Thoracic Options - What to do?

[Shebo]

So, I saw my PM yesterday. What a disappointing visit. She said that the orthopedic surgeon isn't interested in my case (he performed my cervical fusion). She also said that she presented my case to the medical board (?) and out of 200 physicians there were no answers or suggestions. Boy, did that bum me out.
Her three suggestions were to purchase a topical pain cream from a company called TPS. Has anyone tried or heard of this? Suggestion 2 was to have another steriod injection (I have had 2 with no relief). Suggestion 3 was to have a stimulator implanted. She started to say something about what I think was an ablation but then she stopped and went in another direction.
I have 5 thoracic ruptured discs.
I would like to hear from anyone who has tried any of these especially anyone who has thoracic issues.
Of course, I always like to hear from everyone else also.

[KBear]

Sorry, I wish I had some suggestions; but know nothing about thoracic, other than most doctors don't like to operate on it (or won't). If it were me I would start sending my records and images out to doctors all over the country and out of country for opinions. You need to cast an extra wide net, because your unique situation you probably are going to get a lot of no's before a yes. I'd also ask why they say what they do, there may be a great reason for the no, so it would be good to know why.

[Shebo]

KBear:

Thanks for your suggestions. I've read a lot on this site about sending your records to doctors around the country and outside. I am very new here so if you can answer this or direct me to the info, I would appreciate it.

What is the benefit of looking outside the country? It seems very costly.
Does insurance even pay for surgeries outside the country? I know ours doesn't pay much if we go out of state.
How do I get my records? It costs me $25 to send my records from the orthopedic surgeon and $25 to send my records from the PM to another doctor. I could go broke doing this. What's the trick?

You said to ask why they are saying no. That is great advice. The PM said that the orthopedic surgeon would call me and talk to me about this. That was a month ago. I think I'm being ignored. My question was going to be - why 'no'. At least that would give me a starting point. My guess is there is no glory in it. He was all over my cervical fusion. Which turned out beautifully. Stick with what you know.

Boy, am I chatty today!

[KBear]

It varies if insurance will pay for out of country surgery (mine wouldn't even pay for in state surgery.) Out of country is usually cheaper and the doctors have more experience, in many cases, though US doctors are catching up. I would definitely 'buy' your records from all the doctor's offices you have been to. Gonna cost a couple hundred bucks probably, that's what I spent. It's good to have a copy for you though. Then make copies or burn to disc and send out. Some of the doctors offices charge a fee for reviewing your case, while others do it free. You are looking at spending some money though. I honestly don't know of how else you could do it though (not to sound like debbie downer.) I bet some others with more experience in this will pipe in.
Kathy

[Hooch]

Hi Shebo, sorry you are in this spot.

I am no doctor, but I had a quick search of the literature on thoracic discs a few weeks ago, and the consensus seems to be they only touch them for nerve impingement, and uve already had the laminectomy. They don't like to go in 'just for pain' as the outcomes haven't been good. That is why they don't want to touch you. It is running a long way behind lumbar and cervical, there is no clear understanding of the causes or even clear diagnosis of discogenic pain, they have along way to go.

There is a bloke on ISpine called Aaron who has bad thoracoc pain and seems to have researched it quite thoroughly (I think he was set for a fusion with Regan), I think he is still active, have you spoken to him? That broker who runs ispine was told by Pimenta, 'stay away from surgeons', re. his thoracic discs. It is a tuff situation.

If you want to suss out any surgical option you will have to find specialists who will at least consider such an operation, there probably wont be many.

Also,

New to the group - recent AF Vet

He is a good bloke, blown thoracic discs, I'd ask him who he's spoken to.

Good luck.

[Shebo]

That's basically what I have found in my research. "Just pain" to the point I can't leave my recliner most days doesn't get their interest. They don't even want to see me until I can't walk or have other problems. I haven't talked to Aaron. I will search him out. I have talked to Mark and he pointed to Dr. Regan. I did read the post about staying away from surgeons. I'm not necessarily wanting a surgeon. I just want something to get me out of some pain, off of some pain killers and able to do some basic things. I know there are a lot of people on this site with the same problems.

If it will give me some relief, I'm thinking about the stimulator. It makes me nervous. Not many are done for thoracic (which is the care for most everything I find).

