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View Full Version : Appointment with surgeon today



jsully
08-15-2006, 01:24 PM
Hi everyone! I had my 3rd opinion today with Dr. Moreno. He said I have a right thoracic curve of 60 degrees. However, did not know if surgery was nessessary? I did like him a lot and am glad that he is the 1st Dr. who has not wanted to rush into surgery. I am just suprised that he does not think it is that bad. I thought that thoacic curves where more critical because they may crowd the heart and lungs. Also, my curve has progressed over the years. He perscribed me PT, EMG and a MRI. He also gave me Ultracet for pain. Any insight is appreciated!
Thanks,
jsully

blackwidow
08-15-2006, 01:46 PM
Hi, Jsully
I'm a bit skeptical about the attitude of your 3rd opinion doc. My understanding too was that thoracic curves when they get too big do affect the lungs and heart. My son has neuromuscular scoliosis and he had a 65 degree thoracic curve crushing his left lung. It was definitely affecting his breathing. Surgery seems to have helped with this. In my opinion your curve is cause for concern. I've been told anything over 50 degrees and that is likely to progress is cause for concern. You mentioned you have had progression over the years. You also mentioned you are having surgery in May? Are you still planning on this? I'd think twice about what the 3rd doc said but you know that is just my opinion.

Singer
08-15-2006, 02:15 PM
Your experience is just another reminder to me that medicine is an art, not a science, and that especially with scoliosis, you're going to find differing opinions among different doctors. I think you have to read all the information out there, split the difference between opinions you gather, and then go with your own gut feeling.

Did Dr. Moreno want a follow-up appointment with you? The reason I ask is, it's my understanding that many doctors will prescribe alternative treatments to surgery (painkillers, P.T., etc.) and see how you're doing a little later before they flat-out recommend surgery -- unless your case is really severe.

LindaRacine
08-15-2006, 02:47 PM
Hi...

According to all of the research, SIGNIFICANT impact on heart and lungs is usually not evident until a thoracic curve reaches 90-100 degrees.

I like Dr. Moreno's conservative approach. It sounds to me that he wants you to make the decision. There's a good likelihood that you'll need surgery at some point. But, you could be one of the lucky ones who are able to avoid it. It's a big decision, and not something that anyone should take lightly.

I'd much rather have a surgeon be conservative than to have some who uses scare tactics like wheelchairs and pulmonary failure, both of which are very rare in someone such as yourself.

Regards,
Linda

blackwidow
08-15-2006, 03:49 PM
Linda is right I remember my son's doc telling me that too. Once the curve is around 100+ degrees then it starts to compromise the lungs and heart. Although there are exceptions to this rule as I have found out. Definitely a red flag though if you are experiencing any shortness of breath issues.

dawney
08-15-2006, 11:03 PM
My surgeon also recommended Conservative methods first, but I exhausted those already. He also told me that I could continue trying these methods before I opted for surgery.

The Slice
08-16-2006, 12:46 AM
If there is evidence that the curve is still progressing, then I would seriously consider the surgery. It is not an emergency, but the longer you wait, there are two factors against you, your age, and the severity of the curve. As you get older, recovery gets harder. As the curve progresses, it is not only harder to straighten it, but there is less correction achieved. That's not to say that you should run right out and have the surgery, but keep those things in mind while pondering your decision. If you are having any problems with shortness of breath, you may want to have further evaluation. This can include such things as an EKG, or pulmonary function testing and the like and can be determined by your PCP It could also better help you decide whether or not you need the surgery as to whether the curvature is affecting your lungs, this will become evident in the testing. Good luck and keep us posted. :)

Cakedec
08-16-2006, 09:09 AM
Dear jsully,

I was in your shoes about 15 years ago. Had double curves in the 60's, married with small children. At that time, the drs. did not recommend surgery to me. They said my curves were "balanced" and the pain was not affecting my life. I was able to manage it with exercise, PT, chiropractors, massage, etc.

Fast forward 15 years later, the upper (thoracic) curve has progressed to 70 degrees (still not painful), the lower (lumbar) curve has progressed to 77 degrees making me lean over to the side, have a painful hip, making walking and even sitting for long very painful. I am not able to be employed or be on my feet for more than an hour. I am noticing shortness of breath upon exertion that was not there before.

Now the drs. say that I am a candidate for surgery and why wasn't it done earlier? My children are older and more independent and able to do for themselves if I am laid up. My husband needs me to be employed to balance the family budget. So the timing seems right. I have posterior surgery and the surgeon is happy with the 30 degrees that he is able to get out of my curves (leaving me still at T40, L47). Still too early yet to know if walking or function will improve.

