My case is complicated. I was told by Dr Mark Linskey that it was complicated and my odds for success from an MVD low: 50% no change 25% some improvement. 25% getting worse. I chose to take the chance. Linskey also sent me to Dr Ken Casey (retired) to get a 2nd opinion. Casey agreed. The MVD took the forest fire off my face but left everything else. Still, that made a huge difference.
We next tried Gamma Knife radiation treatment. No help, and I developed Anesthesia Dolorosa after.
Linskey then sent me to Dr Jeffrey Brown (retired) for a peripheral nerve stimulator. While I wasn't pain-free after and still need meds, it worked pretty well. Until recently. I've been sleeping a lot to hide from the pain.
My husband took me back to see Linskey, hoping there was something else to try. He really didn't, but thinks a deep brain or cervical spine stimulator will help, so I was referred to Dr Michelle Paff who is also at UC Irvine Medical Center in Orange CA. We decided to try the less invasive cervical spine stimulator, scheduled for August.
It's been 11 years since my chin started to hurt, developing into this monster.
In 2004 my chin also started to hurt, quickly moving to my cheek and forehead with uncontrollable pain and burning. Fast forward to 2015 I also underwent MVD surgery with Dr. Linskey. Like you, my prognosis for improvement was slim. At that time I had been suffering from TN for 11 years and had consulted over 50 different doctors and specialists, tried numerous medical treatments and over 20 different medications, all to no avail. Knowing Dr. Linskey's stellar reputation as one of the top five neurosurgeons in the US performing MVDs, I was confident in my decision to move forward —what did I have to lose? If not now, when? The timing was right as my insurance covered the surgery and my parents were able to care for me during and after surgery. The surgery resulted in about a 10% improvement. Thanks to Dr. Linskey's expertise, I came out of the operation no worse than before and no side effects. I wouldn't have trusted just anyone to operate on my brain, but knowing his reputation made the decision easy, despite the risks involved.
I just had MVD surgery 2 weeks ago.
I woke up from surgery with zero trigeminal pain and have not had a single attack since.
That being said, it is hard recovery for this surgery (at least for me, everyone is different, and I have multiple other medical problems) but so far 100 percent worth it. I was on liquid diet when I had surgery, I couldn’t chew at all. I ate pizza for dinner tonight.
Congratulations!!! So happy for your recovery!!! I've joined this sub today since I've been diagnosed by one doctor but want more opinions just to clear out any other possible diagnosis. I've seen ENT and dentists (root of the problem I believe) and diagnosis was tmj. But this diagnosis feels like this might be it...this might be the one...
You give me hope!!! 🫂 I am so happy for you! And you are eating pizza which is the best!!! ❤️
I have bilateral TN and had successful surgeries on both sides. Even on 2700MG of Gabapentin, I had no quality of life and chose the surgical route because I was pretty much backed into a corner by pain wise. I had an MVD on one side and a rhizotomy on the other because that nerve couldn’t be saved. I have been without pain since 2020! It *is* possible to find relief through surgery. You just read about the non-successful more than those of us with good results. The key is finding a skilled and successful surgeon who does it all the time. Let me know if you have any questions!
You are so welcome. I’ll never forget the struggle of my fellow TN friends. We are all in this together!! If my experiences can comfort or help or encourage someone else then I am all for that!
Thank you! I absolutely hate this feeling but also I am happy to have found a diagnostic. I've been struggling for a year and a half with no answer from any specialists.
It took over a decade for me to be accurately diagnosed. 🙄 The pain started in my sinuses and was super episodic and random, which really threw all the Doctors I was seeing at the time. It should never take a year or longer to diagnose someone!!! Especially with the amount of pain we’re in. Goodness.
A decade! Strength to you. You one of the toughest warriors! I can't imagine. Most people couldn't begin to understand you. 🫂
Yes, I can understand your initial diagnostic because I thought it was a bad case of allergies and sinus pressure myself. And so did my ex Dr at the time.
Are ENT capable of diagnosing TN?
>Especially with the amount of pain we’re in.
I'm saying! Like, this pain has been so intense I look like I've gone mad.
