work?

[aydensmoma]

WOW. This is terrible. Is there anyone out there who is able to maintain employment with this?  The pain and dizziness have left me unable to function.

[nancy99n]

Unfortunately, post operative headaches can occur with either MVD or rhitzotomy. Has your surgeon been helpful regarding these issues?  Or has your neurologist suggested anything?  

You may want to see a Facial Pain specialist at a large teaching hospital. These are doctors that deal with TN and other facial pain issues on a daily basis.

So sorry to hear you have to deal with this.

Wishing you all the best,
Nancy

[Milobarn]

I began experiencing symptoms of Trigimential Neuralgia in 2012. The CT scan or MRI did not show any problem but due to the symptoms the facial pai. Specialist made the diagnosis. I was on Gabapentin for almost 1 and 1/2 years but then the pain came back worse. We were sent to a Neutolgist and discussed options. We chose Microvascular Decompression due to my optimal health otherwise. After 7.& 1/2 months the original pain area was gone but other nerve sensations had began (noticed a few weeks after procedure) so we decide to try the ballon rhysotomy. I could tell within a few days I still had facial pain but now even worse I have terrible headaches around the top of my hairline upwards to around the middle at the top. It is a horrible pressure that lasts for hours. I an on alternating doses of Gabapentin &  Lyrica and Oxycodone 3 times a day. I can not figure out what is causing these headaches/pressure. Can it be a result of the Rhyosodimy procedure, medication, I have no idea. I have had to go on sick leave. I am desperate yet I do have faith in  God and a loving family. Does anyone have any idea what may be causing the headaches???

[painterchic]

First of all, I'm so happy to hear that you are finally pain free after all this! I just read about the balloon and the other rhizotomy this morning. I admire you for being able to work, I haven't been able to. I am to unpredictable, thus undependable and my job involved printing deadlines. I do small tasks from home now and then, as it is our own business, but have had to step away from it and have someone else take over. Even just managing that part time in addition to life with 3 kids was too much. And half the drugs left me in such a brain fog I couldn't remember things, drive, etc. Better that way now but still not ready to return.I am lucky, we can still "pay" me for now. Disability is something we may have to look into at some point, I don't know a thing about that. I don't know how people do it. But then, sometimes we do what we have to do, don't we.
Glad to hear you share your success story, it's helpful and encouraging for people to read GOOD news now and then!
All the best,
J

[nancy99n]

Yes, I was able to work through a year and a half of TN.  Probably because I had to keep my job in order to have health insurance (to pay for TN treatment)!  

I am in IT management -- a Business Analyst, doing classroom training, meetings with customers and with upper management, and (luckily) a lot of time at my PC.  I have TN in the upper and lower left jaw areas and MS.

Before I found the right doctor, I was surviving by using Oragel -- to numb the inside of my mouth, teeth, gums -- in order to be able to teach an hour long class, or survive a meeting.

Once I found my Facial Pain Specialist, he put me on Trileptal (1800 mg per day).  I was very fatigued and he suggested taking NoDoz with my morning and noon doses.  This worked for me and kept me alert enough to function.

I was NOT 100% but I did my job well enough to actually get an "above average" rating on my last review.  I was open and honest with my supervisors about my illness, and there were comments made that I was very quiet during meetings (talking hurt).

Also, once my doctor got my pain under control with medication, I immediately asked him how we could "fix" this.  We discussed surgical options.  Since my TN is caused by MS, I was not a candidate for an MVD.  Instead I had a Gamma Knife in April 2009, which worked halfway -- took away the pain in the upper jaw for 11 months.  Then I had a Balloon Rhizotomy in January 2010, which only lasted one month.  Then I had a second Balloon Rhizotomy in April 2010.  I have been drug-free and pain-free since that surgery and am making up for lost time in my career and my life.

Everyone is different, everyone reacts to pain and medication differently.  There are coping mechanisms -- you should talk to your doctor about what will work in your particular situation.  For some folks it is overwhelming and short-term or long-term disability is necessary.  All depends on your own individual situation.

Best of luck!
Nancy