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Living With Facial Pain

Life with TN as a 24 year old - Should I undergo MVD?

#1

This is my first blog post - I’m writing with the hope of finding a community of support for those affected my Trigeminal Neuralgia. I don’t know anyone else that suffers from TN, and I have yet to meet someone who even knows what it is, so I’m leaning on y’all for insight and support.

Some background on me: I’m only 24 years old. I suffer from Medullary Nephrocalcinosis (chronic kidney stones, yay!), Endometriosis, and Chronic Ovarian Cysts. I have passed over 8 kidney stones in the last 4 years, so when I say that I know pain, you know I mean it. That being said, I have never experienced anything even remotely comparable to TN.

A little over a year ago, I started experiencing sudden shocks to the left side of my face. I felt radiating pain across my cheek, down my jaw, and into my teeth. I was terrified - the pain would last anywhere from 5 seconds to 2 minutes. I was screaming, in tears, scared of what was happening to me. This first episode lasted over a week.

Almost exactly a month later, the pain returned. I couldn’t move, sleep, eat, or drink. I tried taking narcotics - they didn’t even make a dent in the pain. I tried smoking weed - nothing. I tried muscle relaxers like tizanidine and sedatives like xanax - nada. Ice packs and heating pads made no difference. I even went to the dentist to see if I needed a root canal, but my x-rays came up clear. I have suffered from TMJ in the past. Thinking that it was some insane level of jaw pain, I even booked an extremely overpriced massage for my neck and jaw, only to leave the appointment in more pain than when I had arrived.

I remember calling my mom and telling her with genuine fear in my voice that for the first and only time in my life, I wanted to die. I was desperate to make the pain stop. I literally didn’t care about anything else in the entire world; I just wanted relief.

Strangely enough, the pain disappeared as suddenly as it had begun. Unfortunately, the peace only lasted a month. By the third episode, I felt genuinely suicidal. I had taken every kind of pain medication I could think of. Finally, I went to the ER, where they gave me an injection of Bupivacaine in my face and I finally felt like I was able to breathe again. However, I continued to live in constant fear of another attack - I felt afraid of going out, brushing my teeth, drinking something too hot or too cold, taking my dog on a walk, and even showering.

Not long after, I went to my general practitioner to get a referral to see a neurologist. She put me on a small dose of Lyrica in the meantime, which made me extremely drowsy and exhausted. And, unfortunately, I continued to have attacks.

FINALLY (two months later) I was able to see a neurologist who explained to me that I likely had trigeminal neuralgia, and that it was extremely rare in people my age (I was a young 23 at the time). He switched me from Lyrica to Oxcarbazepine (400 mg per day). Much to my dismay, I continued to suffer from painful attacks, so he increased my dosage to 600 mg per day. Since then, the pain has pretty much subsided. I have only had 1 attack in the last 7-8 months.

SIDENOTE: I was not informed that Oxycarbazepine significantly reduces the effectiveness of my birth control, which is infuriating. 7 months into taking this medication, a CVS pharmacist asked me if I was aware of the interaction between my the Oxycarbazepine and my birth control, and proceeded to inform me that my birth control is no longer a reliable contraceptive, and that I would need to use a back-up method. For a 24 year old, living with her boyfriend of 4 years, I was absolutely pissed that my neurologist hadn’t explained that to me when he prescribed it to me.

After recently suffering another attack, I made another appointment to see my neurologist, ONLY TO FIND OUT THAT HE HAD RETIRED 3 WEEKS EARLIER AND NO ONE INFORMED ME. I don’t understand how that even happens. It took me months to see this guy, and when I try to make a follow-up appointment, I’m informed that he has retired? So irresponsible and negligent, in my opinion.

Moving on - I recently had another MRI done, which indicated that “the vascular contact of the cisternal portion of the left trigeminal nerve by the left superior cerebellar artery which runs along the superomedial margin nearly the entire cisternal course, as well as a small venous structure which contacts the inferolateral margin of the left trigeminal nerve at the mid cisternal segment.” Whatever the hell that means.

