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fandango
04-16-2010, 04:23 PM
I was wondering; what do you think is the percentage of people who are happy with the outcome of their surgery opposed to those that wish they hadn't had it done.

My surgeon said that 2/3rd of patients are satisfied after surgery but reading this board - it seems many more people are happy than not.

My thinking at the moment is that it is not a high risk that it will not be successful BUT if it is not successful it can be devestating?

debbei
04-16-2010, 07:47 PM
I was wondering; what do you think is the percentage of people who are happy with the outcome of their surgery opposed to those that wish they hadn't had it done.

My surgeon said that 2/3rd of patients are satisfied after surgery but reading this board - it seems many more people are happy than not.

My thinking at the moment is that it is not a high risk that it will not be successful BUT if it is not successful it can be devestating?

I can only speak for myself, but I am very happy, and thankful that I had such good results. I know it's not like that for everyone.

Vali
04-16-2010, 07:54 PM
I'm extremely happy with my results. My spine surgeon couldn't really guarantee that the nerve pain down the leg would go completely, but the Neuro said that he thought that, after having the scoli correction he would be very surprised if the pain didn't go away completely or at least 99.9%. I had to take that chance and i'm glad i did!:)

joyfull
04-16-2010, 10:52 PM
Fandango, I have wondered the same thing. It seems that on this forum most people are happy with the outcome. Recently someone posted who regretted have surgery, but that is the only one I've seen. I am going into this as a preventive measure since I have no pain so it is really an issue for me. I am closing my eyes and taking the leap. I'm wondering what the impression is of those people who had surgery years ago, or of the moderators who have heard it all.

LindaRacine
04-17-2010, 12:16 AM
I think that the satisfaction rate we see at UCSF is really high. It wouldn't surprise me to find that <5% of patients are unhappy with their result. Unfortunately, if you're in that 5%, it doesn't make any difference that 95% of people had a great outcome.

What you probably really want to know is what percent of the patients who had surgery similar to what you're having, and which was performed by your surgeon, are happy. There's no way to verify that unfortunately. The best you can do is to talk to as many people as you can find who have had surgery performed by your surgeon.
Here's a review of scoliosis surgery outcome papers:

Adult scoliosis surgery outcomes: a systematic review.

Yadla S, Maltenfort MG, Ratliff JK, Harrop JS.

Department of Neurological Surgery, Thomas Jefferson University, Philadelphia, Pennsylvania 19107, USA. sanjay.yadla@jeffersonhospital.org
Abstract

OBJECT: Appreciation of the optimal management of skeletally mature patients with spinal deformities requires understanding of the natural history of the disease relative to expected outcomes of surgical intervention. Appropriate outcome measures are necessary to define the surgical treatment. Unfortunately, the literature lacks prospective randomized data. The majority of published series report outcomes of a particular surgical approach, procedure, or surgeon. The purpose of the current study was to systematically review the present spine deformity literature and assess the available data on clinical and radiographic outcome measurements. METHODS: A systematic review of MEDLINE and PubMed databases was performed to identify articles published from 1950 to the present using the following key words: "adult scoliosis surgery," "adult spine deformity surgery," "outcomes," and "complications." Exclusion criteria included follow-up shorter than 2 years and mean patient age younger than 18 years. Data on major curve (coronal scoliosis or lumbar lordosis Cobb angle as reported), major curve correction, Oswestry Disability Index (ODI) scores, Scoliosis Research Society (SRS) instrument scores, complications, and pseudarthroses were recorded. RESULTS: Forty-nine articles were obtained and included in this review; 3299 patient data points were analyzed. The mean age was 47.7 years, and the mean follow-up period was 3.6 years. The average major curve correction was 26.6 degrees (for 2188 patients); for 2129 patients, it was possible to calculate average curve reduction as a percentage (40.7%). The mean total ODI was 41.2 (for 1289 patients), and the mean postoperative reduction in ODI was 15.7 (for 911 patients). The mean SRS-30 equivalent score was 97.1 (for 1700 patients) with a mean postoperative decrease of 23.1 (for 999 patients). There were 897 reported complications for 2175 patients (41.2%) and 319 pseudarthroses for 2469 patients (12.9%). CONCLUSIONS: Surgery for adult scoliosis is associated with improvement in radiographic and clinical outcomes at a minimum 2-year follow-up. Perioperative morbidity includes an approximately 13% risk of pseudarthrosis and a greater than 40% incidence of perioperative adverse events. Incidence of perioperative complications is substantial and must be considered when deciding optimal disease management. Although the quality of published studies in this area has improved, particularly in the last few years, the current review highlights the lack of routine use of standardized outcomes measures and assessment in the adult scoliosis literature.

joyfull
04-17-2010, 11:24 AM
Linda, 41% of adult patients had complications according to the article. That seems very high. What are your thoughts?

LindaRacine
04-17-2010, 11:51 AM
Hi Joy...

The 41% seems about right. (The study excluded patients below 18.) Complications can range from a dural tear to death. The vast majority of the complications are not long lasting or life threatening. When I talk to people who had a complication like an infection, they're not overly happy while they're going through the treatment, but afterward they report that it was no big deal. As you can see from the referenced abstract, the complications don't impact satisfaction.

Regards,
Linda

Pooka1
04-17-2010, 12:03 PM
Hi Joy...

The 41% seems about right. (The study excluded patients below 18.) Complications can range from a dural tear to death. The vast majority of the complications are not long lasting or life threatening. When I talk to people who had a complication like an infection, they're not overly happy while they're going through the treatment, but afterward they report that it was no big deal. As you can see from the referenced abstract, the complications don't impact satisfaction.

Regards,
Linda

Also it seems like the Harrington rod patients were included. If they broke out H rod versus pedicle screw I bet the numbers would group into two fairly distinct ranges.

In fact I would not be surprised if the two groups were:

1. H rod for lumbar (low satisfaction)

2. everyone else (H rod for T curves and pedicle screws for all curves) (high satisfaction)

jrnyc
04-17-2010, 05:59 PM
Hi Linda
hmmmm....follow up shorter than 2 years...?? so if the "complication" is corrected...either from time or some kind of treatment...assume that they are eliminating those needing revision surgery...? then what??...i kinda thought they should follow up after 1 year, after 2 and after 4...
of course, i gotta hope when i finally have the surgery, MY complication isnt death :eek: :rolleyes:


jess

LindaRacine
04-17-2010, 06:10 PM
Hi Linda
hmmmm....follow up shorter than 2 years...?? so if the "complication" is corrected...either from time or some kind of treatment...assume that they are eliminating those needing revision surgery...? then what??...i kinda thought they should follow up after 1 year, after 2 and after 4...
of course, i gotta hope when i finally have the surgery, MY complication isnt death :eek: :rolleyes:


jess

Hi Jess...

The "less than 2 years" was a noted exclusion. That is, only papers that had at least 2 years of follow up were included.

The gold standard for scoliosis surgery outcomes is arguably the papers that have been coming out of the Spinal Deformity Study Group. Those studies will eventually have 20 year follow up.

jrnyc
04-17-2010, 06:52 PM
ummm..thanks, Linda...my fault for speed reading a medical study..not what that kinda reading was made for...my apologies...

i reread the study.....interesting....i hope others dont pick up the 41% statistic and get discouraged...i guess the kind and degree of complication is the concern...Dr Lonner told me that after he operates ("fixes" me, i tell my puppy) later on i might need screws or other hardware removed...i am thin and there is a chance stuff could poke thru or somethin'.....
am assuming that would be considered a "complication," but it would be fixable...so how do studies account for successful revisions of complications? :)

jess

rohrer01
04-17-2010, 06:58 PM
It makes me wonder if the nature of the forum itself isn't creating a biases toward the "good" outcomes. Those having good outcomes would want to encourage others not to be afraid of the surgery, because, after all, it helped the person with the good outcome.

Biases are very difficult to get away from. And other than a parent reporting a child's death, which unfortunately I have seen here, I doubt very highly that family members of the deceased will be in too much of a hurry get on this board and report the outcomes. They will be dealing with grief, etc...

Research papers and studies are the best way to find out real results, as Linda suggested.

rohrer01
04-17-2010, 07:01 PM
ummm..thanks, Linda...my fault for speed reading a medical study..not what that kinda reading was made for...my apologies...

i reread the study.....interesting....i hope others dont pick up the 41% statistic and get discouraged...i guess the kind and degree of complication is the concern...Dr Lonner told me that after he operates ("fixes" me, i tell my puppy) later on i might need screws or other hardware removed...i am thin and there is a chance stuff could poke thru or somethin'.....
am assuming that would be considered a "complication," but it would be fixable...so how do studies account for successful revisions of complications? :)

jess

My doctor told me I am committing myself to two surgeries because I am thin, too. He said the hardware will likely bother me and restrict range of motion in my arms. :( But that's a chance I'm willing to take if I feel better after the second surgery!:p

LindaRacine
04-17-2010, 10:42 PM
.so how do studies account for successful revisions of complications? :)

jess

Hi Jess...

Sorry, but I don't understand the question.

LindaRacine
04-17-2010, 10:48 PM
It makes me wonder if the nature of the forum itself isn't creating a biases toward the "good" outcomes. Those having good outcomes would want to encourage others not to be afraid of the surgery, because, after all, it helped the person with the good outcome.

Biases are very difficult to get away from. And other than a parent reporting a child's death, which unfortunately I have seen here, I doubt very highly that family members of the deceased will be in too much of a hurry get on this board and report the outcomes. They will be dealing with grief, etc...

Research papers and studies are the best way to find out real results, as Linda suggested.
Actually, it used to be entirely the opposite. The people who sought out the internet were those with bad outcomes, trying to find others like themselves or resources.

As it is, if you look at some of the earliest posts on these forums, most of the people who have had surgery have gone on with their lives, and no longer post.

It's interesting to me that the vast majority of the patients that I've talked to in my job have not sought out information on the internet, and know nothing of these forums.

--Linda

rohrer01
04-17-2010, 11:24 PM
It's also quite interesting how things can shift from negative to postive and vice versa. I agree that studies are the best way to go. They are hard to find on the internet for the layperson. I know nih has some good stuff, but for other things they (meaning other websites) want you to "pay" to join or be a doctor or something. I have found the forum very helpful. Thank you.

LindaRacine
04-17-2010, 11:40 PM
It's also quite interesting how things can shift from negative to postive and vice versa. I agree that studies are the best way to go. They are hard to find on the internet for the layperson. I know nih has some good stuff, but for other things they (meaning other websites) want you to "pay" to join or be a doctor or something. I have found the forum very helpful. Thank you.

