Two years pain free! I occasionally come to this site and read posts. I do this to remind myself and to offer comment if possible. I also know, when I was looking for info about MVD,( what to expect, what might happen, side effects,) I would read every thing I could find posted by someone post surgical.
Do not be afraid of MVD. Yes it looks and sounds scary but really, isn't TN scarier? After I had MVD, I was off meds totally within four months. I just recently got rid of all the pains meds I had held on to for fear the pain would return. I still have tingling numbness from my eye to my chin, from my nose to my ear. If I touch the top of my head, I feel it by my ear but not where I touched. It takes some getting used to. Again, better than the pain. I have a constant ringing in my ear.
Now let me tell you what I don't have...PAIN! I can walk outside when its breezy. I can drink and eat anything. I can talk without fear of pain. I can kiss my husband. I laugh often. I wake up every day grateful I did the surgery. My husband reminds me, when I woke from surgery (which I do not remember) According to him I kept saying, "It better be worth it." It is.
Doctors are perfecting this surgery more and more. I was lucky my surgeon found 3 compressions as well as tumors. He told me at my post op appointment, he was so happy to find something because that was not always the case. Unfortunately they have to go into your skull to find out.
If MVD is an option for you, DO IT! Do not wait. The pain we, who have had TN, live with is debilitating and robs us of otherwise healthy lives. Why would you hesitate?
I pop in occasionally to check in. If you have any questions, please e-mail me here.
Thanks for the positive note. I am almost 5 months post op and remain pain free but as you did, I hang onto my meds "just in case". My surgeon performs an average of 2 MVD's each week. To me, that means there are a lot of people who have this surgery and we never hear from them. So when someone like you comes back to tell us how well you are then we are reassured that just maybe we will be fine too.
Wow - glad you popped back in..... yes MVD does seem like a crazy proposition - but you are right - better than every day TN - every day TN -- that is what is crazy! I would do it all over again if I have to.
Some don't have the option, insurance, location, type of facial pain... but the stats on success rates are climbing for MVD.
Thank you Bobbie! I am 5 weeks post mvd today and weaning off my meds very slowly. I have had no pain just ringing in ear and some slight vision problem but will wait a week or two before I get new glasses. MVD a success! Thank the Lord!
I hope you post your progress as well. The more we share the better info can be collected. The more sucess stories we post about MVD, the more insurance companies will allow.
Thanks for sharing and congrats on 5 months.
MimiK said:
Hi Bobbie,
Thanks for the positive note. I am almost 5 months post op and remain pain free but as you did, I hang onto my meds "just in case". My surgeon performs an average of 2 MVD's each week. To me, that means there are a lot of people who have this surgery and we never hear from them. So when someone like you comes back to tell us how well you are then we are reassured that just maybe we will be fine too.
I am glad you finally got your MVD done. We came to this page around the same time. Keep posting your progress. Those who are still suffering need to know there is hope.
Hugs.
Kc Dancer Kc said:
Wow - glad you popped back in..... yes MVD does seem like a crazy proposition - but you are right - better than every day TN - every day TN -- that is what is crazy! I would do it all over again if I have to.
Some don't have the option, insurance, location, type of facial pain... but the stats on success rates are climbing for MVD.
Take it slow. I took lots of time to allow myself to heal and recover. It took a year before my hair was normal. My vision did change...my lower lid is numb and my top lid is normal. LOL It takes a while to get used to it. Keep posting your progress. We need to share and encourage those still suffering.
Hugs to you. One foot in front of the other.
kimburlee said:
Thank you Bobbie! I am 5 weeks post mvd today and weaning off my meds very slowly. I have had no pain just ringing in ear and some slight vision problem but will wait a week or two before I get new glasses. MVD a success! Thank the Lord!
Thanks for sharing your update Bobbie! : )
Fantastic news, I’m super happy for you. I appreciate that you still visit and post when you can.
I’m 4 weeks post-mvd, and doing well.
One day at a time!
(( hugs )) Mimi
Thanks so much for sharing your ingoing journey. I really appreciate hearing these “stories”. Knowing there is a potentially pain-free life after an MVD is what keeps me motivated to have the surgery. I wish you a life time of joy and health.
Thanks for the info Bobbie…its been 13 mounths post surgery feel ok but stress makes me feel some discomfort but no pain like before. I tke clonazepan to keep me calm…my mom past away on April after a battle with a massive stroke she also suffered TN for manyyy years so my stress levels sky rocketed…Im better but had rough days…do u feel pain or dissconfort when ur stress ???
Jumping in here to say sorry for your loss Delia.... TN is flared by stress and stress is flared by TN.... I know I feel it even though MVD took 98% of my discomfort away... They are really looking to find why some people in families get TN and why some don't -- I hope this hell ends for many within the next decade or so -- TN has been around for centruries!
Delia Osuna-Orozco said:
Thanks for the info Bobbie...its been 13 mounths post surgery feel ok but stress makes me feel some discomfort but no pain like before. I tke clonazepan to keep me calm..my mom past away on April after a battle with a massive stroke she also suffered TN for manyyy years so my stress levels sky rocketed...Im better but had rough days...do u feel pain or dissconfort when ur stress ???
Don't rush to get off meds. Slow and easy, Keep us posted on your progress. Hugs.
Mimi said:
Thanks for sharing your update Bobbie! : ) Fantastic news, I'm super happy for you. I appreciate that you still visit and post when you can. I'm 4 weeks post-mvd, and doing well. One day at a time! (( hugs )) Mimi
I hope you find pain free soon. It has changed my life in so many ways. I hope you will have the same.
Patty said:
Thanks so much for sharing your ingoing journey. I really appreciate hearing these "stories". Knowing there is a potentially pain-free life after an MVD is what keeps me motivated to have the surgery. I wish you a life time of joy and health.
When I am stressed, my jaw pops but no pain. I have found when my jaw pops its because my C1 is out. I try to keep my life as stress free and calm. Peace and serenity is what I live now. I hope you find peace soon. Hugs
Delia Osuna-Orozco said:
Thanks for the info Bobbie...its been 13 mounths post surgery feel ok but stress makes me feel some discomfort but no pain like before. I tke clonazepan to keep me calm..my mom past away on April after a battle with a massive stroke she also suffered TN for manyyy years so my stress levels sky rocketed...Im better but had rough days...do u feel pain or dissconfort when ur stress ???
I’m new to to site as of February this year and am so grateful for every bit of shared information, no matter it’s of ongoing problems and complications, or success stories. Thank you for coming back to tell us about your post- MVD life. I’m hoping MVD is in my future too. Your story helps me with my decision making.
Blessings to you!
Bellalarke
I hope you find a pain free life soon. You will find lots of support here. We are all in verious stages of TN. If you have a question, do not be afraid to ask.
Big hugs!
Bellalarke said:
Hi Bobbie
I'm new to to site as of February this year and am so grateful for every bit of shared information, no matter it's of ongoing problems and complications, or success stories. Thank you for coming back to tell us about your post- MVD life. I'm hoping MVD is in my future too. Your story helps me with my decision making. Blessings to you! Bellalarke