Thoracic Options-Considering

Shebo · #1 (**permalink**) 01-26-2011, 05:17 PM

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.

mmglobal · #2 (**permalink**) 01-26-2011, 11:01 PM

In the US, I like Dr. John Regan. There are some other options I'm pursuing, but not there yet.

Overseas, Bertagnoli in Germany and Pimenta in Brazil are great.

Let us know what you learn.

BTW, I'm having CT guided thoracic costovertebral joint nerve ablations done next week. Very rare, but positively identified the levels w/CT guided injections last month.

Wish me luck,

Mark

(And good luck to you too!)

Shebo · #3 (**permalink**) 01-27-2011, 01:00 AM

Thanks for the info and definitely good luck with your procedure.

dshobbies · #4 (**permalink**) 01-27-2011, 05:48 PM

Funny, before I read Mark's response, I was going to recommend Dr. Regan.

Personally speaking, Dr. Regan and I aren't the best of friends but I think so highly in his knowledge and surgical skill that I have no problem recommending him in the most difficult cases. I don't think you can do much better. However, he's not cheap and no insurance company I know of pays his fees. He will however, and so will Dr. Bertagnoli in Germany, do an internet consult which might be in your best interest before deciding on your next course of action.

Dale

cherylstewart67 · #5 (**permalink**) 01-27-2011, 11:05 PM

200 docs and no one to step up. I love it when they suggest things that you have already done that have NOT worked. It's like, does anyone really read the file? I mean they ask for all of this info and updates, and forms everytime you visit. They answers are all there but they still ask questions. The old saying is something like, "it's a sign of insanity to keep trying the same thing expecting a different result." I have had injections done three times! I most recently did rhizotomy. 50% relief...Problem is most pain mgt. docs will only do 1-2 levels at a time. I haven't received the bill yet, I'll let you know....

Shebo · #6 (**permalink**) 01-31-2011, 02:09 PM

Thanks Dale. I think I will get my info to Dr. Regan to see what he says.

Cheryl, how was the rhizotomy? I just keep looking for answers. It seems silly that you (the patient) has to know almost as much as the doctors. They act shocked when I state some medical facts or ask an informed question. "How do you know that?" Well, I do my research.

Maria · #7 (**permalink**) 01-31-2011, 05:32 PM

I'm off base here however the fact that your case was presented in front of 200 surgeons or physicians and not one had a new or differing recommendation than what you were advised of says to me that these surgeons/physicians don' t deal with thoracic issues (or have the experience) and may not be comfortable suggesting something that goes against the comfort zone of the practice of what they currently practice or their expertise/knowledge.

It may be one thing to verbalize or contemplate a thought of what possibilities are however to make a recommendation may be something none of these physicians/surgeons felt comfortable doing in present company or setting given the legal climate surrounding the medical practice.

This is not to say that someone somwhere doesn't deal with Thoracic issues. I too have seen Dr.Regan although for a consult regarding my lumbar spine and felt he was worth the wait in time that day and a cash pay price. At the time I was squeezed in between several other consults Mark had brought to Dr.Regan that day but for my $ I felt his opinion was every bit as thoughtful if not even much more than one I had my WC insurance paying for (or several). Of course I think because I was going with Mark's direct referral that made a difference as well at least definately in terms of being squeezed in and time spent w/me.

Keep your hopes up and the recommendation perhaps of an online consult sounds like something that might be good as well if an in person one would be out of the question re cost/ability to travel. Wishing you the best with this and please don't be too discouraged. Perhaps these other doctors did you a favor by not giving a recommendation that they didn't really know about or feel comfortable giving. Perhaps best left to those that do know more or are practicing a bit more with this area of the spine.

