Re: Revision Question

[Guest guest]

Hi ,

While one thing he said "might" be true - about the problems you're having are coming from the unfused areas, that doesn't necessarily mean it isn't related to scoliosis and your previous fusion. I'd be inclined to think that if you didn't have scoliosis and the fusion, you'd not be having these problems you're having now. I am NOT doctor, NOT an expert, just someone who's story is a lot like yours and a lot like the huge percentage of people with scoliosis who had corrective surgery that long ago. Now days it is pretty easy to find a lot of information about past fusions and problems now.

Did your doctor take any x-rays that you can retrieve and take with you to another doctor? Did he offer any hope/help? Was his diagnosis merely "had surgery in the "dark ages" and that people with scoliosis just have lifelong issues with it".

If it were me, and, believe me, I've had more than one surgeon give me pretty much the same story and my personal beliefs are these stories come from one or more of the following:

a. he's a predicessor of the original surgeon who fused your back

b. he has extremely limited knowledge about scoliosis and long term effects from spinal fusion

c. doesn't want to take you on because he doesn't like your insurance

I've had personal experiences with all three.

I know Cam and some of the other long standing members here will chime in and stress the importance of seeking a second opinion and that there aren't very many surgeons who are well versed in this complex condition.

I just want to emphasize that I think you owe it to yourself, the rest of your life and quality of it, to do what you have to do to get your insurance to approve a second opinion and do the research to find the best you can in your location.

When I was planning my 3rd surgery that was to fix a spot or two after the first two didn't help at all in pain or enabling me to start regaining stamina to do a lot of the thinks I had quit doing (shopping, social events, being able to make it to work every day, load a dishwasher, stand long enough to wash dishes by hand, etc.) that I was entering into a realm of dealing with rest of my life issues instead of having surgery and returning to work as soon as possible issues. The third surgery actually made things worse as L4-L5 was fused which caused the good areas above & below went kaplooie in less than a year from that particular surgery. My next surgery and the last one as of yet was the fusion extending from the original fusion surgery in 1972 down to the sacrum. Had I been able to find a more knowledgable surgeon sooner I might have stood a better chance at better results from my revision surgery (4th surgery) performed in May of 07.

Sorry to have rambled so, and I don't know if you've posted in here before, at any rate, you're definitely at the right place for lot's of information and tender, loving care and understanding.

G

[ ] Revision Question

I went for a consultation with a surgeon today regarding pain that has been intensifying past 6-8 months. I was fused for scoliosis in 1972, but my doctor used bone chips for the fusion, and did not use Harrington rods. I was asking about flatback and the potential for revision surgery. He was quite dismissive -- once you are fused, you do not have pain from the fusion and no further improvement can be made to the fused area he told me; you only have problems from the unfused areas (I have bone on bone - little or no disc - between L4 and L5 and lots of degeneration in cervical and thoracic...don't yet know extent).This doctor said "flatback" (and he made finger quotes when he said it) only really occurs in people with scoliosis who have had rods. He did not address my questions about my forward-leaning posture, some strange changes I'm noticing in my gait, and new intense pain in my hips (except to say it was from the L4-L5 problem). He said I had surgery in the "dark ages" and that people with scoliosis just have lifelong issues with it. So - my question: is flatback syndrome something that is only treated when a person with scoliosis has rods? Even though I have no lordotic curve, are all my problems (and the pain is getting to me the past half-year) just related to degeneration, not flatback? Does this warrant a second opinion (not likely with my insurance)?Any advice or information would be so much appreciated. Chappell

[Guest guest]

Dear ,

Your story especially hits me and one who is crying for a second opinion. Complicated spines such as ours, weither or not you have instrumented fusions, demand highly skilled docs. Many of us VETERANS have heard reams of information that just didn't ring true, from less experienced doc's in dealing with post fusion spines( mine being with a Harrington) from our time frame, of the sixties thru the eighties. I saw numbers of docs, and got so many differing opinions from I was crazy, my fusion was solid and I had no pain according to him, to one doc that suggested that removing one hook from my Harrington would fix me right up. I saw twenty some ortho doc's from the mid eighties to the year 2000, knowing something was awfully wrong, and finally got my diagnosis in 2000 from my surgeon, Dr. Anant Kumar in Denver. I cried all the way home from that first visit, as it validated that truly something was wrong, and it had a name, and a fix. Kumar used the term, Classic Flatback Syndrome.