So that is my story; use it to help make your own decision. My advice is this: since your children are quite young and you are not in pain, you might want to try therapy and alternatives for a couple years, maybe until they are in school all day. Then it will be easier to leave them with someone for the week or 2 that you are hospitalized for surgery. Also, you don't have to worry about the 10 lb. weight lifting restriction afterwards since they don't need you to pick them up anymore!!

I don't recommend waiting 15 years, however. As you can see from my story, the amount of surgical correction that they are able to get goes way down as you get older.

Good luck and let us know how things go.

Deb

jsully
08-16-2006, 10:05 AM
Thanks for all of the feedback! I have been experiencing a lot of pain lately. I've been seeing a chiropractor who has already been doing strengthening and streching with me. I've been taking a lot of Motrin and Naproxen lately and that has torn up my stomach. Dr. Moreno perscribed me Ultracet but I haven't tried it yet. I do have a follow up appt. next month after my MRI. Then I have a EMG? in October which was the fastest I can get in do to my work schedule. I'm a little concerned about PT ($25 copay each visit). Has anyone tried Electrical Stimulation or Ultrasound I think that that is the only thing PT may try that I haven't done yet. I still may go ahead and schedule surgery in May. My mom is off for summer vacation then and can help. Dr. Moreno said if he was to do surgery, he would do it posteriorly, T3-L1, with bone grafting material and bone marrow from my hip. I was relieved he did not want to do it anteriorly. I would rather not have a Thoracotomy if possible. 1 other opinion reccommended anterior surgery and the other anterior and posterior!
jsully

CHRIS WBS
08-16-2006, 11:11 AM
Hi Linda,

I find it interesting that you seem to have a more cautious stance regarding surgery, while Karen Ocker appears to be a crusader, expecially for older adults. I'm also confused whenever I read a post that suggests that someone may have to have surgery at some point. If this is not a life-threatening disease, why does anyone need surgery? Having gone to my first scoliosis support group meeting last week and for the first time actually seeing people who have had this surgery, it became quite apparent to me that surgery is certainly no "cure all". If surgery can offer someone a better quality of life, then I can understand the benefits of it, but there seems to be a lot of discussion in these posts about cosmetics, i.e., height gain and degree of correction. Just my thoughts.

Chris

LindaRacine
08-16-2006, 11:36 AM
Hi Chris...

Surgery is definitely not a cure all. And, if you thought it was, I think it's a good thing that you found us. :-) A significant number of adult scoliosis patients have major complications during scoliosis surgery. You can find links to published abstracts on the subject here:

http://www.scoliosislinks.com/SurgeryResearch.htm

With that said, I'm glad I had the surgery. I had a lot of pain before my surgery, and the surgery gave me quite a few pain free years. And, the surgery stopped the progression of my curves.

Everyone has to make this decision themselves. I know hundreds who are glad they had the surgery, but I also know some (certainly not hundreds) who wish they did not have surgery. I know of at least two patients whose lives were essentially ruined by scoliosis surgery. Unfortunately, there are no guarantees. You should know and understand the risks (of both having and not having the surgery) before undertaking something this big.

If you haven't already checked it out, you might want to look at this little questionnaire I put together to help patients consider all of the elements involved in making an informed decision:

http://www.scoliosislinks.com/ShouldYouHaveSurgery.htm

Regards,
Linda

LindaRacine
08-16-2006, 11:41 AM
Hi jsully...

Just for the record, it's not bone marrow taken from your hip, it's bone scraped from your iliac crest (the top of the pelvis). :-)

--Linda

Singer
08-16-2006, 03:03 PM
Linda (and Chris) --

I hear you on the surgery risks -- and believe me, I would love not to have this surgery -- but it seems to me that someone with a severe curve (as mine is) is basically in a tight spot whether you have the surgery or not. When I listen to a world-reknowned surgeon tell me that I'm due to have severe pain and weakness in my legs if I don't arrest my curve, and that I will "have to do something about it eventually" -- I feel that I need to believe him. To me, the real kicker is NOT KNOWING whether or not the pain will indeed reach the severe levels that Boachie said it would. I already have some pain in my legs when I'm trying to sleep at night, and it's scary. There are many things I can't do anymore -- like sit through an entire concert or work in my garden. I doubt if I could handle office work anymore (I'm fortunate that I'm a housewife and don't have to at the moment).

