Don't ever stop looking for pain relief!!

[lifeisgood]

I haven't been on the site for quite awhile but have posted the past 6 years about the pain I have experienced.
I've vented about my disappointment over post AN surgery and not being able to find the source of my pain or an experienced
professional to help me.
Grateful to the docs who did the surgery, disappointed by follow up care.

Anyway, my pain is as follows.
Trigeminal related. Twice per month. Lasts 2-3 days. Singled sided BUT jumps to the other side.
I went back to work as a massage therapist and have been under enormous stress so, they are firing almost weekly now.

I've gone down the path of drugs (Neurontin, Effexor, Topamax, Tegretal) and also use imitrex as needed. No other drugs except birth control for horrible heavy periods.
Anyway, I went to a pain doctor/headache specialist last week. I have hope again.
First off, she thinks I should get annual MRI's and not wait until my 10 year to get another one. (I did have one at 1 year, 3 years and 5 years). She also gave me a nerve block. I have NO idea what she injected me with but I felt pretty desperate about it. Will ask next time. She mentioned 2 times per month initially. She also wants me to get an MRI of my brain and also my neck.

Just wanted to post.
Mary

[Jim Scott]

Hi, Mary ~

Welcome back and - thanks for your post.  I'm sorry to learn about your headache problems but delighted to read that you're getting some relief via the nerve blocks.  Because this doctor seems to have been helpful (pain management physicians often are) I would follow her advice regarding MRI scans in the hope that a source for your pain can be located and addressed directly.  Thanks for sharing your experience and may you continue to be headache-free in the future!

Jim

[Captain Deb]

Mary--glad you got to a pain doc.  Absolutely ask what they are injecting you with next time.  Where did you get injected and how many times?  Have you asked about Botox?  It's done really well for me.

Best wishes,

Capt Deb

[lifeisgood]

Just a quick status.
I went 3 weeks without "an episode".
got hit again on the left side. Got a nerve block the next day and was prescribed Flova. The imitrex only worked for 10 hours max. She is injecting with a novacaine like substance.
Felt a bit numb (of course) She injected into Trig nerve area on face and  a couple of other areas. 2 days later, right side . No nerve block but took Flova and much better.
Feeling wired though.
Did discuss botox. Capn Deb, where exactly did you receive injections. We were discussing on the forehead since that is the are that shows the most when I have expression lines on only 1/2 of my forehead. I know you are talking about at the pain side.

More updates later. Hopefully not too soon.

Mary

[mll]

Mary,

I'm so sorry you have to deal with this after going through surgery. I also had trigeminal neuralgia. My doctor thought the gamma knife procedure I had done pre-surgery affected my trigeminal nerve.  I went through all of the meds and eventually got AN surgery to remove the tumor and fix my trigeminal nerve. I'm not sure if you have visited the trigeminal neuralgia association's web page but they were a lot of help!! Please keep me updated.


mll

[Lizard]

Mary, I'm so happy for you!  Pain can be managed its just finding the right fit, Dr and meds!
Liz

[Antigone]

Mary, I've been off this site for a couple of years now, used to write under name Peanut.  Your description of your post op experience is remarkably similar to mine.  My surgery was April 2003 for a 3.5 cm AN and I am just now, finally feeling myself again! I attribute the final stretch to a wonderful pain doctor in Rome, Italy, where I have been living (again: lived and worked there for 15 years 1980 - 1995).  He has been administering nerve block injections of lidocaine (Xylocaine) 2% - 2 ml., a local anesthetic about twice a month, sometimes every three weeks, for nearly a year.  Now that I am here in the States for a visit I have been without the analgesic nerve blocks, and I think they have worked their magic, for at long last I feel really well after having to fake it for so long.
I shall be interested to see what your doctor administers and where.  For me, the injections were in the neck just under my left ear near the surgery site.
Antigone

[Jim Scott]

Antigone/Peanut ~

Welcome back!  Thanks for your very encouraging post.  I'm delighted to learn that after seven years, you appear to have conquered your headache problem.  Congratulations! 

Jim