While you can't get full text, PubMed is available to everyone:

http://www.ncbi.nlm.nih.gov/pubmed/

jrnyc
04-18-2010, 12:14 AM
Linda, sorry i didnt make the question clear...what i meant to ask was...if a complication is ....a few months after the surgery date...
the complication=screw sticking out

solving complication=screw removed by a revision surgery

result=no more complication

i am trying to imagine where/how that would be icounted in the study.....if at all?

sorry if i am making the question confusing...:confused:

jess

rohrer01
04-18-2010, 12:24 AM
While you can't get full text, PubMed is available to everyone:

http://www.ncbi.nlm.nih.gov/pubmed/

That's what bothers me. I like to see full text. In school, I could get it because I had a special password. I don't really know what they are trying to hide. Most people don't even know how to read one of those papers, let alone interpret one. ARGH THANKS, though!;)

LindaRacine
04-18-2010, 12:33 AM
Linda, sorry i didnt make the question clear...what i meant to ask was...if a complication is ....a few months after the surgery date...
the complication=screw sticking out

solving complication=screw removed by a revision surgery

result=no more complication

i am trying to imagine where/how that would be icounted in the study.....if at all?

sorry if i am making the question confusing...:confused:

jess
Hi Jess...

The study in question was a review of a bunch of studies, so it's impossible to know without reading all of the contributing studies. However, to my knowledge, a complication is a complication, regardless of whether it gets resolved.

Surprisingly, serious complications are pretty rare in scoliosis surgeries, especially if one selects an experienced surgeon. At UCSF, the surgeons do a lot of very complex revision surgeries. Despite that, I've yet to see a serious complication.

--Linda

LindaRacine
04-18-2010, 12:37 AM
That's what bothers me. I like to see full text. In school, I could get it because I had a special password. I don't really know what they are trying to hide. Most people don't even know how to read one of those papers, let alone interpret one. ARGH THANKS, though!;)

I don't think anyone is hiding anything. I would assume it's because the majority of the publications that contribute the articles cost an arm and a leg. If they published full text articles for free on the internet, all the publishers would go broke.

--Linda

hdugger
04-18-2010, 12:40 AM
It makes me wonder if the nature of the forum itself isn't creating a biases toward the "good" outcomes. Those having good outcomes would want to encourage others not to be afraid of the surgery, because, after all, it helped the person with the good outcome.

What's been interesting to me is, even people with fairly serious complications end up feeling positive about the surgery. The Scoliosis Support forum has a very different vibe, and people are quite open about their post-surgery pain levels, ongoing problems, etc. Yet, even within that group, I've only seen one person who truly regretted her surgery (and her doctor, in my opinion, was guilty of malpractice). Beyond that, even people with serious complications or those needing several revisions did not regret it.

Maybe there's some other anti-surgery forum that's gathering all the malcontents (:)), but, barring that, my sense is that people are fairly happy with their results.

LindaRacine
04-18-2010, 01:00 AM
Maybe there's some other anti-surgery forum that's gathering all the malcontents (:)), but, barring that, my sense is that people are fairly happy with their results.

I agree. I think that's mostly because the majority of adults who have scoliosis surgery do so because they have the motivation of chronic pain and loss of function. Putting up with an infection, an ileus, or a dural tear is a small price to pay for the long term resolution of pain and regaining the ability to do the things that make life worth living.

--Linda

Lorraine 1966
04-18-2010, 05:39 AM
I don't regret one thing about having surgery, even though it was so long ago.

I am just so very, very grateful.

Lorraine.

debbei
04-18-2010, 07:35 AM
ummm..thanks, Linda...my fault for speed reading a medical study..not what that kinda reading was made for...my apologies...

i reread the study.....interesting....i hope others dont pick up the 41% statistic and get discouraged...i guess the kind and degree of complication is the concern...Dr Lonner told me that after he operates ("fixes" me, i tell my puppy) later on i might need screws or other hardware removed...i am thin and there is a chance stuff could poke thru or somethin'.....
am assuming that would be considered a "complication," but it would be fixable...so how do studies account for successful revisions of complications? :)

jess

Jess,
there are also complications that happen at the time of surgery but are taken care of at that time. For example, I did have a dural tear during surgery, but it was successfully patched up and I never noticed any problem.

csc
04-18-2010, 09:37 AM
I had surgery over two years ago as evidenced by my unchanged signature.
This forum is one of the things that I check first in the morning but hardly ever post. I really admire how helpful everyone is and all the success stories.
However, I seldom post. Why? Because I am rather disappointed to say it mildly.
I hate to be one of the scoli patients with sadder news. My fusion is perfectly fine and amazingly straight. It's a work of art compared to what it was before. Yet, I have not one pain-free day in many years.
The disks below the fusion have already become arthritic and the scar tissue in my upper thoraic is a constant reminder of the surgery. I have gone through multiple physical therapy sessions with no relief. Gentle water therapy made it worse. Currently on an anti-inflammatory which helps some. I don't take pain-pills because of the side effects. I have leg pain which makes it difficult to stand for any lengthy period of time. I do go to Curves three times a week to try to stretch and loosen some of my muscles. Needless to say this has affected my social and family life. I work full-time and that is becomingly increasingly difficult. Facet and epidural injections have been tried with no positive long-lasting results.
Last doctor app't, he said he would like to see me wait about five years. But if I say that I can't stand it anymore it's a go.
So anyway, can you understand why I don't post? There so many glowing stories following this horrendous surgery and I had really hoped to be one of them. Sorry to be so gloomy on a Sunday morning. I just saw this post as an opening to tell my story and felt compelled to post.

rohrer01
04-18-2010, 11:14 AM
CSC,
Everyone needs to be heard from. I am aticipating surgery due to the pain that I have. I would like to hear the bad outcomes along with the good ones. I don't expect to go under the knife and have it be all better. My doctor alread told me I won't be able to raise my arm above my shoulders after the first surgery. He said it would be hard to play the piano, swim, and do other things. It was as if he was reading my mind. He listed all my favorite things to do. However I'm hoping that the harware removal surgery will alleviate my pain after about a year from the first surgery. I'm worried about scar tissue interfering with things and even pinching nerves. I'm a little afraid that "I don't know what pain is." If you know what I mean. I'm so glad you chimed in.

What are they going to do for your pain. My pain doc right now wants to put an intrathecal catheter into my spine. He's hoping that if I have the scoli surgery, the surgeon will leave it in. I hope there is something they can do for you. :(

tonibunny
04-18-2010, 12:23 PM
CSC,
My doctor alread told me I won't be able to raise my arm above my shoulders after the first surgery. He said it would be hard to play the piano, swim, and do other things.

Yikes, surely he means just whilst you're healing from the fusion, not permanently? How much are you going to have fused - will he be going into up into the neck?

Karen Ocker
04-18-2010, 12:27 PM
I had surgery over two years ago as evidenced by my unchanged signature.

The disks below the fusion have already become arthritic and the scar tissue in my upper thoraic is a constant reminder of the surgery. . .

The discs below my original(1956) fusion are the reason I was fused to the sacrum with my revision in 2002. They do not become arthritic but degenerate severely. When I was being evaluated for the revision Dr. Boachie said he needed to evaluate the discs to see how far down to fuse. That is why I was fused to the sacrum with my revision. I am totally pain free at age 67.
Some people, afraid of being fused to the sacrum, beg the surgeon not to fuse that far down ---but the added stress on those discs can cause pain later on because they tend to degenerate. I live a perfectly normal productive life with the slight limitation of movement.

It sounds like those degenerated discs were there when you first had your surgery and are driving you nuts now.
Scar tissue is really helped by Rolfing/myofacial release AKA Structural Integration.

Doodles
04-18-2010, 12:44 PM
CSC--
I know exactly what you mean. I really debated to put even this post although I've certainly talked about problems I still have. My pain is not nearly what you have but it's still very stiff and tight a great deal of the time. Sometimes it's better and sometimes not. Sometimes I would classify it as definite pain. It IS better than before surgery though so that's good.
My rib hump seems to be more noticeable than at 6 months out. My left side still tilts too but it doesn't seem to bother me now as much as the rib hump. Sitting against a church pew, hard back chair etc, is more difficult now than a few months ago. My scapula really juts out. The sides of my back are very uneven. Actually around 6-9 months was when I felt and looked the best.
I attributed much of this to age and severity of my curve and rotation. But recently there are so many on here of similar ages with even worse degrees who have their rib humps nearly gone. That's what I can't figure out since I had an excellent surgeon and sometimes the same one as those folks.
I too admire & congratulate all those on here who sound like they had such wonderful outcomes. I guess I'm somewhere between CSC and them. I knew it had to be done and generally am pleased. It just looked so much more promising early on. I hate to sound whiney here. I know there are so many with so many worse problems! Well, got that off my chest. Janet

Pooka1
04-18-2010, 01:48 PM
I had surgery over two years ago as evidenced by my unchanged signature.
This forum is one of the things that I check first in the morning but hardly ever post. I really admire how helpful everyone is and all the success stories.
However, I seldom post. Why? Because I am rather disappointed to say it mildly.
I hate to be one of the scoli patients with sadder news. My fusion is perfectly fine and amazingly straight. It's a work of art compared to what it was before. Yet, I have not one pain-free day in many years.
The disks below the fusion have already become arthritic and the scar tissue in my upper thoraic is a constant reminder of the surgery. I have gone through multiple physical therapy sessions with no relief. Gentle water therapy made it worse. Currently on an anti-inflammatory which helps some. I don't take pain-pills because of the side effects. I have leg pain which makes it difficult to stand for any lengthy period of time. I do go to Curves three times a week to try to stretch and loosen some of my muscles. Needless to say this has affected my social and family life. I work full-time and that is becomingly increasingly difficult. Facet and epidural injections have been tried with no positive long-lasting results.
Last doctor app't, he said he would like to see me wait about five years. But if I say that I can't stand it anymore it's a go.
So anyway, can you understand why I don't post? There so many glowing stories following this horrendous surgery and I had really hoped to be one of them. Sorry to be so gloomy on a Sunday morning. I just saw this post as an opening to tell my story and felt compelled to post.

First. I am really glad you posted. I hope others who didn't have the outcome that was hoped for will take a cue from you and post. It is impossible to get a clear picture of this situation if the testimonials are biased towards only optimal outcomes. It actually depresses me to think about this.

