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chmesh
04-12-2011, 06:06 PM
Hi there. I've posted before but under a different name (cmkito). So I have a surgery date for the end of June and I'm still debating whether or not I can go through with it!
I've got an S Thoracic curve with a 40 degree and 47 degree curves. I'm not in too much pain to deal with, but I am definitely uncomfortable all the time. I'm 30, married w/ no kids, and in pretty good shape.

I went to the spinal fusion class at New England Baptist in Boston and it was informative. They said my curve could progress after menopause. I would be having the surgery with Dr. Rand and he is great. He would fuse T1-T11 anterior with the hook method. I'm just scared out of my mind that I might make things worse than they are now. But on the other hand...I really hate how it looks and are bothered by the pain....and feel like if I'm going to do it, I should do it while I'm younger.

My parents are totally against my surgery but my husband is supportive of me.

I know it's a decision I have to make, but I keep waiting for my 'aha' moment that will give me my anwer.

Any advice is much appreciated.

-Christina

Lilysaidwhat
04-12-2011, 06:14 PM
No advice here other than you'll have to get all the information you can and decide if it's right for you. It must be pretty twisted up if they're saying anterior?

For me, I found out I needed surgery Dec 30 and had it done Feb 23. Mine was posterior only. I am fused T3-L4 and did it now because 1) I don't believe the surgery will change that much in the next 5 or so years, 2) I want to adopt kids and wanted to get it out of the way 3) assuming I don't get hit by a trash truck, it was imperative that I do it or die younger by suffocation when my lung crashes into my heart, and 4) I wanted it done before I started staring down the barrel of menopause (I have no idea when that is supposed to start but whatever).

Best of luck on your decision. It's one that I couldn't make and then sit with for long. The waiting was hard but honestly, IMO it was every bit as hard as the surgery and recovery has been so far. There's no easy answer, I'm afraid.

chmesh
04-12-2011, 06:48 PM
oops I meant to write posterior!

Dr. Rand said surgery is up to me.

tha

Confusedmom
04-12-2011, 08:41 PM
It seems like the key question is whether your curves are progressing. If they are not, and are stable in the 40s, you may never need surgery. You need xrays over a number of years that show an increase usually greater than 10 degrees, to rule out the margin or error of progression. Good luck with your decision!

Evelyn

livingtwisted
04-12-2011, 10:24 PM
I'm not in too much pain to deal with, but I am definitely uncomfortable all the time. I'm 30, married w/ no kids, and in pretty good shape.

All of this could describe me too! (except my curve is different.) I've also had surgeons tell me its my choice, and I've had others tell me don't rush. I guess for me, if someone could tell me that having surgery now would definitively reduce my pain/need for revision after menopause that would make it a no-brainer. I'm sorry I don't have any advice, just a question... did Dr. Rand tell you anything about you can expect after surgery in the long term?

Singer
04-13-2011, 06:21 AM
I agree that documented progression and pain are the indicators for surgery. On the one hand, surgery can be a bit easier when you're young and have a less-severe curve; on the other hand, increasing pain and progression can be a powerful motivator for facing the surgery with less fear and more resolve.

It can be a tough call.

Lilysaidwhat
04-13-2011, 07:22 AM
According to the orthos I saw (other than Boachie) and the 8 that I know socially, surgeons do not consider surgery a cure for back pain associated with scoliosis. The goal of surgery is to stabilize the spine. There is about a 50% chance of reduced pain based on the journal articles my husband (he's a doctor) researched.

To that end, my lower back pain increased from my mid-20s to my mid/late 30s such that by the time I went to the dr on Dec 30, it was because my pain was no longer managed with weekly PT, daily yoga, and full daily dosages of tramadol and celebrex (with a xanax kicker for spasms).

Post-op, I do not have the lower back pain I had pre-op. Walking far is no longer a painful task. Granted I'm 7 weeks out but I am hopeful that eventually I will not have any back pain to deal with, once the recovery is over. When that is, I have no clue.

