I am so sick of going around in circles with these doctors that do not know how to treat this disease. I have seen several doctors and the final one which I reluctantly got referred to a pain management doctor. I did not want to get put on pain meds for life but I also do not want to be in this pain for the rest of my life. I am now going in for an appointment with my surgeon and I am going to say to him I need a second surgery because I can not stand this pain anymore. I had my MVD done in Sept of last year and yes it helped with the shocks but I can not find any relief with any meds whatsoever for what in going on in my jaw and mouth.
I just need some reassurance from anyone on here. I can not handle it I cry and go into panic attacks because I cant live like this any longer. I feel like I could just give up and end all of this suffering because all of these doctors keep tossing me around like a hot potato. So here I am in the worst pain of my life and no one can help me at all.
I am just curious. Is there another surgical option for you now that you have had MVD?
I too had an MVD last June for my Type II pain. I went in knowing that I had a 50/50 chance of any kind of success. I felt I had no choice since my head pain (forehead) was so severe I was going in to a hospital clinic to get IV's once a week to bring down my #9-10 pain. I had some success from the surgery. My emergency visits have cut way back, but I still suffer each day with the burning pain.
I too am a patient of a pain clinic. I have made my peace with the fact that I will probably be on pain medicine (right now Tramadol or Percocet when the pain is severe). The great thing now is that for the first time the pain meds take my pain down to a manageable level. Before the surgery, I could pop a Percocet and it would be like eating a Smartie. I am also on Lyrica and Amitriptyline and have just had my first Botox treatment. It has been an incredibly difficult road. Now that I can get my pain down a bit and I am not experiencing 9-10 pain, I am emotionally handling this disease a bit better. I cry a little inside each day when I see my husband go running, or I see how most people take for granted their normal health. I realize now that this disease is most likely going to be my companion throughout my life, so I had better learn to life with it. Divorce isn't possible, unfortunately.
I pray that you can find something to help you at least manage your pain a bit. Don't beat yourself up for having to rely on pain medication. Don't give up. You can do this!
Hi Collette, As unnatural as it sounds, the more you stress the worse it gets. When I saw my neuro last year he said the enemies are stress and pain. Get rid of the stress and it can reduce the pain, get rid of the pain and it can reduce the stress. I've had a few ups and downs since then, but its not a bad mantra. So if you need to get your pain in control do what you need to do - be that taking drugs or having surgery. With the panic attacks, its not surprising - I think I could easily become a hermit when the pains bad. It tends to condition me like Pavlol's dogs - its a learnt response to an unpleasant stimulli. You can reverse this though, a little at a time. Though this disease may be your companion through out life, it will come and go and you will have good times and bad times. Just remember it is a disease and it isn't you. Doctors are fallible and human like the rest of us. Work out what you want from your meeting with the surgeon. If he says yes, if he says no, what you want the next step to be. You are in charge - if they won't play ball, we need to move the game to someone who will. And most importantly remember what a strong wonderful woman you are. Like flute cutey says - you can do this. One step at a time :) Lots of people here holding out there hand to you, so you're not in this alone ever.
Collette, as someone who has fought type 2 24/7 I know how horrible you feel. Please don’t let the pain make you make a decision that could ultimately make you worse. I know I am stepping on some toes here, but between what I have researched, read here, and heard from my Neuro and NeuroSurgeons, there are no other surgical procedures for type 2 that are “destructive” (I.e. damage the nerve) that those of us with type 2 should have. Have you looked into PNS? Take care, I am so sorry you are hurting.
Thanks for your replies. I do appreciate it a lot. I am in terrible pain and I am sick of taking pills that make no difference in my life. they do not even dull the pain not one bit. I feel that I have to suffer this until it breaks me which is everyday. I try to be the best person I can be. Since I had surgery when he went in he "combed" my nerve which destroyed my tongue on the right side and feels like I have razor blades in there every moment of the day then add the type 2 24/7 pain and I am ready to quit. Then I go see all these doctors and specialist and they all say the same thing to me. I have no idea how to treat you or I am not skilled enough to help you. I never thought I would ever hear that from a doctor but I have many times over when dealing with this disease. I do not respond to any medication and these doctors are looking at me like I am a crazy person. I am about to be crazy if I do not get this under control but how can when nothing helps????