Now there will always be high biases skewing the testimonials because these testimonials are too small a sample size from the actual surgical population. The chances of this small sample actually reflecting anything real are extremely low. But when something like this comes up it is a wake up call to at least remind people that there is a huge bias here.

Can I just ask what your curves were when you had your surgery? It might be that extremely large curves can only be helped so much. Before pedicle screws, it probably made sense to wait. In the era of pedicle screws, that case seems harder to make though we need way more data.

[ETA:] Also what levels were fused? Adjacent level disease is still an issue with some fusions as Karen pointed out.

I hope you continue posting. I think there is something to learn in almost every testimonial.

csc
04-18-2010, 03:16 PM
I was fused from T3-L4. The discs below were healthy before surgery. Told one in five chance that there would be any problems. Also, my curves were pretty well balanced approx 47, 46. So not huge by any means. Less than a year later I noticed that old familiar feeling bending over. Not sure what the next step is. Doctor said he wanted to put off the surgery for five years as I'm not going to like it. Losing that extra motion. He referred me to the clinic's pain doctor. From there I had facet injections with no positive result. Next will be epidurals. I had two last year. One in July- seemed to help some. Then again in October- no help.
Felt like I was having my own pity-party this morning. I can usually be pretty up beat about it. Just was thinking this morning that I really expected more being two years out. Thanks all for being so understanding and helpful.

joyfull
04-18-2010, 04:53 PM
CSC, who was your surgeon? It is important for people like you to post, but I must admit it gives me pause. I am going into surgery on June 8th with Dr. Lonner with absolutely no pain. My scoliosis is 85 - 90 degrees, depending on which doctor is measuring, thoracic, and I'm doing this mainly to prevent progression and heart and lung problems. I feel as though there is no answer; I just have to close my eyes, take the plunge and hope for the best. I was also told that I have significantly reduced lung function, but I am hardly aware of it in my everyday life. If I had pain now, the decision would be much easier. Best to everyone, Joy

Pooka1
04-18-2010, 05:31 PM
I was fused from T3-L4. The discs below were healthy before surgery. Told one in five chance that there would be any problems. Also, my curves were pretty well balanced approx 47, 46. So not huge by any means. Less than a year later I noticed that old familiar feeling bending over. Not sure what the next step is. Doctor said he wanted to put off the surgery for five years as I'm not going to like it. Losing that extra motion. He referred me to the clinic's pain doctor. From there I had facet injections with no positive result. Next will be epidurals. I had two last year. One in July- seemed to help some. Then again in October- no help.
Felt like I was having my own pity-party this morning. I can usually be pretty up beat about it. Just was thinking this morning that I really expected more being two years out. Thanks all for being so understanding and helpful.

A 20% chance you would ever get adjacent level disease below the fusion or just not so soon? I think I understood our surgeon to say if it goes to L3 or L4 or L5 then it is just a matter of time. The earliest I heard was about 5 years where an extension is required so you are way ahead of that curve and it might suggest that somehting else is going on. Maybe you should get a second opinon from a guy specializing in revision.

BTW I am not so sure that the comment about L3 and lower fusions is based on the pedicle implants. I don't know how much data exists for adjacent level disease with all pedicle screw constructs for them to say much.

As to not liking the extension, I hope people fused to the sacrum or to the pelvis chime in. You should take special note of Ti Ed's thread on his amazing ability to twist after a T2 -pelvis fusion. If the extension removes your pain, I think you should read those testimonials to see if the surgeon is right about your not liking the result.

You were correct to expect more being two years out I think.

Last, when they told you you would never progress (after wearing a Milwaukee), do you remember what your curves measured? I am collecting data on that unofficially of course.

I hope you keep posting. But I think Linda should comment on how comment your result is. I think she already mentioned that most people get a good, pain-free result eventually. I wish you did too and I certainly hope you will in the near future.

Nitram
04-18-2010, 05:37 PM
I was fused T10 - Pelvis just over a month ago and am glad I did it. My doc said he could stop at L5 but that the chances were very high that I'd need surgery again within 5 years as that disc would likely degenerate quickly....I chose to just have it all done at the same time and to be honest, I'm very happy I did. I really notice very little loss of mobility from where I was pre-surgery, granted, I was fairly limited before, but now I hopefully won't have to worry about it again.

Rich

jrnyc
04-18-2010, 05:40 PM
hi csc
sounds as if you do have degeneration of discs in lower spine...i know that causes a lot of pain....my surgeon told me last week that my curves had not increased in the last 12 months, but that my discs were worse on the MRI....

i really think another opinion..at least one...is in order! i hope you live somewhere allowing for more than one surgeon who knows scoliosis surgery and revision, as Sharon said, to take a look and do a consult....or at least are near a major city for that to be available....

please try to consider going to someone else...cause after going thru surgery...you sure do deserve a better quality of life!!!

i need fusion L4-sacrum and T11- S1..."with bilateral pelvic fixation"...i am nervous about loss of flexibility...but this has so constricted my activities in life...starting with early retirement and downhill from there...that i am considering doing it within the next 12 months...everyone who had fusion to pelvis who writes on forum swears that it is waaaaay less limiting than those of us who have not had that surgery yet are imagining!

best of luck
jess

Nitram
04-18-2010, 05:50 PM
Hey Jess, I'm one of those that says fusion to Pelvis isn't that bad. I definitely expected it to be worse than it is...granted I'm only 4 weeks into recovery but its really not that bad at all....I've just had to learn to squat more and bend from my hips. Still need to figure out how to put socks on though! :-)

Rich

LindaRacine
04-18-2010, 05:58 PM
i need fusion L4-sacrum and T11- S1.

Hi Jess....

Just so everyone is clear, you're actually going to be fused T11-sacrum. While surgeons often talk about the front and back fusions separately, yours are totally overlapping. :)

Regards,
Linda

Singer
04-18-2010, 07:59 PM
CSC, I'm sorry that you are continuing to have such significant problems and pain.

And regarding the subject of stopping a fusion at L5 -- Dr. Boachie did tell me that I had a 50-50 chance of needing to extend to the sacrum at some point in the future, but he was insistent that my L5 disc was in great shape and that I was likely to get a lot of years out of it. Time will tell..but the point is, I trusted his expertise and was not about to request that my original fusion go the sacrum in order to avoid future revision surgery. I am always amazed that some surgeons actually let their patients make the decision about how far down to fuse. I mean, isn't this what we're paying them hundreds of thousands of dollars for??

rohrer01
04-18-2010, 08:37 PM
Yikes, surely he means just whilst you're healing from the fusion, not permanently? How much are you going to have fused - will he be going into up into the neck?

He said the lowest he could start with the fusion is T2 so he will be fusing T2 to L1 at least when he does it. I will have limitations because I am very thin and the rods will interfere with my muscles. The revision surgery, after the fusion is complete will probably be what releases my arms. At least that is what my understanding is. My curve is so high that my head comes out of my shoulders at a 46* angle. I would like him to straighten my neck, it gets quite sore just holding my head up to look "normal". When I let it droop to the right, the weight of my head also causes neck strain. It's a lose, lose situation if you ask me. I want him to fuse as high up as he can and still leave me with most of my neck mobility. Some diminished function would be fine with me because when I have flare-ups, I can't turn my head at all, look up or down, nothing. Forturnately, I just have mild limitation most of the time.

jrnyc
04-18-2010, 11:24 PM
Hey Linda...thanks for the explanation.....i get confused which is going to S1 or which to sacrum...
i do know that Dr Lonner said he'd probnably have to go to pelvis with screws and such, but said he'd take a look when he got in to see if he could avoid it (per Dr Anand)..i thought about it and said that once we finally do the surgery (after several years of agonizing) i would trust him to know what to do...and i guess sacrum or pelvis aint gonna' be that different...

Rich...thanks for the note...i guess most "pelvic people" here on forum say the same thing...that it is no where near as bad or as "robot like" as those of us before-surgeries think it will be! glad you are healing...read your thread...dont push too hard...you've got all the time in the world left after you do go off the meds...no hurry!

jess

LindaRacine
04-18-2010, 11:41 PM
Hey Linda...thanks for the explanation.....i get confused which is going to S1 or which to sacrum...
i do know that Dr Lonner said he'd probnably have to go to pelvis with screws and such, but said he'd take a look when he got in to see if he could avoid it (per Dr Anand)..i thought about it and said that once we finally do the surgery (after several years of agonizing) i would trust him to know what to do...and i guess sacrum or pelvis aint gonna' be that different...

Rich...thanks for the note...i guess most "pelvic people" here on forum say the same thing...that it is no where near as bad or as "robot like" as those of us before-surgeries think it will be! glad you are healing...read your thread...dont push too hard...you've got all the time in the world left after you do go off the meds...no hurry!

jess
Hi Jess....

S1 stands for the sacrum. The sacrum is actually multiple vertebrae that have fused together. I'm not certain why we sometimes here S1 and sometimes the sacrum. It's essentially the same place. The doctors at UCSF are fixing to the pelvis instead of stopping at the sacrum for a lot of patients. And, I have to say that the recoveries appear to be much easier. I'm not sure why, but it may be that the pelvic fixation keeps the L5-S1 level from moving, which speeds up fusion.

By the way, I had xrays taken last week for the first time in a long time. (I'm going to try injections for leg pain that I've been experiencing for the past 6 months.) I was disappointed to see how much more deteriorated all of the discs below my fusion are. I had hoped to avoid fusion to the sacrum (when I finally decide to have the surgery), but it looks like I'll probably be joining that club some day too. I'm not nearly as freaked out about it as I would have been 10 years ago, as I'm routinely seeing and hearing about really good outcomes.

Regards,
Linda

jrnyc
04-18-2010, 11:47 PM
wellll...i havent had any fusion...yet...and my discs are really bad now...gotten worse recently, though the curves have been stable for a year...so if guess there is just no way of being sure...i mean, if you hadnt had any surgery at all, you'd probably be in worse shape all over....
anyway, i hope the injections do help you...i know from all the different kinds i've tried, some help... and some dont....but i think they are definitely worth a try!

when you...and i...do join the "pelvic people" club, at least, from what i've seen on this forum, we'll be in good company! :)

take care...and thanks again for all the knowledge you so generously share!
jess

titaniumed
04-19-2010, 01:15 AM
I had no choice in my fusion length. My low end was so hammered that I didnít even question going to the pelvis. I guess through the years of seeing surgeons pointing to my x-rays, and shaking their heads, prepped me. I did ask to drop down from T2 but my surgeon would not deviate at all. I was also warned that there would be no guarantees on anything, pain relief or correction. With the mind blowing pain I was in at the end, I had no choice, I went as long as I could go.

