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Susie*Bee
10-22-2007, 05:11 PM
This is my first day having access to the forum. I sure wish I had known about it sooner! I have so many questions that I know some of you can help with, but I will start with a "how long" one... My surgery was last May-- posterior fusion with instrumentation of T2-L4. I have been brace free for about 3 weeks and am almost off all pain meds--just 1 Darvocet at bedtime. That doesn't mean I'm pain free though. I usually ache in the lower back and right hip and upper back area. How long does the aching go on? I'm hoping not forever. I think since I'm older (56) it will take awhile. How has it been for some of you with similar backgrounds? I'm scheduled to start back to my job as an elementary school librarian after Christmas. It will be more than a challenge to just do the work with all its ups and downs-- and teach classes every day. I hate to think of having to deal with lots of aches and pains on top of that.

Also-- for those of you with long fusions like mine--will I ever be able to tie my own shoes again? I purchased some athletic shoes that are slip-ons and am pretty happy with them. Just wondered if I might as well pitch my others. Plus I'm really curious as to what life-long limitations I'll have. Thanks for your input!

Sharon C
10-22-2007, 09:25 PM
Hi Susie B!

I'm Sharon C. I had the surgery 2 years ago October 13th at 54, and don't envy your early position, but things do get better all the time don't they? Just look how far you've come! I was fused from T6 to L5 in a two part front and back affair, with a rib removed to use as material for fusion, or perhaps as a snack for the surgical staff...how can we ever really be sure?? :) Recovery has been long and hard and disappointing in some respects. While the surgery was a "success," I have traded the lightening bolt pains I experienced with the scoli, for muscle aches which I have always blamed on my body's adjustment after the surgery, but have come to find that may also be caused by kyphosis which I never knew I had! So, I walk with a cane in public if I am traveling any distance, to help assuage the discomfort and to appear more erect from front to back. Rest, and in cases where I overdo it, ice and ibuprofen work well to soothe the aches. I am sorry that I didn't get to be the "best case scenerio" but I'm so glad I wasn't the worst either. I am on disability and I'm grateful for the financial help. I do almost everything I used to do--gardening, walking, etc., just much slower and with more breaks in between. I can certainly tie my own shoes; in fact, it feels great to bend over! Standing erect is much more of a problem for me! Deciding to have the surgery was a long process complete with all the soul searching, research, etc. that we all go through. I am glad I did, as it was necessary, and that it's behind me now. It will take some getting used to the "new" me, but I've got some great support and lots of life to look forward to.
The best to you, my dear. Give yourself all the time you need. Your life will still be waiting for you when you're ready.

Singer
10-23-2007, 07:00 AM
Welcome Suzy,

I would say you're doing quite well if you're off the brace and all daytime meds! My surgery was in June and I'm nowhere near ready to be pill-free yet. Yes, it is a longer recovery for us middle-aged gals (I'm 52). I'm told it takes a year to 18 months to completely recover to the point where you're really feeling like your old self again.

JoAnn5
10-23-2007, 09:38 AM
Welcome SusieBee! So glad you found this forum... it's wonderful to have a place to ask questions and find support from people who have actually BEEN there and DONE that...

Your story sounds so similar to mine :) I'm 55 now... had surgery 2yrs ago with curves very similar to yours... except mine was from T4-S1. I'm an elementary school counselor, so our work load is probably a lot alike. I went back to work after 3 months, but realize now that that was too soon. So you have been wise to wait a little longer. As Singer says, it takes just about a year to really feel 'normal' again.

This is my 30th and last year to teach, then i'm retiring. I just had revision surgery a month ago and though this one was much less intense than the first one, it is taking a while to come back. I'm only on half-days now and still exhausted when i get home. I believe our health and bodies tell us when it's time to retire.

You will eventually be able to tie your shoes again! Since your fusion ended at L4, you will regain some flexibility. Just go with the most comfortable shoes for now.... Fashion will just have to take a backseat to practicality for a little while ;). Use a cane if you need to, as Sharon said, because your back WILL get tired!!

Another thing... if you have grandchildren and want to hold them on your lap... teach them to do the climbing... Don't lift!! My little 2 yr old granddaughter knows when my back is hurting and she says... "Here, hold my hand!" when we walk... lol

Okay enough (too much?) about me.... Again, WELCOME to the forum... Please feel free to post any concerns and questions you might have, and please keep us informed of your progress!

JoAnn

HGD24
10-23-2007, 11:54 AM
I'm fused T3-L4 and have always been very flexible, but the one thing I now have difficulty with is tying my shoes. I can do it if I put my foot up on something, like a chair, but I prefer not to do this and put any strain on my fusion. Instead, I use elastic shoe laces. I was given a pair at the hospital and they sell them at medical supply stores. I'm sure drug stores have them too, I just haven't looked there.

