I went to the ER on Sun 6/29th, for 3 days in pain while they figured out what to do. I was admitted the same day as I could not talk or eat. My best friend was my mouth for me. They gave me Morphine and Dauladid while in the Hospital, before they had finally increased my Dilantin, which helped and I was finally able to drink juices and broth and talk, but I still had pain shocks, Mine are in the 5th branch, so they were in the Mandibular? area. Please for give my typing today as, I am still pretty foggy and very tired. OK so The Neurosurgeon came in and examined me and said , yes you have TN, Really? Yup I knew that, LOL
He then said we can do Surgery, I said yes. On July 7th ( I was in the Hospital the whole time, )
I had my MVD. The first sensation after my waking was a really bad headache and feeling like a band around my forehead, sore thraot (from the tube) ALOT of soreness at the incision sight. Today is one week exactly. I am still a bit confused (probably the meds) Low grade headache, kinda dull. and very sensitive to loud sounds. My incision site still hurts, I still get tired easy and need to take breaks. I can't bend over yet too much pressure on my head, I get my stitches out on Wed.
I have had Zero pain from the TN (YAY!!!) I feel really slight numbness on my tongue and right side of my lower lip. I say slight because I can still feel, it just feels kinda weird. I will update as I can. I love this group as we all know our pain. I wish you all relief and peace!
Wow! so glad you got treatment so quickly, that is amazing and well done to those doctors and nurses who cared for you.
It is totally amazing how different doctors in different countries treat TN, I live in the UK and suffer Trigeminal Neuralgia type 2 and type 1 on all 3 nerve branches on both sides. I have visited my A&E (ER) & GP's surgery in unbelievable pain where I could not eat, drink or talk, I just get sent home with new pain drugs or increased drugs. I always end up at the dentist and have more extractions which has relieved the TN pain, its crazy I know!
I'm so glad you got the correct treatment and doing well.
This is start of week 4 in my recovery and I want to update on how it is going, especially to help those out that are going to be coming up on surgery and want to hear how other have done. I am still pretty sore where the incision is, last week they took the stitches out. My neck is still pretty stiff, but after reading this board. I have been making it a habit to slowly stretch my neck muscle gently by turning my head to the right left. Does anyone still feel tightness after MVD after a year?
I am still feeling quite fatigued and can now make dinner, as long as I have what I need and don't have to bend. I don't bend over. I was able to throw a light load into the wash and take it out of the dryer, fold and put it away. That is about it for me.
Oh I do have a feeling of light numbness on the right side of my tongue and face. I felt little tickles on my face and was scared, but no pain. I still plan on taking it easy, until I feel better. I have decided that I need to be very careful in recreational activities in the future. I would NOT want to do this again!
This is the beginning of week 5 of recovery. I am able to do all the normal chores around the house, dishes, laundry (light) cooking and cleaning. I still have a stiff neck, but over all much better. The headaches I was having are gone. I have just had my follow up with my surgeon and he wants me to continue with the Dilantin, So I will do that and taper off in the next few months. I wear glasses and I think that the frame pressing on my head has prevented the healing there, although I do take my glasses off as much as possible. I still feel very fatigued, don't know if that is age (LOL) or the fact that I had a major surgery a month and a week ago.I still can't really have my head bent over and If I have over done it...with chores or just being out. I MUST lay down. I still have the light numbness on the face and tongue, but the Dr. said most likely that will pass. Does any one have relief of this over 10 years? The Doctor said, If I take care of myself I shouldn't have to worry about this again. I hope that is true, but you never know.
I'm hitting 10 months at the end of this month since my MVD surgery. I am on no meds, have no pain and really if it weren't for the 5-inch under hair growing out a little awkwardly (the rest of my hair is really long), I wouldn't even know I had surgery. I have no incision pain, no numbness, no itchy feeling.
I would say that at the 5 week mark, you are through the worst of it as far as recovery goes. It took me about 8 weeks to feel like I was back in the swing of things. I didn't completely ween off my medicine until the 3 month mark so that was holding me down a bit as the meds always made me so tired.
Stretching your neck muscles is a great idea. I looked up some physical therapy exercises shortly after surgery and did those gently and religiously for weeks after surgery. It made a huge difference as I never really experienced much of any neck pain. I would walk slowly on a treadmill first to get warmed up a bit and spend more time stretching my neck and all muscles. I began taking spin classes 6 weeks after surgery and teaching them (that's my job) 8 weeks after. I did have to really ease into that but no problems at all.
I did carry my old meds with me when I went on a cruise this past Spring (just in case). I will likely do that for a Fall trip I'm taking. I can't wait until I get to the point that I don't even think to do that anymore.
Best wishes for a speedy recovery and please keep us posted.
Minny..I am the one who has been blessed to be pain free for 31 years now. Woke up from surgery with the stabbling electric jolts gone and havent had once since. I still do have some numbness which will come and go. Primarily in my lower jaw, cheek and side of tongue. No big deal just a reminder of what living with TN was like. I am now 64 yrs old and I thank God and my doctor every day for giving me my life back. Praying for you that you never feel that pain again...ED
Ms.Minny said:
This is the beginning of week 5 of recovery. I am able to do all the normal chores around the house, dishes, laundry (light) cooking and cleaning. I still have a stiff neck, but over all much better. The headaches I was having are gone. I have just had my follow up with my surgeon and he wants me to continue with the Dilantin, So I will do that and taper off in the next few months. I wear glasses and I think that the frame pressing on my head has prevented the healing there, although I do take my glasses off as much as possible. I still feel very fatigued, don't know if that is age (LOL) or the fact that I had a major surgery a month and a week ago.I still can't really have my head bent over and If I have over done it...with chores or just being out. I MUST lay down. I still have the light numbness on the face and tongue, but the Dr. said most likely that will pass. Does any one have relief of this over 10 years? The Doctor said, If I take care of myself I shouldn't have to worry about this again. I hope that is true, but you never know.