Rich
I used my sock installer for a few months till I got tired of fiddling with it and figured out that I really didnít need it at all anymore.

If you use a stool about 30 inches high, or any platform of that height, just set your heel up there, holding your toes up. Reach down to get the sock started, then pull it up. Donít pull too hard right now as you are not fused, move slow.

Get yourself a long shoe horn, it will help quite a bit with the shoes. I use one, but I can get away without it.

I have skied hard 2 days in a row this weekend and I believe I'm winning the battle. The post surgery fatigue battle that is. Its hasnít been easy, the first runs in the morning can be trying... my muscles are saying, "cant you give us a break?"
Probably not.
Ed

tonibunny
04-19-2010, 06:11 AM
He said the lowest he could start with the fusion is T2 so he will be fusing T2 to L1 at least when he does it. I will have limitations because I am very thin and the rods will interfere with my muscles. The revision surgery, after the fusion is complete will probably be what releases my arms. At least that is what my understanding is. My curve is so high that my head comes out of my shoulders at a 46* angle. I would like him to straighten my neck, it gets quite sore just holding my head up to look "normal". When I let it droop to the right, the weight of my head also causes neck strain. It's a lose, lose situation if you ask me. I want him to fuse as high up as he can and still leave me with most of my neck mobility. Some diminished function would be fine with me because when I have flare-ups, I can't turn my head at all, look up or down, nothing. Forturnately, I just have mild limitation most of the time.


Oooch, you sound like a very unusual case. I hope the rods turn out to be more comfortable than predicted! Hopefully once they're removed you won't have any problems. I have no noticeable restriction in my arm movements and I'm fused to T1.

fandango
04-19-2010, 07:20 AM
do you think it would be a good idea to have a part of the forum specifically for people to post who have not had satisfactory results?

I get the feeling from posts here that those people are more reluctant to share their stories, amidst all the happy success stories.

joyfull
04-19-2010, 09:24 AM
I, for one, think that is an excellent idea.

CHRIS WBS
04-19-2010, 09:45 AM
My doctor alread told me I won't be able to raise my arm above my shoulders after the first surgery. He said it would be hard to play the piano, swim, and do other things.

I am fused from T4 to the pelvis and I remember my surgeon telling me that I would always have a problem with sitting. I have had absolutely no problems with sitting. I think that these surgeons will sometimes present the worst case scenarios. But weíre all different and what may have been one patientís experience does not necessarily mean that will be your fate as well.

rohrer01
04-19-2010, 09:50 AM
Oooch, you sound like a very unusual case. I hope the rods turn out to be more comfortable than predicted! Hopefully once they're removed you won't have any problems. I have no noticeable restriction in my arm movements and I'm fused to T1.

Maybe I will be fortunate, like you. He just has to tell me the worst case scenario, just in case it happens. He said because I am thin I would likely be able to feel the rods through my skin. I'm not quite sure what I can do about that??? Thanks for the concern. :)

hdugger
04-19-2010, 10:18 AM
do you think it would be a good idea to have a part of the forum specifically for people to post who have not had satisfactory results?

I get the feeling from posts here that those people are more reluctant to share their stories, amidst all the happy success stories.

I think that's true - there was a discussion here a few months ago on the same subject.

It's a forum culture thing. At the scoliosis support forum (the one Tonibunny moderates) you hear much more discussion about post operative pain and problems needing revision therapy. I wondered for awhile if surgeries were just less successful in England, but I decided it just has to do with what people are comfortable talking about.

Pooka1
04-19-2010, 10:30 AM
I think that's true - there was a discussion here a few months ago on the same subject.

It's a forum culture thing. At the scoliosis support forum (the one Tonibunny moderates) you hear much more discussion about post operative pain and problems needing revision therapy. I wondered for awhile if surgeries were just less successful in England, but I decided it just has to do with what people are comfortable talking about.

I have had the same thought about SSo. There seems to be a much higher complication rate. There are cases of persistent serious pain in young people, need for revisions very soon out in young people, etc. It certainly seems different from here. It is hard to believe the quality of surgeons in the UK is different from that in the US.

The sample size there and here is so small and is self-selected so it is impossible to say what it going on. Maybe Toni has some thoughts.

tonibunny
04-19-2010, 10:37 AM
Maybe I will be fortunate, like you. He just has to tell me the worst case scenario, just in case it happens. He said because I am thin I would likely be able to feel the rods through my skin. I'm not quite sure what I can do about that??? Thanks for the concern. :)

I agree, the consultants do have to tell you the worst-case scenario. I do hope that you end up better off than expected :)

I've always been very thin too, and although I'm average height I was 6.5 stone at the time of the surgery when I was 18 (I went down to five and a half stone in hospital, which was horrid!) I can feel my rod and it has never bothered me, but I have a Harrington Rod in the posterior of my spine, which is a much simpler construct than rods with pedicle screws. I have some pedicle screws myself now (had the fusion extended down one level last year) but they are at L3-L4 and aren't as prominent as they would be further up.

Doodles
04-19-2010, 11:38 AM
Linda--
So is being fused to the pelvis actually farther than S1? I have had mine referred to as to the pelvis (I do have the big iliac? screws into the pelvis) and S1 and recent x-rays locally put it at S2. I think in the end it's all about the same. Guess it is in the end! Thanks for your info. Also, Pooka, I like your idea for another section on the forum. Janet

Pooka1
04-19-2010, 12:17 PM
Also, Pooka, I like your idea for another section on the forum. Janet

That is fandango's idea, not mine thought I agree.

tonibunny
04-19-2010, 12:32 PM
I have had the same thought about SSo. There seems to be a much higher complication rate. There are cases of persistent serious pain in young people, need for revisions very soon out in young people, etc. It certainly seems different from here. It is hard to believe the quality of surgeons in the UK is different from that in the US.

The sample size there and here is so small and is self-selected so it is impossible to say what it going on. Maybe Toni has some thoughts.


To be fair, the people who are having most trouble at SSO at the moment seem to be adults who have had surgery for severe kyphosis. Those who have had surgery for scoliosis seem to do much better. Also, don't assume that everyone is from the UK! Although based in the UK, SSO isn't just made up of people from there; I think it's about 50% from the UK and Ireland, and 50% from elsewhere including Australia, New Zealand, mainland Europe and a handful from the US. Some of those having ongoing problems are actually from the US (there are at least 3 in the first couple of pages of the General Forum), and the lady with the severest curvature on the board is also from the US.

Ireland, being a separate country, has a completely different healthcare system to the UK and they have had great problems there in terms of scoliosis treatment because they're under so much strain.

I think the top three or four UK surgeons are probably on a par with many of those at the top end of the field in the US. You rarely hear of people having ongoing complications if they were operated upon by the guy who did my surgery, for instance. There are also a couple of consultants who I don't have any faith in whatsoever!!! You do occasionally get people who have been treated by surgeons who aren't specialised in spinal deformity, with disastrous results.

So, all in all, I don't think the UK is significantly worse than the US.

Nitram
04-19-2010, 01:46 PM
thanks for the suggestions Ed....I'll give that a try for the socks. I have the long shoehorn and that works great!

Rich



Rich
I used my sock installer for a few months till I got tired of fiddling with it and figured out that I really didn’t need it at all anymore.

If you use a stool about 30 inches high, or any platform of that height, just set your heel up there, holding your toes up. Reach down to get the sock started, then pull it up. Don’t pull too hard right now as you are not fused, move slow.

Get yourself a long shoe horn, it will help quite a bit with the shoes. I use one, but I can get away without it.

I have skied hard 2 days in a row this weekend and I believe I'm winning the battle. The post surgery fatigue battle that is. Its hasn’t been easy, the first runs in the morning can be trying... my muscles are saying, "cant you give us a break?"
Probably not.
Ed

hdugger
04-19-2010, 01:55 PM
So, all in all, I don't think the UK is significantly worse than the US.

That's the conclusion I ended up reaching. I think the differences have to do with the type of operations being performed and with a forum culture that seems to make people more comfortable about sharing their post-surgery problems.

But, I did wonder about it at first.

jrnyc
04-19-2010, 02:11 PM
they have some great scoli surgery in Canada, and they have "socialized medicine" there...my sister's been living in Canada (Montreal area) about 35 years...has no major complaints about the health care, though i tease her all the time! :rolleyes:

jess

fandango
04-19-2010, 03:12 PM
I think that's true - there was a discussion here a few months ago on the same subject.

It's a forum culture thing. At the scoliosis support forum (the one Tonibunny moderates) you hear much more discussion about post operative pain and problems needing revision therapy. I wondered for awhile if surgeries were just less successful in England, but I decided it just has to do with what people are comfortable talking about.

It would be really helpful for people like myself, who haven't yet had surgery (or 100% decided to go ahead) to see these discussions. It's important to hear the reality of unsuccessful surgery I think...

Pooka1
04-19-2010, 03:18 PM
It would be really helpful for people like myself, who haven't yet had surgery (or 100% decided to go ahead) to see these discussions. It's important to hear the reality of unsuccessful surgery I think...

Completely agree. It helps patients formulate better questions to ask their surgeons I would think. Patients can learn to differentiate between various scenarios.

fandango
04-19-2010, 03:20 PM
To be fair, the people who are having most trouble at SSO at the moment seem to be adults who have had surgery for severe kyphosis. Those who have had surgery for scoliosis seem to do much better. Also, don't assume that everyone is from the UK! Although based in the UK, SSO isn't just made up of people from there; I think it's about 50% from the UK and Ireland, and 50% from elsewhere including Australia, New Zealand, mainland Europe and a handful from the US. Some of those having ongoing problems are actually from the US (there are at least 3 in the first couple of pages of the General Forum), and the lady with the severest curvature on the board is also from the US.

Ireland, being a separate country, has a completely different healthcare system to the UK and they have had great problems there in terms of scoliosis treatment because they're under so much strain.

I think the top three or four UK surgeons are probably on a par with many of those at the top end of the field in the US. You rarely hear of people having ongoing complications if they were operated upon by the guy who did my surgery, for instance. There are also a couple of consultants who I don't have any faith in whatsoever!!! You do occasionally get people who have been treated by surgeons who aren't specialised in spinal deformity, with disastrous results.

So, all in all, I don't think the UK is significantly worse than the US.