I just wanted to clarify that pain may be an indicator that you need surgery, but mostly it's progression and the (in)stability of your spine that will be the deciding factor, along with whether you have respiratory distress now or they can project out based on progressive x-rays (measured by the same surgeon preferably) showing worsened curvature. There is no guarantee of pain reduction and anyone who says there is does not follow evidence-based medicine or is selling you snake oil.

jrnyc
04-13-2011, 10:54 AM
EVERY SINGLE scoli surgeon i consulted with said i would be in LESS pain after surgery...much less! that includes Boachie, Anand, Lonner, Neuwirth, and a few others who shall be nameless. including one who works with Errico

every pain management doctor i have consulted with...3 to date...said it would not change my pain....

jess

LindaRacine
04-13-2011, 10:57 AM
Hi there. I've posted before but under a different name (cmkito). So I have a surgery date for the end of June and I'm still debating whether or not I can go through with it!
I've got an S Thoracic curve with a 40 degree and 47 degree curves. I'm not in too much pain to deal with, but I am definitely uncomfortable all the time. I'm 30, married w/ no kids, and in pretty good shape.

I went to the spinal fusion class at New England Baptist in Boston and it was informative. They said my curve could progress after menopause. I would be having the surgery with Dr. Rand and he is great. He would fuse T1-T11 anterior with the hook method. I'm just scared out of my mind that I might make things worse than they are now. But on the other hand...I really hate how it looks and are bothered by the pain....and feel like if I'm going to do it, I should do it while I'm younger.

My parents are totally against my surgery but my husband is supportive of me.

I know it's a decision I have to make, but I keep waiting for my 'aha' moment that will give me my anwer.

Any advice is much appreciated.

-Christina
Hi Christina...

You've received some excellent comments and advice from others, so I won't comment on the issue of whether or not you should have surgery.

I did, however, want to bring up a concern about using hooks for your surgery. The next time you see Dr. Rand, I would ask him why he wants to use hooks instead of screws.

Regards,
Linda

LindaRacine
04-13-2011, 11:02 AM
EVERY SINGLE scoli surgeon i consulted with said i would be in LESS pain after surgery...much less! that includes Boachie, Anand, Lonner, Neuwirth, and a few others who shall be nameless. including one who works with Errico

every pain management doctor i have consulted with...3 to date...said it would not change my pain....

jess
Hi Jess...

Did they say absolutely you'd be in less pain? My experience, with lots of different surgeons, is that they say that most patients experience some pain relief, but that there are no promises.

As we've seen from some folks who post here, a relatively small percentage of patients have no pain relief, or even experience an increase in pain.

Regards,
Linda

Lilysaidwhat
04-13-2011, 11:15 AM
Part of what turned me off with Boachie is that he quoted us an 80% chance of total pain relief. I can't quantify anything higher than 50% based on published research so I think that number was a bit of dangling carrot. I felt my surgeon was a lot more realistic in his approach. YMMV of course.

LindaRacine
04-13-2011, 11:18 AM
Part of what turned me off with Boachie is that he quoted us an 80% chance of total pain relief. I can't quantify anything higher than 50% based on published research so I think that number was a bit of dangling carrot. I felt my surgeon was a lot more realistic in his approach. YMMV of course.

Hi...

It wouldn't surprise me at all if 80% of Dr. Boachie's patients got total pain relief. The 50% number that is being quoted is essentially from a meta analysis of multiple studies, so would include gifted surgeons as well as not-so-gifted surgeons.

--Linda

jeneemohler
04-13-2011, 02:14 PM
I would imagine that there are different types of "pain" that we are talking about. Some are specific, measurable pains that can be dealt with. Other pains are sometimes muscular, or just a nebulous, generalized pain. Those are hard to pinpoint, let alone "cure".
Just in my own personal case, the majority of my pain was due to nerve impingement, spinal cord compression, and the "crushed" feeling in my torso. And some general muscle pains. When those nerves were released in surgery, there was a huge relief from pain. It is still there at times when I'm tired or have overdone it, but it is much less severe. It is not that unrelenting, 24/7 type of pain anymore. And that crushed feeling is GONE. I expect my occasional muscular backaches will continue for the rest of my life. But that is common for even a NON scoli person. No surgery is ever a guarantee. We just research the odds and hope we are on the right side of the numbers!!