Weither or not you have flatback is for an experienced doc to judge, but obviously you are having pain and symptoms. Weither it is just degeneration below and above you existing fusion, still it's painful, and needs to be addressed.

Did this doc you saw run a plumb line between C7 and the middle of your last lumbar segement to judge if you are falling forward? My guess is no.

I did look through some info this morning, as most of our members are dealing with Flatback resulting from our surgery as kids or young adults with Harrington rods or following rod systems. Can flatback occur without a Harrington, yes, people can get it from degenerative changes, poor surgical technique even today, fractures, and various other ways.

Dr. Pashman's website www.espine.com/flatback.htm had some very good descriptions: would be worth a look for you.

There it says: "flatback occurs most commonly in patients that have previous spinal fusions." I found that interesting, as most times you see, previous fusions with distraction hardware such as the Harrrington Rod.

I'm not a doc, just a fellow patient, but I would run to an experienced doc and see just what is up with you. Know while I had flatback, I also had reams of degerative changes below my Harrington Rod fusion mass which gave me fits, besides the awful falling forward that the Flatback caused. I had lateral listhesis, stenosis, facet joint arthritis, and bad discs, all which was addressed in three surgeries, a decompression and two revisions. All the reams of problems caused pain and resulting disability.

I would if I were you consult at least two doc's in the field with vast experience in treating post fusion patients. please let us know where you are located and we can give you some names to consult for an opinion. Also go to the Scoliosis Research Society website, and there they have a doctor locater, fill in the info and up will come some docs, look for doc's who have Aging Spine, or Adult, in their description, as those would be your best bet. Any doc's office should be questioned about his/her's experience with Flatback when calling to make an appointment, if they don't know what it is, move on. Know if you are in a smaller state, the lists of names will be small, and may mean travel, and in some states, there might be no names. I'd also ask to speak to the doc's assistant, as the counter/phone staff may not know the exact expertice of a doc, and have a good conversation with the assistant.

Know many of us have had to have the STICK TO IT mentality when we have gotten to doc's that either don't get it, don't want to deal with it, or plain are scared of us. Trust your gut, mine kept me from making big mistakes as I went through the process. If something doesn't ring true, move on. My other suggestion is to read, read, read, from all you can get your hands on. Our site has fabulous articles to read and the experiences of others like yourself. I still read everyday, and you need to become informed to make informed decisions. This isn't something to hand to a doc without your homework being done. Doc's love informed patients, mine taught me to be, and being here all these years after my last surgery(2002) keeps me learning, as scoliosis is a lifetime battle unfortunately. I'm doing well and am extreamly thankful not only for my surgeon and his skills, but for my own not giving up and living with this whole mess, I knew something was wrong, and kept on fighting to find some doc who had answers and a fix.

If you are in pain, noticing changes, and feeling your world getting smaller, you deserve answers and help. So my other suggestion is to fight your insurance company on a second opinion. Appeal their decision, and back it up with info. Even if they won't pay for a second opinion( again appeal that, it's in their best interest too) then pay for a consult yourself. Some of the best doc's will look at x-rays and tests for a nominal fee, worth a look.

Know while this all is daunting, you just have to bite it off a piece at a time. Opinions are key right now.

Hope this helps, please let us know more about you and where you are located. We don't recommmend doc's for surgery, just for opinions, as choosing a doc is very personal. There are a handful of names that come up here often, very experienced docs that have done a lot of these surgeries, and have proven track records. As with most complicated surgery, these doc's are mostly in big cities, and you may have to travel to get to one of them. Also the Scoliosis Research Society website can be helpful. I was lucky my surgeon was local to me, not so for many of us.