In short, my new neurologist recommended that I consider MVD. After doing some research, I’m pretty scared - not going to lie to y’all.

To be honest with you, this just feels surreal to me. I haven’t been in pain for the last 7ish months (excluding one brief episode) and now all of the sudden we’re talking about opening up my head and drilling into my skull?
I’m unsure of what I should do / how I should feel.

Frankly, I haven’t had to deal with the pain in a while, so my perspective is skewed. Granted, I don’t want to be on 600 mg of Oxycarbazepine for the rest of my life… I’m only 24 years old for christ’s sake. I feel fine right now, but if that pain hits me again, I know that I would do anything to make it go away. But who knows when that’ll be? Beyond that, I’ve never undergone a surgery like this - I have had a lithotripsy for kidney stones and a Mohs surgery for a cancerous mole on my face, but that’s it. I’ve only had stitches once in my life, and I’m terrified at the thought of having a catheter inserted, shaving part of my hair off, dozens of stitches, a metal plate in my skull, and a month long recovery filled with nausea and headaches. I’m petrified of complications during surgery and potential post-op problems. Beyond that, I’m nervous to take that much time off of work and falling behind at my job. I’m scared of having to stay in Dallas (with my parents) and being away from my boyfriend, my beloved husky puppy and my friends for so long. I’m nervous to put that all on my plate and to force my parents to take time off of work to take care of me for such an extended period of time when the medication seems to be working ‘okay’ for now.

Is it better to do the surgery now, when I’ve been pain-free for a while or should I just wait and see if it gets worse? I’m not sure - maybe it’s not even necessary (or is that just wishful thinking?). Or is it better to wait until I absolutely need it? What are your thoughts?

I’m sure this blog post may seem immature and, at times, whiny, but I was a happy, social 23 year old until a year ago. I’m struggling to handle the psychological burden and emotional weight of this condition. No one seems to understand the depth and severity of pain TN causes a person - most of my friends would complain about being hungover from drinking too many Redbull Vodkas or partying too hard on a work-night, while I felt myself slipping into the deepest hole of despair and pain that I could possibly imagine. Without a support system of others suffering from TN, it’s hard to cope.

I hope you all can shed some light on your experiences with MVD (surgery and post-op recovery) and maybe some recommendations or advice to help placate my nerves (no pun intended).

If anyone my age has experience with TN, please please please reach out to me and share your story. At the end of the day, I think we all just want to know that we’re not alone in this fight.

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#2

Hi Olivia
I am not in any of the categories you referred to.I just wanted to say that you are not whiny-just legitimately PO at the medical system.
I have found the best thing for me to do is Google research the heck out of drugs.
MVD advice I have-find the very best surgeon and team that you can.Find a hospital that does them constantly.So even if you choose not to go forward right now-you have started a process that might pay off later.
Another thing to consider is insurance?Will you still have insurance in 10 years?
You are on the right track and there are some amazing people with tons of experience on this site.
You might want to just do a new topic -and type in MVD.To the right of where you are writing will be lots of people who have had MVD procedures,or who have the same fears as you do.Then you can open postings in that area.
Then you can private message whoever you like.
*Sounds like a pain ,but please just try.OK

I have found that many people who have gotten better don’t come on as quickly as others who are still struggling.

Another thing you can do is find the closest Trigeminal Neuralgia association near you.There might be someone in your area,in your young age group,who can provide support.
I am glad you are pain free for now.(and fingers crossed,forever.

If anyone seems to match your criteria

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#3

In my opinion you’re too young for surgery. First problem with it is that it doesn’t work all that well, there are numerous people on this site that had MVD only to find relief lasting a few years at best. Second problem with it is you can end up with AD, which is said to be worse than TN, there’s at least one active conversation about AD going on right now that you need to read.

TN gets worse over time. With that in mind I say don’t go directly to “the big guns” for trying to get a handle on it. Work with medications first, there are still plenty of options and combinations out there for you to try. It’s frustrating and it can be a long process but in my opinion it’s better than brain surgery. I think you should wait until absolutely need it and have run down and failed ever other option.