Try looking up the thread "Little Helps" and make sure you've read the book Striking Back. These offer some non-pharmaceutical things to try. And sometimes it takes several of these little things together to make a dent. With our issues, sometimes we have to throw everything & the kitchen sink at the problem before we find help. Don't give up yet! It is frustrating, and it gets old, but there is some help for most sufferers. I printed up posts from people who suffered for months & sometimes years before finding different things that made a difference in the pain level. This gave me hope to keep trying until I found some things to help. Read everything you can get your hands on, remember that we're all different (in terms of what works & doesn't), but don't give up. Hang in there!
You know...Its a nightmare when this happens...you do feel like giving up...I have many times in the past few years...but there is a light at the end of the tunnel...Stress...that is a major factor in what we have.....I know it sounds corny.....but its true....you have to try and not stress about this...I too have 24/7 pain.....I take a cocktail of drugs every day that would fall a horse....but I have worked through this...because ...frankly...what choice do you have......what dosnt kill you makes you stronger...and there was just no way I was going to give in to it...especially when a surgeon severed my nerve.....gave me AD...which I have no forever...as well as ATN....I mean...really.!!!!.....how pissed off was I.....but I have come through it...I have my bad days when I think whats the point...but these are few and far between now......I do take a lot of medication...I know its not for every one.....but when the pain is really bad...I take morphine as well...I am most likely a drug addict now.....something I fought long and hard to never let my children be...but hey...you know what...I dont care.....This is for recreation...Its to lead as normal life as I can with the most severe pain Iv ever known.....and now to be fair....I prob shouldnt say this...but Friday and Saturday night...I end the night with a bottle of wine...So I really dont feel it and sleep like a baby....I can understand why some people turn to alcohol over this hated disease...but Monday to Thursday I never touch a drop.....you have to keep positive...because sadly...you cant alter what we have....you take care xxxx
You made me smile Carol! It is people like you that help all of us "make sense" of this dreaded disease. You aren't kidding, what didn't kill you HAS made you stronger. From one ATN sufferer to another, "Thank you!". I am just so grateful for this site. It makes me feel less alone in a world of "normal" people.
Carol Harmer said:
You know...Its a nightmare when this happens...you do feel like giving up...I have many times in the past few years...but there is a light at the end of the tunnel...Stress...that is a major factor in what we have.....I know it sounds corny.....but its true....you have to try and not stress about this...I too have 24/7 pain.....I take a cocktail of drugs every day that would fall a horse....but I have worked through this...because ...frankly...what choice do you have......what dosnt kill you makes you stronger...and there was just no way I was going to give in to it...especially when a surgeon severed my nerve.....gave me AD...which I have no forever...as well as ATN....I mean...really.!!!!.....how pissed off was I.....but I have come through it...I have my bad days when I think whats the point...but these are few and far between now......I do take a lot of medication...I know its not for every one.....but when the pain is really bad...I take morphine as well...I am most likely a drug addict now.....something I fought long and hard to never let my children be...but hey...you know what...I dont care.....This is for recreation...Its to lead as normal life as I can with the most severe pain Iv ever known.....and now to be fair....I prob shouldnt say this...but Friday and Saturday night...I end the night with a bottle of wine...So I really dont feel it and sleep like a baby....I can understand why some people turn to alcohol over this hated disease...but Monday to Thursday I never touch a drop.....you have to keep positive...because sadly...you cant alter what we have....you take care xxxx
Wow, reading this string I realize that some days there are people out there hanging on just like me. I wish for everyone peace and blessings as we make it from day to day. And… Yes , wine does help!