I look forward to getting to know you better, have faith, you are among friends that totally get this, are maybe in your same place, looking at just what is wrong and getting to a doc, for some planning surgery, others recovering, and some of us old timers who have been through the whole process and are here to support you as you go through it.

Again Welcome!

Colorado Springs

[ ] Revision Question

I went for a consultation with a surgeon today regarding pain that has been intensifying past 6-8 months. I was fused for scoliosis in 1972, but my doctor used bone chips for the fusion, and did not use Harrington rods. I was asking about flatback and the potential for revision surgery. He was quite dismissive -- once you are fused, you do not have pain from the fusion and no further improvement can be made to the fused area he told me; you only have problems from the unfused areas (I have bone on bone - little or no disc - between L4 and L5 and lots of degeneration in cervical and thoracic...don't yet know extent).This doctor said "flatback" (and he made finger quotes when he said it) only really occurs in people with scoliosis who have had rods. He did not address my questions about my forward-leaning posture, some strange changes I'm noticing in my gait, and new intense pain in my hips (except to say it was from the L4-L5 problem). He said I had surgery in the "dark ages" and that people with scoliosis just have lifelong issues with it. So - my question: is flatback syndrome something that is only treated when a person with scoliosis has rods? Even though I have no lordotic curve, are all my problems (and the pain is getting to me the past half-year) just related to degeneration, not flatback? Does this warrant a second opinion (not likely with my insurance)?Any advice or information would be so much appreciated. Chappell

[Guest guest]

I am so grateful to have heard back from some of you. It has been feeling pretty lonely and scary lately. I live in Auburn, CA, about 35 miles from Sacramento. My original surgery in 1972 was done by Dr. Loren Larsen in San Francisco. The doctor I saw yesterday literally refused to discuss revision surgery, telling me that he had assisted at one while an intern or resident and it was a nightmare that he would never want to revisit - and "luckily, I've never had to". 18 hours, lots of blood loss. He said, again dismissively, that there are lots of "important" things near the spine and the risks in revision surgery are too high because there wouldn't be any benefit (mind you - he had not even discussed my symptoms or looked at my back at all at this point...he had just seen an x-ray that showed what I described

previously). He did not even ask about pain, he kind of laughed off when I mentioned that I've begun walking differently, he did not answer when I asked about the intense spasms in my "wing" (back/shoulder) area. It was very disheartening.

I did call my doctor's office regarding the potential for a second opinion. I was told to check with my insurance. Calling the insurance company, they said to check with the doctor. I'm sure you are familiar with that dance!

Until about seven months ago, I was able to handle the pain pretty much most of the time. There have been times over the years when that wasn't so...I was in a car accident in the very early stages of my last pregnancy 17 years ago...ended up unable to walk by the time I delivered due to spasms in low back. Physical therapy eventually did the trick (once the doctor took me seriously...she felt horrible when she saw I was unable to walk since she had dismissed my telephone calls asking about pain...lots of her pregnant patients complained about back pain). I also hurt myself exercising or lifting about eight years ago. Developed lots of numbness, neck pain. The doctors were convinced that I had MS and were bound and determined to find it (after taking spinal fluid twice they finally decided to listen to me about my scoliosis/fusion).

Anyway (sorry to be so long-winded) about seven months ago I really started noticing that I was walking "funny" -- pitched forward at the hips, legs turned out kind of like a duck -- and the pain got to be unbearable, taking my breath away at times. I can just be sitting and it will start to bloom in my low back until it becomes nauseating. Coupled with the shoulder and neck spasms and a new ache in my hip bones, I just want to cry. I'm also sick and tired of well-meaning people asking me why I limp (I didn't know I did until a few years ago). Lying down used to help, but now my hips develop a dull ache, worse over my hip bones in front.