About 4 years ago, my ENT referred me to a Neurologist for my facial pain and I was SO MAD. He said I did need deviated septum surgery but that it wouldn’t cause the agonizing pain I was in and he recommended waiting on the deviation repair until I knew what the pain was from. I was so convinced I needed sinus surgery and felt like he was just passing me off to another Doctor because he didn’t know what to do.
But that Neurologist he referred me to is the one who *finally* diagnosed me with TN!!! So I don’t know, I think most ENT’s will pass it along to a Neurologist. I’m so glad mine did!
Blessed are you 🤲 Neurologist has you on a cocktail? You don't have to be specific of meds. I'm glad you have found success ☺️
Yes, my ENT initial diagnostic was TMJ. Try a mouth guard, see you in a month if pain persists, we will do studies of middle ear? I can't recall, I have it written in paperwork back home. Maybe I will pay a visit and see if they listen this second round. Did a hearing test and that came out fantastic. So that's good news! 😄
I'm glad I have this group. Knowledge is absolutely key. I had suspected what I had was TN prior to my diagnosis. Reading everyone's stories and experiences has helped me process all of this.
I'd been looking everywhere. I talk about it on other apps and no response. Nobody gets it. I was so happy when I found everyone who gets it on Reddit.
Honestly! Being recently diagnosed, I've feel so alone for a long time with this pain. I found comfort in the tmj sub but it never felt completely right...
Reading everyone's experiences and seeing others that have found success and still come back to support us who are beginning this journey makes this less stressful for me and I'm sure for others as well...
These tears I'm crying for once are not from the pain but from happiness of finding people who care 💕 💞 ♥️ 💜
As far as surgeries, it can be a bow fuse option for some, and my understanding the faster cause can be isolated, better chance for surgery. The risk factors for me has made me balk at surgery, but there are many possible sources (placements), so different risk factors involved for every case. I would say it wouldn’t hurt to list to the surgeon, unless maybe you’ve been down this route already. I was diagnosed in 2001, I’ve come a long way for sure. I’m working again, mind you at a lesser position/pay, but if I need to duck out, I can. I’ve adjusted to my new reality, hope things work out on your side.
I've only been at this battle for about 5 years, but I'm having to keep fighting for the right to work from home after having done so for a few years already. I take a lower dose during the day just so I can get through work, so still have severe pain when it gets stressful. My manager is crazy and relentless. She's not going to win this fight because I never just allow people to treat me like this, but it shouldn't be such a fight, and she's literally making me sick, causing me pain.
Despite taking a lower dose, the medication has slowed me down physically, and made it impossible to do a lot of things I used to enjoy. I would love to get that part of me back.
Stress is a big trigger for me. I couldn't keep working because of it. I am so thankful that my company offered long-term disability insurance, and I took it! I was able to stay home and have nearly as much money coming in. I'm not sure if you are there yet, but I would definitely look into the insurance for when the time comes.
Good luck with the nightmare boss . It's probably hard for her to understand how this works, and she might be a skeptic when it comes to accommodations. So many people lack the empathy to consider that another's needs may be reasonable given the circumstances.
I have been diagnosed for approx 4 months now, I have had 5 different medication changes and I am barely functioning. I go see a neurosurgeon in 3 weeks and I already know I will be begging for surgery. Just had another MRI on Monday and waiting for the results. I just want this to be fixed, I had such a beautiful and full life before this and now I am a shell of who she was. I just want my life back
I’m hoping I can manage without surgery, and so far I am, but I still have appointments periodically with my neurosurgeon. She said that if things take a turn I can get right in. It’s comforting to know that this is in place.
Manifest56, I'm taking your username as a sign. We are manifesting options. We are manifesting balance. We are manifesting peace of mind. We are manifesting hope. And we are manifesting freedom from this pain 🤲
You give me a lot of hope and a lot of comfort in this journey. 💓 God bless!
