do your area you will find many doctors that do spinal cord stimulation and hopefully some that do PNS. Here are the specific directions on the site.
Go to: St. Jude's Medical - Official Site (Green lettering)
Now you are on the Main Page
Next: Upper right corner of page, click on Patients
Next: Upper middle of page click on Discovering Neurostimulation
Now you are on the Main Page for neurostimulation
Next: Lower left side of page under all the questions about neurostimulation will be a box in GREEN lettering:
Find a Pain Specialist Near You...this is where you enter your ZIP CODE and should get a list of doctors that are
doing neurostimulation...the next step is finding someone that does PNS neurostimulation.
Good Luck to You...I would be searching too but I am headed to my neurosurgeon for possibly more surgery for my thoracic and lumbar spine. I need to be able to walk and drive first and I am having difficulty with that, so my facial pain is on hold and this am I having a pretty bad flare up of my facial pain, ATN. Sharon
I too suffer from AD after my first MVD. I thought it was successful until about 3-4 weeks down the road when the "frozen" feeling began setting in. It wasn't just numb as they had warned me of...more of a cold frozen feeling as I said. I also get an itching and pulling sensation. My fear is that when the TN returns (hopefully many years from now) what will be my options. My surgeon says I should probably not have another MVD or any destructive treatments. What does that leave me with? I fear for the future. I pray that before it returns for any of us that the medical community comes up with either new drugs or new procedures. Does anyone have any experience with the future after having AD and what to do when TN returns or does this effect the prospect of the TN returning???
Mimi, will you please explain this cold frozen feeling you have as a symptom of AD after MVD? I have ATN and atypical GN. One of my symptoms in my face, and even my ears feel this way is a cold sensation across the cheeks, bridge of nose and jaw area, I have it worst over my upper lip. I tried those creams but they made me burn like a burning cold sensation. I have to admit this is one of my symptoms that really drives me crazy. I have never had MVD, only surgery to repair my tmj joint in '86. I was told by an ENT the tmj joint is only 1 mm away from cranial nerve 5 which causes TN, ATN, and is even involved with GN which I have but is atypical.
Mimi, I have been responding to so many emails on several sites. I am interested in PNS, peripheral nerve stimulation which is invasive as far as implanting leads under the skin near the cranial nerve, TN nerve, 5th most likely that several others, Christine is one who has responded with at least 50% reduction in pain. I am not a surgery candidate as my pain is atypical and the response to anything invasive like MVD or any destructive procedures would most likely make me worse. So for those who have failed MVD, PNS is being discussed on another page. You can find this specifically with a Jeffrey Brown in NY or log on to the St. Judes Medical site, Offical Site at www.sjm.com, go to Patients page, next Neurostimulation, and then there is a page to enter your zip code and neurosurgeons and pain management doctors that are doing neurostimulation will come up within a 100 mile radius. Most do spinal cord stimulation. I have not researched my zip yet as I am on my way to my neurosurgeon for possible surgery again for lumbar and thoracic spine, I need to be able to walk a little better. Most likely I may have to travel somewhere out of town but in Florida if I want to get this done. Insurance does not always pay for this and it is very expensive.
So should your TN return as AD, there is a page of lengthy discussions about using PNS if you have exhausted all surgical approaches and meds are not helping. Take care, Sharon
Thanks for your reply Sharon! Actually my 'frozen" feeling that I have now is AD. It is there all day long, but gets worse in the evenings. As I said, it began about 3 to 4 weeks post-op after my MVD. I do feel this surgery was successful despite this outcome, as I do not have any electrical feelings going on anymore. This was and is still my question about when and if they return...what will I then do? You asked what this "frozen" feeling is like. I tell people that it actually feels like someone threw me into a snowbank and held my face there for a half hour. It feels cold and frozen! I hold a heating pad on it and this seems to calm it, but obviously you can't do anything else with your time when you are doing this. It is quite uncomfortable. I also as I said have a tugging and burning sensation that I believe are typical with AD. I am still taking some Topamax, to help with this, but not nearly the amount that I had been on pre surgery. I'm not sure that it actually helps though. I play with the dosage to try and figure out it's effectiveness. I wish you and all of us a Happy New Year filled with pain free days!!!