TN also is known for randomly going into remission. You’ve only be dealing with this for a year, you could easily go into remission. I was Dx with ATN at 36, which is also a bit early for it to start. I played around with various med combinations for a about 3 years then I basically went into remission – that or found the combination of meds that works for me – and was largely pain free for 7-8 years. I’ve been having some problems the past 2 years or so but I also had a change in medication and so have had to figure out new dosages on everything.

The biggest thing you need to do with TN/ATN is have patience! There is no quick solution for this. You’ll get there, you’ll find what works for you, but I strongly advocate baby steps. The very last thing you want to do is make it worse.

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#4

Here are some MVD facts from a prior post from TJ:
… even by the most generous study out there. “excellent results” for Type 1 were less than 25%, “good results” 39%, and “poor results” 36%. Average pain relief had a mean of 2.5 years. FWIW p< .05 making it a vry reliable study (published in Journal of Neuro Surgery April 2015) Type 2 and ATN was not considered as MVD is totally worthless in the absence of lancinating symptoms and actually considered to make them worse.

Complication rates are high enough that both the International Radio Surgery Association, American Academy of Neurology and the European Federation of Neurological Societies have withdrawn their Practice Parameters for further review and updating.

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#5

Hi Olivia, I live in the UK and I have had TN for the past 10 years on and off. I am 68 so more the age for TN. I took Phenytoin for the ten years but decided to have a glycerol rhizotomy that is medical glycerol injection into the nerve. It has stopped the pain but left the side of my face numb, a very odd feeling, and they cannot guarantee how long the pain may go away for or if it ever returns. My advice would be to carry on with the medication if you can stand it and it doesn’t give you too many nasty side effects and then you have the option of MVD etc., later if really needed. Try not to stress yourself too much about it as it really makes it worse and there are many more younger and older people getting TN. There were two young ladies having operations when I had mine so you are not alone.

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#6

Hello Olivia,

I can relate to being young with excruciating pain and finding few at my then age to relate. Internet has opened the gap so Support is here for you.

I don’t have your exact situation with Ovarian cysts my close friend has had that excrutiatinly painfully for years or the stones. I’ve had my hard breaks all in my head,face,jaw with multiple surgerys since birth. My jaw from cleft palate has a unrepairable hard palate skeletal deformation break & soft palate -3 repairs so far. At 19 I had arthritis formed already in both jaw joints and by 20-23 Trigeminal Neuralgia was present with horrifying painful electric shocks, burning uh it had scared me so much. At that time most my doctor’s (Maxio-facial surgeons) didn’t want to admit the possibility and didn’t. (Now they will) other doctors put in my other jaw issues or wrote unknown a-typical facial pain. Finally best primary doctor got me to neurologist who broke the long overdue news.

For years I suffered these unique pains many thinking was over dramatizing my other jaw joint/arthritus/cleft palate issues. Not knowing what the pain was related too since with multiple conditions confused and frustrated me because I knew something else worse was wrong.

Once finally diagnosed I felt better I wasn’t nuts but as you know “horribly worse” w/all the rests! Extreme surgerys with not all outcomes being great or needing to be repeated. Being young with so much, it is scary! It is aweful at ANY age but when your dreams, career and thoughts of love, life & family infront it just feels like a cage got dropped around you. At least for me it has.

The severity of my TN has been in remission on/off from worst pain moments as my dislocated jaw takes center stage.

How many of us ask “what kind of life can I have in this pain?!?” Intractable pain is unbearable & I never thought I’d wish for something that took me fast instead of killing me not “softly” like the song it is slowly and ouchie x ++!?!

Medicines can cause as you know severe side effects enough you can’t function. I was a ballroom dancer most my life & Medicines I couldn’t dance on and pushed through it for years until changes had to be made.

