Good luck to you and your surgery! Keep us posted! It seems like everyone here has had Typical TN turn into Atypical. Mine is the complete opposite that is why I am not sure abou an MVD procedure. My case seems to be very unique. Surgery seems so scary but I also don’t want to live in constant pain for the rest of my life. I will keep you in my thoughts Bonnie! Good Luck!
Lori
Liz K. said:
Bonnie, I will keep you in my prayers. I hope the surgery goes well but most importantly I hope you wake free of the TN pain. I also had typical but about 4 mths before MVD , I developed atypical. A lot of my pain now is atypical. But most of it is controllable with meds. My surgery was not typical. I was out of the hospital in 48 hours and I didn’t suffer any surgery pain. I didn’t have any nausea. I did have a dull headache for a few weeks but it didn’t compare to my migraines. I had my surgery on Monday and I went to a bunch of garage sales on Saturday after a 2 hr drive home late on Friday night (I didn’t drive). My mother loves garage sales so I wanted to take her. But when I got home on Saturday, I thought I might die. I was so exhausted. I had the shakes. We did not go to any other garage sales for 4 weeks. I was really tired for months. I went back to work part-time the 4th week. Liz
Bonnie Gray said:
Hi Lori, I have had TN pain for the past 2.5 years. I definitely started off with classic TN but over time I think it has changed to atypical, which I have read is normal. I had 2 MRIs. The first one was normal, and I have no idea what the second one showed as I never heard back from that neurosurgeon’s office. I am having a MVD with another neurosurgeon in Winnipeg in a few days (June 1st). Although, I am scared I am also looking forward to being pain free and getting off the medications. I am currently taking 1,600 - 1,800 mg. of Tegretol a day. I want my life, and my brain back.
I will be out of commission for a while, but will let everyone know how it went as soon as I feel up to it. I would love to hear from anyone else who had a MVD. I would like to know how long their recovery time was and how they felt the first few days following the surgery.
What did you find out? I have the same problem. They are classifying it as either atypical facial pain or atypical trigeminal neuralgia. I do get pain relief from gabapentin, but not enough relief. I am also wondering if I would be a candidate for the surgery. My pain is bilateral and constant. The only time it is better is when I am asleep but as soon as I get up and going for the day it escalates. Let me know if you got any good advice!
Hi Katie,
The neurosurgeon said at this time he would not do surgery because I do not have classical symptoms of TN and the risks far outweigh the benefits. Unfortunately for people like us who have non classical symptoms the success rates of these procedures go down and it is much harder to treat! Lucky us! Right now I am waiting for my insurance company to approve an MRI. He wants me to get a new one done because the last one I had was done in 2006. He is also sending me to his neurologist for treatment with meds. He said basically once I have exhausted all other non surgical treatments (meds no longer working) then we could go to the next step at that time. I truly am hoping that MRI shows something! I just want a reason for this pain. How would you describe your pain Katie? I am curious because what you said below is exactly the same for me. I do not have any pain when I sleep and the pain gets progressively worse as the day goes on. I have also tried neurontin and it helped a little bit but not enough. Just like you! My pain is only on my right side and I would describe it as a constant, deep ache, burning, cramping, heavy and it is in my teeth, gums, face and can radiate to the back of my head and neck. I have had it for almost 6 years now. The pain I have been getting in my head and neck are new. I never used to get that. It is like it is spreading over a larger part of my head now. Do you take anything else besides Neurontin? Right now I am on Effexor, Elavil, and clonazepam and it is not working to control my pain. My husband and I also want to have another baby so I don’t know what I am going to do at this time. I probably am going to have to come off some of the meds and only take the ones that are safer during pregnancy. My advice to you is to get a good neurologist that understands this type of pain. I have run the gamut of doctors over the past 5 years and it has been difficult to find the right one. I think I may have finally found someone. Also, I have a tens unit that I got through my PCP and was able to have it approved through my insurance company. It really does help when the pain is really bad. I also chew alot of gum because for some reason that seems to help a little. I hope you are having a pain free day! Nice to meet you and sorry that you have to endure this pain as well!
Katie said:
What did you find out? I have the same problem. They are classifying it as either atypical facial pain or atypical trigeminal neuralgia. I do get pain relief from gabapentin, but not enough relief. I am also wondering if I would be a candidate for the surgery. My pain is bilateral and constant. The only time it is better is when I am asleep but as soon as I get up and going for the day it escalates. Let me know if you got any good advice!
