My Mother had her 2nd balloon compression surgery for TN in January 2015. She is now left with numbness on the right side of her face which is where the TN pain had originated from. The numbness is so aggravating & she also feels pins & needles sensations there too, along with other weird sensations from time to time. It's a nagging feeling she tells me & she feels like the "Phantom of the Opera" because it feels like she has a mask on her face. She has these feelings all the time. They don't go away. I've read that someone can have anesthesia dolorosa & not have pain, but still have a "nagging" feeling with numbness. Mom hasn't had pain since her 2nd surgery but these side effects of surgery are horrible! Is this anesthesia dolorosa that she has? We have been hoping that the numbness, etc. would have gone pretty much away by now since her surgery in January but it hasn't. We are starting to believe all of it could be permanent. Has anyone had any experience with these types of feelings following TN balloon compression surgery (the nerve root was crushed)? Thank you for your help!
I have it from an mvd surgery. Was very painful for the first 6 mths after surgery and then the pain subsided a bit. Can go mths without the pain and then back again for a week. Mine is in the tongue area. Try to relax the nerves as much as possible. I do acupuncture, yoga (I find exercise helps a lot), and anything that takes the stress off the nerves. I have not tried this but you might want to...http://anadmiracle.blogspot.com.
I’m sorry your mom is dealing with this. I’ve had TN for 15 years. I had an unsuccessful MVD in 2005, then a Cyberknife radiation a few months later, no pain for 4 years, then after meds quick working had another Cyberknife in 2010. Last June it came back full force and I had a ballon compression in September. With all 3 procedures I have gotten more numb which is normal with all ablative (nerve damaging) procedures. For at least a month after the balloon compression the tingling and advanced numbness was extremely hard to deal with. But, it did get better slowly to the point I am still numb, but not annoyed. If it isn’t numb, she would still have the pain.
So, I believe the numbness will calm down for your mom and do not believe she has Anastesia Dolarosa. If that were the case she would have a constant intense burning sensation. Not the tingling of numbness. Did she not have some numbness and tingling after her first procedure? Hopefully the nerve will calm down for her in the next few months, but she will most likely have the numbness forever. After 15 years of numbness for me, it’s just the way it is. I’ve become very used to it.
Following my right side combination glycerol/radiofrequency rhizotomy in 2011, I experienced facial numbness, dry eye, spikes of sharp, intense, pain, and some points that itched intently. The hospital where I had the procedure provided a prescription for Gabapentin (Neurontin) which helped to mostly eliminate the pain/itching. I took the Gabapentin for several months until the unpleasant side effects of the rhizotomy finally disappeared. The facial numbness slowly diminished to the point that it did not bother me.
It sounds just like what happened to me and my diagnosis was anesthesia dolorosa. It is a kind of pain all on its own! Very uncomfortable producing heat and painful numbness. My case has improved with cymbalta and tegretol. I used ice packs when it was really bad. Hope she gets some relief soon.
I had balloon decompression in 2006. I awakened from surgery in excruciating pain. Numbness, pain and severe headache. My doctor said it would go away and diagnosed me with AD. He scheduled me gamma knife radiation in Dec 2006 and no change. I have been to Neurologists and Neurosurgeons all over the country and they all say it's AD. What you are describing as your mother's symptoms sounds like AD to me. My left ear even feels as though it's muffled. I had my hearing checked and it's perfect but it's the AD. One good thing is that it has lessened over the past 9 years. It seems to get more numb the more pain I have. I was told that nothing, medication wise, will touch the pain because the gray matter in the brain is where the sensations are stemming from and it's impossible to treat that area of the brain. Wish I could be of more help.
I had gamma Knife in 2002 and didn't have any pain or numbness for 10 years. Than in 2012 i had gamma knife again, I now have numbness on the right side of face including my lips and tongue...also have severe pain in my fight temple. i was given Lyrica and nuerontin. I currently take 200 Mg of lyrica and 600 mg of nuerontin. otherwise I'm in severe pain?
SO SORRY that is AD. I have same thing had a procedure ( RF) on 1/19/15 , and now I am numb from my (deaf )ear , to all of right side of my face, lip and tongue. I was told it is permanent and very awful ! I am seeking help from Pain Dr. but none so far. AND my shocks are coming back some. GOOD LUCK in helping your poor Mom! Thanks for sharing this is not common.