Mimi, exactly, this cold sensation feels like ice on my face. I have never had an MVD, only surgery for tmj with regard to any pain with face, jaw, temple, and ear pain. I too like to cuddle up to a heating pad closed up around my face like a blanket. What I did find out doing that all the time just made it harder for me adjust to the temperature in the room. All TN and ATN sufferers dislike AC, ceiling fans, and cold winter winds. I have scarves I wrap around my neck and face even while sitting through a service at my church, the church is sooo cold! I do not know if this is a symptom of AD. Let's see if others have anything to offer that have AD or this type of facial pain.
My doctors look at me like I have 4 eyes whenever I have described this to them. And yes, I have been asked if I need to talk to someone like I am a crazy person. As I type I am having a very strong flare up of this cold icy feeling on my face and my ears. I live in Florida but still the cold fronts that come through here are damp and windy. I feel for those who have to deal with the northern winters. My daughter wants to knit a covering for my face. I found that is helpful, just covering my face with anything. I will let you know if I find anything that helps this. You too have a Happy New Year and some pain free days ahead of you! Sharon
I live in Wisconsin and I can tell you I hibernate in the Winter. If I wrap my face up to keep the cold out my glasses steam up and if I take my glasses off I don't see to good. Everything that both Granny and Mimi describe is exactly what I go through and it has gotten worse with every procedure that I have had to try to get rid of the pain. When the cold touches my face my chin stiffens up and I start getting a burning sensation in my face. It seems like once it starts I am done in for the day. I refuse to let it defeat me. I know it is something I will have to live with the rest of my life and there is no amount of medication that will take it totally away. I hurt so bad by night time that I can't wait to get to sleep. This is when I do take pain medicine to help get to sleep more than anything. I also put a heating pad on my face and a ice pack on the back of my head. I try to figure out what works for me and am very thankful that my husband is very understanding. I enjoy the summer as much as I can and it is a very short one at that. My dad was a minister and one of things he always told me, when you get down, look around and thank the Lord for what you do have. It does help in my spirit to do this. I have a home, my husband still has a job, I have three beautiful grandchildren, a mother I am very close to that also had TN (with a very successful MVD surgery 20 years ago), but understands what I am going through. Most Doctors know what AD is, TN, etc. they just don't comprehend the pain you are in. They say rate your pain and I just laugh and ask them why don't you rate it if you can. Laughter is also good medicine, I do whatever it takes to help get my mind off it. I will be 55 in February so if I live to be and old lady I have a long ways to go to deal with this pain.
Pamela...have you had an MVD? Is this when your AD began? If so, how long after did your TN pain return. I am still wondering with having the AD, if this will affect how long the success of the MVD will be. I guess really no one can really answer this, since everyone is so different. Again, I'm wondering what my options will be when the TN pain returns. As you said future treatments only worsened your condition. You sound like you have a good attitude and I commend you for this. I agree that this is so very important for all of us. Support is the key! Sometimes I feel like I have it and sometime maybe not. Our condition being invisible makes it so difficult for our friends and family to always understand and I try so hard not to talk about it all the time. Thanks for your input...I appreciated hearing from you!