I also need to believe Boachie when he says that good outcomes with this surgery (or at least HIS surgeries) are more common than not.

Believe me, I'm STILL trying to come to grips with the fact that I need this surgery. I just don't want to do it -- but I'm planning on scheduling it when I go to see Boachie again in two weeks. I realize I may never be the same after surgery and may even need more surgery down the line -- but I am almost guaranteed that my life will continue to diminish in quality if I don't have it, also. If I didn't have a ten-year old daughter I might take my chances, but I feel that I owe it to her to try to stay active.

Obviously, your last post really struck a nerve!! I have to laugh. I guess it played into all of my worst fears about this surgery -- when all I WANT to hear is good, positive, reassuring things about it. And there DO seem to be success stories out there. At what point does one go ahead and take a risk? That's the million dollar question for us scoliosis patients, isn't it?

Thanks for listening --
Chris :o

abhbarry
08-16-2006, 03:59 PM
Oh, I just have to say that I'm feeling a little more nervous now after reading some of the previous emails in this thread. It is good to be realistic and hopeful, but I just wonder why the surgery ruined some people's lives? Was it due to an unexperienced surgeon or other reasons?
I'm really trying to work on developing a positive, peaceful attitude about the surgery and have even taken up meditation, but I guess today I'm feeling mostly fear.

Karen Ocker
08-16-2006, 04:32 PM
By while Karen Ocker appears to be a crusader, expecially for older adults. I'm also confused whenever I read a post that suggests that someone may have to have surgery CHRISWBS

I guess I do sound like a crusader because I got my life and employability back.
As Linda Racine mentioned in a post there is a difference between a good surgeon and a great surgeon. I had the great surgeon.

In reference to "older adults": My neighbor's mother is in her early 80s, has scoliosis for years which insiduously increased and is just miserable with pain.
The doctors say it is too late for her; "something should have been done sooner". She is so disabled that she cannot live alone.

I add that at age 52 a different doctor said my fusion was "solid"--WRONG!!
Then why did my major curve go from 64 to 80 in 7 years??? :mad: I wished I had done it then--but then maybe the procedure was not as perfected as now.

I have also heard from middle-aged adults who never had anything done on their backs(basically ignored the thing), developed lung restrictions, are no longer candidates for the surgery and need oxygen 24/7. :eek: They basically urged my to do it.

sweetness514
08-16-2006, 05:52 PM
Hi Linda,

I find it interesting that you seem to have a more cautious stance regarding surgery, while Karen Ocker appears to be a crusader, expecially for older adults. I'm also confused whenever I read a post that suggests that someone may have to have surgery at some point. If this is not a life-threatening disease, why does anyone need surgery? Having gone to my first scoliosis support group meeting last week and for the first time actually seeing people who have had this surgery, it became quite apparent to me that surgery is certainly no "cure all". If surgery can offer someone a better quality of life, then I can understand the benefits of it, but there seems to be a lot of discussion in these posts about cosmetics, i.e., height gain and degree of correction. Just my thoughts.

Chris

My opinion is that nobody can tell another wether they SHOULD get surgery even IF they had a great outcome b/c every case is unique. That is a decision that should be taken after much thought, info and only made by the person who gets surgery.

I had agreat surgeon, and sometimes certain pains are not caused b/c of the surgeon's work.

gayle
08-16-2006, 06:44 PM
i think everyones case is different,you cant think just because someone had a bad experience that you will too.yes there are risks but its that way with every serious surgery.i think if you know that without a doubt you can tell something just isnt right with your back and the dr has told you the same that that is what you need to make your decision.for me,i definatly DONT want this surgery but i cant tell that my curves are progressing fast.my curves went from 55 top and 64 on bottom to 60 on top and 70 on bottom in just 4 months and i can tell something has changed within that time,so i know i have no choice but to fix it now while im 30. trudy,

LindaRacine
08-16-2006, 07:14 PM
Obviously, your last post really struck a nerve!! I have to laugh. I guess it played into all of my worst fears about this surgery -- when all I WANT to hear is good, positive, reassuring things about it. And there DO seem to be success stories out there. At what point does one go ahead and take a risk? That's the million dollar question for us scoliosis patients, isn't it?

Thanks for listening --
Chris :o
Hi Chris...

It's hard to know whether the horror stories are helpful or not, but I always encourage people to post them because I think it's important to know that these things can occur.