Choices… remember they are choices. Major surgeries need more medical advancements, so being young have hope time is on your side for more knowledge & new procedures. If you read my profile you will see all my life and mid 20’s I was in chronic pain trying as now to function as a mother, business owner, dancer, singer, wife.

I made choices to live and avoid surgeries after so many but admit waiting too long was bad idea. Long being…years. My #1 supporter & best friend my boyfriend is a blessing…but also is scary trying to create a future with this is health challenge, but possible. I’d love to offer support in ways that have helped me. I personally need prosthetic jaw joints both sides as arthritis & numerous surgeries have my jaw joints dislocated both sides & I am loosing my hearing because of it. I waited too long in pain trying to live & now know balance is critical. My neurologist is very concerned and doesnt want me to have my jaw joint surgery as my Trigeminal nerves will most likely be more damaged then now. But I can’t chew, and the pain is so bad it is hard to decide fix this and damage that? Choices…fun times huh? I have considered radiation as option I am comfortable trying first for TrigeminalN but all doctors agree, jaw surgeries first. I have lost extreme function for my life from a full time working mother, artist, singer to well just know you are doing it right seeking support, options and choosing a plan that will work to balance your health as well as your personal life and dreams. They all matter but the body does wear down and typically doesn’t when dealing with nerves & joints get better it deteriorates so health is priority.

I did want to mention Carisoprodol has helped me immensely. It isnt great for severe Trigeminal flare ups but mild burst it does It is muscle relaxer I use for spasams in face, jaw & my soft palate having been repaired. Many doctors are worried about this med as a lot of people abuse it to feel relaxed and not for real serious medical issues so be prepared some doctors have strong opinions about it but is 1 med I don’t get serious side effects & works. For TrigeminalN flare ups baclofen has helped a lot, but I can’t function at high doeses. But when TN is bad I’m not able to function at all so it helps the shocks a lot for me. Tizanadine you took actually was scariest side effect for me, I became unconscious! I have rare side effects so just I advise any new meds only try 1 at time for week or as doctor recommends but not with something else new. This is so you know if works or if you get side effects you won’t be able to tell if taking 2 new meds which one it is.

Many on this site have direct experience with surgeries for TrigeminalN and can offer advice as they have. I know of someone who waited to have many surgery options but for him it got bad enough he had the nerve cut one side & doesnt have the pain & functions at work etc but yes affected his facial appearance drooping on one side.

*Good news, being young medical advancements will come. I had remission for awhile after having like you in my early 20’s the worst flare ups until recently really bad. It took so long to find a doctor who understands TN.

I’m 39 and took from 1st person thinking this is TN as I had with electric shocks both sides & my whole face a’blaze on fire, etc. 32yrs old diagnosed since early 20’s I sought many doctors for help they said was my jaw…wrong

Reading all out there when diagnosed, I felt as you did and with so much life I want to live, it was the hardest news to hear more then any of all my other 10+ major surgeries & now needing prosthetic jaw joints +.

You aren’t alone. Seek other opinions as you are. Be willing to know as surgery has risks so does medicine AND waiting too long for treatment or having surgery. So you must be good to yourself. Trust the doctor who “lives in you” & the support of those who have been through. Seek those doctors no matter where they are, most insurance covers out of state and answers are coming. Have hope that you are resilient with a life that can be fulfilling with adjustments that don’t ever seem fair you may have to make but it’s possible to live a great life…yes even in pain, have hope. I have a great book that helped me deal with daily pain if you think would help. I also use scarfs I wrap around my head or hand made crochet Wraps for cold nights or weather as helps keep wind from irritating my TN on face as well as warm my joints from arthritis. If I can offer any support just ask what you need most, as I’m only one of many here who want to see you better. It was hard being younger with so many surgeries and mostly pain how it affected my life. My friends, family, daughter & just my goals and dreams. Lastly…I pushed past my pain longer then I should after so many surgeries since 19 I wanted time to live. Taking time to find right doctors matters but In my experience don’t avoid your gut if you are in so much pain smiling on outside while crying inside because the body we have does need help & repair.

