Re: Re: Revision Question

[Guest guest]

Self pity? I don't think so. And like said, there's so much to your story that is very similar to mine.

I cannot BELIEVE what this doctor said to you about his experience while assisting in a revision surgery. I don't think things like, or said like that, need to be said to a patient. Sounds like he's in the WRONG business if he views some surgeries as nightmares. Also, since he admitted to you that he assisted in only one, quite a while ago, perhaps he's wiser than I'm giving him credit for - since he made no effort to offer his services to you. They won't come out and say they have no idea, they'll just scare you away so you won't come back. That's been my experience, anyway.

It might be that you are not a candidate for revision surgery - but you've definitely got some problems that need to be seen after. Some of the good doctors that people in this forum see are wise and experienced enough to tell you if you're a candidate or not for revision surgery, or other treatments, etc. that will help. Sounds like you're starting to need some pain management. I'm not condoning use of narcotics or any other types of drugs, but for me personally, I rely on them so I can at least be a little active...and cronic pain, well, that has a tendency to work on your mind after a while.

As others pitch in, I hope you can gain enough knowledge to save yourself a couple of years of getting runarounds like the doc. you saw yesterday and find a qualified specialist in this area and get some form of truthful information that you can trust as well as a bonafide second or third opinion - and then treatment to help you - in whatever form that may be.

When I started hanging out in this forum, I was blown away at how much everyone had in common. It was both good and bad. Good that I realized I wasn't crazy and this new found pain and changes wasn't just something that only I in the whole world was experiencing, that there was a lot of information and a ton of support from others who had already been through what I was in the beginning of. The bad was that after all of those good years after my original fusion in 1972 till about 1999 were coming to an end as I knew it...a realization, if you will, but it was only bad until I wrapped my mind around it and accepted it. Then everybody has different outcomes from revision surgery but most, if not all, are glad they had it done as it has restored some quality of life (varying degrees per indivisual) and totally eliminated pain for some. And everyone in this forum started out with scoliosis & surgery in their younger days - so you're definitely not alone in this crowd!

G

[ ] Re: Revision Question

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]

Dear ,

As Cam said a first good step for you will be Dr. Hu. I'm from California orginally, and had my Harrington Rod placed in 1973 at UCSF. There are a few of us here that had our original fusions done in that time frame in the bay area. At that time we lived in Santa , and I was supposed to have non instrumented fusion with Dr. Bauer there, but he met a doc doing it with Harrington Rods at UCSF, and with Bracing instead of casting, so we moved onto the doc at UCSF. I lived in California till 1994, in Modesto, so I'm familar with your area, have a cousin that lives in Auburn.

Plainly the doc you saw isn't your doc, neither has your best interest at heart, and plainly doesn't get or wants to get just what is entailed in todays revision surgery. Actually is good to know, and you have good judgement in knowing he's way off base. Lesson learned, and you will be far better equipped when seeing the next doc. Unexperienced ones, ones who leave you feeling like you did, makes you all the more appreciative when you find a good one. Even if he isn't interested in doing revisions( and thankfully he wouldn't and didn't give you the idea he could) he should have not said what he did, but sent you along to a more experienced doc. I'm still after all these years shocked at what gets said to potential revision patients, but I've had my share of junk said to me, but you think with all the time passing from my experience, and the knowledge out there about Flatback and revision, that what you experienced wouldn't happen. For goodness sakes my PCP here in Colorado Springs had more knowledge and sence about Flatback and revision than this guy did. Shocking yes, alas the pockets of of uninformed, or plainly biased doc's are out there. Revision is tough, but in the best of hands can and does reap for most of it's patients an improved stance, less pain, and less disability. After years of being around these boards, almost all are glad they had theirs, and would say it was worth it to them. Mine sure was.

I'm hoping you can get to Dr. Hu and get an opinion, and know while this doc you saw was plainly NOT your doc, there are others out there who potentially are. The joy of being here is not only the sharing, but those who have come after us earlier patients have knowledge and a vast amount of info to avail yourselves of, and names of potential surgeons to check out. When I was going through it, I felt alone and like I was stabbing in the dark. Once I got diagnosised, I went home and read till I could read no more, and was shocked to read I wasn't the only one. I also found online groups of other patients, and was so glad I could read about their experiences. My hope is for you that despite this bad experience, you will go see some experienced docs and see just what is possible for you. We scoli gals are troupers, and of those I have met through this group and mentoring patients for my surgeon, we are about the toughest group of patients, great advocates for ourselves, and have a no nonsence way about ourselves, we will and do get our answers, and have the judgement to find whats best for us.

Colorado Springs

[ ] Re: Revision Question

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