Thank you, Tamtam, for sharing. Mom has found relief just lately amazingly. 2 days ago her neurosurgeon recommended she go on Lyrica so she did, 75 mgs. Mom wanted it mainly for the pins & needles sensations which were driving her crazy. The pins & needles sensations have already gone away after only 2 days on Lyrica but numbness is still there. I hope it keeps working. Thank you for explaining anesthesia dolorosa (AD) to me. Her neurosurgeon told her that AD is only "a burning" in the area. And, someone on this site also said AD is a burning & that's it. It sounds like you have that too, when you described you feel heat with pain. I'm sorry you have AD. Although, Mom doesn't have pain since her 2nd surgery, just numbness, pins & needles & other strange sensations, like the numbness moves around, going from one spot to another from day to day. Anyway, I do think she has AD. One definition of AD on the web said it could also be a "nagging feeling" in the area, not just pain with numbness. And, Mom definitely has the "nagging." Thank you for your good wishes for Mom & your suggestions. Keep feeling better too!
Tamtam said:
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.
Dear cfbigsalt, I can't believe what you've been through. I'm sorry. I had wondered while reading your other reply to my discussion about Lyrica if you did have any other procedure done. And, you said in this reply you had gamma knife radiation. I can't believe you had 2 different procedures done in the same year. You must have been really suffering for you to have to do that. Regarding AD, I believe Mom has it too. She doesn't believe she has it. She believes her neurosurgeon who said to her that AD is only a "burning" in the area. But, I've read online that AD is everything you've had & can even be "nagging" sensations in the area. If Mom believes she doesn't have it that's fine with me. Psychologically she's better off by thinking she doesn't have it I believe. She has enough on her plate anyway. Also, you've educated me by telling me that the gray matter in the brain is where the sensations you've had are stemming from. That's very interesting to me. It's also interesting that the gray matter can't be treated for pain. Thanks, again, for sharing your experiences with me. I'll relay everything to Mom. Blessings.
cfbigsalt said:
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.
Mappy, Thank you for sharing what happened to you in 2012 after gamma knife. I'm sorry the procedure left you with pain & numbness.This was your 2nd procedure. I wonder if that had something to do with why you were left with numbness & pain after 10 years of being pain free. Mom had her 2nd balloon compression procedure in January this year. This procedure left her with numbness on the right side of her face & tongue, like you, & pins & needles sensations. Mom had TN on the right side. She never had a problem after her 1st procedure in 2013, no numbness, pain or anything. Although, her pain came back severely after a year so she opted for a 2nd procedure. Mom has just started taking Lyrica & the pins & needles sensations are now gone after only being on Lyrica for 2 days! She still has numbness though. I guess after you've had 1 procedure, the area becomes more sensitive to anything done to it again. Mom used to take Neurontin before her 1st procedure but she stopped taking it since it didn't agree with her. She had also used Tegretol before her 1st procedure but hated it. She got off it as soon as she could. It had caused her sodium to drop to dangerously low levels, too, & she ended up in the hospital because of it. Mom had also experienced severe pain in her right temple like you before her 2nd procedure. So, Mappy, I hope you feel better & better & that the pain & numbness finally subsides. Or more hopefully, goes away completely! I read a post from someone on this site who said her anesthesia dolorosa finally subsided after 9 long years. Nothing's impossible! Thank you, again, for sharing your experience. Blessings.
Mappy said:
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?
gigi, Thank you for sharing your situation with me. I'm very sorry you were left with a lot of numbness after your procedure & that even your shocks are coming back. And, I can't believe you haven't gotten help from a pain Dr. by now. It sounds like maybe nothing has worked for you yet. I would imagine you have been trying various things, meds or maybe alternative treatments. I pray you get the relief you need very soon. Regarding Mom, I believe she has AD too. It's funny, some people say AD is one thing & some people say AD is something else. What I read online about AD is that it's "pain with numbness" & that it could be a "nagging" in the area too. Mom saw her neurosurgeon a few days ago & he said she didn't have AD because she didn't have a "burning" in the area that was operated on (right side). Mom believes him. But, I believe YOU. Mom just started taking Lyrica (75 mgs) & she said it's helping her. The pins & needles sensations have already gone away after only taking it 3 days! She still has numbness though. You said that AD is not common. Maybe that's 1 of the reasons it seems to be so misunderstood. Thank you again, gigi, for your help & for your good wishes for Mom. Prayers for you.
gigi said:
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.