Thank you, JDE, for sharing your experience with me. I'm sorry for the pain you've experienced & still experience. You said pain is in the tongue area for you. That's got to be one of the worst places to have it. Since Mom's 2nd surgery, she has had numbness & pins & needles in the tongue & right side of face but no pain. She went to her neurosurgeon a couple days ago & he said she doesn't have AD. I don't believe him. He said to her that AD is "a burning only" in the area of concern. I've read online that it's "pain with numbness" or can be just "a nagging" feeling in the area where TN was. And, she has a lot of nagging sensations. Thank God Mom receives weekly massage & has for years since she had started having back problems years ago. Massage has been a true blessing. I've been wondering if facial massage would be good for her at this time. Since she started having TN a few years ago she has backed off from facial massage. But, I think it may help her at this time. Thank you for mentioning acupuncture, yoga & exercise as great helps. I will tell her about that. And, thank you for the website you shared with me. I pray your AD lessens more & more everyday. And, I believe the positive actions you have taken will accomplish much for you too. Thanks, again, for your help JDE!
JDE said:
I have it from an mvd surgery. Was very painful for the first 6 mths after surgery and then the pain subsided a bit. Can go mths without the pain and then back again for a week. Mine is in the tongue area. Try to relax the nerves as much as possible. I do acupuncture, yoga (I find exercise helps a lot), and anything that takes the stress off the nerves. I have not tried this but you might want to...http://anadmiracle.blogspot.com.
Hi LB,
I don't believe your mom has AD. I had MVD surgery for my TN 11 months ago (on June 19, 2014). When I woke up from surgery my entire right side of my face was dead (numb, frozen, rock hard). I couldn't feel a thing. I lost part of my hearing as well. The hearing came back after two weeks. The nagging numbness feeling you're talking about I can definitely relate. It was very uncomfortable feeling and I also thought I had Anesthesia Dolorosa. But slowly and I mean very slowly little part of my face came back, starting with the forehead, then temple, tongue, roof of mouth, cheek then chin. It took a total of almost 11 months for all these parts to come back. Currently, I'm still partial numb in my teeth, upper and lower lips, but it is nothing major. The electrical shock from TN disappeared immediately after surgery. I was completely off all medications after 2 weeks of surgery. It felt great! My head was so clear since I was on medications for the past 8 years. Here comes the not so good part. After four months of surgery (although my numbness still existed in certain part of my face) I began to feel lots of nerve movements around my mouth. It spun out of control. It would twist and turn and goes all crazy directions. I can feel every never fiber in my face and mouth during these movements. It hurt a lot to a point where I had to check myself into the emergency room. My surgeon at the time (this was back in November 2014) said nerves are waking up and that's why I'm feeling these movements and pain. Well, it was been almost a year now and I still feel these crazy movements and pain. Now it twists so badly that my upper and lower lips are moving on its own. I went back to see the surgeon last week and he freaked out. He said all his career, he has never seen anything like this. He thinks and assumes that the Teflon either moved or that it is touching the 7th nerve (the facial nerve) and that's why I'm having these crazy movements. He suggested another MVD surgery to see what is causing this. I'm really scared because what if I experience the shocking pain again or the numbness from the second surgery won't go away, leading to AD or who knows what else can happen.
Hi Nina. Re your "who knows what else can happen," I had a right side MVD in 1999 from which I got an intracranial infection that required my return to the hospital for more surgery, and extensive antibiotics treatment. The MVD itself went well, immediately ending my TN attacks. I did not have any facial numbness, although I did experience some hearing loss in my right ear. I got off Tegretol soon after the MVD with no problems.
About a month after I got home from the hospital, I awoke one morning to find the back right side of my head wet. When I felt my head and then looked at my hand, I was shocked to find it covered with blood and pus. My pillow had a large bloody spot on it. I called the hospital where I had the MVD, and they told me to get back there immediately. Examination indicated that I had a bacterial infection inside my skull. In effort to combat the infection, surgeons removed much tissue and additional bone around the MVD site, and placed me on "last stand" antibiotics which I was on for several weeks. The doctors told me frankly that if the antibiotics did not stop the infection that it would be bad for me. I now have a long, deep, vertical groove on the back right side of my head where skull material was removed.
I know of two other individuals who had the MVD the same day I did who also became infected and had to return to the hospital for additional surgery and antibiotics treatment.
Thank you, Liam, for sharing your experience with me. I'm sorry you had those painful side effects of the rhizotomy. But, it's great the Gabapentin actually eliminated the pain/itching you experienced following surgery & that it helped until the unpleasant effects of the rhizotomy finally disappeared. It's also great that the facial numbness diminished to the point where it doesn't bother you anymore. That's really wonderful! Mom had used Gabapentin before her 1st surgery & didn't like it because of side effects she had experienced. She has started taking Lyrica for the troubling after-effects of her 2nd surgery which was in January this year. I think she has AD now, although her neurologist disagrees. He said to her that AD is "only a burning" in the area. I've read that AD can also be "nagging" sensations as well as "pain with numbness." Anyway, I pray her numbness & other weird sensations go away over time. Thanks again, Liam, for responding to my question. May everything continue to go well with you!