The overwhelming odds are that you'll have a good outcome if you've chosen a really good surgeon. But, as I've said so many times, there are just no guarantees.

Once you've made your decision, I encourage you to avoid reading or thinking about the horror stories. At that point, they have little or no value.

Regards,
Linda

LindaRacine
08-16-2006, 07:18 PM
Oh, I just have to say that I'm feeling a little more nervous now after reading some of the previous emails in this thread. It is good to be realistic and hopeful, but I just wonder why the surgery ruined some people's lives? Was it due to an unexperienced surgeon or other reasons?
I'm really trying to work on developing a positive, peaceful attitude about the surgery and have even taken up meditation, but I guess today I'm feeling mostly fear.
Hi...

The two people whom I'm sure would tell you they wish they'd never had the surgery, both ended up with a very rare complication from surgery (any surgery). It's a syndrome called reflex sympathetic dystrophy. I've fairly close to one such person, and know that she has very severe pain 24/7 despite having a pain pump implanted.

I've also talked to some people who are unhappy because they have pain. The surgery can cause long-term pain, and if you're one of the adults who doesn't have pain going into surgery, having pain years afterward may make you very unhappy.

Regards,
Linda

Singer
08-16-2006, 08:31 PM
[QUOTE

The overwhelming odds are that you'll have a good outcome if you've chosen a really good surgeon.

[/QUOTE]


I agree, and am banking on this.

And now I'm going to go watch something mindless on TV !!!!!

Karen Ocker
08-17-2006, 09:17 AM
I want to add that thousands--maybe a million, if you discuss world-wide cases-- of scoliosis surgeries have been performed worldwide over the last 40+ years. This is not experimental. If most of them were disasters it would be all over the news. Most of them have been successful and good news seldom sells.

Originally it was only adolescents; more recently-say last 25 years it is being increasing performed for the first time on older and older adults with progressing curves and after that revisions on those who might need them.

Maybe Linda Racine knows when revisions were first performed.

My friend's husband is 56 and had scolosis surgery as a teen. He is on the volunteer ski patrol and goes on long hikes. He also looks straight.


If any doctor/parent can find a way to permanently arrest curves or prevent them or find another solution for their child that really worked it would save a lot of heartbreak.

The rest of us did not have that option.

bbest
08-17-2006, 12:20 PM
I agree with Sweetness - no one can tell you whether or not to have surgery. I hope that you are able to reach an informed decision based on advice from your doctors and your own judgement. This forum helped me live with my decision. I wish the same for you.

Brandi

jsully
08-17-2006, 04:03 PM
Just wanted to clarify. Dr. Moreno specifically said he would use bone marrow from my hip for bone graft. I too, have never heard of this but he said it is "what is best in 2006".
jsully

LindaRacine
08-17-2006, 04:11 PM
jsully...

You may want to verify that.

--Linda

jsully
08-17-2006, 04:13 PM
I will but just found a web site to support that.
http://www.spineuniverse.com/rtbarticle.php/article1414.html
jsully

LindaRacine
08-17-2006, 04:22 PM
How funny.... I just read the same article. So, you may be right. I'll be curious to get more info. I'm surprised that it's being done outside of a university setting. Do you know if your insurance company has approved it?

--Linda

jsully
08-17-2006, 05:24 PM
I asked about insurance and the DR said that the insurance co. gives the hospital a "global fee" for surgery and the hospital takes less for the more expensive techniques used, such as bone grafting material. The hospital is a not for profit agency so I don't know if that makes a difference.
jsully

sweetness514
08-18-2006, 05:09 PM
i think everyones case is different,you cant think just because someone had a bad experience that you will too.


I completely agree with this post, just like I agree about if someone had a good experience. I think the bottom line is that there are no gaurantees, but having forums like this one helps make an informed decision-something I didn't have before surgery. Personally I have days I only regret not waiting a bit longer, to be more informed but I was already in my last years of getting posterior only. The only point I like to make is that it's a personal decision, we can all have opinions on it, and I can agree with both sides. The one I agree with the most is that it's good that a person has to be in SOME amount of pain before surgery.

Having a great surgeon helps a lot, even if there are things that cannot be controlled, like for example not being able to tolerate the hardware or a fusion not being solid, even if some doctors would say it is, even they CANNOT be sure of ANYTHING at 100%.

My advice for anybody deciding on surgery is just trust yourself first, get informed, be aware and know that everybody is different. Also, never give up, especially when you have pain. You never know what can be done or who can help you.