Hi Nina. Wow, I can't believe what you've been through for almost a year! First of all, thank you for sharing your experience with TN & surgery with me & for helping me understand that Mom doesn't have AD. You made it clear to me that you don't think you have AD. So, since you don't think you have it, I suppose my Mom couldn't possibly have it. Mom doesn't even have pain since her 2nd surgery. Mom just started on Lyrica (75 mgs) & it's helping her--no more pins & needles sensations after only a few days on it! She still has a lot of numbness though. Regarding AD, I think it's a fairly misunderstood condition. I've read various definitions of it online & by people on this site. I'm going to put it behind me now & assume Mom doesn't have it. Like I said above, wow, you've been through it this last year. And, now your surgeon wants to do another MVD just to see what's causing all these crazy movements & pain? I pray you don't have to have it done. And, if you absolutely do, I pray you can wait & make sure that's the best move. Like you said, what if the shocks return or numbness from the surgery doesn't go away, or something else happens. I'm really happy you were able to get off all the medications & finally have a clear head after 8 years of being on them. That's a long time to be on them. And, to get off all of them only 2 weeks after surgery must have really felt amazing. You didn't say you had any withdrawals either, so I guess you didn't. I hope not. But, I can't believe what happened 4 months after surgery. The nerves may indeed be waking up like the surgeon said. I'm very sorry you have to deal with this & that you even have pain on top of all those strange movements. I wonder if there are any natural alternative therapies that could address what you're dealing with. Someone here told me he's using acupuncture & it's helping him. I hope you have the pain under control. I assume you do since you had to go to the ER because it was so bad. I'm really sorry. I hope you have family & friends who are emotionally supporting you in addition to this support group. You sound like a very strong, patient person. I really hope that if you have another surgery it corrects this problem; this horror! Maybe you could have a different type of procedure done instead of MVD. But, if the Teflon moved like the surgeon said, then maybe you might need another MVD. Nina, I pray everything gets better & better for you & very quickly too! And, thanks again for sharing your experiences. I appreciate it very much!
Nina said:
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 Liam, Thank you, again, for your help with Mom through your comments recently. I didn't know if you knew it, but 2 of your comments I recently saw were directed to Nina, not me, LB. I don't understand why, but perhaps Nina didn't get these 2 different comments sent by you on 5/23, one at 2:10 pm & the other at 6:30 pm. That's the main reason I'm getting back with you about it. Maybe you were just sending me a copy of your comments to Nina, but I don't know. I'm new to this site & don't understand that well yet how it all works. Regarding your experiences, I'm very sorry to have read you had gotten an infection from MVD. In contrast, I'm so glad you had good results from the Gamma Knife procedure. Keep feeling good!
Liam said:
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.
Hello again Nina! I just wanted to tell you that I received a comment from you recently that was addressed to Liam. I'm not sure if you were just sending me a copy of what you wrote to Liam or if it just came to me by mistake. I'm new to this site & don't know everything about how it works. I read the comment that was sent to me, but addressed to Liam, & was happy to read that acupuncture is helping so much & you might not need another MVD. I hope all continues to go well with you!
Nina said:
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.
Hi Janet! I really appreciate you telling me to go by my gut feelings re. Mom's situation. I think you hit the nail on the head re. doctors. Thank God you went to an internist after hearing 5 respected doctors tell you that you weren't taking a high enough dosage to cause the side effects you were having. That's listening to your gut! If you hadn't gotten off those medications you probably would have had a seizure by now. In 2013, before Mom's 1st surgery for TN, she was on Tegretol. It ended up causing her sodium levels to go down so low she had a seizure one night in a restaurant! We were all horrified & so worried about Mom. Emergency paramedics came to the restaurant & took her right to the hospital where she was for a couple days. I couldn't believe that had happened to her. She had been sitting next to me in the restaurant & suddenly her head started to fall to the left & she was garbling her words. Her eyes looked very strange, too, & I knew she was having some kind of seizure. I was the 1st one in our group (family) to notice her having it. I freaked out! Dad put ice on her neck & we waited as patiently as we could for emergency to arrive. Thankfully, Mom got through her ordeal & it hasn't happened again since. So, it turned out, since her sodium levels were so low, Tegretol was stopped immediately & she never went back on it. And, she was told to start drinking Gatorade since it helps with low sodium levels & electrolytes. She drinks Gatorade to this day (not every day though) & it helps her with energy too.
