Pain Help

[Rachel Leah]

I posted my question somewhere else under "radiofrequency neurotomy" and maybe my title threw people for a loop :) , but I'm really curious as to the reason why no one has replied back to me. I've just recently joined this forum and find it somewhat addicting -- it's fabulous there is a place I can go and read about other people who are like me!

Anyways, I deal with some pretty high-level pain -- mainly 90% of my day --and I would say on a pain scale level between 3-7 depending on my activity. It's mainly due to my degenerative discs -- a result of transistion syndrom from a fusion I had back in 1993 for a 75 degree curve (I'm now 27). You know, I had no idea this "transition syndrom" existed until an appointment with a new orthopod a couple weeks ago.

My pain doesn't necessarily have complete control over me because I've been leaving with it for years, but it is getting worse and I'm now to the point where it's just too much and my quality of life is going downhill fast.

So, I made the appointment with this orthopod, Dr. Herzog in Saratoga Springs, and he said that I also have Kyphosis, but only a 26 degree curve. But on top of the Kyphosis, which causes pain, I have my degenerative discs, bulging discs, and arthritis in my upper spine above my original fusion. I went into this appointment wholeheartedly expecting Dr. H to say I needed another spinal fusion. But I was astounded to hear him say that was the very very last thing that he would do. He reasoned that another fusion above my existing one, especially at my age of 27, would just cause the transition syndrom to eventually occur above the second fusion and I'd be in the same boat I am now further down the road. Makes sense.

Dr. H said that it's completly normal for people who have had fusions to be where I am at now with arthritis and the disc issues. It was so crazy to hear that because I always thought of a fusion as a fix and not something that would cause issues later on. I love that I don't feel any pain in my fusion area -- but I guess the cost of that is the other areas are overly stressed.

So, Dr Herzog reccomended I get something called a radiofrequency neurotomy: http://www.spine-health.com/topics/conserv/radio/radio01.html . I guess they go in and burn the nerve where the pain is generating from. It's not a end-all fix, the nerve will grow back. The success rate seems to be fairly high.

Has no one in this forum had one of these? I know so many of us have such awful pain, it's hard for me to think that this type of procedure hasn't been tried by more.

Dr. H also said he thought that the FDA will approve disc replacements within a year. I'll be the first to sign up!

So, for those who have had spinal fusions and now have pain, are you finding it's from disc degeneration and other related issues like arthritis? Anyone had this radiofrequency procedure?

I appreciate any and all comments-- I'd love some insight.

Thank you!
Rachel

1990-1993: Boston Brace 23 hours a day
1993: Spinal Fusion T3-L7, 75 degrees, Dr. Emans Boston Children's Hospital
1998: Rod Removal, Dr. Emans Boston Children's Hospital

[LindaRacine]

Hi Rachel...

Please get a second opinion before proceeding. You can find a list of specialists here:

http://www.srs.org/directory/directory.asp

Several things concern me about your post. First, kyphosis is considered normal if it's between 20 and 50 degrees. Second, I have not read anything about people developing transition syndrome above a prior transition syndrome. If the proper fusion levels are chosen, this just should not happen. Third, Dr. Herzog is not a member of the Scoliosis Research Society. While he may be a fabulous doctor, I would be concerned that he doesn't treat a lot of scoliosis patients.

I think it's important to find a specialist who treats a lot of patients with prior scoliosis fusions. That could be a difficult task. You can find a lot of people who are dealing with similar issues (and who may have recommendations for specific doctors) here:

http://health.groups.yahoo.com/group/Flatback_Revised/

Good luck!

Regards,
Linda

[Rachel Leah]

Thank you so much Linda, this is exactly the type of feedback that I was hoping for.

My first question is -- if my Kyphosis is at 26, it's obviously not an issue and it's not what causes my pain, is this correct to assume? But also, why do I feel like I'm hunched forward and that it's getting progressive? If it was normal wouldn't I not be hunched over?

Second, why wouldn't transition syndrome develop over a second fusion? Can you give me some more information on why it should not happen? Why does choosing the proper levels insure that it won't happen? Aren't the proper levels chosen at the time of the first fusion? The way Dr. H described it to me, is that a fusion does not absorb your movement, therefore the areas above and below take on that extra stress, which in turn causes disc degeneration, etc. So, if I was to be fused again, why wouldn't the same thing happend this time around?

You are very right about finding a doctor who is a scoliosis doc.

Again, thank you so much Linda for your help, I appreciate it very much!