Singer
04-13-2011, 02:41 PM
The issue of pain is so interesting because it's so subjective. I don't know how anyone who had the hugely invasive anterior-release procedure (in which you're basically sliced all the way open from the side) can be totally pain-free. I have a lot of residual tightness, pulling, and soreness around my rib cage and upper abdomen which I assume is scar tissue. It's discomfort but not an "ouch" kind of pain. When I'm diligent about doing my core-building exercises the discomfort is less. And I feel a million times better in warm weather.

On the other hand, the pain I used to have while trying to shop, cook dinner, sit on bleachers, or amble through a museum is totally gone. I can stand up, shop, or walk for hours -- something that still amazes me at times.

So, I see it as a trade-off, and the discomfort I still have is the price I paid for a stabilized spine and a terrific cosmetic result.

chmesh
04-13-2011, 03:30 PM
Thanks for the wise words. I haven't had too much progression recently. I was braced in elementary school when I had a 20ish degree curve. So since then, I've progressed.

Lisa, I'm not sure why he wants to use the hook method. I didn't think to question him. Have you heard negative things about that method?

-Christina

asccbodypro
04-13-2011, 03:41 PM
Melissa,

Everyone does have that "A-ha" moment and it still comes with a great deal of fear. That's normal. I was seen at Boston's Childrens Hospital and wore the Boston Brace and was seen By Doctor Hall the maker of the brace. My parents were advised that if I didn't have surgery as a child I would have trouble later on in life. I'll give Dr. Hall an A on that call.

I was in great shape, competing in bodybuilding and out of the blue my curve started to rapidly progress and do a great deal of damage along the way. It's hard to say what any particular curve will do and when or why.

I can honestly say that if I could have saved myself the 6 years of debilitating pain I would have had my surgery sooner. I couldn't get my primary care doc's to listen to me. I do think if I had my surgery prior to those five years than my recovery would have been much better than it has been. I also have a three year old and that has slowed progress down which I knew it would....thank goodness my older boys and husband are such great helps!

Good luck with your decision as it's not an easy one and only you can make it. With that said, at least you have the support of your husband and that is a big piece of the puzzle! Take care and keep us posted.

chmesh
04-13-2011, 03:42 PM
I meant Linda..not Lisa...sorry!

Also, did you notice a significant improvement in the appearance of you back/ribs?

Not to sound too vain, but that is a major driving force in wanting to have surgery.

jrnyc
04-13-2011, 05:09 PM
all of the surgeons i saw, Linda, made sure to say that there was "no guarantee" i wouldn't have some pain after healing...but every one of them said they expected me to be in less pain than before surgery (after healing, of course)...one guy said he would be "very surprised" if i didn't have MUCH less pain after i healed....
every pain doctor, as i mentioned, said just about the opposite....

actually, i would expect to get a lot of pain relief from having degenerative discs fixed with side approach..but don't know how i feel about posterior approach for scoli...and whatever they would have to do for listhesis, hypokyphosis, etc...Lonner mentioned a few "otomies" and "ectomies" i would need...
i do know i would not consider anything besides minimally invasive approach...

i hope you are healing well, Linda...i think about you often and hope things are getting better as the days pass...

jess

ADMoul
04-13-2011, 07:14 PM
I will chime in and say that my curves and pain definitely increased with menopause, although my curves were pretty bad all along. I will also say that I am virtually pain free at about 14 months post op. I am doing some physical therapy right now for strengthening and conditioning and it's helping a lot. PT folks are amazed at what I can do and are doing an excellent job of core strengthening without putting any stress on my back. My situation was considerably different since I was older and curves had become very severe. It took a lot for me to reach my "a-ha" moment, but once I made that decision, there was no turning back. Would definitely get a second opinion in your case. Best of luck to you!

titaniumed
04-13-2011, 08:06 PM
The issue of pain is so interesting because it's so subjective. I don't know how anyone who had the hugely invasive anterior-release procedure (in which you're basically sliced all the way open from the side) can be totally pain-free. I have a lot of residual tightness, pulling, and soreness around my rib cage and upper abdomen which I assume is scar tissue. It's discomfort but not an "ouch" kind of pain. When I'm diligent about doing my core-building exercises the discomfort is less. And I feel a million times better in warm weather.