Shebo · #8 (**permalink**) 02-01-2011, 11:19 PM

Maria,

Thanks for your encouragement. I was upset for a couple of days but I'm back in the game. I'm working on getting my records so I can get them to Dr. Regan. Of course I don't want bad information/ suggestions. It's just disappointing. I just keep on searching.

jsewell · #9 (**permalink**) 02-02-2011, 04:42 AM

I personally was sent to Dr. Regan and last Dec had surgery performed by him. He removed my T-7 painful for years and tested positive by discography disc , started on my other that had tested poitive for being a pain generator T11-12, but could not finish that as my oxygen level dropped to below 50%. The anesthesiologist stopped him. So my lung was inflated i was turned over when he spent hours removing my thoracic hardwear. We never discussed this in the 2 minutes he spent with me (guess i needed to use Mark's name). during surgery i had other problems which he never addressed as he never came to see me. I was put on a respirator and sent to ICU from the PACU. Again another fact over looked by my surgeon.
So i am glad he showed some people skills to you. I would never be able to recommend him. My pain in my upper thoracic area is gone, but after he removed the hardwear in my thoracic spine i ended up less than a year later with kyphosis severe enough to warrant surgery.
Good luck with your decisions and treatment
judy

Maria · #10 (**permalink**) 02-02-2011, 04:17 PM

Did you have hardware in your thoracic spine re childhood or adult onset scoliosis previously?

dshobbies · #11 (**permalink**) 02-02-2011, 05:09 PM

I never said, nor anyone else that I remember, that Dr. Regan was a 'people person'. I did say that his superior surgical skill has earned him an excellent reputation, especially with difficult cases.

Though others have complained of his bedside manner and lack of appearances, I think this is the first post I've read of a disappointing surgical experience though it does sound it was due to other circumstances.

Regardless Judy, I hope you are doing well and what is kyphosis?

Too bad Dr. R doesn't read these posts because if he improved his people and communication skills, along with his gifted hands, he couldn't be beat. Some doctors simply aren't concerned with the hand holding most of us desperately need.

Dale

Hooch · #12 (**permalink**) 02-03-2011, 01:29 AM

Kyphosis is foward curvature of the thoracic spine, 'true' kyphosis (schuermanns) you have (develop?) wedge shaped vertebrae. It can be a very painful condition.

jsewell · #13 (**permalink**) 02-03-2011, 02:18 AM

My hardwear in my thoracic spine was put in by my spine surgeon in Pasadena who was hoping it would not be a hard surgery on me and would stop the pain in that area. My ribs always felt like they were moving and painful.
DRRegan did not discuss removing this hardwear . It had only been in 11 months. I assumed he would have the remove the hardwear around the area of disc removal, but not the whole darn thing and take like 5 hours after i had breathing problems.

I don't need hand holding, just was used to surgeon's who came in each day and more so if there was anything difficult going on.

I had surgery on a friday with DrRegan and called him on the following wed. as he had left his cell # on my phone instead of calling my husband after surgery. I was very upset, getting breathing treatments every 3 hours, really weak and anemic. ANyway after i explained who i was he wanted to know where i was. Did not even know a patient of his was still in the hospital. I gave him a few opportunities to explain himself, once he basically walked out of the exam room he wouild never give me an idea of what happened in the OR and the last time i saw him he said Oh are you the one who lost a lot of blood. None was replaced until a primary care doctor came to adopt me as he called it. I believe a nerve called the phrenic nerve was injured during surgery which caused and is still causing breathing problems.
Sorry to go on about him, but he does have an excellent reputation, he did remove one disc before the nerve was damaged, the other is still hurting.
I just needed him to come and see my incision and talk to me about the complications that occured and how i ended up on a respirator.
judy.

dshobbies · #14 (**permalink**) 02-03-2011, 05:09 PM

I'm sorry if it sounded like I made light of your situation re the hand holding. You needed more in doctoring itself. You had and still have a right to know what happened and why. You have a right to understand why he didn't replace the blood loss. You have a right to know why he removed the hardware he neglected to foretell you about. It does sound like he dropped the ball and his lack of response is surprising. The fact he didn't even know a patient of his was in the hospital???

Suffering is bad enough, suffering at the hands of your surgeon - just shouldn't happen, regardless of ego - regardless of reputation. Perhaps he now fears consequences. It is my understanding that even a doctor apologizing can be construed as wrong doing and thus becomes actionable or evidence.

