Just curious if anyone here was left with complete numbness and tingling like you just got Novocain from the dentist and it is starting to wear off? I was diagnosed with type 1 and 2 TN and failed all the meds due to severe allergies. I was then told an MVD would fix the pain. I had agreed to the surgery only to have a failed MVD in 2006 that left me with the most dreadful pain ever. My widely known “head” neurosurgeon abandend me post surgery and refused to see me due to the fact I was a failed MVD. I ended up seeing a neurologist in my home town that explained to me that I am now suffering from Anesthesia Dolorosa. I pray that none of you have it, I just don’t know if I am alone with this.
Of note my MVD was twice the length in time told to my hubby and I was in the hospital for a week not 3-4 days. I know have chronic headaches and muscle spasms in the neck.
Is there anyone out there with a similar situation?
Rachel, I’m so sorry to read of your mvd outcome and non-treatment from your NS! Makes me so angry! Unfortunately there are members here who also suffer from AD. If you type it into our search box (above far right) it will show you all posts with anaesthesia dolorosa.
Huge ((( hugs ))) Mimi
Sorry to hear about your failed MVD. I am sure you are frustrated to have elected to have the surgery, only now to suffer more.
I have complete/total numbness on my left side as a result of Cyber Knife surgery. I had Gamma Knife first, which gave me relief for about one month. Then I elected to have Cyber Knife, as it was less intrusive. I now can't feel anything from the neck up. It is pretty depressing. Like you, most meds. have produced terrible side-effects or allergies. SO, I am left with narcotic pain medicine to take the edge off. But nothing has really helped.
Have you considered filing a complaint with your local regulatory agency? The fact that your doctor abandoned you is not o.k. You have rights as a patient, including reporting him/her to DORA, which ensures doctors do their job and follow the rules and regulations of their profession.
I wish you well and hope you feel better soon.
Yep. I have the same exact situation. You need to get a spinal stimulator implant or a peripheral nerve implant. Most pain management specialists or a good neurosurgeon can lead you in the right direction. For AD, its really your only chose ( unless you want invasive surgery like deep brain stimulation etc which you do NOT want)
I had a HECK of a time with my story. MVD in September 2011 that resulted in a stroke and foreign accent syndrome. Then three months later I was left with excruciating, mind blowing pain 24/7 straight in my MOUTH ( right side only, even in what I swear is the teeth). Just last week I got my trial implant put in. Unfortunately, they missed the nerve. Works great on my shoulder though! Research spinal cord stimulators and peripheral nerve stimulators for AD. I have pictures of it on my profile that my hubby took.
Not only was I an MVD flop, I was a spinal stim flop. I go tomorrow for them to try to recapture the pain again. They think my lead may have slipped. This may all sound foregin to you, but if you look it up you will get the idea of what I am saying to you. If they cant caputure my pain with a spinal stim implant, I am going to try the periphernal nerve implant. I am looking at a possible 2 to 3 more surgeries this summer.
The device is NOT a cure, but trust me- when I was on that table ( I was awake) and they turned on the machine, my mouth pain just up and walked away. When the tech shut the machine off ( the stimulation), I begged her to turn it back on. Unfortunately, they tried to give me a bit of "wider" coverage. Their attempt at doing that ended up with them just not being able to stim the correct area again. NOw when I turn my machine on , my shoulder jumps fiercely, even on low amp. I wont be around tomorrow, but PM me. I will be glad to even chat with you on the phone about this.
There is a 1-800 number you can call to find out what doctors in your area implant these little guys. Honestly, believe me- its the only choice for you. It does nothing for numbness ( I am numb too). It takes away the painful part by scrambling the pain signal from your brain and instead replacing it with a stimlation signal like your arm falling asleep. Then you have a new sensation to get used to, but at least it is NOT AD pain which is just suicide in my book.
Check out profile for picture. Trying to post it now.
I too had an MVD that ended up with AD. My question is still does this have anything to do with the return of the TN? I don't like the AD at all, but would still rather deal with this than the Electrical shocks of the TN. Will the TN still return in addition to the AD?
I realize this is one year later than your original comment, but I had a Gamma Knife 15 months ago. Three months after I experienced a spider web type feeling. I remained on 600 mg of Tegretol and was pain free for a year. 13 months after I started to feel numbness in my teeth and right side of my face. It got heavier and heavier almost like a clamp had been placed on my teeth. The pain began shortly thereafter. My husband and I traveled back to Philadelphia and I was told that I now had Trigeminal Neurapathy. A very nice word for Anesthesia Delorosa. If you are still checking in on the site could you give me an update on your situation as I am now considering a nerve block. If it was only numbness I could deal but the ear and teeth pain is over the top. Best wishes.