Thanks for your suggestions.

[Stitch]

Shebo,
I just joined so I could reply and hopefully offer you some help. I am still in the recovery phase of my surgery. This is most definately not something I would do just for a pain issue. The surgery was the worst pain I have ever endured. The recovery is a year long. I did not have the surgery for pain. The only pain I had was when I bent over, as to sew or garden. So I could just avoid those activities. Unfortunately, I began to deteriorate recently. So I had no other option. I now have chronic daily pain from ordinary activities. I am on muscle relaxers 24/7. I use a TENS unit when it excalates. I was told I was almost a paraplegic from the fall. All of my neurological deficits except the most recent are permanent. When the pain gets to me or I think I'm sick of hooking up to the TENS unit, I remember that I could have been in a wheelchair for the last 17 years. I have a 10 inch scar down the middle of my back. I'm getting ready to get a second opinion on my muscle issue, but they may tell me it was just unavoidable, the thoracic area is a risky area to work in. I'm saying all of that to say this: It's a huge surgery with big risks that I, having been through it, would never go through for just pain. Look at me, I wasn't in daily pain before the surgery. You could actually come out worse. I don't remember how you're controlling your pain. I hope this helps in some way. Be blessed. I know it was God who truly kept me out of a wheelchair all these years.

[Shebo]

Stitch:

It is so nice to hear from you. When did you have your surgery? May I ask what area of the country you are in? I'm really not interested in the surgery. How are you recovering? I just want some relief from this pain. I'm on percocets and flexiril. My pain doctor won't give me any other pain meds. These are not controlling my pain. I'm thinking about getting a second opinion. I use a TENS units and heating pad. I spend my days and some of my nights in a recliner. If I do anything during the day such as set at the desk, do a load of laundry, cook dinner or light cleaning, I won't sleep at night from the pain. The pain is constant and unending. When I absolutely can't stand being in this house any longer, my husband will drive me to a store. I can walk about 100 yards and I'm ready to go back home. I'm not complaining-just painting a picture. The idea of having that surgery is scary and the idea of living the rest of my life in this pain is also scary. I have to believe that there is a reason for all of this. I also have to believe that there are some other answers out there.

I also like to sew. What kind of sewing do you do?

Thank you for your post and I hope you will be feeling better soon.

.

[Stitch]

Hi Shebo,
I'm in Louisiana. I had my surgery last March. My recovery seems to be stalled. I don't think I should be having the muscle problems I'm having. I was off muscle relaxers at 7 weeks. Then I went to PT and I've needed them ever since. I think she messed up by giving me a deep tissue massage. I'm going to ask my primary for a referral to someone to evaluate my situation. My surgeon will not even ask me about them even though my follow up appt was for that reason. He did send me to a different PT. The surgery itself was a success. I had recently lost perianal sensation and I got that back! I had three herniated discs plus bone spurs which is why he did the laminectomy. I have a friend from church who had him for a surgeon and he would not do his thoracic because it was just a pain issue. I'm scheduled for an MRI on Wednesday because I've already started having low back issues. He let me back on my arthritis meds and it has helped a lot, but not totally. I now have trouble sitting for long periods and driving more than 30 mins is out of the question. I just like to do craft sewing. I would like to make simple dresses and such but had to give that up because I couldn't bend over the table to cut out. Now I can't sit at the sewing machine at all, except for short "repairs". My middle back hurts now too, but its possible that this is a muscle issue that won't be resolved until my restrictions are lifted (no bending, lifting or twisting) when the fusion is healed. I know what you mean about simple chores. I do something, lay down on my stomach for a while, do something else, lay down all day long. I was working but my boss got tired of me having to get up from my desk and either walk around or lay down in the conference room. I pray for my husband's health every day. It's all on him now. But he is a good husband and I know how blessed I am. It bothers him to see me have so many difficulties. Especially since he encouraged me to to the thing that caused my fall! Let me know how you're doing.

[KBear]

Welcome to the forum Stitch. I wanted to add that it's pretty common to take 1-2 years to heal from surgery. I thought I'd be all healed up in 6 months and ready to go. Was thinking I'm young and this will be nothing, little did I know that I was a slower healer and it took 18 months to see full recovery. I was worse for 9 months after surgery and on more medication. I hope you see more relief and thank you for sharing.