Really? why is kyphosis surgery more problematic? that's what mine is for:(

hdugger
04-19-2010, 03:22 PM
Really? why is kyphosis surgery more problematic? that's what mine is for:(

I'd strongly recommend checking out the SSO forums. They have a whole section on kyphosis surgery - http://www.scoliosis-support.org/forumdisplay.php?f=27

Toni will know the answer to this better then me, but I think it has partly to do with how rigid Scheuermann's Kyphosis is, and how difficult it is to get the correct saggital balance.

Edit: Oh, and also to do with the wedging in Scheuermann's Kyphosis

Pooka1
04-19-2010, 03:25 PM
Really? why is kyphosis surgery more problematic? that's what mine is for:(

Wait a minute. There might be someone who knows the answer to that in this sandbox but I am not convinced that is the case.

It just so happens that two of the more problematic cases on SSo at the moment are kyphosis but one of those guys resumed smoking so that probably explains that one.

I REALLY don't think we can generalize.

There are more cases of scoliosis problems, one in particular an anterior procedure, compared to kyphosis as far as I can tell, but the numbers are so small that we can't tell from that alone which is more problematic (if one is).

hdugger
04-19-2010, 03:34 PM
Wait a minute. There might be someone who knows the answer to that in this sandbox but I am not convinced that is the case.

It just so happens that two of the more problematic cases on SSo at the moment are kyphosis but one of those guys resumed smoking so that probably explains that one.

I REALLY don't think we can generalize.

There are more cases of scoliosis problems, one in particular an anterior procedure, compared to kyphosis as far as I can tell, but the numbers are so small that we can't tell from that alone which is more problematic (if one is).

Everyone that I know of who's been evaluated for kyphosis surgery has been told by their doctor that it has a higher complication rate then scoliosis surgery. I think that's pretty well accepted.

tonibunny
04-19-2010, 03:38 PM
It would be really helpful for people like myself, who haven't yet had surgery (or 100% decided to go ahead) to see these discussions. It's important to hear the reality of unsuccessful surgery I think...

Well, there is a very useful forum for Revision Surgeries here at NSF.

The problems being seen in the SSO people who had kyphosis surgery is that they have developed "Junctional Kyphosis", ie the unfused part of their spines have continued to curve over at the top of their fusions. Surgeons generally try to keep the fusion as short as they can, in order to preserve mobility, but occasionally it turns out that they really should have fused higher up. In addition, as Pooka1 says, there's a chap whose spine hasn't solidly fused and this is possibly because he smoked in the immediate post-op period.

Pooka1
04-19-2010, 03:43 PM
Everyone that I know of who's been evaluated for kyphosis surgery has been told by their doctor that it has a higher complication rate then scoliosis surgery. I think that's pretty well accepted.

Okay fine. Learn something new.

tonibunny
04-19-2010, 03:48 PM
I'd strongly recommend checking out the SSO forums. They have a whole section on kyphosis surgery - http://www.scoliosis-support.org/forumdisplay.php?f=27

Toni will know the answer to this better then me, but I think it has partly to do with how rigid Scheuermann's Kyphosis is, and how difficult it is to get the correct saggital balance.

Edit: Oh, and also to do with the wedging in Scheuermann's Kyphosis


Cheers Hdugger, but I'm afraid I really don't know much about Scheuermann's, having scoliosis myself :o Kyphosis surgery usually involves the cutting of "osteotomies" (sections of bone) from the vertebra though, which is quite a brutal procedure and isn't generally needed for scoliosis surgery.

jrnyc
04-19-2010, 03:51 PM
hmmmm.....Dr Lonner tells me he does not need to fuse higher than L4 and T11 on me...though i have a thoracic curve of 42...i specifically asked about future need for fusion higher up...he said that cant be predicted but he does not think it will happen...also said a surgeon doesnt fuse on the "chance" that somethng may happen...when the fusion is not needed now...


jess

hdugger
04-19-2010, 03:56 PM
Really? why is kyphosis surgery more problematic? that's what mine is for:(

Sorry, I think I gave a pretty off-hand answer for this, forgetting I was talking to someone who might have to undergo the surgery. My son has kyphosis too (as well as scoliosis) so I've been buried pretty deep in the data for awhile.

Scheuermann's Kyphosis specifically has an additional surgical step (the one Toni describes) where you unwedge the vertebrae. "Regular" kyphosis has some risk of sagittal plane imbalance which seems to lead to junctional kyphosis in some cases. I'm just now trying to get a handle on the likelihood of this risk, but I know that it's higher for kyphosis patients then in scoliosis patients.

jrnyc
04-19-2010, 04:09 PM
ummmm...did you mean that osteotomies are brutal procedures? i apparently need a couple of otomies...2 osteotomies and a couple of laminotomies or laminectomies or some kind of ot/ectomies....:)

this is the first time the surgeon mentioned those procedures to me...i kinda dont care..i mean, once they cut me open, they can do what they have to do...i know i have listhesis...dont know about kyphosis...but i do know that my back is a mess :rolleyes:

jess

Susie*Bee
04-19-2010, 04:16 PM
This thread got me back... the discussion on why there are not that many people saying negative things about their surgeries got to me. I have even had some people mention to me that they were asked to stop posting things that would scare or discourage others.

I am pleased with my own surgery, glad I went through it, appreciate all the benefits, but even so it is not what I expected. My recovery was (is) much slower than most of you who are still posting. I didn't realize some of the limitations that I have. Some things are little-- like trying to bend over the table to work on a poster. Just can't do it. As others have said, I figure out how to do some things in other ways.

I've been on the forum long enough to befriend some who had lousy outcomes. It happens, even if not as often. One ended up with 8 (or was it 9?) surgeries. Another was in rehab and on a respirator for over a year and struggled to be ambulatory again. And I know there were some who got along mostly ok but mentioned other problems like grocery shopping and other every-day type activities. One said she had a difficult time lifting a milk carton and smallish grocery bags. She wondered if it would ever get better...

These are not common problems-- and maybe some of them can be resolved with more time. But for the ones who are enduring extra pain and problems, time ticks slowly and it is easy to feel despondent.

When I first joined the forum about 2.5 years ago, it seemed like there were more posters who talked about their problems. I am amazed at the change-- this past year or so, the ones who had surgery recovered lickety-split and are doing great things. That is wonderful-- but at the same time I'm not sure if it's a true picture or not. There may be others who feel embarrassed or ashamed that they haven't bounced back as quickly. There's something in human nature that causes us to blame ourselves if we don't do as well, and then we feel like failures. It's much harder to post when things aren't going as well as one would like... We all heal differently.

Just wanted to say that there have been others with problems, people are reluctant to sound negative, and some have even been asked to refrain from doing so.

tonibunny
04-19-2010, 04:33 PM
ummmm...did you mean that osteotomies are brutal procedures? i apparently need a couple of otomies...2 osteotomies and a couple of laminotomies or laminectomies or some kind of ot/ectomies....:)

this is the first time the surgeon mentioned those procedures to me...i kinda dont care..i mean, once they cut me open, they can do what they have to do...i know i have listhesis...dont know about kyphosis...but i do know that my back is a mess :rolleyes:

jess


Some types of osteotomies are more "brutal" than others, it depends on what type you need. Any sort of surgery where they remove chunks of bone is going to be harsher than a surgery which doesn't require this, therefore a kyphosis surgery with osteotomies is going to be harder than a typical scoliosis surgery which doesn't require them. Likewise, a scoliosis surgery with a thoracoplasty is going to be more brutal than a scoliosis surgery without one.

I too am sorry for using this language in a thread where you're waiting for surgery, but it sounds like you prefer if we were honest. I'm glad you have one of the best surgeons in the US looking after you! :)

jrnyc
04-19-2010, 04:54 PM
Tonibunny...
Are you writing of the osteotomies from having had one...or two...or have relatives who've had osteotomies....or is it from the perspective of a professional nurse or other medical position....
i am curious as to what your perspective is...

jess

tonibunny
04-19-2010, 05:06 PM
Neither, I'm writing from the perspective of someone who's watched several of their close friends have surgeries which involved osteotomies, and of having moderated a scoliosis/kyphosis forum for nine years.

I have had a couple of thoracoplasties though (that also involves removing bone), and I have had bone removed from my hip for a bone graft material. Having a bone cut is always going to be more difficult than not having it cut.

jrnyc
04-19-2010, 05:23 PM
O.K....thanks for clearing that up...

i kinda expect alot of pain from the surgery...i have a pretty good threshold for it, though i am no superwoman! :rolleyes:
Dr Lonner gave me some specifics about taking out bone and putting it somewhere else and replacing with or adding BMP or something...i was getting kinda overwhelmed at that point...and shocked that he was offering to do minimal invasive...so another visit will be needed.....with notes...

i am not differentiating which pain will come from what...though i guess after surgery and once healing started, that would be possible and maybe even necessary...i dont know...the only bone grafting stuff i've had to this point is dental...and it wasnt fun, though it has healed quickly and well...

jess

Singer
04-19-2010, 06:24 PM
Thanks for writing, Susie. It does seem that in the past year or so there's been a surge of ultra-fast recoveries, and I've wondered about it myself. I have to say that I agree with your overall assessment of the surgery -- glad I had it done, life's good, but it hasn't been quite what I expected either. At almost three years post-op, I'm pretty sure I've "peaked" -- my biggest improvements came between one and two years.

I wonder if surgeons are getting better and better at fusion technology. I know I've seen less anterior incisions than I used to, and certainly less thorocoplasties. I think the increased use of BMP has also speeded up fusion times, so that people seem to regain their flexibility and return to normal activities more quickly.