Singer
10-23-2007, 01:48 PM
Heidi -- your post worries me a bit, as I do put my leg up on a chair to lean in and shave my legs. Do you think this is putting too much stress on my fusion (T10-L5)? I'm bending mainly from the waist; isn't that okay? Or is the issue not propping the leg up at too high an angle?

Susie*Bee
10-23-2007, 06:28 PM
THANK you all so much for your responses! I have never done anything at all online like this forum. I was afraid I'd post and then no one would respond. Your comments and suggestions have been such an encouragement! About the shoes--I did try elastic laces, but the tongue kept scrunching up on me. I found New Balance 801W shoes that I really like, and they are so comfy and great for my walks. :) I too have been nervous about bending very much. I can put my foot up on the chair, but then can't tie without bending over more than I think I should. I've been told not to bend or twist--or lift anything that weighs very much. It's good to know some of you use canes. That's one thing my doctor said I shouldn't need to use, but I brought one home from the hospital and use it on long outings for extra support when I'm tired and worn out. I think I can really handle this so much better now that I found the forum. It's like I just found a bunch of kindred spirits-- my scoli sisses. Thanks a bunch!!!

Shari
10-24-2007, 01:05 AM
Hi Suzy Bee,

Being welcomed here is always feared as a new person, I felt the same way!!! But as you see, it is not the case and never will be!!! We are all here for you and are more than willing to give comfort, support and information to help you through this!!!

I had 5 discs, a rib and some hip removed in the ant. surgery, then 6 days later was fused from T-1 to L-5. That was in May of 05. I had a rough recovery, I will not say that I am pain free, but I am so much better than I was before my surgeries.

I know time is limited for all of us on here, but it never hurts to read some of the older posts when you have some time. I found it to have a wealth of information.

We have all been in the same "shoes" that eventually get tied.

Keep up your positive attitude, things get better month by month, and week by week,

Shari

CHRIS WBS
10-24-2007, 10:12 AM
Hi Susie, I read your post with interest as I see you had surgery by Dr. Hammerberg who obviously advised you to have surgery to address your progressive 52° curve. I’m a couple years older than you and consulted with Dr. Hammerberg because of his excellent reputation. I have seen several surgeons over the past couple of years, all of whom recommended surgery without delay. Dr. Hammerberg was the exception. On my third and final visit with him I expressed concern that I could have a 100° curve by the time I reach 65 and he just muttered “naaa.” Last week I saw another surgeon who ordered new x-rays. I brought along with me my film from September 2006. On that film my lumbar curve was measured at 73°. I was shocked when I saw a side-by-side comparison of the film. With my untrained eye I could see a marked progression in just one year. My curve is now measured at 80° and I have a vertebra that is slipping off another. This probably explains the recent pain I’ve been experiencing especially when sitting. At this rate I will surely have a 100° curve within just a few years. Yesterday I had an MRI and will be meeting again with the surgeon next month to discuss surgery. Lesson learned…if you have a big curve that is obviously progressing and a surgeon does not recommend surgery on your first visit, don’t return in six months as suggested. This doctor DOES NOT want to do your surgery. Look for another surgeon.

Last Saturday I attended a Chicago support group meeting and had the opportunity to meet and discuss surgery experiences with those who have had surgery by surgeons in the Chicago land area. While the majority had good outcomes and were there to offer encouragement, there were the usual horror stories as well, like the woman who ended up being hospitalized for eight months after her neck was broken following surgery. Susie, there were a couple women there who had surgeries by Dr. Hammerberg. One was a 63-year-old woman who had surgery three years ago and is fused from T-1 to the sacrum. She said it took a good two years before she felt herself again, but she is doing just fine now. Another woman developed a strange allergic reaction to the hardware which ultimately led to four surgeries and the eventual removal of all her hardware.

I’m certainly not looking forward to going through with this surgery, but I cannot deny what is happening to my spine. I’m afraid that without surgery to stabilize it, I could ultimately end up with a fractured spine, and the doctor I saw last week frankly told me that any competent surgeon will advise me to have surgery.

