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Old 08-16-2010, 10:01 PM #31
Kewlbutterfly Kewlbutterfly is offline
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Thumbs up Just an update

Sorry, it's been a while since I have posted in here. Life sure gets busy. Today, is a great day, the AD is better controlled now than it ever has been although I still have days where the AD gets to me I try to keep myself busy enough to distract me from the pain. I am seeing a Neurologist that is very understanding and supportive. The meds now that seem to work the best for me over the past 2 years have been: Dilantin 300mg, Nortriptyline 200mg, Vitamin E 1000mg, Zoloft 100mg, Morphine Sulfate 15mg twice a day (my doctor and I have agreed not to ever increase this med) and I take Ambien 10mg to help with insomnia and anxiety of the pain. I am able to go to work full time and keep up with my hubby and three kids. I am still however never gong to to a "Teaching Hospital" again.

I pray everyday for all of you who are suffering with AD. I am really lucky to have the love and support of my family and friends this has been a rough battle. Going through this has taught me I can handle anything God has sent my way. Thank you for all your posts.

Sending happy thoughts and support your way~
Rachel
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Old 10-22-2010, 11:38 PM #32
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Quote:
Originally Posted by taylorschott View Post
If I had AD, I would try mirror therapy before anything else. No drugs, no surgery risk. And it controls pain better than anything else we've tried.
You mentioned in a different thread that you describe your success in your blog. Where is it located? Thank you for the bit of hope you've given me.
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Old 10-22-2010, 11:46 PM #33
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Quote:
Originally Posted by taylorschott View Post
We have a blog that describes what we did for his face.
Hello painpaul and welcome to NeuroTalk.

I don't know if you noticed, but taylorschott posted about his blog back on 09-09-2008.

I did look, but the last time they signed into NT was the next day. Just letting you know because they quite probably will not see your question.

Hopefully you will get replies from others, however.... so I hope you soon get some answers to your concerns.
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Old 10-24-2010, 09:51 PM #34
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I am new to this forum but have seen many of you on the TNA web site forums. God bless you for posting and giving the rest of us some clues on how to find help- especially calewark and BMW who have pointed me to PNS/SCS. After four sinus surgeries before successful diagnosis of TN Type 2 at OHSU in 2006, 3 years of many meds including trileptal and Lyrica, SRS at UCLA in 2008 with zero success, MVD in L.A. in 2009 that cleared the original pain but created all new deafferention pain (aka, Anesthesia Dolorosa) and started Fentanyl plus hydrocodone in 2010, I am searching for doctors who perform PNS/SCS. Found many doctors who do PNS/SCS on the Medtronic, Boston Scieentific, etc. web sites but they all use it only below the neck (mainly spinal pain). My pain doctor is going to ask the Boston Scientific sales rep and I have sent questions to all the manufacturers web sites about doctors who use these devices for face pain. Now to the point, with the correct words in the search engine today, here is a new online TN diagnostic questionnaire from where I got my original diagnosis after MRI and physical
examine by Dr. Kim Burchiel and Dr. Andrew Zecast at Oregon Health & Science University (OHSU). These doctors are the west coast leaders like Dr. Peter Janetta is an east coast leader in treating TN. And, Burchiel makes presentations and publishes at the TNA conferences.
I am new to this forum but have seen many of you on the TNA web site forums. God bless you for posting and giving the rest of us some clues on how to find help- especially calewark and BMW who have pointed me to PNS/SCS. After four sinus surgeries before successful diagnosis of TN Type 2 at OHSU in 2006, 3 years of many meds including trileptal and Lyrica, SRS at UCLA in 2008 with zero success, MVD in L.A. in 2009 that cleared the original pain but created all new deafferention pain (aka Anesthesia Dolorosa) and started Fentanyl plus hydrocodone in 2010, I am searching for doctors who perform PNS/SCS. Found

Many doctors do PNS/SCS on the Medtronic, Boston Scieentific, etc. web sites but they all use it only below the neck (mainly spinal pain). My pain doctor is going to ask the Boston Scientific sales rep and I have sent questions to all the manufacturers web sites about doctors who use these devices for face pain. Now to the point, with the correct words in the search engine today, here is a new online TN diagnostic questionnaire from where I got my original diagnosis after MRI and physical examine by Dr. Kim Burchiel and Dr. Andrew Zecast at Oregon Health & Science University (OHSU).

These doctors are the west coast leaders like Dr. Peter Janetta is an east coast leader in treating TN. And, he makes presentations and publishes at the TNA conferences. Since I am a new member I caqnnot post the web sites but you can find them with a search on *** then school-of-medicine then neurosurgery or neurological-conditions for info about electrical stimulation and other treatments for TN. Definitely try the very informative online TN diagnostic questionnaire (you have to submit the questionaire to get excellent explanations of the types of TN and suggested treatments of each).

