Me too, I read his post and I cried, but mostly I want my husband to read it. I also have AD and I have a pain pump installed which helps me. I wrote in reply to an earlier post and told some of my story, a failed MVD... I had that surgery in 2008; in 2009 I had the pain pump installed which takes the narcotics to my spinal fluid. It helps, but I still have to take lots of other meds. thank you all.

My pain started after a supposedly routine operation. I was supposed to have a cyst/polyp removed from behind my left cheek. I was assulted after work in 2005 while trying to stop a man from attacking my pregnant friend. The man had just broken into her car and stolen the her stereo. We saw him get out of her and myself and a work mate called Dan stupidly ran after him. We cornered him and he said he would give back the stereo so he took us to when he had hidden it. It was in a bush near the car. Vicky, my pregnant friend who owned car, was on her phone to the police and when he noticed this he flipped. I had worked in the pub trade for 5 years and had seen people flip before but this was different. He went for Vicky and I grabbed him and threw him against a wall. He started swinging for me and I blocked a few (what I thought were punches) but 2 got through. Dan grabbed him in a head lock but suddenly went down. The man had stabbed him in the chin with a screwdriver. I went to restrain him with an arm lock but he twisted out and punched me in the face and ran off, I tried to run after him but my balance was shot after the punch so he got away.
I had my left cheek broken but what I thought were punches weren't. He had the screwdriver in his hand and he had stabbed me twice in the face. One didn't penetrate the skin much but started next to my nose and went up between my eyes and finished in the middle of my forehead. The other went in just above my left eye only just missed the eye.
I lost the feeling of touch in the left side of my face and lost a bit of vision but I just thought how lucky I was to still have my sight!!
I carried on with life and changed my career from bar management to gardening (plants don't argue back quite as much!!!) and really enjoyed my new career.
I was so lucky because firstly Vicky had a beautiful baby boy and no one was that seriously injured. My face was numb but I had no pain, it was the total opposite, it felt like I had just been to the dentist and had an injection just permantly!!
I was being seen by specialists at my local hospital and they had seen on a CT scan that a cyst had built up behind my cheek and told me that it needed to be removed.
I had just started a new job but the surgeons insisted that it was a routine operation and that they had done thousands of these before with no problems and I would be back to work in 3-5 days. So I had the operation.
I went home after the operation and felt fine, I was on cloud 9 because of the general anesthetic still in my system!!
When the drugs wore off I noticed that I had a dull aching pain and shooting pains when I bent down or stretched. I went back to work after 5 days but something wasn't right. I went to see my gp and he said that it was probably just the healing process and the pain will go away. That unfortunatly never happened.
I went back to see the surgeon and I was told that during the operation they couldn't find the cyst but he had removed some inflammed tissue???
I found out later that this was probably the ends of my nerves!! Nice one!!
I have been on many combinations of medication but the only one that took my pain away was a nasel spray containing ketamine. The only down side was that the side effects were horrific!! I couldn't remember anything, was totally spaced out, couldn't drive and basically had no quality of life so I had to stop that.

I've had a nerve block attempted but this was unsuccessful. No one wants to try and remove the nerve because they're scared that they might cause even worse pain or do damage to something else.

I'm currently still on loads of medication and I'm waiting to go and see a neurosurgeon and talk about possible deep brain stimulation. I'm really scared because surgery is partly to blame for my pain so I don't really want anymore, but on the flip side, it might help stop/reduce this awful pain??

ouch ouch ouch I am so sorry you have been threw that! So sorry people are uncaring and down right nasty violent to others. I can not get into doctors removing things they shouldnt have...If i say what i feel I will get banned but w.t.h.

I am really curious if you are able to at least try a neuo stim a.k.a. p.e.n.s BEFORE they set you towards the deep brain stim???????
I too can not have any type of surgery and no doc or neuro wants much to do with me as any "work" they try would just make things worse. But I am Blessed and thankful for my neuro stim implant. I know of other who do have the deep brain stim and can connect you if you would like when the times comes. It is A Big surgery and I pray to any and all Gods that you have a great neuro and staff when it is done. I am gonna message you so check your box.
Have you in my prayers.
PEACE
BMW

Hi BMW, How are you keeping?

I am so amazed at how many of us are out there with trigeminal neuralgia and not just dealing with that pain but dealing with problems with medications and bad outcomes from surgeries and procedures. I am trying to find out how many folks who had an MVD had facial numbness after? How long did it last for you?
Also, did anyone come out of the surgery pain free and then a couple months later the pain returned?
I am trying to find out how to contact the person on this forum called Burnt-Marshmallow. She sent me a very nice welcome note when I first signed on and it helped to read her story. I was interested in finding out more about the neuro stimulator she had implanted?
More questions: Does anyone take Topomax? If so how much? I was recently started on it and I am up to 50mg daily? Haven't seen much result--I eat less. (One good side effect of all the meds I take)
So---let me know if any of you had a long post operative phase of more than 5 months. My surgeon is saying that I should be better by now---but I have talked to other people who took almost a year for the numbness to wear off. I also spoke to one girl who got pain like I did and then several months later it went away. I am looking for some insight. Thanks.
Oh--Burntmarshmallow--if you are out there---let me know---and let me know about the neuro stimulator. Thanks.
I wish pain free moments to all.

Hello Linnie and welcome to NeuroTalk.

If you have some questions that you wish to address to Burntmarshmallow, I suggest you post them here in this thread, or else make a specific thread about the subject matter that concerns you. I'm sure BMW will see them when next he/she is on line.

After you've been with us a bit longer you'll be able to communicate with other members via personal message.

Hello Linnie . I am still here .
I have never had MVD or anything as those were not an option for me. I do have a SCS also called PENS unit implanted for my t.n. face pain. I will be glad to help with any questions you have. I will also see if I can hunt down a couple folks I know have had mvd and perhaps we can help with some of those questions you have.
as far as the SCS I have a post in the SCS sub forum I will get the link and post it here in this forum.Tho I dont know if it will answer any questions you have..so PLEASE post and do not hesitate to ask questions.
Low Pain weekend to you.
Hope to hear back from you soon.
... I am female lol I knew that now you do too . . . off to get that link bbs
PEACE
BMW
p.s. I see you have read this alreadyLinnie but the link ...http://neurotalk.psychcentral.com/thread117803.html
Let me know how I can help or what info you might need as far as SCS and Please know I am here to help to share info and give support anytime for anybody.

It has been a long time since our leader has written on this thread. Hey Tina....How does one take care of themselves when they have Tn or AD? At times I get jealous of those who have someone at home to talk to when the pain get out of control. You can't really call your friends all the time. They get tired of hearing all the bad news. Anyway, thought I would stop by and say hello
Cheryl

This is a general inquiry to all individuals who have had decompression surgery for trigeminal neuralgia. How many of you were given told CSF leakage and potential multiple surgeries were a potential adverse effect from having decompression surgery. I'd love to hear the full rendition of what your doctor informed you of prior to your signing the informed consent form.

Thanks for any and all of your input
Jurisprud

Hi jurisprud
your question is very good!
I think if you post this down below in the forum it will be seen and read more easily then being up in the stickies.
Just start a new thread with title "MVD QUESTION" or something like that and you will get some replies.
I have never had MVD . I know many here have. I will see if i can get them to add input as I cant offer much help on the topic but I can offer a hug good thoughts and can help aim ya in the right direction to contacts and info.
I want to welcome you to the T.N. forum at neurotalk and hope you find as many understanding helpful folks as I have.

PEACE
BMW