Hhmmm...Interesting to think about.

jrnyc
04-19-2010, 07:59 PM
Hey Chris
the newer minimal invasive...which used to be used for thoracic, i believe, but now is also used for lumbar...involves less cutting of muscles, less blood loss....a little less trauma to body...that is what i will be doing....i've kinda been waiting for someone on east coast...who takes my insurance...to do this...as doctor in CA doesnt take it....
low and behold....it is my NYC surgeon who has followed my curves for over 5 years...so although a year ago the talk was of the full open surgery...what i call "filet of fish"...here he is now agreeing to minimal invasive....2 or 3 small incisions on side...then poking thru muscles in back...equivalent of relatively short incision...compared to full open cutting....not perfect...but better....

it used to be that surgeons would say..."oh no, you dont qualify for that...your curves are too bad"...or too...something....not any more...

i think that all surgery improves over time...and scoliosis surgery will as well....just a matter of time....

jess

csc
04-19-2010, 08:04 PM
First of all, I want to say that my husband and I did question about not lengthening the fusion to the sacrum but we were assured that the remaining discs were healthy. We trusted the doctor's expertise and continue to do so. He has been a member of SRS for years. He did not see a need. The surgery was successful in that now I'm straight. It's just coping with persistent pain. Kept telling myself for a long time that I was healing. But I knew something was wrong when I found I could not even tolerate water therapy. For some reason arthritis set in very quickly in my case. I consider myself fortunate that I don't have any other health concerns.
So I guess I posted yesterday morning to try to find ideas from members about coping with it. I would never try to dissuade anyone that needed this surgery from it. Most are successful and I love reading the inspiring stories.
Thanks all!

jrnyc
04-19-2010, 08:25 PM
Hi csc
excuse me for saying this...but i wont consider my surgery successful if i am straight but in excessive pain...my surgeon told me...no guarantees...but he expects me to be in less pain than before surgery...and maybe alot less...

of course, alot of my pain is from degenerative discs...which will be cleaned up....i think osteotomies and laminectomies will deal somewhat with my spinal stenosis...not sure exactly what they will fix, but i have a vague idea.. i will have another appointment with my husband with me to take notes or record the session...for all details...

i sincerely hope that there is a solution to the pain that you live with....is there a chance a surgeon will tell you the answer will be to fuse the lumbar portion of your spine? i know it must be awful to consider another surgery, but if that could possibly be the answer...might you consider that?
what harm would it do to consult a different surgeon now...?

best regards
jess

Doodles
04-19-2010, 10:14 PM
Susie--Good to hear from you and thanks for your post.
I had several osteotomies with just scoliosis surgery. Maybe that explains my slower recovery. Janet

joyfull
04-19-2010, 11:30 PM
Chris, What do you mean when you say you "peaked?" How are you feeling now? I suppose with age, we have to expect some setbacks.

I am so anxious about have this surgery since I have no pain now and a very good quality of life. My only issue is that I sometimes get winded after exercise, but I can walk a mile or two easily. I do have quite a severe kyphosis and am going to have osteotomies and the like. Cosmetic improvement is definitely a part of my decision.

How long does this "post surgery fatigue" usually last? I'm so worried about a really long recovery.

I am having a minimally invasive side procedure for the anterior release, then a fully open posterior procedure. I am also encouraged by the wonderful recoveries that I've been reading about. It's good to have a reality check and to realize it's not so easy for everyone.

Joy

LindaRacine
04-19-2010, 11:53 PM
Linda--
So is being fused to the pelvis actually farther than S1? I have had mine referred to as to the pelvis (I do have the big iliac? screws into the pelvis) and S1 and recent x-rays locally put it at S2. I think in the end it's all about the same. Guess it is in the end! Thanks for your info. Also, Pooka, I like your idea for another section on the forum. Janet

Hi Janet...

Well, yes, although they don't actually fuse to the pelvis (usually). The pelvis connects to the spine at the S-I joints, which aren't usually fused. The fixation to the pelvis is meant to keep the L5-S1 level from moving so that fusion can take place.

In the following article, you can see screws from S2 to the pelvis in the second set of images.

http://www.southernarizonaspine.com/For_doctors/s2fixation.html

Hope that makes sense.

Regards,
Linda

LindaRacine
04-20-2010, 12:25 AM
This thread got me back... the discussion on why there are not that many people saying negative things about their surgeries got to me. I have even had some people mention to me that they were asked to stop posting things that would scare or discourage others.



If that statement is true, it did not come from me, and I doubt it came from Joe O'Brien, who is the only other person who does any moderation.

Why do you think people specifically came to you to report that this was happening? Has anyone else had it reported to them?

Susie*Bee
04-20-2010, 05:14 AM
Linda-- it did not come from anyone with authority, but was pressure from an individual or two who felt they were looking out for the best interests of the people on the forum. People didn't "report" it to me, per se, but rather mentioned it in passing... in a PM or email. They weren't complaining about it, just stating they weren't posting much anymore, etc., because of it.

Singer
04-20-2010, 06:51 AM
Joy, by "peaked" I mean that I believe I have seen the last of dramatic improvements in terms of flexibility and overall comfort. I feel good overall; I just have lingering soreness/tightness/numbness (probably scar tissue) around the area where I had a thoracoplasty, and some lumbar stiffness, but it's mild to moderate most days and I can pretty much do whatever I want. I still use an inflatable pillow when I eat out or sit in hard-backed chairs for any length of time, but I no longer take a pillow with me everywhere, like I did for the first year and a half.

I've observed that people who have posterior-only surgeries, or small anterior incisions, recover about twice as fast as those of us who have long anterior cuts -- in my case, from hip to shoulder blade (I like Jesse's "filet of fish" term -- I call it my shark bite!). One thing's for sure, though -- I am fused rock solid and my cosmetic result is beyond excellent. :cool:

Doodles
04-20-2010, 08:42 AM
Linda--Thanks for that information. When I have more time I'll take a better look at the x-rays. Janet

LindaRacine
04-20-2010, 10:10 AM
Linda-- it did not come from anyone with authority, but was pressure from an individual or two who felt they were looking out for the best interests of the people on the forum. People didn't "report" it to me, per se, but rather mentioned it in passing... in a PM or email. They weren't complaining about it, just stating they weren't posting much anymore, etc., because of it.

Odd that no one ever mentioned anything to me.

LindaRacine
04-20-2010, 10:13 AM
Joy, by "peaked" I mean that I believe I have seen the last of dramatic improvements in terms of flexibility and overall comfort. I feel good overall; I just have lingering soreness/tightness/numbness (probably scar tissue) around the area where I had a thoracoplasty, and some lumbar stiffness, but it's mild to moderate most days and I can pretty much do whatever I want. I still use an inflatable pillow when I eat out or sit in hard-backed chairs for any length of time, but I no longer take a pillow with me everywhere, like I did for the first year and a half.

I've observed that people who have posterior-only surgeries, or small anterior incisions, recover about twice as fast as those of us who have long anterior cuts -- in my case, from hip to shoulder blade (I like Jesse's "filet of fish" term -- I call it my shark bite!). One thing's for sure, though -- I am fused rock solid and my cosmetic result is beyond excellent. :cool:
I also had a long recovery. I don't think I had full energy for a year after surgery. I also had a very long anterior incision. Thankfully, most surgeons (at lease the top surgeons) are no longer using those long incisions.

I also think one's age and fitness plays a big part in recovery.

--Linda

Singer
04-20-2010, 11:27 AM
I was actually very fit at the time of my surgery and therefore sailed through the actual procedure in terms of getting off the respirator, out of ICU, and starting to eat pretty quickly. But recovering from the anterior cut and thoracoplasty knocked me for a loop. The last I heard, Boachie was still doing those incisions occasionally, although I believe he is starting to do the less-invasive "keyhole" approach more often. Oh well, I have to believe I got the surgery that was right for me at the time.

joyfull
04-20-2010, 12:48 PM
Linda, Chris, I am having surgery on June 8th and really need to be ready to go back to work in September. I am a teacher without tenure. If I postpone the surgery until next summer, I'll have tenure and my position will be more secure. I am seriously considering postponing it. My curve is 85-90 degrees thoracic.

My surgeon thinks it it "not unrealistic" to think that I'll be able to go back to my 4 day a week job in September. I'm having the minimally invasive anterior release, then an open posterior, an 8 to 10 hour surgery. I would appreciate hearing your thoughts about this. Thanks, Joy

LindaRacine
04-20-2010, 02:07 PM
Linda, Chris, I am having surgery on June 8th and really need to be ready to go back to work in September. I am a teacher without tenure. If I postpone the surgery until next summer, I'll have tenure and my position will be more secure. I am seriously considering postponing it. My curve is 85-90 degrees thoracic.

My surgeon thinks it it "not unrealistic" to think that I'll be able to go back to my 4 day a week job in September. I'm having the minimally invasive anterior release, then an open posterior, an 8 to 10 hour surgery. I would appreciate hearing your thoughts about this. Thanks, Joy

Hi Joy....

Since you're not in extreme pain, and your curve isn't likely to progress rapidly, I'd personally opt for waiting for the tenure. It is probable that you'd be able to go back to work in September. But, as you already know, there's no guarantee. My thinking is "why take the chance when waiting a year will give you more peace of mind?" The only downside that I can think of is that you'll have another year to obsess about the surgery. ;-)

Regards,
Linda

allycat
04-20-2010, 05:37 PM
Unfortunately I haven't had much time to be on the forum lately which is quite distressing to me. I love this place and it's where I go for my "Me" time. Life has really been getting in the way of my "ME" time and I'm just not very happy about that!
I usually only post in the revision section since I'm now in the market for a major revision, but I always peruse the other areas to make sure I'm not missing out on some great information. Several days ago I took a quick tour of the forum to see what's been going on and when I saw the title of this thread, quite frankly, I dismissed reading it. The reason? I did not want to be a wet blanket at anybody's picnic. But as I skimmed over it today I saw csc and Janet and maybe others (like I said, I skimmed) had posted less than glowing reports of their surgical outcomes so I decided to join the party. I hope no one will mind.
I've given quite a few hours of thought to the question "Do I regret having surgery in the first place?" and after much soul-searching my true answer is yes. There are several factors that play into my decision, pain being right at the top of the list. Prior to my original surgery, the surgeon said in no uncertain terms there was no guarantee the surgery would eliminate or even help the pain. The goal of fusion surgery, according to him, is to prevent the progression of the curve. If the pain improved it was a bonus. I was not awarded the bonus prize. In addition to the pain, I've developed junctional kyphosis above the fusion and arthritis below the fusion. There are other challenges but for the sake of time and because I do not want to hijack the thread I'll stop there. I will be more than happy (what does that make me, crazy?) to answer any and all questions. Feel free to send me a PM or I can email.

foofer
04-20-2010, 07:05 PM
Hi all,

Really appreciate all those who posted the good, the bad, and the ugly on this thread.

Joy: I am in a similar boat- my curves are not as large as yours - 64T,65L, but may be progressing rapidly. Will find out a bit more in early May at next MD appt. I've been to two docs, one who measured 8 degrees less per curve, and a year later it appeared that I was progressing when measured by another doctor. The 2nd doctor, more renowned, measured the curves himself- I watched him. My feeling is that I did advance quite a bit, but now feels "stable" again. I am not in awful pain, but it does wake me up at night and does make me constantly uncomfortable, but nothing I cannot presently handle. I just finished a 3 day weekend working on a company project that involved a lot of fast-moving work, on my feet all day...14 hour days starting at 5 a.m., ending at 7:30 p.m., and then big dinners for a couple hours. Had to bring a backpack of each day's supplies as no access to one's "stuff", working at 12,000 feet. It occurred to me that having scoliosis w/o major benching pain is like dragging that backpack around, not having packed properly with even weight distribution. Too many heavy bulky items on the upper right and lower left (I have an S curve) and lightweight items in the opposition. Every day is a long day shlepping around my uneven backpack, aka my back, but the point is: I can do it. And once a year when I have to work on this April project, I surprise myself that I can still be on my feet for 14 hours and be a good contributing worker.