Will post again if or as I find more doctors who perform PNS/SCS for face pain.

Last edited by Koala77; 10-24-2010 at 10:31 PM. Reason: Weblink removed as per NT guidelines
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Old 12-10-2010, 05:00 PM #35
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Default Anesthesia Dolorosa

In answer to some posts. I am new here. I started having Trigeminal Neuralgia pain when I was 52. I am now 60. I suffered and was on all kinds of medication. I was then set up for a Gamma Knife surgery. This worked for 18 months and then the pain returned. My neurosurgeon in all of his omnipotent wisdom determined that the best course of action was a microvascular decompression. He failed to mention, that since I had already had Gamma Knife, this might damage my nerve. Well it did. For three years now I have suffered with Anesthesia Dolorosa. I have been in pain management all of that time. The surgery left me deaf in my left ear, with immense tongue pain on the left side. I am fortunate that I have found a wonderfully compassionate and skilled pain managment doctor. I have recently gone through a trial of having a wire run along my lower jaw and attached to a control device that stimulates the nerve, thereby giving me relief. It is working so well that next Tuesday I will have the permanent implant put in my chest. I am detoxing from morphine and I find that I want to live again. I had given up and wished I would die. My suggestion to anybody with this, is to find a good pain managment doctor. If they don't help you, find another. And most of all; do not ever let another neurosurgeon PRACTICE on you. My best to all who suffer with this disease.
p.s. this device is made by St. Judes
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Old 12-11-2010, 08:39 AM #36
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WELCOME Crandies

I was wondering if you would share your story on my thread above ..it is about stimulation and anything your share would be helpful to so many others. here is the link
http://neurotalk.psychcentral.com/thread124048.html
Thank You and please know you are in my prayers for everything to be successfully with your final implant and healing process.
PEACE
BMW ...Tina
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Old 01-08-2011, 07:04 PM #37
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I can relate SOOOOOO well to just about all of you. I am new to the forum, so this is my first post. I have trigeminal neuralgia which was treated over the past few years with nerve blocks (pain had returned before I got home from pain mgmt clinic),gamma knife surgery, also known as stereotactic something(can't remember),twice.Each time it worked for about 2-3 months, then returned in another branch of the nerve. After that I had radiofrequency lesioning to the nerve, which worked right after the surgery and into the next day. After that it crescendoed quickly and violently to a level I had not known prior to that. Went to see the anesthesiologist(!!!) that put the huge needle in my face and dug it around in my cheek during which I was awake off and on,(it had hurt so badly it was like sheer terror), and he told me I had anesthesia dolorosa.Since then I have only had infusions of lidocaine, now every 2-3 mos., and I have not heard anyone else here say they have had that.He has suggested that nerve stimulator you have talked about, Burntmarshmallow. I have finally decided to try it. Initially, stimulating that area was the LAST thing I wanted to do, but after reading all this, I understand better about how it can work, and I want my life back more than I can say.I am a registered nurse who cannot work because of the pain and med effects. I love what I do and miss it so much.I am taking Lyrica, among many other things, but it is the one that has taken my ability to think well away. My memory is awful, I can't concentrate well, can't process information as quickly or as well in general,I don't have any sense of the passage of time, can't make decisions well, and am in a fog sometimes. I do take a stimulant drug to counteract these things, Vyvanse. My question to you is: does Medicare pay for the surgery and the stimulator, since it is an off-label area in which to use the device?
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Old 01-21-2011, 09:47 PM #38
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Frown Anesthesia Dolorosa

You are not alone. I have anesthesia dolorosa. I've had Gamma Knife and a failed MVD for treatment trigeminal neuralgia. My neurosurgeon told me the nerve just needed to heal. That was ten years ago. They really dont want to be reminded of their failures. So the sooner you disappear the better they feel. I have seen several neurologists since then who love to prescribe drugs. Many of them I had already tried but to be a compliant patient I tried again. I keep hoping a new treatment will appear. I have never been officially given the diagnosis of anesthesia dolorosa. Its like they don't want to say it. Why is that? Why did I have to read about it in a forum and figure it out myself? More than anything I want validation. That what happened to me was awful. That life is unfair. Would I feel better? Maybe......maybe not.
Im sorry you have AD. I wish you the best of luck.

QUOTE=Kewlbutterfly;345657]Hey all,

Long time since I last posted in here but, I finally got the official diagnosis. Anesthesia Dolorosa.