Rachel

[Theresa]

Rachel,

My pain managment doctor suggested that I have one of the "radiofrequency" things done. When I looked at the link that you had in your message it used the name that my doctor used : a medial branch neurotomy. He talked to my spine surgeon and us and we all decided that the risks were to high to chance it when it might not even work. We had tried trigger point injections and they only lasted about a week or so. The biggest risk that we were all concerned about was introducing an infection into my spine and the surronding areas including the rods.

[structural75]

Rachel,

Your Dr. is correct about transition syndrome occurring again above the second fusion and his reasoning regarding movement/fixation was correct. When you immobilize one segment of the spine the adjacent segments will experience an increase in torsion and generalized movement... simply because forces/movement is not being dispersed throughout ALL of the segments evenly, they don't share the load and range of motion but rather the same load and range gets transfered into fewer mobile segments, creating a particular vulnerability at the 'transition' zone.

So yes, transition zones can just as likely occur above another.... regardless of 'proper fusion levels'. The level will help to some degree but it certainly won't prevent it from happening.

There's no reason a 26 degree kyphosis couldn't cause pain. The number is completely irrelevant in regards to pain. There are people with serious thoracic pain with 5 degree kyphosis. As for the hunching, I'd follow your gut feeling and internal perception on the matter. If you feel as though you're hunched over, you probably are and that's not going to serve you well by any means in the present or future. It may in fact be contributing to your pain. Don't let a set of numbers tell you what's "normal" or 'acceptable'. Let your body tell you that. (50 degrees is not a healthy kyphotic curve by any stretch of the imagination, regardless of what Dr. claims it to be normal.)

Best wishes Rachel
Structural75

[LindaRacine]

Hi Rachel...

I have no desire to get into it with Structural, so if you want to continue our discussion, please feel free to send me a private message.

Good luck.

Regards,
Linda

[structural75]

Linda,

There's nothing to get into Linda... Bringing your dictatorship into the private sector doesn't excuse you from the fact that you incorrectly questioned the integrity and professional opinion of her Dr.. Second opinions are fine, but the Dr.'s observations and comments were actually quite accurate and I'd be disappointed if she consulted with someone on your 'network' and they told her not to worry... only to realize the harsh reality first-hand.

[Michael Barga]

The issues you are dealing with now are one of the reasons my son has said no to having fusion done right now. He is 21.His and our reasoning ( right for him but maybe not right for others or maybe not even medically right, I do not want to get people upset at me!) is (((Why should I have surgery now when so many people have to get revision surgery or surgeries, has disk problems above or below the fusion and etc or still has pain after surgery, why not wait until I have pain or other issues and maybe I will have less surgeries in the long run))).Please remember my son is not dealing with any pain issues right now and no medical reason why to have surgery now, he does have a large curve though. We did tell him surgery is harder as one ages and correction might not be as good! Of course his/our ... ( I use the term his/our because we do a lot of thinking outloud and throwing ideas back and forth between us) ..answer was, remember he is 21((( Well, Mom if you have to have more surgeries ...correction wasn't that good or permanent anyway or the surgery caused other parts to wear out.)) We did point blank ask the surgeon if he could say Michael's outcome would be better off if he decided on surgery and he said he could not say but he recommended having the surgery. Please dont think I am pro surgery or against it,I believe in some cases it is/was life saving.....I am just stating our thoughts. I have been noticing some ( fussing) on different threads so please realize I am just a plain old Mom... no medical degrees... not a Scoliosis expert, only been dealing with it for a month..we are just asking questions and thinking outloud on here..we are not against/for/debating/arguing any point. I just do a whole lot of crying at night.

[structural75]

I'm sorry you're having to go through this process... . Please feel free to think outloud and ponder any and all thoughts... My personal apologies for the "fussing" going on around here lately. I'm not here to 'agitate' anyone, but rather to allow the rest of us a chance to explore ALL of the options without being misguided by unqualified individuals with personal hang-ups.

Please don't feel the need to walk on eggshells... share freely and hopefully certain folks will keep an open mind towards all of the options available that you feel are appropriate for yourselves..