Chris

Susie*Bee
10-24-2007, 11:45 AM
Chris-- thank you for your comments. I'd like to respond and am not sure if this is where I should or if I should just send you a personal message. I'll do it here since I don't really know better and am new at this. My background info --when I was 27 and pregnant, my doctor said "by the way, do you know you have scoliosis?" I was caught up in life at the moment and didn't give it a second thought for another 27 years. I did have back aches over the years, but then half the world does, so I didn't ever see a doctor specifically for my back. (OK, pretty dumb, huh?!) By then I had arthritis and just thought my increased back pain was from that, but mentioned it to my doctor (a different family doctor from the 1st one). He ordered x-rays and then seeing how bad I was, sent me to an orthopedic specialist. That doctor took lots of x-rays, and seeing that I had a shift in vertebrae (L2/L3)--called lateral listhesis, and degenerative disc disease, as well as the scoli, he sent me up to Dr. Hammerberg. I agree that Dr. H is sometimes abrupt and definitely doesn't say "you need surgery"-- but from my first appointment on, he had me understand that this surgery was a major undertaking and he wouldn't make that decision for me or anyone else. He laid it all on the line with what could happen if the curves progressed a lot, etc. And he said a lot of people don't want surgery and learn to adjust their lives to their limitations. He said I should consider it if/when I felt the quality of my life--what I could do--was being limited by my scoliosis to such a degree that I WANTED that changed. He and his staff all said that it would probably be a year or more before I felt good about the surgery post-op. As soon as my husband and I expressed the desire to go ahead with the surgery everything fell into place and he and his staff were very good about getting things going and in order. I felt like we were a team. That's not to say they did everything I would have liked. We are all different. I think I was fairly pro-active on my part. He DID answer all the questions I had (and I always kept a list and asked) and when I asked about reading material on scoliosis, he provided a list of books and said which would be best for me. They were invaluable. His staff has been excellent and his nurse is so supportive. I can email a question to her--or call-- and she is right there with help and encouragement. That really has been important to me because I live 2 hours away from Chicago--halfway between Chicago and Indianapolis.

This was all pretty scary for me because I came from not knowing anything about it (just that I "had" it) to having surgery within two years. I did go online and read as much info as I could on Dr. H and was impressed with his years of expertise and all the rest that goes with being a prominant surgeon and researcher. The orthopedic surgery dept. at Rush was ranked 6th in the nation last year by US News and World Report. I felt very confident in going into this surgery that I had a very qualified surgeon and an excellent support staff. I still feel that way. The doctors working on their fellowships under him were great during my stay in the hospital. I was there for 11 days.

He didn't promise me a rose garden, but always tried to lay it on the line truthfully and made sure I understood what could go wrong, that the degree of correction would probably be just 50%, etc. He recommended fusion from T2 to L4, saying that starting at T2 would prevent humpback (kyphosis) later on -- and although he could fuse me to the sacrum, he recommended just to L4. He said that, because it looked like I certainly could stand being fused to the sacrum, but by stopping at L4 I would have some flexibility in the lower lumbars, allowing some strain on them and not just my hips, when bending. He said that would work 80% of the time, which aren't bad odds for increasing flexibility. 20% of similar cases need to go back and have those remaining lumbars to the sacrum fused at another time, but that is a much simpler procedure and why cross that bridge if it doesn't have to happen.

I hope this addressed your comments. I can totally relate to you in that Dr. H doesn't seem to recommend surgery. But then again, he has his reasons and wants it to be the individual's decision. By the way, he was able to correct me way more than 50%-- I don't know to what degree, but my post-op x-rays look almost straight. I have 2 long rods, a short one, 17 pedicle screws, and what I'm assuming are 2 hooks. I'm pleased with his work. I go back Nov. 8th. Let me know if you have any questions about what I've said. And I hope this isn't way too long!!!

Sharon C
10-24-2007, 02:02 PM
Hey Girls,
Excuse me for butting in, but what a revalation, Susie! My doctor, Mike Fry in Carson City/Lake Tahoe area of Nevada is very well regarded, but never suggested fusing higher to prevent kyphosis. I'm not so sure I would've gone for it anyway, but I think it was a very comprehensive and wise option presented to you. I have always thought that the leaning forward thing I've got now was due to the original surgery, although the doc always said I looked fine and suggested PT, etc. During my last visit, this October 5th when I complained again about my inability to stand erect, he said "oh yeah, there is some kyphosis above the surgical fusion but I don't think we need to address that right now.." And then he was off to leave me sitting there, half stunned and blink-blinking. I really never noticed this before the surgery, and so I'm still stunned that this has happened or has been happening in the 2 years since. I guess the doctors see so much of this stuff that it isn't such a big deal to them. I will definitely have more questions for my next year's visit, and will pay closer attention to the x-rays of then and now.
My best to you all, and thanks for listening!!!!!!!!!

Susie*Bee
10-24-2007, 02:47 PM
Sharon-- I really wish you the best of luck with the kyphosis! It's not as though I had no scoli in that area--but it was a minor/compensatory curve. I think my doctor has been pretty much doing just scoliosis surgeries for a very long time and can probably size some people up as having the potential for certain problems down the road. I think that was the case with me. And I stand by my opinion that he is a good surgeon--and seems concerned with his patients. I wanted to respond to Chris because she got a way different idea of him than I did. Again, people view things differently--that's what makes the world go 'round. :) I'm glad she found someone she is comfortable with. Susie