Mimi: I had Gamma Knife in 2008 and MVD in 2009. This year in June I went to Kansas City and had Microscopic Decompression Surgery. He wasn't aggressive with the procedure because it might cause AD. Then I went back again in July for another round. I was pain free with the Gamma Knife for 6 months. I was pain free with MVD for 6 weeks. Then the numbness started to set in. With the other procedures it was great at first because I had total numbness without the crawling or burning pain. As time has gone by I am getting worse. My husband is afraid for me to go through anymore procedures. it's like a deaf person, people don't see you are deaf so when you don't answer them they think you are stuck up. With blindness you have a white cane and wear sunglasses. With what we are suffering with people can't see it unless you are have a sharp pain in your face and you can't talk when your in the middle of a sentence. People for the most part, unless they really love you don't really care or they don't care to understand. I get this from people when I am asked how I am feeling "but you look so good". M y husband response to that is a dead person looks good too. Even the people that really love you can get use to what you have and become immune to how you feel. My pat answer to anyone that ask me how I am doing is "I'm fine". My doctor in Kansas City told me that this is a disease there is no answer for. They have made progress over the years, but no cure. If talking about it helps you, then be hang with what other people think. I've had it for so long that I have found different ways of dealing with the pain. When a nurse is going to put an IV in me and they tell me there is going to be a poke and it may burn. "I look at them and say really?' or I'll say "do your worse." I have developed a high pain tolerance that not to much phases me unless it is one of my grandchildren is hurting. I had did have a blood vessel wrapped around that TN. That's why I had the MVD. I believe the gamma knife is was caused the damage to the nerve. At Mayo the said that they are finding out that the first procedure that should be done and has the highest success rate is the MVD. I also read this on line from a Clinic in California. Just take one day at a time and try to find happiness in you circumstances. When you have a better day, take advantage of it and do something fun.
Pamala, that is exactly how I feel. No one realizes what we go thru. All of your symptom sound like mine and what I have gone thru. Gamma first, 2yrs. later MVD. I had a surgeon in Dr. Peter Janetta office do it. The best. Now I suffer with AD. And just like you said, people say, "Oh, you look good". But they really don't care how we suffer. They can't see it. I will never have anything else done. I'm to scared after 14 yrs. of everything else. I try to keep busy, but it does hurt, 24/7. Only when I'm asleep. And I'm not a good sleeper. Mouth and lips burn all the time. Eye socket hurts especially t night. I'm just worn out with it all. I have always had a high pain tolerance as well, but my patience is wearing thin. Even my grown son's don't get it. I just know I'm tired. I'm in Kentucky. I'm 65 now. It has been a long time for me. It's old and wearing on me. I to have 3 precious grandchildren. They probably keep me going. Thanks for your imput.
Pamela Olson said:
Mimi: I had Gamma Knife in 2008 and MVD in 2009. This year in June I went to Kansas City and had Microscopic Decompression Surgery. He wasn't aggressive with the procedure because it might cause AD. Then I went back again in July for another round. I was pain free with the Gamma Knife for 6 months. I was pain free with MVD for 6 weeks. Then the numbness started to set in. With the other procedures it was great at first because I had total numbness without the crawling or burning pain. As time has gone by I am getting worse. My husband is afraid for me to go through anymore procedures. it's like a deaf person, people don't see you are deaf so when you don't answer them they think you are stuck up. With blindness you have a white cane and wear sunglasses. With what we are suffering with people can't see it unless you are have a sharp pain in your face and you can't talk when your in the middle of a sentence. People for the most part, unless they really love you don't really care or they don't care to understand. I get this from people when I am asked how I am feeling "but you look so good". M y husband response to that is a dead person looks good too. Even the people that really love you can get use to what you have and become immune to how you feel. My pat answer to anyone that ask me how I am doing is "I'm fine". My doctor in Kansas City told me that this is a disease there is no answer for. They have made progress over the years, but no cure. If talking about it helps you, then be hang with what other people think. I've had it for so long that I have found different ways of dealing with the pain. When a nurse is going to put an IV in me and they tell me there is going to be a poke and it may burn. "I look at them and say really?' or I'll say "do your worse." I have developed a high pain tolerance that not to much phases me unless it is one of my grandchildren is hurting. I had did have a blood vessel wrapped around that TN. That's why I had the MVD. I believe the gamma knife is was caused the damage to the nerve. At Mayo the said that they are finding out that the first procedure that should be done and has the highest success rate is the MVD. I also read this on line from a Clinic in California. Just take one day at a time and try to find happiness in you circumstances. When you have a better day, take advantage of it and do something fun.
My MVD is what caused my AD. I think this is what is somewhat hard to take. I thought I did my research and found that this is the procedure that is least likely to have this happen. I also chose a good DR. I guess we just have to learn to accept and go from there. Thanks for your response!