I am generally quite physically active, but have let that go by the wayside. The only way I was able to get out of the pain in the past was by doing Pilates faithfully, dealing with the initial flare-up from exercising, the settling in to feeling better due to being stronger and leaner. I can't seem to fix myself this time. And I'm scared about the future. I tried to tell the doctor that yesterday, to describe my life and how I would like to be functional for a while longer (I am 52). He's a young guy, a pretty cocky guy, who works a lot with athletes (I think he may be a marathoner himself). Well -- I rode a bicycle century last year and twice the previous year. Do you ever notice that middle-aged women sometimes are invisible?

So - that's me. Thank you all if you've made it through this self-pitying post!

Chappell

Auburn, CA

[Guest guest]

,

Thank you so much for your post. I read posts like yours and it renews

my energy for keeping this board current, active and alive. Really...I

am so mad on your behalf that I can barely type.

I am usually fairly circumspect when I speak about a medical

professional....but whoever it was that you saw is so far off base

that I have to recommend that you never see him again. He clearly does

not have a clue about what has gone on with regard to revision surgery

since he was in training, and lacking the intellectual curiousity to

to verify that his information was even on mark before talking to you

is really frightening. Beyond that, he sounds as if he is one of those

egotistical, " god complex " doctors that hates a well schooled patient

who askes pesky questions and suggests possible correct diagnosis.

The good news is that whatever is going on with you is unlikely to be

an emergency....which even though as your life gets smaller and

smaller FEELS like an emergency....means that you have the luxury of

working your way toward a doctor who understand the complexities of

early fusions and how they translate for us older folks. I would very

much recommend that you try to be seen at UCSF Spine Center. If that

is where you had earlier surgery you never know, there may still be

writtenrecords around.

A top notch surgeon there who is highly regarded by several members of

our group, as well as within the profession, is Dr Serena Hu. If you

can get a consult with her it will surely be invaluable.

As of about a year ago, a member reported that Sharon Whittemore was

the person who handled the scheduling, her direct # 415/353-7073. and

she said that calling on a Mon. might be of help. She also said that

you could e-mail Sharon detailing your problem, symptoms, what

provokes it, etc.and that she usually responds promptly (especially on

Mon am.)Her e-mail: Sharon.Whittemore@...

Your doctors unwillingness to discusss revision in terms of what the

state of the art today is really is troubling. I have been a member of

this and other groups since 2004...so more than 4 years, and beyond my

own successful revision have been an " internet bystander " to several

hundred more. I can't think of one surgery that went 18 hours, because

they just don't do it that way anymore.

It is true that any orthopedic procedure is bloody, and revision

surgery, where they often take a wedge shaped piece of bone from one

(or more) vertebra (called an osteotomy), is no dfferent. The

difference comes in having a highly experienced surgeon DO the

surgery. This minimizes the patient risks because they are more

efficient at all aspects of the surgery and obviously have more

experience managing the challenges that we present. Its why my

personnal recommendation is for everyone to at least see one of the

" biggies " before they go ahead with a " local expert " . The definition

of a top surgeon for me, and most insurance companies would fall

between 50-100 of these procedures. The one that your doc assisted on

means nothing.

It is untrue that there is nothing that can be done, It is untrue that

you could not have pain related to your earlier fusion. This guy is

just way off base and luckily your sense of " something is wrong " is

correct.

I have to run right now as company is coming in the door....but I will

give you a few more links when I have time this weekend. Please persevere!

Take Care, Cam

[Guest guest]

Hi ,

My heart goes out to you and I'd like to strangle that doctor you saw yesterday. What an idiot. His attitude and lack of knowledge just confirm that he is totally out of it. Please, somehow, manage to see one of the specialists who know what they are talking about and how to deal with us. There is a group at UCSF that I think are the closest experts to you. California people, please chime in. A lot of us have had to travel out of town to see the right docs, and it appears that you will, too. In any event, most of us have had more than one opinion because of the seriousness of our situation. You will get the right help[, I'm sure. Try to hang in until it all works out.

Bonnie