I don't know if you all remember that I had an MVD procedure done in Aug of 2006 and it had failed leaving me in more pain. My Neurologist now is Neuropathic Pain Management Specialist, he told me that this was caused from my Neurosurgeon damaging my trigeminal nerve during the MVD procedure. Now, I am in constant pain like when you go to the dentist and the numbing stuff starts to wear off but this never does, it feels like pins and needles yet it never ends. My Neurosurgeon wanted nothing to do with me after the surgery and now I know why! He kept telling me to "give it more time to heal". The bad thing is I have no "physical" way to prove it because you can't physically see the damage. (It's not like he cut the wrong arm off, it is worse no one can see my pain) Anyways, I am posting to see if there are any other people out there that have had the same thing happen to them.

Anyone else out there that is suffering from Anesthesia Dolorosa after a MVD procedure? I would love to know that I am not alone!!![/QUOTE]
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Old 01-25-2011, 07:26 PM #39
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Default Hold your Head up! I have AD as well - we can be strong

Quote:
Originally Posted by Kewlbutterfly View Post
Hey all,

Long time since I last posted in here but, I finally got the official diagnosis. Anesthesia Dolorosa.

I don't know if you all remember that I had an MVD procedure done in Aug of 2006 and it had failed leaving me in more pain. My Neurologist now is Neuropathic Pain Management Specialist, he told me that this was caused from my Neurosurgeon damaging my trigeminal nerve during the MVD procedure. Now, I am in constant pain like when you go to the dentist and the numbing stuff starts to wear off but this never does, it feels like pins and needles yet it never ends. My Neurosurgeon wanted nothing to do with me after the surgery and now I know why! He kept telling me to "give it more time to heal". The bad thing is I have no "physical" way to prove it because you can't physically see the damage. (It's not like he cut the wrong arm off, it is worse no one can see my pain) Anyways, I am posting to see if there are any other people out there that have had the same thing happen to them.

Anyone else out there that is suffering from Anesthesia Dolorosa after a MVD procedure? I would love to know that I am not alone!!!
I had mine - MVD done in the year 2000 - they assured me that they knew what they were doing NOT!! Nothing showed in 4 CT scans, 5 MRIs and an Angiogram and they still did it!! After the operation was over I woke with the right side of my face severly paralized - to the point were I was drooling and couldn't close my eye. I kept doing the work out that the gave me and eventually most of it came back you can still see some of the problem. Because of the damage the doctor did no one will touch me syrgically anymore and my only option is pain killers - YEAH! And I am being sarcastic on that. My regular GP retired so I've been through a series of three who are all convinced that I either don't hurt as much as I say I do or I'm a drug addict looking for my next score. Nobody will take the time to LISTEN to me and help me - all they see is the drugs that we all take and it just frustrates me to know end!!! You are not alone - you AD was more than likely caused my your surgeon and if you can I would advice you to sue for mal-practice. Good luck - and the BEST piece of advice is find a great General doctor so you don't get further screwed over like I am right now.
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Old 01-26-2011, 05:15 PM #40
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@saidesmom Yes I know a few who have gotten the PNS paid for by Medicare . If it is last resort and helps it is less costly in the long run then meds. You ALWAYS have to go threw psyc testing and stuff before your are approved for trial weather insurance or Medicare or you yourself pays.. EVERYONE has to have that testing done.
Mine was from trailer truck hitting me from behind I had to sue the company and went threw trial by jury.. but The stim gave me my life back.

@Cat Parlee Are you saying that you have no other options ie no other surgeries
so your at end of line and meds are the only way to mannage the pain monster?? Me too My right lower was snapped in half and the plates to hold each side of jaw the one on the right side way to close to the break.. so MVD Gamma all that were no longer an option then once any of the meds stopped or didnt help at all... I was first to Try the PNS ... you should think about looking int it yourself. I am NOT pain free but it helps lower my pain and just bringing it down a notch or two is a blessing.
if ya read the stickies up top here you will see it isnt such a big operation not like mvd or anything. perhaps ask your doc about it. it is used for ad atypical bi lat etc... just a thought. I want to give you hope as you need that So DONT GIVE UP!!!! your not alone we are here for you and will help you any way we can.
endless Low pain to you all.
PEACE
BMW

P.S. it is next to impossible to sue even if it was the mvd surgery that caused the permante damage and the AD.. as you sign that damn paper before any surgery sayin you understand the possibility of risks including death. my heart goes out to you guys. Hugs and my prayers.
that just bring me back to my thoughts I have had FOR YEARS NOW of having the PNS out there more available to others BEFORE having MVD. ugh some day some day I wont give up on that not ever .
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