Lori, thanks for what you said…I had a feeling that surgery was not going to be an option for me yet. I am currently pregnant. So I can tell you for the first 12 weeks they would not let me be on any meds…but I think that depends on your doctor and how well they understand your pain. I was working with 3 nuerologists and all 3 told me they wouldn’t work with me while I was pregnant (must be a liability thing) so I felt so so very lost and didn’t know what to do. I could take pain killers the first 12 weeks, but they barely put a dent in the pain. After 12 weeks, my gyno let me get on anticonvulsants and we started with topamax. That totally helped the pain but turned me into a vegetable, I couldn’t think, function, memory loss…it was terrible. So then I was put on gabapentin and he will only allow me to go to 1200 mg while I am pregnant, but afterwards I am sure I can go up on that. No nursing tho if you are on that. I am also taking 4 to 5 hydrocodone and valium a day. That takes the edge off. I have also just started getting headaches that feel much like the pressure and pain I feel in my face. They are not migrane…i think they are vascular, because they are usually brought on by physical activity. I started getting acupuncture and that is seeming to help the headaches…coincidence? I don’t know…but I’m so scared of getting them back that I do the acupuncture every week. The acupuncture has not helped my facial pain tho. And if I ever skip a pill, the pain always comes back in a hurry. The weird thing about me is that it is on both sides of my face with the same intensity and it is burning, aching, feels like my facial bones have been crushed or broken and pressure. So alot like your pain. I am looking for a good nuerologist, so I am open to suggestions. I am from ND so I will probably have to travel to find one, but I am having a very hard time finding anyone around here that knows much about this problem. I hope you get some relief and my suggestion is talk to your gyno before getting pregnant to discuss your options. This pregnancy was not planned for me so it really threw me for a loop medically. Thanks for the response!
Lori Branco said:
Hi Katie, The neurosurgeon said at this time he would not do surgery because I do not have classical symptoms of TN and the risks far outweigh the benefits. Unfortunately for people like us who have non classical symptoms the success rates of these procedures go down and it is much harder to treat! Lucky us! Right now I am waiting for my insurance company to approve an MRI. He wants me to get a new one done because the last one I had was done in 2006. He is also sending me to his neurologist for treatment with meds. He said basically once I have exhausted all other non surgical treatments (meds no longer working) then we could go to the next step at that time. I truly am hoping that MRI shows something! I just want a reason for this pain. How would you describe your pain Katie? I am curious because what you said below is exactly the same for me. I do not have any pain when I sleep and the pain gets progressively worse as the day goes on. I have also tried neurontin and it helped a little bit but not enough. Just like you! My pain is only on my right side and I would describe it as a constant, deep ache, burning, cramping, heavy and it is in my teeth, gums, face and can radiate to the back of my head and neck. I have had it for almost 6 years now. The pain I have been getting in my head and neck are new. I never used to get that. It is like it is spreading over a larger part of my head now. Do you take anything else besides Neurontin? Right now I am on Effexor, Elavil, and clonazepam and it is not working to control my pain. My husband and I also want to have another baby so I don’t know what I am going to do at this time. I probably am going to have to come off some of the meds and only take the ones that are safer during pregnancy. My advice to you is to get a good neurologist that understands this type of pain. I have run the gamut of doctors over the past 5 years and it has been difficult to find the right one. I think I may have finally found someone. Also, I have a tens unit that I got through my PCP and was able to have it approved through my insurance company. It really does help when the pain is really bad. I also chew alot of gum because for some reason that seems to help a little. I hope you are having a pain free day! Nice to meet you and sorry that you have to endure this pain as well!
Katie said:
What did you find out? I have the same problem. They are classifying it as either atypical facial pain or atypical trigeminal neuralgia. I do get pain relief from gabapentin, but not enough relief. I am also wondering if I would be a candidate for the surgery. My pain is bilateral and constant. The only time it is better is when I am asleep but as soon as I get up and going for the day it escalates. Let me know if you got any good advice!
Right now I am waiting for my insurance company to approve an MRI. He wants me to get a new one done because the last one I had was done in 2006. He is also sending me to his neurologist for treatment with meds. He said basically once I have exhausted all other non surgical treatments (meds no longer working) then we could go to the next step at that time. I truly am hoping that MRI shows something! I just want a reason for this pain. How would you describe your pain Katie? I am curious because what you said below is exactly the same for me. I do not have any pain when I sleep and the pain gets progressively worse as the day goes on. I have also tried neurontin and it helped a little bit but not enough. Just like you! My pain is only on my right side and I would describe it as a constant, deep ache, burning, cramping, heavy and it is in my teeth, gums, face and can radiate to the back of my head and neck. I have had it for almost 6 years now. The pain I have been getting in my head and neck are new. I never used to get that. It is like it is spreading over a larger part of my head now. Do you take anything else besides Neurontin? Right now I am on Effexor, Elavil, and clonazepam and it is not working to control my pain. My husband and I also want to have another baby so I don’t know what I am going to do at this time. I probably am going to have to come off some of the meds and only take the ones that are safer during pregnancy. My advice to you is to get a good neurologist that understands this type of pain. I have run the gamut of doctors over the past 5 years and it has been difficult to find the right one. I think I may have finally found someone. Also, I have a tens unit that I got through my PCP and was able to have it approved through my insurance company. It really does help when the pain is really bad. I also chew alot of gum because for some reason that seems to help a little. I hope you are having a pain free day! Nice to meet you and sorry that you have to endure this pain as well!