Best Wishes

[Michael Barga]

Thank you. I used to attend La Leche League meetings and a wise Mom always said take what you can use from our meetings and just leave the rest.Good advice then and good advice now.I think it is great to share all ideas, I may not agree or use all ideas but it is nice to hear the choices others have made or are going thru.....I just do not want to offend anyone. Guess some fussing goes along with being human. :o My husband would agree today.( 2 cars broke down..lots of fussing going on)

[yellowbelly]

Hi! I am a new member myself. I just read your post about your pain level. Like you I too was blown over to find out the Harrington rod surgery which I had in 1975 was not a cure all. I have been having a lot of pain the last three years or so. I was told three vertebrae in my lumbar spine fused themselves to my pelvis. I have arthritis everywhere and I have not had confirmation it is in my spine but when I get sick or cold the inflamation goes right to my spine and times like that it is agonizing. My left leg is permanently 1/4 inch shorter then the other. They recently added a lift to my shoe but even with the lift it is still 1/4 inch off. I have a lot of pain in my left hip and butt bones in back. In the last six months I have had moments of numbness in my lower back and my neck is in constant pain. I have disc degeneration in my back and pain in my shoulder blades. A lot of times i have sciatic pain in my left leg as well. I go to the chiropractor quite frequently. So many times it feels like my left hip is broken. I feel sort of disillusioned since the only restrictions after the body cast for eight months. It was plaster in those days I was told not to jump on the trampoline or do gymnastics. Now my restrictions are far greater. No lifting my arms over my head. No bending forward. No running. When I tried to run it hurt my spine so bad I wanted to die. When I was a freshman in 75 I had the surgery and i grew six inches on the operating table. The post surgical cast was far more painful then the actual surgery. Prior to my surgery Dr. Walter Bobechko I believe from Montreal Canada was checking into a pacemaker to straighten the curves. You may also want to try a tens unit. Tens give you a shock that somehow stops the pain. I wish you the best. I find also that when I lay flat on my back it hurts real bad for about five minutes but then slight repositioning takes the pain away. I used to be able to lay on my side but now I have to lay on my back 99 percent of the time. I was told by one chiropractor never to lay on my left side. As the condition has worsened I find it is extremely painful to lay on either side for more then five minutes at a time. But my curvature went from sixty eight to twenty three following surgery and at age twenty one it increased to forty. I really hate the rib hump. I would give anything to have an even back like everyone else does. I was diagnosed with idiopathic scoliosis but I wonder if mine is more neuromuscular because as a baby I could not sit up, crawl or walk when I was developmentally supposed to. I could not even hold my head up. Then I was diagnosed with colitis and macular degeneration and iritis. I am 46 now. I have had the macular since i was twenty. My eye specialist said people with arthritis issues are prone to get iritis. So I really wonder if my scoliosis was orthopedic. I even have restrictions to not sit with my knees higher then my pelvis. I believe when I turn sixty it will be a snap since I have problems more related to the elderly already. There is nothing that would surprise me about my body anymore. Anyone else have any of the problems I mentioned? Yellowbelly

[Jacque's Mom]

Hi there. Yes I have lots of the ailments you are experiencing. I had the surgery done in 1981, pain free until 1997 then, neck pain, shoulder blade pain, hip pain, etc. I too thought I would be free of back pain after the surgery, as that's how my doctor presented it. I am grateful I was able to have those pain free years as being so young and suffering was no way of life. I am presently in pain management for the past four years and have been able to keep the pain at a tolerable level. Take care, LYNN

[Rachel Leah]

Wow, I'm so fantastically happy that you all have replied back to me. I haven't even had a chance to read all of the posts, but I plan on doing so asap. I'll do that and them come back with some responses. I've been busy the past few days and haven't had a chance to check in.

Thank you!

[Rachel Leah]

I can understand where you son is coming from and I'm so sorry you do so much crying at night. I always knew, with everything I've gone through with my back, however hard it is on me, it's ten times harder on my parents. I wish I could just not have this problem anymore so that my Mom & Dad won't have to worry about me anymore. I can deal with, I'm strong enough, but it's funny, as I get older (now 27) I feel myself wanting to protect my parents more and more.

Anyways -- completely side-tracked there for a second. If your son's curve is that large, but he wants to hold off on surgery, like I said, I can not blame him for that decison -- because he's not having any pain and there is no immediate threat to his health. Have you gone for a second opionon?


The issues you are dealing with now are one of the reasons my son has said no to having fusion done right now. He is 21.His and our reasoning ( right for him but maybe not right for others or maybe not even medically right, I do not want to get people upset at me!) is (((Why should I have surgery now when so many people have to get revision surgery or surgeries, has disk problems above or below the fusion and etc or still has pain after surgery, why not wait until I have pain or other issues and maybe I will have less surgeries in the long run))).Please remember my son is not dealing with any pain issues right now and no medical reason why to have surgery now, he does have a large curve though. We did tell him surgery is harder as one ages and correction might not be as good! Of course his/our ... ( I use the term his/our because we do a lot of thinking outloud and throwing ideas back and forth between us) ..answer was, remember he is 21((( Well, Mom if you have to have more surgeries ...correction wasn't that good or permanent anyway or the surgery caused other parts to wear out.)) We did point blank ask the surgeon if he could say Michael's outcome would be better off if he decided on surgery and he said he could not say but he recommended having the surgery. Please dont think I am pro surgery or against it,I believe in some cases it is/was life saving.....I am just stating our thoughts. I have been noticing some ( fussing) on different threads so please realize I am just a plain old Mom... no medical degrees... not a Scoliosis expert, only been dealing with it for a month..we are just asking questions and thinking outloud on here..we are not against/for/debating/arguing any point. I just do a whole lot of crying at night.