The point of this long-winded story is that I am agonizing over the idea of threatening the existence I can still manage. And I need to work. So I am extremely grateful to hear the good-news stories as well as the huge disappointments. I came onto this forum last November, and as others have noted, the stories have mostly been all successful reports. Hearing the "bad" ones is good for us to help with decision-making. If I decide to go ahead with the surgery, I will be armed with the truth, the best way to head for battle.

CSC, Doodles, Singer, Linda, Becky, Susiebee: Thanks for your testimonies and please do not withhold your experiences. You have no idea how much it helps to get the best cross-section of personal reports.

I hope others will post their stories here, both positive and negative.

Amy

LindaRacine
04-20-2010, 09:22 PM
Hi Becky...

Thanks for posting, and for being so honest. While I was in my pain free (or reasonably pain free) post op years, I thought my surgery was definitely worthwhile. In hindsight, I'm less certain. I wish I had met a really good physical therapist (such as the one I found about 8 years or so postop) who might have helped me put off surgery for awhile. I'm almost positive that I still would have required surgery at some point, but I think that the intervening years have brought innovations that might have helped me have an easier recovery and a better long-term outcome.

With that said, I think that if one chooses a really talented, experienced surgeon, one can have an excellent outcome. I see them every week. I think I work for some of the most talented scoliosis surgeons in the world, but even so, we still have a small percentage of people who aren't happy with their outcomes, and some people who need revision surgery.

Anyway, welcome back.

Regards,
Linda

golfnut
04-20-2010, 09:45 PM
Joyfull,
I only have occasional mild back pain, but have surgery scheduled for Nov. 1st. Dr. Lenke said that my prognosis is not good if I don't have surgery. I think if I had severe pain now, I wouldn't be second guessing myself. I have 3 brothers that think I'm making a mistake. My husband wants it to be my decision. I was feeling pretty good about making the decision for surgery, thinking that I would sacrifice 1 year of golf, tap dancing, etc., for better odds for an active life for many more years. I am a little worried about going into the surgery at age 60, although I think I'm in fairly good health. I have felt encouraged by all the positive stories of recoveries, but appreciate hearing some of the not so rosie outcomes. I went to the revision section of the forum one day and decided not to do it again! I know Dr. Lenke is excellent, but I'm still really nervous.

joyfull
04-20-2010, 09:56 PM
Karen, I can really relate to your situation. It's so hard to walk into this feeling pretty good. My surgery is coming up in about 6 weeks! People here rave about Dr. Lenke, but Janet (Doodles) is now expressing some disappointment. Dr. Lonner is supposed to be excellent as well. I do know that Karen Ocker says that people can really die from complications from scoliosis, and I know this to be true. I suppose at some point it is a leap of faith. Joy

JenniferG
04-20-2010, 10:30 PM
I have my very experienced surgeon to thank for my success. He specialises in scoliosis surgery in all ages and does several such surgeries every week. I am over a year out and pain-free and there's nothing I can't do, but I am not 100% convinced that I will always be pain or symptom-free. I live with the fear in the back of my mind that this might not last. I don't lift heavy items and I don't run - my only restrictions, and I just hope that my back will stay healthy until the end of my days. Never does a day go by that I'm not incredibly grateful and at almost 59, I make the most of every day in case my luck doesn't hold out.

I have just finished a business course and am starting up a small business, something I couldn't see in my future, a little over a year ago, so it has changed such a lot for me.

Singer
04-21-2010, 06:45 AM
Just to add a few more thoughts to this discussion: the hardest thing for me to digest mentally is the fact that with or without surgery, my back would never have been "normal." Sometimes it's been tempting to think I'd have been better off had I not had the surgery, but then I'm forgetting how quickly my curve was progressing and how the left side of my ribcage was almost resting on my hips by the time I got straightened out. The first time I went shopping after surgery, I gasped at how great clothes fit, and I still get a huge kick out of wearing form-fitting clothes for the first time in 30 years.

When faced with progression and/or pain and deformity, it's often easier mentally to stick with the devil you know rather than take that (surgical) leap into the unknown. I honestly believe that had I not had the surgery, I would have been very twisted by the time I reached my 60s.

Also, on the plus side, I could never do things like stand at the kitchen counter to cook, walk slowly through a museum, or shop for more than 10 minutes at a time without having to sit down, and now I'm good to do any of those activities for hours. I can't and won't run, but I can hike up and down strenuous trails with no problem.

So I guess the bottom line is -- having the surgery may not be a cure-all, but NOT having it will not save anyone whose curve is progressing from big problems. One way or another, it must be dealt with.

CHRIS WBS
04-21-2010, 10:03 AM
I had no pain from my scoliosis until five years ago when I reached 56. And then BAM, it hit me all at once. Over a two-month period it literally felt like my spine was collapsing. I would go to work only to leave two hours later to go home and collapse on my bed because I was having difficulty staying upright. That summer I lost 20 pounds because I could not eat out of fear over what was happening to me. I was told by one surgeon that my spine had probably shifted creating the sensation of internal collapse. How scary is that? I gradually improved and sought advice from surgeons. It became evident that I required surgical intervention if I wanted to prevent serious problems. This forum helped me tremendously. And I absolutely agree with Linda that choosing a talented and experienced surgeon improves your chances for an excellent outcome. I did not go into this surgery with great expectations, but my outcome is much better than what I had expected. Iím not going to say that there isnít anything I canít do now, because there are things I canít do. I canít get on the ground to plant my spring flowers. I can no longer back into a parking space. I canít climb a ladder to change light bulbs on a high ceiling or paint and wallpaper. I have difficulty cutting my toenails and tying shoes. But for me the benefits I derived from surgery exceed what flexibility I may have lost. Besides the cosmetic improvement, Iím now enjoying being able to stand in comfort so I can do things like cook, shop, travel and socialize after work. While my surgery was rough and I found recovery a challenge, I realize though that Iím fortunate that I did not experience any complications or lingering side-effects. If I had a less favorable outcome, Iíd probably find myself in the not-so-happy camp too.

Singer
04-21-2010, 10:35 AM
Chris, your surgical success really tickles me because you were an example of someone who went into surgery with a lot of fear and loathing -- and came out happily surprised at the results. I'm so happy for you!

Karen Ocker
04-21-2010, 01:26 PM
I know for sure I would have been severely disabled, on oxygen, and a burden to my husband and family.

Once I started getting easily short of breath it seemed that things rapidly worsened over months, not years. No matter how hard I exercised and did Pilates, it seemed I could not stop-even slow my rapidly deteriorating condition. This is why I have strong feelings about large curves needing attention-they do not stop by themselves.

When I consulted Dr. Boachie, about a revision--original surgery 1956-- he told me I would get worse and not to wait.
That being said I still have a 40 deg thoracic and 20 deg lumbar residual. The surgery itself did reduce my lung capacity because a chest approach was needed but it should not get worse since my curves are stabilized. The residual chest deformity stemming from my 100deg curve as a teen did not disappear with correction because my rib became rather pointed.
This is why I cringe when people wait so-long to address the issue. It comes from personal experience and nothing else.

I am totally pain free and delighted that I had the revision: T-4 to sacrum.

CHRIS WBS
04-21-2010, 03:06 PM
Chris, your surgical success really tickles me because you were an example of someone who went into surgery with a lot of fear and loathing -- and came out happily surprised at the results. I'm so happy for you!

Thanks, Chris. Yes I am quite happy with my results. And I think that's true for most people.

briarrose
04-21-2010, 06:47 PM
I wanted to add my thoughts and experiences to this thread as well. Overall, I am happy that I had the surgery, though not 100% happy with the outcome. I do have pain everyday (shoulder blade area, and right at the base of my fusion), which is anywhere from mild to debilitating. I was given a 60% chance that my pain would disappear, so I did not really expect it to completely go away. The pain is slightly less than it was pre-op (I no longer have the curve pain).

Another issue of mine is that my scar is wide and bright white. This really upsets me because it runs the length of my entire back and I know that most people have thin, faint pink scars after awhile. I don't know why this happened. I also have a rash on my back that occurred 3 weeks post-op that has yet to go away.

I also feel very limited in the things I can do. I physically cannot lift much weight without feeling some sort of pulling on my hardware, but maybe this is normal. I try to exercise more, but the pain will usually make me stop and then I give up all together.

I'm sorry I have so many negative things to say. I do like that I am much straighter and I no longer have a rib hump. I don't have to worry about my spine curving anymore which is a huge weight off of my mind.

The advice I would give to those facing surgery is to not expect a miracle. Things probably will improve, but it's not an easy, quick-fix.

Shell

Doodles
04-21-2010, 11:02 PM
Shell & all--
"Don't expect a miracle"--great advice. I don't think anyone would do this without knowing it was absolutely necessary. I knew I had to have it done without a doubt. Dr. Lenke is an amazing doctor. I think mine was so far gone and years of deformed ribs just couldn't be recitified.
I actually had my year check-up today in St. Louis. I asked specifically about my rib hump and that was basically what he said. He said it actually may have gotten a little worse since first few months after surgery which is what I had been seeing. He said it can sometimes "pop up" a little but shouldn't anymore. Since right side is so obvious the bottom left seems even more caved in too. (Still nothing like before surgery.) I think I was getting kind of discouraged thinking I was the only one who still had a rib hump after surgery. I asked for a measurement of the hump--somehow they didn't take one of mine before surgery but he thought it was about 20 based on my curve. Now it measured 12. I had never heard of this measurement before. Perhaps I should have asked more about rotation since maybe that's almost more of what I'm seeing. I don't know. I look OK to anyone if I have clothes on. Just stay away from bathing suits and skinny tops--and don't look at my back in a mirror.
Shell, your comment about the scar hit home too. Mine is very wide at top and the whole thing is very red and I've had a very slight rash forever too. Zertec and various Rx's from dermatologist didn't really work for long and I finally gave up on that. I later asked the resident with Lenke and she thought it might lighten a bit yet but I got the feeling after a year it's pretty much set??
Now I can supposedly bend (which they had me do and I'm horrible), twist and lift. I've done PT and been at gym all year but he thought I should get some pt to help with flexibility. I'll definitely give it a shot. I'd love to get back to classes for pilates which was approved but I have so much trouble even getting on the floor I can't imagine I'd do anything but lie there like a turtle.
Guess this turned into my check-up info post! Janet

naptown78
04-22-2010, 05:14 PM
I am one of the people who has now been on both sides. My orig surgery almost 2 years ago was a disaster. I did feel uncomfortable posting among all the success stories and felt very negative every time I did so. But I was looking for answers and support...I ended up having a revision surgery one month ago which has been so far a big success. I do think it is very important for people looking on this forum to know both sides of the story, both the successes and disasters.

debbei
04-22-2010, 07:18 PM
I am one of the people who has now been on both sides. My orig surgery almost 2 years ago was a disaster. I did feel uncomfortable posting among all the success stories and felt very negative every time I did so. But I was looking for answers and support...I ended up having a revision surgery one month ago which has been so far a big success. I do think it is very important for people looking on this forum to know both sides of the story, both the successes and disasters.