*We are more then our disability that pain us. Please be all you are in strength of being honest and vulnerability to allow help/support from others yet trust in yourself no one will ever no you better then you. Seek 2nd,3rd opinions until you are comfortable & as my surgeon best for me is in Dallas be open to neurologist/doctors all over world because location for 1 surgery shouldn’t matter as you have only 1 body with a full life you will have ahead. I send you best of everything in your search, healing & future. If anything I can answer or help with let me know. The worst storms produce the most beautiful rainbows…if in the eye of the tornado, look up you will have moments of peace. You are not in the least whiney… you are a powerhouse of strength & a living testimony. Give yourself credit for caring about the life you once had, the one you are going through now and the future ahead that has so much waiting for you…and you are not alone in your pain and suffering.
:slight_smile:
-Charlotte

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#7

Hi,
I’ve had Trigeminal Neuralgia for 14 years, had Gamma Knife Surgery in 2004 and mvd in 2015. I’ve tried practically every medication, many complementary treatments and nothing has worked. I’m on a boatload of meds including opioids and my drs say that’s all they can do for me.

I’m going in a different direction than what the others have said. TN is progressive, it doesn’t get better with time. It has the ability to turn your life upside down in ways you can’t imagine!
If you decide to wait on the mvd be careful about doing other types of surgery that would be destructive to the nerve. Other surgeries may decrease the effectiveness of an mvd later.

The old thinking of people over 50 getting TN is no longer true. Any one, any age can get TN even little children as young as 3.
If you choose to have an mvd, it is extremely important to get a second opinion and to have an experienced neurosurgeon. Many folks travel to to have their surgery.
Below are a few of the more trusted and experienced Neurosurgeons:
Dr. Casey, Riverview, Michigan,
Dr. Mark Linskey UCI Orange, CA
Dr. Jeffrey Brown, New York
Dr. Ronald Brisman, New York
Dr. Michael Brisman, New York
Dr. Kim Burchiel, Oregon
Dr Raymond Sekula, Pittsburgh

No one has died from an mvd and if you survive TN you will survive surgery. You’re stronger than you think!
They drill a small hole behind your ear and do the micro surgery through that. They shave very little of your hair. I had long hair, which covered up the shaved part. I travelled 300 miles to my neurosurgeon and he required that I stay for three weeks after surgery, in case anything happened. When I got home I didn’t require any further help. Any side effects I experienced disappeared within six months.
You’re young and healthy. Go with your doctors advise, get second or third opinions. Wait if you need to, you have time, but do it before TN takes over your life.
Take care
Kathy

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#8

sister, I can relate about the dying part. I have never been suicidal, but I have wanted to die over and over again. I was gonna try to get an MVD and the final straw for me to go with it was “cedar fever” allergy season here in central Texas. after years of head pain, high stress, and THEN to top it all off I felt like I was getting the flu, I practically had a nervous breakdown at my office and I decided right then and there that it was worth it to me. I am 49 though. I felt like what the heck, I’ve lived a long enough life. It’s ok to die. that’s how terrible TN is. you become at peace with the thought of dying. well at least I did.
I did ask my 80 year old director whether he thought I should try MVD surgery. He had his knees replaced and would walk all side to side like he had cerebral palsy or something. He told me he couldn’t go to the store with his wife even to get groceries , etc etc , and surgery gave him his life back . He couldn’t believe he waited 10 years of suffering. He said if there was a chance I could get my life back and control my pain, then I should really consider it. I was sold.

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#9

I can totally sympathize with you. I was diagnosed at 16 and MVD done then because of the horrific pain from age 14 and having severe head trauma from a car accident. I’m 42 now, I can honestly say I’ve tried every med and nearly every procedure. I would put it off until your pain returns. Here’s why: my MVD only gave me 7 years of no pain. They were an AMAZING 7 years but the. I’ve been either medicated, injected, gamma knived, you name it. I know the medical system is a nightmare as when I had an attack and desperately needed to see my neurologist in 2015, he had retired and no one informed me. It took another 3 months to get in with his partner who uttered the words that I’ve heard from several neurologists now “I can’t do anything to help you. It’s only going to get worse.” I’m 42 and on disability. I worked from age 17 to 40 and am a mom to a 5 year old. I never thought it would rob me of so much. I’m pulling for you! All I can say is fight!!!