However, it is doubtful this zebra will change his stripes. He's had ample opportunity. I'm truly sorry you suffered at his hands.

Dale

jsewell · #15 (**permalink**) 02-03-2011, 10:57 PM

Hi Shebo
I'm sorry i don't know your history and just had to speaK My piece of a certain doctor.
Have you had discography to show that all the herniations are pain generators? I know i wanted DrRegan to remove a few more discs that did hurt during discography and he wanted me to have the procedure again before he removed any but the 2 i labeled a 20 out of 10. But my insurance co. would not pay for the first so i knew they would not pay for the second. I had DrRegan come back in and just told him to remove the 2.
My spine surgeon was originally going to do it for me until he thought we have the best in Los Angeles, why should i mess with this. But he would not have done it without the discography that i suggested. Then he had a good friend do the discography, who came into his office the next morning saying it was very painful for me .
I know how horrible that thoracic pain was for me for a few years and don't want anyone to suffer through it as you know the difficulty in finding a surgeon.
My ribs also hurt and had spasms or some other type of sudden pain too. Fortunately that is now gone with my osteotomies and kyphosis and fusion surgery in Sept. and DrRegan did get that upper disc out and is now a pain free area. Yahh!!!!!! Not the lower back yet though.

The group of doctors that your pain management doc presented to, was that pm docs or spine surgeons? I can see why pm docs would have no suggestions. Hard to deal with this pain., I could only reduce it , not get rid of it. And when it was really bad even percocet only touched it a little.
I do want to help
judy

Shebo · #16 (**permalink**) 02-05-2011, 02:38 AM

Judy,

Pain, whatever kind, is very frustrating. It's helpful to hear the good and bad about doctors, procedures and outcomes. I'm at the point where the pain is bad most of the time (where percs don't touch it). My life has completely stopped and I have become a somewhat of a shut in (not of choice). I have to believe there is still hope.

jsewell · #17 (**permalink**) 02-05-2011, 06:55 PM

Shebo
first stay out of motor vehicles!!!!!
I know when i got to the point you are at, i would have done anything to get rid of it. Thus laying on the ground in public. I did not do that at the grocery store, i just left and then stopped going. SEnding the husband has not been good.

Did you have discography to see which discs are causing the pain for sure???Did you send your info to DrRegan? I know as i confusingly mentioned i am not sure he would have seen me and certainly not operated with out that discography. It was painful to say the least so be ready for that. When it was over i fell sound asleep .
AS i said it was the phrenic nerve that controls the diaphram that i believe was injured. I had all kinds of pulmonology tests and they can find nothing wrong with my lungs (after lung surgery untrapped one) just a restricrive process, which was cleared up with my kyphosis surgery. So Regan or whoever did the surgery in that area of T7-8 injured it . Just an accident, probably very rare indeed. I never heard of it happening to anyone else. My upper thoracic horrible pain was not gone immediately , but he did fix that problem. It has been gone for months.
so go for him as surgeon if you can afford it, he is expensive.

I did get him at the end of his accepting blue Cross and i had met my deductable, although over a year later i started getting bills from him.
but go for it.

I do love my spine surgeon here in S. california, but he could not find a thoracic surgeon who was comfortable enough getting to the right spot for him. It ended up that when i had lung surgery i had the thoracic surgeon my doc was going to use and he said he was unsure and told my doc the last week before. So my original surgery was cancelled the day before., Was i in tears.
Well i 'm getting carried away here
Let me knkow what you have done at this point. I hate to hear of people in pain
judy

Shebo · #18 (**permalink**) 02-13-2011, 01:19 AM

JSewell:

You are too funny. The problem with the MVA's is that it was nothing I could change. In all of them, I was sitting in traffic on the highway and someone not paying attention ran right into me.

Anyway, no I haven't had a discogram. I hear it is not fun. My MRI is a year old and prior to the laminectomy. I am assuming that any doctor I send my info to would want something more current. I see my PM doctor in 2 weeks. I was going to ask her for a new MRI and a discogram. My guess is that she won't go for it and I'm not sure what to do from there.