Liam said:
Following my right side combination glycerol/radiofrequency rhizotomy in 2011, I experienced facial numbness, dry eye, spikes of sharp, intense, pain, and some points that itched intently. The hospital where I had the procedure provided a prescription for Gabapentin (Neurontin) which helped to mostly eliminate the pain/itching. I took the Gabapentin for several months until the unpleasant side effects of the rhizotomy finally disappeared. The facial numbness slowly diminished to the point that it did not bother me.
Hi LB. You are most welcome. Re Gabapentin, if it affects your mother the way it does me, I can understand why she doesn't like it. For me, its side effects are about as bad as Tegretol/Carbamazepine, causing me to be forgetful, confused, dazed, unsteady, excessively tired, and sleepy, the higher the dosage the more severe the side effects. I wish your mother the best of success in coping with her problem.
Hi LB..
Yes..Go by your gut feeling. I have found I am pretty much more in touch w whats going on and usually right and Doctors not to be the best at diagnosing, just great to turn to if you need a prescription. I went to 5 different neuros at Cedars Sinai considered to be the best and they all told me I was wrong when I complained that I was having problems w my medications causing side effects. They said I wasn't taking a high enough dosage. then went to my internist who tested me and said I need to get off the meds as my sodium levels were so low I could be having seizures. Thank god i listened to my gut and got tested. This seems to be the case over and over.
Whatever your mom is going through, know its real and super difficult. But treat the pain with complete honor and respect and do everything to that she can spoil herself. Rest if needed, eat the right foods that bring down inflammation, etc. Don't rely on doctors! The pain meds can get her through, I have done it without because I want to understand it and come to terms w it. I believe I went through AD for awhile as well, it was torturing burning for 6 wks but I have overcome it. It does come back every now and then, my tongue feeling 5 times its normal size and in pain, but I relax, sleep and know the pain will go away. Good luck. Hoping it will subside.
Janet
LB said:
Thank you, JDE, for sharing your experience with me. I'm sorry for the pain you've experienced & still experience. You said pain is in the tongue area for you. That's got to be one of the worst places to have it. Since Mom's 2nd surgery, she has had numbness & pins & needles in the tongue & right side of face but no pain. She went to her neurosurgeon a couple days ago & he said she doesn't have AD. I don't believe him. He said to her that AD is "a burning only" in the area of concern. I've read online that it's "pain with numbness" or can be just "a nagging" feeling in the area where TN was. And, she has a lot of nagging sensations. Thank God Mom receives weekly massage & has for years since she had started having back problems years ago. Massage has been a true blessing. I've been wondering if facial massage would be good for her at this time. Since she started having TN a few years ago she has backed off from facial massage. But, I think it may help her at this time. Thank you for mentioning acupuncture, yoga & exercise as great helps. I will tell her about that. And, thank you for the website you shared with me. I pray your AD lessens more & more everyday. And, I believe the positive actions you have taken will accomplish much for you too. Thanks, again, for your help JDE!
JDE said:I have it from an mvd surgery. Was very painful for the first 6 mths after surgery and then the pain subsided a bit. Can go mths without the pain and then back again for a week. Mine is in the tongue area. Try to relax the nerves as much as possible. I do acupuncture, yoga (I find exercise helps a lot), and anything that takes the stress off the nerves. I have not tried this but you might want to...http://anadmiracle.blogspot.com.
Hi Liam,
Thanks for responding to my post. Yes, I am very concerned with the upcoming MVD second surgery. Currently I have had 5 sessions of acupunctures. I did not notice anything with the firs 4, but the day after the 5th session I began to notice my facial movements and muscle spasm in my face/lips are not as intense. I still experience the facial movements and sensation 24/7 but they are not as bad and they don't hurt like before. My acupuncturist said to go 2 to 3 times a week until things start to feel better. My next session is this coming Monday. I am hoping this will work so I don't have to do another MVD. BTW, acupuncture does not hurt at all. He puts about 10 needles into the right side of my face where the cheek and around the mouth area. This same acupuncturist treated me for my numbness. I had a total of 10 sessions for that. My face was still somewhat numb, but he told me that was enough acupuncture and I'll be fine. I just need to massage my face daily and the feelings should come back. He was right...it took a while but I now have 90% of my feelings back, except for my lips and teeth are still partially numb. This is the area (mouth area) that I have constant nerve movements right now.