Wow, so many responses to AD and TN being invisible and difficult to explain the pain to family and even your doctors. I walk with a cane at 57, have been since 2005 from failed back surgery. This one shows. I don't need to say anything about how I feel about this one but family and friends assume if you are getting around you must be doing fine, ha, ha, constant sciatica, nerve injury to my legs, back pain, legs swell and on and on. My neck is fused at 3 levels and that is also a chronic pain area for me and could be contributing to this face pain, add the tmj pain and then this horrible face pain and quite honestly I can say I hurt from the top of head to the tips of my toes...my toes have spasticity and curl up on me through the night..very painful!
All of you that have AD from doing an invasive procedures that may have initially helped and then failed or simply failed may no longer benefit from more procedures. Because I am atypical surgery was not offered to me and I was advised to not do any of the other procedures because there was a high risk of making it worse from nerve injury. Our pain is constant 24/7 building in intensity but without the stabbing or electric shock like symptoms. I know that is the most painful symptom known to mankind. You should tell your family this, google it, it says it is the "suicide disease". So, I don't get the stabbing or electric shock like pain so many of you do and my heart goes out to you all that suffer like this. The anxiety of not knowing when it is going to hit you again must be awful at times. And yes, I can see it being visible with these attacks but if it goes away family and friends assume the pain is gone. Do most of you with AD have a more constant 24/7 pain now?
I see a lot of deep feelings being shared on this page. This site has been by far the most supportive site for this type of pain. I have gone into other face pain sites and the comments and subject matter are all mixed together without very many responses to someone's concerns or questions. My email is loaded with responses coming back over and over on so many different subjects about this disease I have not been able to view them all but I will get to them. I feel like all of you are my companions in my life, taking it one day at a time and sometimes one hour at a time. We are not alone.
I was just in the hospital for a test that injects dye into the fluid surrounding my spinal cord...very painful procedure but there was a woman next to me awaiting a test result that was experiencing liver failure. She was so pretty and smiling. There is so much disease in God's world. My 31 year old daughter is going in to have suspicious moles in your scalp looked at and probably biopsied, she has had many moles removed because of melanoma. She is at a high risk because my father died from melanoma at 31 from a mole on his scalp that turned into cancer and went to his liver.
When I go into the hospital I see so much suffering, I was hospitalized for 2 months in '05 and oh my I am grateful I can get up and walk out to be home with my little doggy, visit my little grand kiddies, paint a little, and do a pool class with all the other old ladies in my condo. I too like someone here mentioned am so darn healthy I will probably live 20 to 30 more years with this pain! So be it. Sharon
Yes prayers are a must for me! He is my joy! This pain will not last forever.....
Jimmy Works said:
Santafered, I am sorry so much pain is coming your way. I know JUST how you feel. Nobody can see it. Family sometimes seems oblivious. But, that's because they can't see whats not visible. I suffered for 2 years then had a GK. That helped greatly, for me. Not so for everyone. I was pain free for 9 years. Then WHAM-O. It came back with violent shocks across the face -- just as rapid as machine gun fire. It was way past horrible. They then gave me a CK. That was 4 years ago. That did a lot of damage to the nerve causing numbness, and all kinds of running-like feelings. But, that is what the CK was suppose to do.....damage the pain sensors of the nerve. I take Lyrica and Trileptal and Elavil. I am much better now, but I still have to stay on those meds daily, but I can function. I will never be back to normal 100% but I am viable and can do pretty much as I please. I just have to take those meds for the neuropathy caused by the CK. The drs. did what they could. This disorder is not like other pains where they can do this or that. They just do the best they can, and for that I am thankful. I've done a lot of praying ---and with that praying believing! I feel that God has given hisb blessing on my prayers. Otherwise, I would not be here. Nobody, no matter how strong they are can cope with this on their own. Prayer is a must.
Jimmy, prayer and spiritual faith have helped me get through each day. I would rather have a conversation with God than a psychologist which most of us have been asked to do when the doctor can not find anything wrong. Are you depressed? Is something bothering you? I have been asked these questions numerous times, so annoying because it is the doctor's inability to understand or even have a decent education of this rare condition that turns the attention of the issue to a "this patient must be crazy" and needs help. The kind of pain you just described could drive you crazy. I am glad you are at a level of satisfactory pain relief. Sharon