I know how upsetting it is to have your surgery canceled. My neck surgery was canceled the day before. It is hard to get your brain all ready for it and then have to start all over.

Are you out of pain now? I hope so.

jsewell · #19 (**permalink**) 02-13-2011, 03:01 AM

I had my spine surgeon get a doctor he liked for doing discography. That is why my pm doc fired me, he wanted to earn the money from that test. Some how he blamed it on me trying to get meds early!!! Yes by one day because i was flying out of town .
Anyway the discography is no picnic, but it does go by fast. I remember what seemed like a minute later i was outside with the doc and my husband. His car was parked close to ours and i did not want to scratch the paint. I didn;t know whose it was at the time. He told my husband just to put me on the roof racks. So i guess my screaming did not kill his eardrums!! Actually i was only moaning.
I am still recovering from my long osteotomies (2 in thoracic spine , 1 in neck). I also have one fracture in my lower back, just not sure what level it is at. Possibly T11-12 or T12-l1 But with all the recovering i am still in pretty good shape. I don't need to take pain meds every 4 hours any more. Maybe twice a day. The fracture in the lower back is hopefully the pain generator to my hip. My right hip is replaced, but there is a recall on the cup. Not good news there.
Anyway i am very lucky, i made it through those 2 really tough surgeries and am doing relatively well.
I hope you get your info to a good doctor and get some answers and move on getting rid of this pain. I just knew mine was from thoracic and would be shown by discography.
And i have an excellent doctor that always liistenes to me.
judy

Maria · #20 (**permalink**) 02-13-2011, 05:31 PM

Shebo,
Not sure if you're going to have a discogram ordered though just want to state I've had 3 and they certainly weren't as bad as the after math of myelograms "for me."

The pain of the discogram was very sudden and quick and went away quickly. The first discogram I had I had pain for about 3 days afterward like a flare up really. The 2nd one I had the doctor injected Marcaine into the levels after the procedure so it numbed it sort of and I experienced about one day of down time. The 3rd discogram I had a lumbar Epidural after it so again about 1 day downtime.

For me they weren't any big deal except how nervous I was before each one. And then I decided to not have more surgery anyway even though based on all discograms and all opinions more surgery was recommended.

I was wondering about something you stated which sounds like you take Percocet for pain. Is that all that you take? The reason I ask is could it be that there might be another pain medication that would be of greater assistance to you than Percocet? Maybe that's too short acting and just doesn't quite "get it" in terms of helping much. Just wondering...

I too was a shut in re pain once upon a time though it's been a good while since then. It's good to have hope.. things can definately get better as many people have written about here either with surgery or without or with some kind of intervention. Stay hopeful!

Shebo · #21 (**permalink**) 02-16-2011, 01:28 AM

No I have not had a discogram done yet. I will ask my PM about it. I am taking percocet for pain. The PM won't give me anything else. I have tried cymbalta and lyrica but the side effects were to bad to stay on them. Even on the percocets, she keeps trying to give me less every time I see her. As it is, I spend most days in the recliner.

Thanks for your encourangement.

Maria · #22 (**permalink**) 02-16-2011, 11:15 AM

Hmm .. medicine is relatively cheap and implants are relatively expensive or at least a good amount of $ is generated for person implanting them I believe over prescribing medication. I would think a different longer acting pain med would be tried or several before making recommedation for trial for more invasive pain management modalities UNLESS there's a problem with taking medicine for any reason.

Again I don't know your case specifically so I can only speak with regard to my own but I was pretty much bed bound until I started low dose opiod pain medication and ESIs. The opioid pain medication while I don't like the side effect or the physiologic dependency has allowed me a much greater ability to function.

I realize that thoracic disc pain is probably more difficult to treat and perhaps there is less known to the general population of practitioners in terms of treatment however it would seem that offering you a trial on a different medication might be a possibility unless for specific reasons you cannot or it provides no help for thoracic level related pain (which might be a possibility).

Glad you're staying hopeful and please continue to research and seek other opinions/options. Wishing you the best and a life outside the recliner!