My case is complicated. I was told by Dr Mark Linskey that it was complicated and my odds for success from an MVD low: 50% no change 25% some improvement. 25% getting worse. I chose to take the chance. Linskey also sent me to Dr Ken Casey (retired) to get a 2nd opinion. Casey agreed. The MVD took the forest fire off my face but left everything else. Still, that made a huge difference. We next tried Gamma Knife radiation treatment. No help, and I developed Anesthesia Dolorosa after. Linskey then sent me to Dr Jeffrey Brown (retired) for a peripheral nerve stimulator. While I wasn't pain-free after and still need meds, it worked pretty well. Until recently. I've been sleeping a lot to hide from the pain. My husband took me back to see Linskey, hoping there was something else to try. He really didn't, but thinks a deep brain or cervical spine stimulator will help, so I was referred to Dr Michelle Paff who is also at UC Irvine Medical Center in Orange CA. We decided to try the less invasive cervical spine stimulator, scheduled for August. It's been 11 years since my chin started to hurt, developing into this monster.
Good luck with everything!
In 2004 my chin also started to hurt, quickly moving to my cheek and forehead with uncontrollable pain and burning. Fast forward to 2015 I also underwent MVD surgery with Dr. Linskey. Like you, my prognosis for improvement was slim. At that time I had been suffering from TN for 11 years and had consulted over 50 different doctors and specialists, tried numerous medical treatments and over 20 different medications, all to no avail. Knowing Dr. Linskey's stellar reputation as one of the top five neurosurgeons in the US performing MVDs, I was confident in my decision to move forward —what did I have to lose? If not now, when? The timing was right as my insurance covered the surgery and my parents were able to care for me during and after surgery. The surgery resulted in about a 10% improvement. Thanks to Dr. Linskey's expertise, I came out of the operation no worse than before and no side effects. I wouldn't have trusted just anyone to operate on my brain, but knowing his reputation made the decision easy, despite the risks involved.
My pain started in my chin also. Like the muscle was cramping.
I just had MVD surgery 2 weeks ago. I woke up from surgery with zero trigeminal pain and have not had a single attack since. That being said, it is hard recovery for this surgery (at least for me, everyone is different, and I have multiple other medical problems) but so far 100 percent worth it. I was on liquid diet when I had surgery, I couldn’t chew at all. I ate pizza for dinner tonight.
Congratulations!!! So happy for your recovery!!! I've joined this sub today since I've been diagnosed by one doctor but want more opinions just to clear out any other possible diagnosis. I've seen ENT and dentists (root of the problem I believe) and diagnosis was tmj. But this diagnosis feels like this might be it...this might be the one... You give me hope!!! 🫂 I am so happy for you! And you are eating pizza which is the best!!! ❤️
I have bilateral TN and had successful surgeries on both sides. Even on 2700MG of Gabapentin, I had no quality of life and chose the surgical route because I was pretty much backed into a corner by pain wise. I had an MVD on one side and a rhizotomy on the other because that nerve couldn’t be saved. I have been without pain since 2020! It *is* possible to find relief through surgery. You just read about the non-successful more than those of us with good results. The key is finding a skilled and successful surgeon who does it all the time. Let me know if you have any questions!
Very good to know! And thanks for not forgetting about the rest of us :)
You are so welcome. I’ll never forget the struggle of my fellow TN friends. We are all in this together!! If my experiences can comfort or help or encourage someone else then I am all for that!
🫂 holding on for dear life!!! Your support has me in tears!
I am so sorry, my friend. I hate that we have to deal with this!!!
Thank you! I absolutely hate this feeling but also I am happy to have found a diagnostic. I've been struggling for a year and a half with no answer from any specialists.
It took over a decade for me to be accurately diagnosed. 🙄 The pain started in my sinuses and was super episodic and random, which really threw all the Doctors I was seeing at the time. It should never take a year or longer to diagnose someone!!! Especially with the amount of pain we’re in. Goodness.
A decade! Strength to you. You one of the toughest warriors! I can't imagine. Most people couldn't begin to understand you. 🫂 Yes, I can understand your initial diagnostic because I thought it was a bad case of allergies and sinus pressure myself. And so did my ex Dr at the time. Are ENT capable of diagnosing TN? >Especially with the amount of pain we’re in. I'm saying! Like, this pain has been so intense I look like I've gone mad.
About 4 years ago, my ENT referred me to a Neurologist for my facial pain and I was SO MAD. He said I did need deviated septum surgery but that it wouldn’t cause the agonizing pain I was in and he recommended waiting on the deviation repair until I knew what the pain was from. I was so convinced I needed sinus surgery and felt like he was just passing me off to another Doctor because he didn’t know what to do. But that Neurologist he referred me to is the one who *finally* diagnosed me with TN!!! So I don’t know, I think most ENT’s will pass it along to a Neurologist. I’m so glad mine did!
