That is really wonderful news - better than sunshine.:) xx
Totally Awesome!! It's a great start.:) I am happy for youuuu. :))
Wow! That's a 180 from where you were at a few days ago. You would benefit from keeping a journal. Then when the bad days come, you can read back and see how fast things can change for the better. I'm very happy that you have people working in your favor. Keep posting!
SingleMomStrong, I know what it is like to be so young with kids and have pain strike out at you but mine was TMJ which has constant screwdriver ear pain. Resolved with surgery but not the ATN. 20 years remission. Now I am 58, my pain started at 23. Lots of other things have happened to me, too long of a story, but neck and failed back surgeries 13 plus. 3 years ago my ATN resurfaced with neck pain. Back to a neuro, oh yes, tried all the drugs, side effects to harsh. I do take pain medication from my pain doc. I was off narcotics for over 3 years. I remember being so young and only getting 20 codeine pills for tmj. And there were no pain docs in the 80's. I had to get older to get pain meds. But having children to take care of when they were so young did prevent me from taking anything. But I suffered. I have ATN and atypical GN with the bitter taste. Mine is not a surgical solution. There are some good docs in Pittsburgh that do GN surgery. Lots of posts on other pages or archived on this. However, beware, surgery can go great and resolve but sometimes the pain comes back and even worse, same with MVD for TN. Just read someone who had the intermediate nerve cut and no pain but 6 months later the pain is back and worse. There is a youtube video on MVD for geniculate neuralgia.
I am possibly going to see if neurostimulation implanted might help me. Finding someone that does it is the hard part. I have not looked yet as I am still recovering from a big surgery for my lumbar spine. St. Jude's Medical, www.sjm.com., patients, neurostimulation, enter ZIP and get doctors that are doing this within 100 miles. Many are doing spinal cord stimulators. I think there is a member named Christine that is getting good results for her GN.
Meds, I take low doses of baclofen, gabapentin and amytriptiline added for my back pain actually is helping subdue flare ups of the ATN and atypical GN. You do not have a neuro. I have seen a lot of post of others getting a better result using baclofen and amytriptiline plus an anti-convulsant like gabapentin. Tegretrol, lyrica and on and on with the others plus cymbalta side effects got me. I think those who are too sensitive to these stronger drugs do better on a combination of low dosages of 2 or 3 together. You do need a neuro. Do some googling on the drugs and check side effects, you will know which class you do not tolerate. Keep trying. It took me 2 years to get a combination that helps. And yes, I do get narcotics and they do help.
I do feel for you being so young. Yes, there is remission. Sharon
You are NOT crazy. I'm amazed you're still standing. I've had this for years. I have a lot of support -- my husband, a job that gave me flexibility until I had to go on medical disability retirement. Talk about a hit in the stomach when your kids ask you, "Does that mean you're not a lawyer any more?"
NO predictability. I want to go to a book club, a neighbor party, a meeting, but realize I cannot make those promises.
I just hired a patient advocate. My husband and I put together a time line and supporting documents (talk about depressing.) They're going to find THE PERSON -- or people -- who do just this type of surgery. I live in the DC area and the unbelievable neurosurgeon my husband saw -- the guy who just diagnosed my pain -- said he would not do surgery on it because he is not an expert. He shows the nerve to interns when doing surgery on acoustic neuromas, but he is firm that I need to get someone who knows that area. There are much better MRI imaging possible now than even ten years ago. Still, it's a tough place to find things.
If I sound calm it's because I've been ranting and raving and going nuts since the glycerol shot -- did nothing to help, made the pain worse. The things that help are my massage therapist -- met her on a first grade field trip :). Then my PT. And PT with dentist specialist. Keeping my body "aligned" seems to help a bit. Acupuncture from someone good helps, but that's hard to determine in advance and insurance often won't pay. I've tried botox, drugs, drugs and more drugs, meditation, imagery, biofeedback, all of it. When people tell me that it can't be that bad, really, I try to get them to understand... closest analogy is if you've had a root canal. Dentist puts ice on the tooth to see if it's a problem and you jump off the table... I live with that. EVERY DAY.
I swore I'd never have surgery again, but now that it's just getting worse and worse, it's the only option. WHEN my patient navigator finds the people, I'll definitely share. Pittsburgh had Dr. Jennetta - he retired. Dr. Lovett is in Albany. I've heard a few other names.
