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

I am taking Dilaudid 8mg 1-2 every 4-6; 2 ambien; and I have a pain pump that has Dilaudid in it apparently set to maximum with balcofen in it (muscle relaxer). At one pt. I was taking 240mg Oxycontin then I had MVD; did a 6 days in rehab (per my psychiatrist); walked out of there with NORCO; within a month I was back to 40mg Oxy 3x per day. I understand that oxycontin is best taken every 8 hrs. based on the bell curve. It starts wearing off after 8.
Ask ur doc about it. He may agree and I know it will likely make u feel lots better. God Bless;

I understand your pain, and your frustration. I ended up with ON and AD trying to find a cure for TN. Now, I have all 3. I did everything that was asked of me, and yet, I ended up in worse pain. It was hard to comes to terms with.

My husband use to say, Doctors only practice medicine... then when he was angry he would say, and I am sick of them practicing on you! It is so hard on those who love us isn't it? *sigh

Are you going to a pain clinic? I have always found more compassion there. It is vital to have a doctor you can talk with openly and honestly with about your pain, and how it is effecting your life. They are out there. I have two wonderful doctors who have helped me over the past 11 years.

WOW, that just hit me, typing that out... 11 years! Back in year one, I remember thinking I couldn't survive the day..... amazing what one can adjust to.

Keep talking ((Julz)) we understand Nikki

Thank u Nikki. I'm so sorry you have to suffer too. Tell me what r u doing for pain? And yes, read below about my pain doc.
I can't begin to tell u that it's ashame I am not the only one except that I feel this doc knew I would end up with AD. I am not the first. His comments that "O, my wife has it" makes u think he knows... he can cure me. Then later, after surgery you hear him talking to one of his India interns and say, "o, my x has that, why do you think she got the house?"

This doctor has a reputation for this as I was told by another Neurosurgeon. If only my husband would have taken 5-6 other Neurosurgeon's opinion; but no, he looked until he could find someone to do an MVD thinking it would help me. I came home; went to detox off Oxycontin and that's when my life was changed by the pain of AD. Now over a year later, I have problems with anger.

My brother in law just had surgery at a VA hospital and they took the wrong kidney and sliced his spleen and had to remove it. He has the kidney with two tumors in it. And, to make things worse, they have an immunity to prosecution.

We pay $30,000 for both of us to have health insurance and my pain doc says
with 7mg/day of Dilaudad per interthecal pain pump and 1.5 of miracaine (this is again a new med they are trying) that this is the best they can do. I have no more options. Nada, Bupkiss, nothing more anyone can do. I welcome any suggestions b/c i have a very large family who loves me. Please help me.