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#10

Thank you for note, Ellen! I’ll definitely look into local support groups, that’s a fantastic idea!

Also, I hadn’t considered the insurance component of the surgery if I decide to do it in the future.

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#11

Wouldn’t entirely agree that no one has died from MVD, link below, sure small percentage.

Not sure in the case of this or any study, but often death may be attributed to say for e.g. pneumonia, not directed linked to the MVD, hence not included, but maybe a result of the procedure. Guess work but this is often how it works.

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#12

Ignore the last sentence having reread link

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#13

Thank you! I stand corrected.

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#14

@OliviaLeo With the number of issues you mentioned in your original post that are seperate from TN O doubt I would consider MVD especially at 24. The procedure is temporary for most (In fact as there are few studies that are not self studies or what the research world call marketing and virtually none that look after 7 years) Whether the move the nerves foil the nerves etc nerves do what they do. The problem is when they do their thing the rebound pain is nearly intractable (it doesn’t go away) and is usually worse than the original. In fact, even single-shot nerve blocks are a challenge in this regard, because their limited duration leads to rebound pain and substantial opioid supplementation. Thats why MOST MVDs happen at the average age of 57. Think of the increased frequencey (and pain) you experienced after your ER visit, where they gave you an injection of Bupivacaine. Now imagine the next 60 years that way… An flare every 8months? Most folks here would have their right arm amputated to get that result. I’m not diminshing what you are experiencing in any way. But an MVD just isn’t worth the risk for where you are now.

Get to your Gyno or Planned Parenthood. The Mirena, Kyleena, Liletta, and Skyla IUDs use the hormone progestin to prevent pregnancy as well as the IUD itself. There is another advantage in that your periods will be reduced or eliminated (never a bad thing) lessening the chance of a pain flare. The device will NOT mess with your meds and in fact eliminating the BC pills will make the meds more effective. Yes your doc should have known this which tells me he doesn’t deal with youn women. he would be the LAST person I would let drill holes in my head. And even if the surgeon wasn’t the guy prescribed. He should have caught it immediately as part of a work- up for surgery.

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#15

Im sure sorry about your situation and as others surely have said to you at “such a young age.” I’m 69 and a retired professor who started having TN about 10 years ago and believe me there were days I thought I would be better off dead. I also began with Multiple Sclerosis about 3-4 year prior to the TN. Trying to teach classes when an attack took place was to say the least trying. Two things that have worked for me has been good old anti-seizure medication (Carbamezapine–but having to deal with zombie like side effects when I am taking too much; and secondly, Gamma Knife. My first Gamma Knife only lasted about 2 years (but a blissful 2 years without pain) and now I am on my second Gamma Knife pain free for about 5 month. I’m not sure my doc would do a third, but if not I would try the MVD. Because of my MS I’m not a good candidate for the MVD. My advice would find out if you would be a candidate for the Gamma Knife before doing the MVD. Gamma Knife is so much less invasive and is an outpatient about 1/2 day procedure. Good luck and I would be happy to discuss more about Gamma Knife if you would like.

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#16

Most important is to talk sooner, rather than later, about your options. The last think you want is to find yourself behind the 8 ball during a major pain attack without a plan in place. That’s when you moght make the wrong decision. Karen above has a pretty good list of neurosurgeons. Dr. Casey would have good info re having @ MVD at your age, and he is a very sharing man. Stay strong and pray for strength and wisdom tackling this beast.