It has now been 12 weeks today, since I had my surgery. I am pretty much back to normal. I am doing all the things, I used to do before I had to worry about my TN pain. I was a little worried one day, when it was windy. I thought oh no, am I going to be ok? I was fine. I sometimes get a light crawly sensation on my right upper lip, but no pain whatsoever, since the surgery. I guess I am a little nervous about winter, That is when I used to have my worse pain. Maybe, I will eventually get over that feeling of, what if. My tongue numbness is gone; my neck is no longer stiff. The only thing that does happen is that when I have done too much, my scar from the incision feels inflamed and hurts a little, not much but a fatigued feeling. I noticed I am still clenching my jaw while I sleep. I need to use my mouth guard..,Oh the biggest thing is that I am off of all my meds woohoo! I just don't know how people do this more than once!
I am so excited to read about your success story....i wish you many years of being pain free!! Maybe you can be one of the ones, like K C Dancer that stays on here even though she's doing great, to help support all of us who continue to suffer from this nasty disease. I know there are many of us that would appreciate it.
I definitely plan to continue here, reading and giving my input as well. It has not been very long for me to be pain free. I remember the first day after surgery, when I brushed my teeth with no pain, I cried. This time not about the pain, but the gratitude of no pain. I feel everyone's sadness, fear and frustration over this disease. If I can answer any questions or be of help I would be happy to do so. I had coffee regular coffee for the first time today and have been very productive, but don't want to go back to drinking caffeine, so I am going to limit my coffee, as that is the only caffeinated thing I consume.
Jodi said:
Ms. Minnie,
I am so excited to read about your success story....i wish you many years of being pain free!! Maybe you can be one of the ones, like K C Dancer that stays on here even though she's doing great, to help support all of us who continue to suffer from this nasty disease. I know there are many of us that would appreciate it.
I am so sorry I did not reply to you! Your are certainly blessed and I hope that will be my story as well. I will be 52 this year, so if this last me awhile I will be very pleased. I fell down on my knees the other day and hubby was so scared for me. He kept asking if I hit my head? I did not. I have bumped it on the refrigerated door, but nothing major. Thank you for sharing your story!
Ed said:
Minny..I am the one who has been blessed to be pain free for 31 years now. Woke up from surgery with the stabbling electric jolts gone and havent had once since. I still do have some numbness which will come and go. Primarily in my lower jaw, cheek and side of tongue. No big deal just a reminder of what living with TN was like. I am now 64 yrs old and I thank God and my doctor every day for giving me my life back. Praying for you that you never feel that pain again...ED
Ms.Minny said:
This is the beginning of week 5 of recovery. I am able to do all the normal chores around the house, dishes, laundry (light) cooking and cleaning. I still have a stiff neck, but over all much better. The headaches I was having are gone. I have just had my follow up with my surgeon and he wants me to continue with the Dilantin, So I will do that and taper off in the next few months. I wear glasses and I think that the frame pressing on my head has prevented the healing there, although I do take my glasses off as much as possible. I still feel very fatigued, don't know if that is age (LOL) or the fact that I had a major surgery a month and a week ago.I still can't really have my head bent over and If I have over done it...with chores or just being out. I MUST lay down. I still have the light numbness on the face and tongue, but the Dr. said most likely that will pass. Does any one have relief of this over 10 years? The Doctor said, If I take care of myself I shouldn't have to worry about this again. I hope that is true, but you never know.
Tomorrow will be nine months since my surgery and I feel pretty good. No Pain. I figured out that I have normal energy ... for my age, lol. I am not meds as of months ago and am so happy to be able to remember things again. My face gets occasionally crawly feelings, but no pain, however for some reason I still get this tenderness feeling on my scalp and what I call pin pricks feelings. Once in awhile I'll get this little jab feeling on my scalp but only last a second and I get that just occasionally. This week in CA we have had cool, damp weather and that used to be the worst for me, now I just feel scalp tenderness. Nothing major. I month ago I went out and it was windy, I still gt nervous, but then remember that I'm ok. I still use a scarf in the wind...just in case. I guess it is just too soon for me to be totally comfortable with the fact that I don't get pain anymore. I am even planning to go to the dentist again. (not the dentist that did the root canal that started this whole thing with me) I will keep you all updated as time goes on. I pray that those of you that deal with this will get relief.
Thanks for keeping us updated, Minny! I'm at just about the 18 month mark since my successful MVD surgery and still no pain. I'm finally at the point where I don't really think about it much at all and it no longer scares me that it might jump back at any moment. I do have "sensations" on my face right were my main trigger areas were from time to time. They last just a few seconds and do not even register on a pain scale at all. I sometimes have one or two every other day or so and then might go weeks. I talked to some a few others who had had MVDs many years ago and they all said that they had small sensations that really amounted to nothing from time to time too so I'm not worried about those anymore. That might be what you are experiencing too. I take it as a reminder of what I fought to overcome and a reminder to always be grateful for where I am now. Please keep posting on here. I am committed to do that as the success stories really helped me out when I was in pain and trying to make big decisions.