Quote:
Originally Posted by Nik-key
Hi Kewlbutterfly, Love the name 
Take my hand, you are no longer alone 
BMW had it half right, I had the MVD and 2 gamma knives, (I have bilateral TN- so gamma on each side) ALL the surgeries failed and left me with AD too.
I have the same sensations you do, but the other thing I have is this sensation that hundreds of bees are stinging me from the upper lip to the bottom eye lid. Like you say, it is a 24/7 unrelenting pain.
I am sorry your neurosurgeon didn't care enough to help you through this. It is a risk factor, I was told before the surgery. But, well -when you are in enough pain, you will try just about anything. I thought the slim chance of getting AD was worth the risk. Even knowing what I do now, and suffering with the AD on top of the TN, I would still do it all over again..... I HAD to try!
So many have found relief with the MVD , I am truly sorry you were not among them. I am glad you have found a neurologist who is helping you.
A good supportive doctor is key. I am so sorry for your pain, but again, know that you are not alone Anything I can do to help, just let me know~Nikki |
Nikiki~
Thanks about the name. It is really a good feeling to know that you are not the only one out there with this horrible pain.
Although, I would never wish it on anyone, not even my worst enemy.
I know that this happened for a reason but I know I would not have the surgery if I had known what my outcome would have been. Yet, if I did not know the outcome and being in the state of mind that I was at before the MVD procedure especially if there was a chance for everything to be back to normal, I would have done it because I was so desperate to stop the pain. I am sorry to hear that you suffer from this as well.
Is there anything that you have found to help stop the relenting pain? My Neurologist has me on Dilantin 300mg, Nortriptyline 200mg, OxyContin 10mg every 12 hours, Zoloft 100mg and Ambien 10mg to help me sleep. As of Yesterday he changed my OxyContin, due to there no longer a generic being made, to Methadone 5-10mg a day. I am really having a rough day! I think it is from me stopping the Oxy. Anyways, I hope it will get better. I am trying to stay strong for my 3 children.
Keep in touch,
Rachel