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#17

I am sorry to hear your story. My TN began when I was 20 years old, but it developed quite slowly (in the first few years I was 90% of the time in remission), so I was diagnosed only at the age of 25. At this age, there were no more remissions, so I started taking medications, but none of them seemed to be effective for more than a month or two, and my neurologist referred me to an MVD operation a year and a half later. Fortunately, I have been pain free ever since the MVD, which was 5 years ago. I do not know how long will it last, but I am very grateful for the pain free time that I get. Regardless of if and when the pain will return in the future, I think going to an MVD was the best decision I have ever made.

I think the most important think if you decide to go with an MVD is to find a good experienced MVD surgeon. The experience of the surgeon can have a dramatic effect on both the success rate and the complications rate. Additionally, a good surgeon should be able to tell you based on your MRI whether you are a good candidate for an MVD or not. This can have a very large effect on your chance to get relief, and is probably one of the reasons that different studies about MVD produce so different statistics.

BTW, the recovery from MVD is very different for different people. It seems from what you wrote that you heard mostly from people who had a more difficult recovery. For me, the recovery was very quick. Within a week I was fully able to go around the house, prepare my meals, etc.; so my family had to lose only a few days of work. It is important, however, not to stress yourself physically after such an operation for a while, so it is recommended to wait longer before going back to work yourself (or travel far, which is also quite strenuous for the neck in my experience).

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#18

Hi Olivia
I am so sorry that you have suffered so much at such a young age. I was just 19 when this monster pain struck. And can you imagine at that time no pain killers were available for TN. This was some 55 years ago. Even MVD was not heard of. Like you even I felt suicidal. Only 1 drug Dilantin Was available that time which did not work. I tried injection that dint work either. In desperation I went for surgery in which I got the painful nerves cut at root and since than no pain.
I got lasting relief but at heavy price with permanent numbness on half side of my face.
At that time I had no choice but to go for surgery.
I feel that if the medicine is working, I would not opt for MVD. Because the follow up of this surgery does not give you lasting relief the pain returns in 2 to 5 years time.
As long as the meds are working, avoid surgery, what if you end up AD (a 24/7 pain) tolerable but very annoying.
I hope the medicine works for you forever. Besides you will get remission from pain from to time. And who knows the pain may never return.
I wish you all the best.
Take care. Make the most of pain-free days.
Yakub

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#19

Hi Olivia, I can’t tell you what to do but I will tell you of what I went through. I have TN. I had all the thing that are supposed to get ride of it or at least make it livable. For a last resort I had MVD. IF I would have known what I had to give up by having it _I WOULD NOT have done it.
I lost the hearing on one ear, I have total lost of feeling in the side that I had TN on, my eye gives me constant trouble due to zero feeling in it. I can not hold my food in my mouth, I can not hear on one side, my noise runs and drips but since I can not feel it I look like a kid with a snoty nose that need wiping, I have to have my wife tell me when we out to eat to wipe my mouth because food will fall out because I can not hold it in. I bite my lips and inside of my mouth due to no feeling.
I’m sure if I would have known I WOULD not of had MVD… I was only told “well you may loose a little more feeling in you face but it will not be enough to make your face drop.” NOT, not a thing about all the other things. Well best of luck to you. You have my prays and love.
Wheels 4 Legs said all that.

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#20

Hi Olivia,

My son was diagnosed with TN in November at 13 yo.

Like you, he is taking oxcarbazepine (1,200mg) and also gababpentine (900 mg). I am very concerned about his quality of life, especially during his prime learning years, using this medication.

He is a candidate for MVD. We are in Toronto, Canada and saw a surgeon at what is probably the leading neurological hospital in the county. He has performed over 1,000 MVD’s and has a 95% success rate. He has said that the surgery is straight forward, only a couple of hours. He advised that we should plan for 4 weeks of recovery but some people are back at work in only 2 weeks.

I am now doing more research and due diligence. I think surgery is the best option for my son. He is scared and really doesn’t want to do it but he cannot or will not articulate why.

He will be 14 in March and the surgeon said his youngest patient was 16 years old. You and my son are in similar situations due to your age. If I come across and helpful information I will post here. I am now trying to connect with as many patients of the surgeon, Dr. Tymianski, as possible.

Good luck to you!

Nancy

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