Blessed are you 🤲 Neurologist has you on a cocktail? You don't have to be specific of meds. I'm glad you have found success ☺️ Yes, my ENT initial diagnostic was TMJ. Try a mouth guard, see you in a month if pain persists, we will do studies of middle ear? I can't recall, I have it written in paperwork back home. Maybe I will pay a visit and see if they listen this second round. Did a hearing test and that came out fantastic. So that's good news! 😄
Today is my 6 year MVD anniversary. 6 years pain free!!!
It's really cool that you all still come back for the rest of us. I love hearing the good news.
I'm glad I have this group. Knowledge is absolutely key. I had suspected what I had was TN prior to my diagnosis. Reading everyone's stories and experiences has helped me process all of this.
I'd been looking everywhere. I talk about it on other apps and no response. Nobody gets it. I was so happy when I found everyone who gets it on Reddit.
Honestly! Being recently diagnosed, I've feel so alone for a long time with this pain. I found comfort in the tmj sub but it never felt completely right... Reading everyone's experiences and seeing others that have found success and still come back to support us who are beginning this journey makes this less stressful for me and I'm sure for others as well... These tears I'm crying for once are not from the pain but from happiness of finding people who care 💕 💞 ♥️ 💜
As far as surgeries, it can be a bow fuse option for some, and my understanding the faster cause can be isolated, better chance for surgery. The risk factors for me has made me balk at surgery, but there are many possible sources (placements), so different risk factors involved for every case. I would say it wouldn’t hurt to list to the surgeon, unless maybe you’ve been down this route already. I was diagnosed in 2001, I’ve come a long way for sure. I’m working again, mind you at a lesser position/pay, but if I need to duck out, I can. I’ve adjusted to my new reality, hope things work out on your side.
I've only been at this battle for about 5 years, but I'm having to keep fighting for the right to work from home after having done so for a few years already. I take a lower dose during the day just so I can get through work, so still have severe pain when it gets stressful. My manager is crazy and relentless. She's not going to win this fight because I never just allow people to treat me like this, but it shouldn't be such a fight, and she's literally making me sick, causing me pain. Despite taking a lower dose, the medication has slowed me down physically, and made it impossible to do a lot of things I used to enjoy. I would love to get that part of me back.
The new reality I speak of is medicine side effects, limits, and quick exits occasionally. And yeah, stress can be a trigger for me as well
Stress is a big trigger for me. I couldn't keep working because of it. I am so thankful that my company offered long-term disability insurance, and I took it! I was able to stay home and have nearly as much money coming in. I'm not sure if you are there yet, but I would definitely look into the insurance for when the time comes. Good luck with the nightmare boss . It's probably hard for her to understand how this works, and she might be a skeptic when it comes to accommodations. So many people lack the empathy to consider that another's needs may be reasonable given the circumstances.
I have been diagnosed for approx 4 months now, I have had 5 different medication changes and I am barely functioning. I go see a neurosurgeon in 3 weeks and I already know I will be begging for surgery. Just had another MRI on Monday and waiting for the results. I just want this to be fixed, I had such a beautiful and full life before this and now I am a shell of who she was. I just want my life back
I hear you on that. I cant be myself on these meds.
Ditto. I feel like I’m impaired but without the buzz from wine.
5 years pain free since my mvd. Been off all meds since 2020. Got my life back
This is so good to hear. Not that mine would necessarily be the same, but it's still success, and gives me hope.
I’m hoping I can manage without surgery, and so far I am, but I still have appointments periodically with my neurosurgeon. She said that if things take a turn I can get right in. It’s comforting to know that this is in place.
Manifest56, I'm taking your username as a sign. We are manifesting options. We are manifesting balance. We are manifesting peace of mind. We are manifesting hope. And we are manifesting freedom from this pain 🤲 You give me a lot of hope and a lot of comfort in this journey. 💓 God bless!
Thank you, monikaa23. We are! Wishing you all the best!
I'm so sorry that I can't relate, because I'm not a candidate for surgery. But, its still nice to have people who get it. 🥰🥰