Wow, you really suffered with AD! I'm sorry it still comes back once in a while too. You're a strong, patient person to have gone without meds in the face of it. You're really in tune with yourself & what you need or don't need it seems. Thank you so much, Janet, for honoring my Mom with your kind words too. She has been taking Lyrica (75 mgs) for almost a week now & it's helping her a lot. No more pins & needles sensations amazingly. I didn't want her to have to take Lyrica, though, since she also takes Ativan at night to sleep & I thought the 2 would interact negatively. But, since it has started helping immediately, after only 2 days on it, I'm very thankful. She might not have to be on it very long either I'm hoping. Thank you again, Janet, for your thoughtful words & advice. Blessings to you!
Lynnie
JDE said:
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.
Thank you, Jae, for your awesome compassion & sage advice! Blessings always.
Jae said:
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.
1-888-597-1116.
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!
Thank you, Pamela, for responding to my discussion about Mom's facial sensations. I'm so sorry you have all that too. The sensations almost drove Mom crazy before she went on Lyrica. She just couldn't take it anymore. It's disgusting that TN not only causes severe physical pain but severe emotional pain--even after surgeries that are supposed to get rid of the pain! I'm very glad you have family support. Mom isn't willing to go through anymore procedures either. I wish she would join this group but she just can't do it, not yet anyway. She's says she's too busy. But, really, I think she just doesn't want to even think about TN as much as possible. Maybe in the future when everything has calmed down after a while she will join. In the meantime, I'm thankful it's here for me. I was getting way too stressed out over her condition. And, you all have been an amazing blessing to me! Thank you, Pamela, once again for your comments. I believe & pray, you are going to feel better & better every day! Blessings to your family & friends, too, for their continued strength & support!
Pamela Olson said:
I have all that too, I am not willing to go through anymore procedures so learning to cope is the best I can do along with family support.
Hi, I am a new member. I just joined a few days ago. I had 2 of my 3 nerves cut. It is called a ritzotomy. Your answer is NO. Anesthesia delorosa has a lot PAIN associated with it. Your mom just has the feeling of what happens when nerves are cut or crushed. Or.... it takes a real long time for nerves to regenerete after messing with them. I have the same thing going on with my right side that your mom has going on.
My last surgery was in 2012! IF the nerves were not cut....or destroyed somehow, she will get use to the phantom pain as they call it. I have pain some days such as AD, but most days my cheek is numb.. I hope that helped.
Hi Restless! First of all, welcome to the community! I know you will be thankful you joined. I have been very thankful for it since I joined early this year. Everyone has been so supportive! I've really needed it because of my Mom who had her 2nd surgery in January this year. Mom has suffered so much & it tore me up emotionally until I found, by chance, this site. Thank you for sharing your knowledge of TN with me. Yes, Mom's nerves crushed, the root of the branch. I'm so sorry you've had to suffer like her. Thank you for authoritatively explaining AD to me. I appreciate that. Now I know she doesn't have it. I still wasn't completely sure until you explained it. She still gets pins & needles sensations & has numbness too. But, she has found that Aspercreme with Lidocaine helps a lot so she doesn't notice the numbness & other sensations as much. There is a straight lidocaine cream on the market for prescription but she never got one. I'm not sure why. You must have had at least 2 surgeries like Mom has had. This time the doctor said it would be good for 7 years of no pain perhaps. So, we're hoping! Blessings to you as you go forward. I can tell you will be of great help to people here! I hope you receive the same back!
Restless said:
Hi, I am a new member. I just joined a few days ago. I had 2 of my 3 nerves cut. It is called a ritzotomy. Your answer is NO. Anesthesia delorosa has a lot PAIN associated with it. Your mom just has the feeling of what happens when nerves are cut or crushed. Or.... it takes a real long time for nerves to regenerete after messing with them. I have the same thing going on with my right side that your mom has going on.
My last surgery was in 2012! IF the nerves were not cut....or destroyed somehow, she will get use to the phantom pain as they call it. I have pain some days such as AD, but most days my cheek is numb.. I hope that helped.
Thank you, Stephanie, for your prayer! You're an angel! I'm sorry you're in a battle like Mom has been! But, I'm glad to read you are getting positive results in your struggle. I've never heard of dry needling. But, I'm going to look into it. You say you are getting great results with it. That's wonderful! Thank you for sharing your info with me. I'm going to share it with Mom after I learn a little bit more about it. Thanks again Stephanie! Many blessings to you!
Stephanie said:
I will pray for you both as I am in the battle too, but am getting great results with dry needling.