I would have committed suicide years ago if I did not have my kids. I'm serious. I'm serious that I will not do that because I will not ruin their lives. One is in college and the other a senior in HS. This started before they were born, but it wasn't as bad. My husband has stuck it out... I think going through the records helps him understand. (He's also had his own share of health issues, but those are the kind that are big and scary and then you get better...) I wish.
OMG. I wish I had found all of you years ago. I'm seeing one of my pain docs today mostly so I can get a prescription. I use vyvanse to help with the pain / medication induced ADD -- or whatever. Anything so I can focus enough to drive and read the paper. I have had times lately when the pain is so bad, I've fainted. Now I know when that's coming and sit down before I hit the floor.
KailyKay said:
You are NOT crazy. I'm amazed you're still standing. I've had this for years. I have a lot of support -- my husband, a job that gave me flexibility until I had to go on medical disability retirement. Talk about a hit in the stomach when your kids ask you, "Does that mean you're not a lawyer any more?"
NO predictability. I want to go to a book club, a neighbor party, a meeting, but realize I cannot make those promises.
I just hired a patient advocate. My husband and I put together a time line and supporting documents (talk about depressing.) They're going to find THE PERSON -- or people -- who do just this type of surgery. I live in the DC area and the unbelievable neurosurgeon my husband saw -- the guy who just diagnosed my pain -- said he would not do surgery on it because he is not an expert. He shows the nerve to interns when doing surgery on acoustic neuromas, but he is firm that I need to get someone who knows that area. There are much better MRI imaging possible now than even ten years ago. Still, it's a tough place to find things.
If I sound calm it's because I've been ranting and raving and going nuts since the glycerol shot -- did nothing to help, made the pain worse. The things that help are my massage therapist -- met her on a first grade field trip :). Then my PT. And PT with dentist specialist. Keeping my body "aligned" seems to help a bit. Acupuncture from someone good helps, but that's hard to determine in advance and insurance often won't pay. I've tried botox, drugs, drugs and more drugs, meditation, imagery, biofeedback, all of it. When people tell me that it can't be that bad, really, I try to get them to understand... closest analogy is if you've had a root canal. Dentist puts ice on the tooth to see if it's a problem and you jump off the table... I live with that. EVERY DAY.
I swore I'd never have surgery again, but now that it's just getting worse and worse, it's the only option. WHEN my patient navigator finds the people, I'll definitely share. Pittsburgh had Dr. Jennetta - he retired. Dr. Lovett is in Albany. I've heard a few other names.
I would have committed suicide years ago if I did not have my kids. I'm serious. I'm serious that I will not do that because I will not ruin their lives. One is in college and the other a senior in HS. This started before they were born, but it wasn't as bad. My husband has stuck it out... I think going through the records helps him understand. (He's also had his own share of health issues, but those are the kind that are big and scary and then you get better...) I wish.
OMG. I wish I had found all of you years ago. I'm seeing one of my pain docs today mostly so I can get a prescription. I use vyvanse to help with the pain / medication induced ADD -- or whatever. Anything so I can focus enough to drive and read the paper. I have had times lately when the pain is so bad, I've fainted. Now I know when that's coming and sit down before I hit the floor.
KailyKay, WOW! I am 59 years old and I have been suffering from ATN since I was 23 years old. I did have a remission for almost 20 years but 3 years ago it all came back and added GN to it. I have been through more neck and back surgeries than fingers and toes with nerve injuries and set backs. Almost died 4 times, wish I had but I am still here wearing braces on my legs getting around on a walker and how do I explain I hurt from head to toe but I do.
Enough of me. Your story and your plea for help just hit me like a ton of bricks! Suffering as long as you have suffered is not fair. I know.
And never take your own life ever. My husband took his own life almost 8 years ago over a woman and being an alcoholic with anger management issues which he was at the time turned him into a coward putting a gun to his head and broke his daughter's heart forever! The affect suicide has on children is never healed. I know. I worry about my daughter and my son always. I wonder will they act out because of being abandoned by their father. They were grown but it doesn't matter, children feel abandoned when a parent takes their own life by suicide. They always wonder if they were good enough for that parent to stick around and see how their lives turn out. And then the grandchildren arrived, all 5 of them in the past 5 years! How could he not know the wonder of life itself??
You have a huge challenge ahead of you. OMG, I hope you find some help but I also hope you can bear it if there is no help or it fails to help. I did not mention your husband who stands beside you every day but to be honest as a widow now I realized I can get over losing a spouse. My kids can't get over losing a father.
So this is a message of life and living a life in pain is the life I have and I live it every day. Your message is written with so much drive. I know you can survive. I see so much strength in your words. Sharon