Yes, the thoracotomies are scary. It’s the one procedure I wouldn’t want to do. Linda did one of these, and many of the kyphosis patients have to do these. Ryy and Pilar also made it through this procedure. I wish she would post and let us know how she is doing....Ryy seems fine except for his neck. (kyphosis issues)
http://en.wikipedia.org/wiki/Thoracotomy

Both my curves were about 55 degrees when I was 30, and I waited.....My scoliosis really started to become a problem when I passed the age of 40. By the time my curves hit 70 degrees, my pain at age 49 was completely out of control.

The one thing my surgeon told me was that I should have had my surgery years ago....I knew that, but everybody knows how that goes....
I came out pretty good...I never expected to be mostly pain free ever again. I will have some tightness every once in a while....

Christina
If you have a surgery date, you are in shock. It happens to all of us. If you do chicken out, give your surgeon at least 30 days notice. He will understand. I say this because I chickened out in 2005.

Welcome to the forum
Ed

Confusedmom
04-13-2011, 09:31 PM
Christina,

I think it's worth posting here that some surgeons do not consider curves in the 40s surgical. I've heard minimum cutoffs of 50, 60 and 70 degrees. So, by that token, if you are in the 40s, not sure if you are still progressing, and not in a lot of pain, I would take your time getting other opinions and deciding. There really is not a rush. I have been thinking about it for nine years and have finally decided to have surgery next year now that the progression is getting out of hand and I'm starting to have regular leg pain. Oh, I would also definitely make sure you are seeing one of the top experts in the field. Best wishes!

Evelyn

Confusedmom
04-13-2011, 09:33 PM
Oops, just re-read that you are seeing Dr. Rand--so it appears you are in good hands!

Evelyn

chmesh
04-14-2011, 03:36 PM
Thanks Evelyn and Ed,

I will keep that 30 days in mind in case I do chicken out. I know there's no rush to get the surgery, but soon I want to start trying to have kids. So I wanted to do it before that. We'll see.

I really appreciate your time and help.

-Christina

naptown78
04-14-2011, 08:30 PM
I would imagine that there are different types of "pain" that we are talking about. Some are specific, measurable pains that can be dealt with. Other pains are sometimes muscular, or just a nebulous, generalized pain. Those are hard to pinpoint, let alone "cure".
Just in my own personal case, the majority of my pain was due to nerve impingement, spinal cord compression, and the "crushed" feeling in my torso. And some general muscle pains. When those nerves were released in surgery, there was a huge relief from pain. It is still there at times when I'm tired or have overdone it, but it is much less severe. It is not that unrelenting, 24/7 type of pain anymore. And that crushed feeling is GONE. I expect my occasional muscular backaches will continue for the rest of my life. But that is common for even a NON scoli person. No surgery is ever a guarantee. We just research the odds and hope we are on the right side of the numbers!!

Jenee,
So well put!
And I totally agree...My nerve impingement pain and "collapsing" feeling pain has been relieved also. Various muscular aches and pains will live with me forever I expect and I'm fine with that. The wonderful thing is that my world does not revolve around my back any longer ;-)))

peachrush7
04-14-2011, 09:20 PM
Hi there Chmesh!

I am around the same age as you, and just wanted to let you know I can totally relate to your questions/feelings!

I am 28, married with no kids. When I had my surgery I had a double major curve of 52 degrees, T and L. Not huge curves by any means, but I will say my rotation was quite progressed. I was only progressing at about a degree a year, and my surgeon did not pressure me into having the surgery. He felt I had about 10 years to "wait and see."

I had undergone 3 surgeries all to correct a herniated disc, and after the 3rd one actually had quite a bit of relief from my sciatic pain to the point where we were trying to start a family.

However, around October of last year I started having horrible sciatica in my other leg, which had never had pain at all. I also was having an increasingly hard time sleeping at night, and sitting always gave me back pain, I noticed it was getting harder and harder to sit up straight. I started to freak out about getting pregnant and my curves progressing faster than they already were, or having a baby and then getting worse rapidly and needing the surgery when the baby was still very young. A lot of women on here can share their experiences with that with you, but for me I just didn't want to risk it. After already going through 3 recoveries, I knew it would be very hard to take care of a baby/child while not being able to bend/twist/lift. The women on this form who have and are doing that just blow me away!!!