This is a reply to all those who have undergone an invasive surgical procedure for TN. My heart goes out to all as I wouldn't be here if I could not identify with this horribly painful condition. MY HEART GOES OUT TO ALL......, and with that being said I have previously posted that unless it is a surgical intervention to save a life, surgery IS ALWAYS an insult to injury. I personally have not undergone any invasive procedures and I will not. There is one procedure that I would consider. It is a non-invasive laser procedure and you can call the number below to find out more.
1-888-■■■■■■■■.
I am so sorry for those who have suffered additional neurological damage in an effort to get relief from TN. I continue to exercise 6-7 days/week, I eat the recommended low fat/high fiber diet and my intake of Neurontin is no longer required on a daily basis. It takes hard work and perseverance. At the onset of my TN symptoms I could do nothing except grimace and grasp my face in pain while rocking back and foward awaiting another attack. In about 4 months I looked 4-5 months pregnant forced by the pain to become sedentary. I sought counseling, took my meds, increased my meds and slowly resumed my normal routine of exercising. Now only extreme stress, chewing foods of a certain texture, and cold air on my face will trigger the pain (most of these triggers I can avoid). I highly recommend a change in lifestyle, emotional counseling/support, and to avoid the knife whenever possible. GOOD LUCK!
My apologies. I just tried the number and it is not working. However you can look for the Med Laser Center located in Myrtle Beach South Carolina. I hope that helps.
Hi Nina,
Thanks for the info on acupuncture. I very nearly tried it last autumn after my 2011 glycerol/radiofrequency rhizotomy failed. Instead, I opted for Gamma Knife in February 2015. Following the GK, it took a couple months for the TN attacks and twinges to dwindle away, and I finally tapered off Carbamazepine completely about two weeks ago. I am not experiencing any lingering effects of the GK procedure, and have minimal, unnoticeable, facial numbness.
Some people I communicate with on another TN list have had good luck eliminating TN via Atlas Orthogonal Chiropractic methodology. I plan to see an Atlas-type chiropractor in our area for treatment in the near future in the hopes of preventing future episodes of TN.
Hi this is Jae. I want to retract information for the Laser Med Center in Myrtle Beach, South Carolina. There are many complaints posted about this Laser Treatment for TN. Seems they are predators, providing a bogus procedure for TN patients which they charge thousands of dollars for. Insurance does not pay for the procedure and there is no medical/billing code for it. I last spoke to these people in 2013 (When I was diagnosed). I only opt for non-invasive procedures and this one sounded very promising at the time. I tried calling the number after my previous post and no one answers, I then tried looking them up online and well, you will see for yourself. BUYER BEWARE. Again, my sincerest apologies for posting the phone number.
Thank you, Skgust, for sharing your experiences with TN procedures with me. And, I appreciate you telling me Mom's numbness will calm down. She's become very tired & wired emotionally because of the pins & needles sensations since they're very annoying. She finally started taking Lyrica a couple days ago, 75 mgs. mainly for the pins & needles sensations which have been worse than the numbness for her. She saw her neurosurgeon a couple days ago & he recommended Lyrica. He, also like you, said she doesn't have AD or she would have burning in the area (right side of her jaw). And, now with you telling me the same thing, I feel comfortable she doesn't have AD. Regarding her 1st procedure in 2013, she never experienced any numbness or tingling at all following the balloon procedure which seems strange to me now. But, 1 year later the pain came back so intensely she opted for a 2nd surgery. Like Mom, I'm sorry you had an extremely difficult time with numbness & tingling after balloon compression. I can't believe what I've seen my Mom go through with all this! I hope you've had a good emotional support system in addition to this online group. And, I'm glad your numbness has gone away to the point that it's not annoying anymore. That's amazing. Also, I appreciate you telling me the truth about the numbness with the possibility Mom's could be permanent. And, thank you, Skgust, for educating me & helping Mom to be emotionally prepared for the future. I hope all is well with you!
Skgust said:
I'm sorry your mom is dealing with this. I've had TN for 15 years. I had an unsuccessful MVD in 2005, then a Cyberknife radiation a few months later, no pain for 4 years, then after meds quick working had another Cyberknife in 2010. Last June it came back full force and I had a ballon compression in September. With all 3 procedures I have gotten more numb which is normal with all ablative (nerve damaging) procedures. For at least a month after the balloon compression the tingling and advanced numbness was extremely hard to deal with. But, it did get better slowly to the point I am still numb, but not annoyed. If it isn't numb, she would still have the pain.
So, I believe the numbness will calm down for your mom and do not believe she has Anastesia Dolarosa. If that were the case she would have a constant intense burning sensation. Not the tingling of numbness. Did she not have some numbness and tingling after her first procedure? Hopefully the nerve will calm down for her in the next few months, but she will most likely have the numbness forever. After 15 years of numbness for me, it's just the way it is. I've become very used to it.