Kristy,
I am so glad things worked out better for you this time. I'm sorry you felt that you couldn't post when you had problems, and you're right, prospective patients need to hear both sides.

joyfull
04-22-2010, 09:46 PM
Naptown, Tell us who your new surgeon is! People should know if you had a great revision.

joyfull
04-22-2010, 09:49 PM
On the topic of scars, Dr. Lonner suggested calling in a plastic surgeon at the end to "close." He said that he's sort of wiped out by then anyway. Has anyone else had this?

LynnMarie74
04-22-2010, 10:04 PM
I am not regretful at all, with my decision to have my fusion. I do miss the flexability that I once had, but truly, I have no pain and have re-learned how to do everything I once did before...just a little different. At time, Im still scared to try to new things...for fear of breaking my rods...silly I know...or if I fall, will I hurt the fusion....stuff like that crosses my mind from time to time. But again, I wouldnt change a thing! :D



Hope all of my Scoli friends are doing ok!! Its been awhile since Ive been out here...not becuz Ive forgotten about you, just becuz Ive been doing so well and enjoying life!!

Cheers!

JenniferG
04-22-2010, 10:08 PM
It's a shame anyone who's having problems post-surgery feels they are "raining on others' parades" by stating what has happened to them. Their stories are just as important for those facing this surgery, to read. Nobody wants to hear a slanted version of the outcome of this surgery, we all want to know the absolute truth in order to make an informed decision. I know I did anyway, I remember asking for "the good, the bad and the ugly".

titaniumed
04-22-2010, 11:32 PM
You guys remember where that came from? The best western film ever!

http://www.imdb.com/title/tt0060196/

Clint Eastwood-the good
Lee Van Cleef-the bad
Eli Wallach-the ugly


Great film! Voted #4....

A movie basically about surviving during tough times.. In a way, thatís what we are. Clint Eastwood uses his knowledge to prevail in the end, and what an ending!!! Its always good to know what your up against.

We all need to know the truth.

If something happens to me, I will post here first. There is an incredible amount of knowledge and support here on this forum.
Ed

fandango
04-23-2010, 07:42 AM
I love Clint Eastwood, he remind me of my dad! One of my favourite all time films :)

Sharshe
04-23-2010, 09:00 AM
Well this sure has become a popular thread!
I am one of the ones who is still left with pain nearly 2 years post op. I currently see a pain management Dr and do aqua aerobics 2x week (though I can't do everything). The water really helps and the hot tub afterwards is a great incentive to get myself there. I had issues with a severe deep wound infection that presented after my posterior surgery. It took a year before it was safe to be off the antibiotics (both IV followed by oral).
I wish I had better results about the pain but knew going into it that there were no guarantees. Straighter would have been nice too, though with the osteopenia and stiff curves we played it safe. We were aiming on stabilizing things to prevent progression.
At this point I take things one day at a time and hope things improve. I have changed the way I do somethings like using the step 3rd up from the side) to put on socks and shoes, I wear slip on shoes when I go to the gym because the bench is too low.
All in all I would still do it again because things were only getting worse.

rohrer01
04-23-2010, 11:08 AM
Infection is one of the things that scares me the most. I'm really glad you got through it. I'm sure it was a horrible deal at the time. I hope you continue to get better.

jrnyc
04-23-2010, 02:22 PM
hi sharshe
how do you go to the gym!!??

i have not had surgery...yet..but had to give up the gym 3 years ago...just too much pain! if you are in pain all the time, i just dont get how you could exercise!!

before the pain got so bad, i went 3 times a week while working a full time plus a part time job! now...nothing!

hope you feel better and something at pain management helps the pain...

jess

jsully
04-23-2010, 08:21 PM
Last week upon scheduling my surgery. My dr asked if I wanted to stop at L-5 or sacrum. I decided to stop at L5 to keep more mobility because I am very active (gym, nursing four wheeling). After reading this I am concerned. I am aware some day I may have to go down all the way but was hoping for like 10 years from now. Not sure if I'm making the right decision just went with my gut?
Jan

spiritofbamboo
04-23-2010, 09:44 PM
While you can't get full text, PubMed is available to everyone:

http://www.ncbi.nlm.nih.gov/pubmed/

If you are close to a medical School like UCSF or Stanford, you can go to the library and access the full articles.

jrnyc
04-24-2010, 12:40 AM
Hey Jan
my thoracic is 42 degrees now......i can tell you what Dr Lonner said when i asked him about fusing only lumbar and not thoracic...he said a doctor wont fuse on the chance that a problem will develop in the future...

how fast have your curves been progressing...specifically the lumbar that you are not sure about...? what was that curve 2 years ago...?

if i could not go to pelvis even, and stop at sacrum, i asked Dr Lonner if that was possible...of course, now i realize pelvis or sacrum, not much difference...

if i were you and there were a good chance that i wouldnt be progressing rapidly, i'd try to wait...just look at how far they have come in one year...a year ago, no doctor would talk minimal invasive for lumbar to me....now it is becoming more common...what if you can get 5 or 10 years....how far will they be with advances by then...is there a chance you wont ever need lumbar done?

how many opinions have you gotten?


best of luck
jess

jsully
04-24-2010, 07:17 AM
I have had a lot of opinions. The reason we are even going that far is because of degenerated discs L3-L5 and low back pain because my curve is mostly thoracic. He did tell me I may have to come back in the future I was thinking 10 years would be OK, not 1 or 2. Wish I had a crystal ball. He doesn't want to make the decision for me, he wants me to decide.

Sharshe
04-24-2010, 01:02 PM
Hi Jess,
The gym I go to has a pool where I do aqua aerobics. I can't even do all of what they do. They also have recumbent bikes which I am allowed to do (though I haven't done that here, I'm tired enough after the pool). Recumbent is good because it takes the pressure off of the lower spine. You should of course go by what your surgeon or PT tells you. This is what my PM Dr prescribed.
Good luck to you.

jrnyc
04-24-2010, 01:27 PM
hey Jan...i have degenerative disc disease also...surgeon said my curves havent changed in the last year...but my discs are waaay worse! :eek: you have all my sympathy!

hi Sharshe....i used to do recumbent bike back when i could exercise...i started at 5 minutes (got out of breath) and worked up to 60! i was so proud of myself...but now the pain is just too bad.....and i really tried...when i got married & moved 3 years ago (after early retiring cause of pain) i joined a gym in CT right away...went 3 times...too much pain...and i used to love the lower body machines....no more :( i am happy you can use the pool to help you get some exercise and improve your strength!

jess

Back-out
04-27-2010, 02:02 AM
Please DO tell us the truth! :o Many of us are here for help making decisions and it's counter-productive to mislead us with artificially rosy expectations, if only from a 'response bias"!

As for me, I definitely want to know the truth. Half of preparation is mental (though much involves concrete planning according to ones expectations). I know that in order to get through the whole process, I not only need to make the best decisions possible in advance, but to get into the proper mindset!

I beg any readers who experienced hardship they were discouraged from expressing or describing (if only from a sense that it was unwelcome) to please speak up - and keep speaking up!

It's not just to prepare mentally either, as I've gotten many pointers from reading of other people's problems. Telling them, helps others avoid them - to the extent they can be considered under our control.

Back-out
04-27-2010, 02:10 AM
Thank you all, especially (maybe forgetting someone) Sharshe and Joyfull.

Joyfull, your comment was especially helpful. I don't know how the surgeons stand it for so long. Makes perfect sense.

golfnut
10-16-2010, 08:48 AM
I am getting some questions for Dr. Lenke for my pre-op appointment in Nov. and looked up this old thread to get some ideas for questions to ask. There were several posts from Joy which about brought me to tears. Although we don't really know each other, we definitely have a connection and closeness. I couldn't believe the similarities with Joy and me-close in age, both teachers, little pain, surgery scheduled for preventative purposes, fears, etc. One of her comments was that she was taking a giant leap of faith into this surgery. I am so saddened by Joy's outcome and feel terribly for her family, as I know others on this forum do, as well.

foofer
10-16-2010, 11:11 PM
I am getting some questions for Dr. Lenke for my pre-op appointment in Nov. and looked up this old thread to get some ideas for questions to ask. There were several posts from Joy which about brought me to tears. Although we don't really know each other, we definitely have a connection and closeness. I couldn't believe the similarities with Joy and me-close in age, both teachers, little pain, surgery scheduled for preventative purposes, fears, etc. One of her comments was that she was taking a giant leap of faith into this surgery. I am so saddened by Joy's outcome and feel terribly for her family, as I know others on this forum do, as well.

Me too, Karen. I think about her every day- such a hollow sad feeling. I wish we could know more....and I wish it was better news...

Also glad you found this thread...I had been remembering it recently in the never-ending confusion about surgery decisions, so I'm glad you did my homework.

Wishing you peace in your journey!

Confusedmom
10-17-2010, 09:39 PM
Ditto. I think about Joy all the time. She expressed my fears better than I can myself. I am just so sad that her fears were realized. I am still holding out some hope we will hear from her son and that there will be some marginal improvement one of these days.

This has got to be one of the hardest health care decisions out there -- "elective" surgery for preventative reasons, but one of the longest and most complicated procedures around. Best wishes to you both.

Evelyn

mbeckoff
10-20-2010, 07:42 AM
I , too, think about Joy every day and pray for her. I wish that her sons would post with some good news.


Melissa