Ultimately though, my decision came down to this quote that I wrote on here when I finally decided to have the surgery:
"even if I knew FOR SURE I wouldn't NEED the surgery until I was 50, I would still rather have the surgery NOW when I'm young, strong and healthy. I can't imagine my curves progressed over 60 degrees, and the pain and discomfort I already have getting worse. I want the best outcome possible, and the younger you are, the better the outcome (Lord willing!)."

I still feel that way. I'm glad I did it when I was young, strong, and healthy. My pain is not gone completely in my leg, but my pain in my back is. I don't feel like I'm caving in on myself anymore, and I love being completely straight. I do not feel limited by my fusion and am getting stronger every day.

It is also the hardest thing I've gone through, and I had a pretty uneventful recovery! If you want, you can read through my posts, my whole journey from deciding to have this surgery, to my recovery, has been documented on this forum.

It is a very difficult decision, and I wouldn't say that pain reduction was why I had the surgery (i prayed it would be a side effect, but knew there was no guarantee). However, I have HAD pain reduction, so it definitely is possible.

Feel free to message me if you have any questions!

Lilysaidwhat
04-15-2011, 01:06 PM
I'm surprised to hear about people planning to have children post-op. I have two friends with rods who ended up having to have revision surgery after bearing children because the pregnancies really impacted their backs. Hence, my husband and I consider the childbearing door to be shut (because I am NEVER going through this surgery again) and I'm spending part of my recovery time researching and applying for adoption.

Am I the only one who considers the fusion to be the end of the road for child bearing? Just curious.

Singer
04-15-2011, 01:12 PM
!!!! Lily, there have been several people on the forum who have successfully had children post-op -- I hope they chime in. I can think of three off the bat but they haven't posted in a while.

peachrush7
04-15-2011, 08:06 PM
I'm not planning on even think about trying to get pregnant for at least 2 years, maybe longer. We have always planned on adoption, but want biological as well. My sugeon stressed repeatedly I can get pregnant at one year post op, and that I would be better off dealing with the weight, b/c I am fused and "reinforced" lol. I am not sure I want to put my body through it after all i've been through, but we haven't given up the idea. I talked with at least 5 women before I decided to do the surgery who got pregnant post-op and said it was easier and less painful than their pregnancies pre_op. I wouldn't have had it if it "ended" that option for us. We will probably adopt first, as it will give me longer to get strong. I do know if I ever do get pregnant, I will most likely have a c_section, as an all natural birth scares the bleep out of me lol. My surgeon made it very clear epidurals are not an option when you're fused as low as me.

jrnyc
04-15-2011, 08:18 PM
most CERTAINLY there are women on this forum who have had children AFTER fusion surgery....
if you go to the top of the page and type in "childbirth after fusion" and click on "advanced search" it will bring up another screen...
i put in the words "childbirth after surgery" again, checked off "forums" and "posts", (for where the search should look), unchecked "exact words" so that it would pick up all posts concerning having kids after surgery, and clicked on "search"
it brought up MANY posts by women who report about the babies they had after fusion surgery...some go back to 2009...but i don't think that matters, if you are just interested in reading about experiences of those women who have done it....

i am always surprised that folks on here do not make use of the "advanced search" option available....not referring to all people...but am surprised that more do not notice how to go about searching for previous posts on topics they are interested in on this forum

jess

Karen Ocker
04-17-2011, 07:37 PM
The issue of pain is so interesting because it's so subjective. I don't know how anyone who had the hugely invasive anterior-release procedure (in which you're basically sliced all the way open from the side) can be totally pain-free. stabilized spine and a terrific cosmetic result.

I am totally pain free and had the hugely invasive A-p revision. The cosmetic result was greatly improved but my rib hump was so pointed from the 100deg curve as a teen that the thoracoplasty could not remove it totally without disturbing important nerves. My shoulders and hips are even just the right shoulder blade is still out some.