Hi my name Is Sarah. I’m 28 (in a week) and have suffered with TN for 10 years. 7 months ago I gave birth to my first child a daughter. My tn played up during labour but did mange ok.
treatment wise ive had a steroid injection and tegretol. now following the birth of my daughter tegretol is giving me horrible side effects. I saw my consultant yesterday and he suggested MVD. He then went on the describe the possible side effects and absolutely terrified me. Facial droopage, hearing loss, numb face completely, headaches and never returning to work. I’m beyond terrified and haven’t stopped crying since the appointment. Please can anyone give me any advice and if you have had MVD how we’re you afterwards?
Hi Sarah,
Please join the MVD group and have a read through all the posts and discussion threads
http://www.livingwithtn.org/group/mvds
Have you tried other medication options ?
MVD is definitely something to consider, yes it’s the most invasive, but it is the least damaging, in fact when done by an experienced neurosurgeon who specializes in TN and MVD there is more often than not no damage to the nerve,
With any procedure there are risks involved but to date MVD offers the best long term outcomes. Keep in mind it is not a cure.
Research and read all you can, consult with more than one neurosurgeon and then make an informed decision. Don’t rush into anything.
(( hugs )) Mimi
I HAD AN MVD ON JULY 24, 13 WITH DR JEFFREY BROWN IN NEW YORK. IT IS A MAJOR PROCEDURE BUT I CAME THROUGH WITH NO SIDE EFFECTS AND MUCH RELIEF. MY EXPERIENCE THAT DURING PROCEDURE THERE IS A DOCTOR WHO HAS CONNECTED PROBS TO ALL THE AREAS THAT COULD BE AFFECTED DURING PROCEDURE. THROUGHOUT THE OPERATION THIS DOCTOR IS SENDING STIMULUS TO THOSE AREAS IN THE SURGICAL AREA . IN OTHER WORDS THEY WERE TESTING SKIN RESPONSE, HEARING AND MANY OTHER FUNCTIONS TO WARN SURGEON IF HE IS NEAR A DANGEROUS AREA. IN ADDITION THE SURGEON HAS PROBS THAT COORESPOND TO THE SURGEONS LOCATION AND AN MRI RE-DONE JUST PRIOR SURGERY. FROM WHAT I SAW IT TAKES A TEAM THAT WORKS VERY CLOSELY TOGETHER. THERE IS NO GETTING AROUND THE FEAR OF SOMEONE GOING IN YOUR BRAIN, BUT FOR ME I WAS NO LONGER LIVING ANY FORM OF NORMAL LIFE. WHATEVER YOU DECIEDE IT WILL BE RIGHT FOR YOU GOD BLESS
If you can …get THE TOP MVD DOC!
There are a handful…I had no side effects…2 yrs better…only 5% or less pain.
See if you can get some lidocaine prescription for face from any doctor ASAP,
…and fire your consult…
Best docs are at doctor tab above,
Are you in USA?
Keep learning and posting
Thank you for your replies I really really appreciate it. I’m in the UK lol. My consultant seems very much like he doesn’t want to do it purely on my age and the fact I have a young baby. I’m upping the tegs at the moment in the hope it will ease off 
but how long realistically can I stay on these meds. Shindig I’m actually so happy to finally set someone around my age who has it! (Sorry) everyone seems to be 40+. Just so scared
If somebody can help your baby for three weeks,while you rest
what is the issue with "consultant"
There is a girl here I think 19 had her MVD today
Go here up to the link for groups…join the UK group…may get better dr care ideas…
Too join the younger TN group too!
Don’t settle!
Learn all you can…10 years is long enough not to let somebody treat you better!
Keep posting!
Thank you so so much. Any information is brilliant. Know it sounds bad but was so relieved when the results of MRI came in. Being fobbed off as “dental problems” seriously annoyed me I’m the end lol.
MRI don’t show TN in most cases… Have you got the book…striking back…by dr ken Casey…amazon …it’s. our TN. Bible here!
Sarah, I just had my MVD done 9 months ago (age 30). I think doing it while you're still relatively young is a plus. Of course recovery depends on how the surgery itself went and if you have other medical conditions, but being young helps us bounce back a little quicker. I am glad I did it when I did. (Unless I had known about it 10 years ago, then I would have done it then and not have suffered so much and had to stop working and put my life on hold.) If I had to do it again, I would in a heartbeat. It doesn't mean it was easy nor without it's own set of obstacles, but I prefer that over the misery I was in before. Do as much research as you can. Make sure you understand the pro's and con's. I was so desperate that I was willing to just try it and deal with the possible con's if it came to it. It was a risk I was willing to take. Also make sure you have a great neurosurgeon. The "MVD Group" here is amazing! They were so helpful when I started off and even now.
Sarah.
I was 29 when first diagnosed with TN, I’m 41 now.
I was very lucky however in that my bilateral TN went into a very long remission.
8 years for my right side and 10 years for my left side.
I was naive back then, didn’t know it could come back…I had 2 young daughters and didn’t make the time to research TN. It was a huge surprise when it came back.
I have yet to meet anyone else who has experienced that long of a remission…but it’s possible.
(( hugs )) Mimi
Sarah..My TN started at age 25 and I had my MVD surgery at age 33....That was 30 years ago when little was known about TN. Did tegretol for most of that time and was at the max level with terrible side affects. Compared to living with TN the surgery and the recovery was easy to deal with. In my case after surgery my pain was completely gone and after about 24 hours was wide awake and feeling pretty good. Recovery also went very smooth except for a spinal leak that was quickly treated. Use this site to educate yourself as much as possible and make certain that you have a neurosurgeon qualified with extensive experience in MVD surgeries. Those possible side affects are real but the percentages are low, get your surgeon to lay out for you the likely outcomes and you will find that being pain free or at the least getting dramatic improvement is the highest potential outcome by far. Good luck
Thank you so much for your replies and experiences. It’s nice to hear from people around my age too! I’ve been made to feel like I’m the only one! (Obviously knew not lol)
Hi Sarah, I hope you and your little girl are ok, I’m 29 and had this February 2012 and I’ve been on all sorts of medication, they have tried everything. They say it’s stress related and that kills me as I don’t like the term. In February 2013 I decided to come off all tablets and stick to strong painkillers as I was in pain and zombified from the medication, so luckily, things really settled and I only took the odd pain killer, but 2 weeks ago it returned with force but I take cocodamol 30/500 2x5 times daily, which is 2 too many but I need them, but I still get awful pain, I am currently in the process of trying some things ought and putting theories to the test, I’ve changed some eating habits, like not eating things that irritate my gums, I always wrap up warm, I have a problem with being incredibly tense which I believe aggravate my pain due to posture. I hope you’re ok, I’m from the Carmarthenshire area xx
No not a disease of stress at all.! Get a new doc.! Stress does make TN hurt more. But not the cause.
Chloe Edwards said:
Hi Sarah, I hope you and your little girl are ok, I'm 29 and had this February 2012 and I've been on all sorts of medication, they have tried everything. They say it's stress related and that kills me as I don't like the term. In February 2013 I decided to come off all tablets and stick to strong painkillers as I was in pain and zombified from the medication, so luckily, things really settled and I only took the odd pain killer, but 2 weeks ago it returned with force but I take cocodamol 30/500 2x5 times daily, which is 2 too many but I need them, but I still get awful pain, I am currently in the process of trying some things ought and putting theories to the test, I've changed some eating habits, like not eating things that irritate my gums, I always wrap up warm, I have a problem with being incredibly tense which I believe aggravate my pain due to posture. I hope you're ok, I'm from the Carmarthenshire area xx