Tn help

Hi, just a quick background before i ask my question.
I woke up in the middle of the night in april 2014 worth intense pain in my face and head. In my jaw and temple. I went straight to emergency and the 2 doctors that saw me on the spot said i have tn they organised for a neuro appointment to follow up and 200mg a day of carbamazepine. I however went to my gp and without her knowing my previous diagnosis she came to the same conclusion. I was in intense pain for 2 weeks. 3 weeks later Went to the neuro they were certain of what it was (tn) and i explained that i wasnt feeling well on the meds (even on such a low dose). Got an MRI showing no evidence of anything including blood vessels etc they changed me to oxycarbamezapine (400mg a day) still feeling sick i got blood tests and they explained that the meds were playing havoc with my liver, however my major bouts of pain had disappeared and only had a dull constant pain that would just wear you down and make me tired. They put me on 150mg of lyrica per day which makes me drowsy all day but I’m not having the major pains but more the droning all day pain.

Ok, sorry for that but now, The neuro has spoken about mvd even though I’m not in the category of this ruining every facet of my life, im able to work, i do have a sick day a little more often than id like and i do get very frustrated. I would say i have the droning ongoing pain for probably 60% of my waking hours and might get hit with the zaps 2 or 3 times a week with a bad day here and there. Its tolerable in the scheme of things but the neuro had said that it can become more constant and more intense and considering my age 29 and how quickly i was diagnosed (thinking able the symptoms they think i probably had it for 6 months before the night i went to hospital) they think that mvd would be a good option for me.
Has anyone been in this sort of situation? I mean when im in the throws of a big attack I’d do anything to get rid of it but then when I’m feeling fine, for a lack of a better word (sound) I’m “meh”.
I’m also a little hesitant because, what if they don’t find a blood vessel or whatever compressing the nerve? Has anyone been through this?

Anyhow, sorry for the huge write up. It’s very hard to convey what I’m trying to say.
Thanks.

Hi,

Watching this video would be a good place to start.

http://vimeo.com/10284243

Some Drs will attempt MVD without evidence of compression showing on MRI. If you have Type 2 pain--the constant type of pain--you really need to do your homework with this. MVD can be successful but the odds are much lower. You also need to be sure you are dealing with a Dr that has done this surgery many, many times and has a high success rate. There really are conflicting opinions on this.

I have bilateral ATN and have been searching for answers for two years. I am also lucky that medication has helped me greatly. I am not pain free but I learning to deal with this beast and I am able to lead a full and happy life (so far with some major ups and downs). I feel that I wouldn't consider any type of surgery unless meds are no help. That pain is out of this world and yes I would also do anything to get out of it. But being desperate and vulnerable (my own feelings) can lead to making mistakes.

This is a good post about ATN:

http://www.livingwithtn.org/forum/topics/tn2-and-nothing-to-do

You can put key words into the search bar on the forums and read through past posts. Learn as much as you can, ask lots of questions and get a second and third opinion if you have to.

Jane

Great advise by Jane, the only thing I would add if possible get a 3D Fiesta MRI which gives a much better view of the cranial nerves than the standard MRI. They may see something their that is not seen on the traditional MRI. For me I have decided as long as I can find a medication that works (I'm on #15 over a 6 year span) I will go with that rather than surgery and if I do decide on surgery it will be a surgeon that does MVD's on a routine basis - 2-3 a week, even if that means I have to travel. On a side note I have been having good results with botox - another option worth trying.

In the end, you have to follow your inner voice and do what seems right for you. All of us are different living different levels of life. I no longer work and can afford to get loopy and forgetful from medications. I will tell you, if I was still working, I would have gone for MVD after about 6 months of dealing with medication side-effects ` as getting back to work as quickly as possible would have been my top priority. Get as much information as you can, weight your odds, then follow your heart!

Hi Gail,

I went and got my first Botox treatment last Thurs. It has not helped at all, and with the temperature dropping my mouth is in awful pain. Do you know where your doctor (mine was a dermatologist I am seeing for severe skin reaction to Tegretol) administers the injections and how many units each time? How long does it take to get initial relief? I have an appt. with Neurosurgeon on July 13th to see if I am a candidate for MVD. Looking forward to your reply.

Thanks,

Dil

P.S. I have 3 small kids and am working so MVD is an option.

Mine take about 10-14 days to kick in. Right now I get best best results to have it all around my ear front and back. I was having it in my neck too, but it made my neck too wobbly. My doctor is in Pain Management and is an Anesthesiologist. It can be a be a bit of hit and miss. I think I have finally found a combination that works for me every 3 months. I wish you well. Gail

EXACTLY what I did, but I was in such a state that 4 months after dx, I had done my homework and KNEW without a shadow of a doubt that MVD was the way to go. I too knew it would be ONLY with an expert neurosurgeon…I live in Tenn and found Dr Tew in Ohio (His neuro group is at Mayfield at University of Cincinnati Hospital - he’s retired now) . He did the surgery 6 months after dx. That will be 3 years ago next month. Still have meds, still have pains, BUT N-O-T-H-I-N-G like pre-MVD. My advice…1) do your homework. 2) insist on the best, don’t settle…this is YOUR life.
Best wishes to you ~ Cris



Gail C said:

Great advise by Jane, the only thing I would add if possible get a 3D Fiesta MRI which gives a much better view of the cranial nerves than the standard MRI. They may see something their that is not seen on the traditional MRI. For me I have decided as long as I can find a medication that works (I’m on #15 over a 6 year span) I will go with that rather than surgery and if I do decide on surgery it will be a surgeon that does MVD’s on a routine basis - 2-3 a week, even if that means I have to travel. On a side note I have been having good results with botox - another option worth trying.

In the end, you have to follow your inner voice and do what seems right for you. All of us are different living different levels of life. I no longer work and can afford to get loopy and forgetful from medications. I will tell you, if I was still working, I would have gone for MVD after about 6 months of dealing with medication side-effects ` as getting back to work as quickly as possible would have been my top priority. Get as much information as you can, weight your odds, then follow your heart!