[Michael Barga]

Rachel Leah, I guess where there is love ...one wants to protect, either way ...child/parent or parent/ child.Michael has not seen another surgeon.He has agreed to another x ray later. So far he has no other physical problems,actually very healthy, only went to see family doctor because I noticed his shoulder..and he referred us to a ortho surgeon.The surgeon said there was no immediate reason and also mentioned since he was 21, no Dr would do the surgery unless he was very sure he wanted it.He has no pain, never has, works 40 hours a week doing heavy lifting.I am so sorry to hear about the pain issues you and others are having.I think that is why the thought of surgery scares him, the thought of possible pain later or complications, when you have none now.Which he is young and he may have problems later, but you are young too, my heart justs aches for all on here.I cry and pray for all the sons and daughters now! Michael looked me in the eyes and said ...Mom I am fine, do not worry, I am just a little crooked. Oh I wish it was that easy not to worry. I do know we have a lot to be thankful for, so many are dealing with other problems and surgeries along with the Scoliosis.I really hope you find something or someone who can help you with the pain.Please keep trying and asking for help.You may find something works for you that did not work for others or maybe a combination of ideas/meds that will help.Do not give up to get some pain relief!

[Karen Ocker]

One of the problems with waiting till later is that the vertebrae themselves become wedge shaped and the ribs becomes deformed and pointed under the prominent shoulder blade. My chest is still deformed from my childhood curve despite a thoracoplasty to reduce the deformity. I also lost lung tissue which will not come back and is scarred. Even though I got spectacular results from my surgery the damage to my lungs could not be undone only arrested. The breathing has been improved by curve reduction but I will always have significant restricted lung capacity. This is from curves in the (before surgery)range of:
30 cervical/80thoracic/40 lumbar.

The surgery itself can also result in restricted lung capacity because, with the anterior approach, the breathing muscles/nerves are cut--that's what the pulmonary doc told me pre-op.

Anyone who thinks that they always have the option of surgery "later" when it starts hurting is kidding thmselves if they think straighteing the curves will result in perfectly normal shaped ribs/spine and no internal damage.

Just my experience

[Theresa]

Karen,

I agree with you. My ribs are so deformed from the scoliosis and from not having anything done until 3 years ago at the age of 48. I was really looking forward to my chest on the left side looking "normal" after the surgery. It not only affects the lungs. One of my kidneys has a flatten top from where the ribs were on it. It seems like to me that the people who had something done when they were younger have a much better time of recovery and outcomes than people who hadn't had anything done if they have to go and have a revision surgery of some kind.

[Michael Barga]

I have a feeling the last two post were stated on my behalf.I do appreciate the information. Believe me I am not suggesting that others wait for surgery until they have pain but our surgeon said right now Michael was in no danger and had no complications and he had time to decide.I was in the room and asked if it had to be done right now for medical reasons , and he said no. Maybe because of his curve being thoracolumbar or for other reasons, I do not know.Another thing is Michael looks very normal in his front chest wall, from the front one can not tell but he does have a rib hump and from the back one can tell if one is looking.I do read when you go to sites that for adult scoliosis, pain is listed as a main reason to consider having surgery.I am not kidding myself that there might be complications from waiting and I think he realizes that too but right now he says no.I guess one has to say there might be complications from having the surgery too, I think of the young mother who died.I see a lot waiting on here too until older ages so I guess he is not alone in his decision to wait... right or wrong it is his decision.All choices we make affect our health in the long run,I hope his other good choices might counterbalance in some way his choice of not having surgery right now or at least keep him in good physical shape that when surgery is needed he goes in with that on his side.I responded to the original poster because of the pain issues down the road from having surgery, this is ONE reason why he has put off surgery right now and to him it is a valid one at this point in his life. Right or wrong...pain or lack of pain can be a great motivator in one's decision making.I just hope Rachael and others find something to help with the pain issues.

[grahamtwine]

I didn't in fact have to have my rod removed, I was in a lot of back pain, I have now had a nerve block injection in my lower spine which has helped a bit, I go to see the specialist again next month. I thought my rod had moved due to the pain I was having.

I look forward to any comments.