PS--I must really sound like a flake for not having done anything for 27 years. Oh well! I didn't even realize I was crooked till recently, I guess because my two comp. curves kind of canceled out my major one, so I always looked fairly straight. Add an extra 25-35 lbs. and no one really noticed. :o

mouna
10-24-2007, 03:10 PM
SUSIE BEE/ CHRIS

I check in from time to time. 8 months + post op now. To answer yr original post Susie - still not back to 'normal'. But we have to adjust to the new normal (I can tie my shoes - and lot of other stuff!). The key is CONFIDENCE in yr chosen surgeon. It's not their decision, it's yours. It gets better, slowly but surely.
Good luck to you both

Sharon C
10-24-2007, 03:12 PM
Hey Susie,
Yes it's important to be confident in one's doctor and the big decision. I'm sure no one thinks you're flakey for waiting to have the surgery. I, too was diagnosed in my 20's, but besides the clothing issues (one leg shorter, etc.) I rarely had symtoms, and those I had didn't cause me to suspect my heretofore "quiet" spine as the culprit, hence I had no reason to consider surgical intervention. I was surprised to find that the numbness, tingling and occasional pain in my legs and (later) back were due to this sleeping monster who decided to awaken in my late 40's, along with arthritis, etc. Ah the joys of aging! :p Much reseach and "watchful waiting" followed until I was no longer able to go to work with the problem and other health issues. I think waiting is much more a sign of intelligence than flakiness! :cool:
S

lelc2002@yahoo
10-24-2007, 07:03 PM
I just wanted to say "Hi" to both Susie Bee & Sharon C!
I think there are a lot of us who had let their scoliosis go over the years unchecked. I had balancing curves in my teens & 20's. I guess it gradually got worse until I noticed by age 43 I was having signs letting me know things were getting way worse. My height dropped off & lots of intestinal problems & all. I just honestly never though there was anything that could be done for it.
My eyebrows did raise up, Sharon, about developing Kyphosis above the fusion??? I have'nt heard of that. My surgeon said he corrected the Kyphosis(mine was 85) and I am fused T-11 to L-5.......Lynne :)

Sharon C
10-24-2007, 10:28 PM
Hi Lynne,

I guess if your surgeon said he "fixed" it, then it's fixed. Or are you having indications that it is not so?? Your fusion starts much lower than mine, and I'm new to the kyphosis game so I'm not sure what criteria constitute the
affliction. Guess I better start reading up! :confused:

Regards,
Sharon

Singer
10-25-2007, 08:13 AM
Lynne --

Don't go there -- the B-Man knows what he's doing!!! :cool:

Susie*Bee
10-25-2007, 08:50 AM
Hey ladies-- this has been interesting, to say the least! I didn't mean to start something where we're questioning our doctor's wisdom though. I think it's really a matter of trust. They are the trained professionals and should know what they're doing. I sure wouldn't want to go into such a serious surgery without a positive feeling of trust in one's surgeon. And hey, there's more than one way to skin a cat--and I'm sure if you consulted more than one doctor, they would come up with differences in which vertebrae to fuse, etc. I think it's best (especially after the fact!) to trust in their decisions and know that no scoli surgery is foolproof and revision may be something that comes up at a later time. Let's just hope and pray it doesn't! Thanks for all your input!

CHRIS WBS
10-25-2007, 10:35 AM
Susie,

I totally agree with you about Dr. Hammerberg’s excellent credentials. But I do think that he and his colleague Dr. DeWald shy away from large curves. This was evident when I first met with Dr. H. and asked for patient referrals of cases similar to mine. While I was referred to patients around my age, their curves were nowhere near my size. Like you, Susie, their curves measured around 50°. The one woman I spoke about who was at the support group meeting I attended was one of my referrals. She is a lovely woman who spent two hours on the phone with me discussing her experience. She spent two weeks at Rush plus another two weeks in rehab. And as I mentioned, she is fused from T-1 to the sacrum. I would have questioned the need for such a long fusion, considering that her thoracolumbar curve was only 50°. She had a very long recovery and appears quite stiff. [Lynne and Chris, you were fortunate to have been treated by Dr. Boachie and be thankful that he did not see the need to fuse you that high.] In fact, wasn’t there some mention here that some top-notch surgeons are discovering they can achieve the same goals with a shorter fusion?

Susie, I have also consulted with Drs. Schafer and Gupta in Chicago and spoke to referrals of theirs who were initially turned away by both Dr. Hammerberg and Dr. DeWald. Both women had curves exceeding 90° and have been successfully treated by Dr. Schafer and Dr. Gupta. The woman who was treated by Dr. Schafer underwent 30 hours of surgery in two operations to treat her 95° thoracic curve. Dr. Schafer, who is considered the best in Chicago, is so thorough that he actually repaired the damaged lung tissue caused by her rotating rib cage, thus the need for so many hours in surgery. Five years later she is doing very well at age 65.

While I’ve heard nothing but good things about Dr. Hammerberg, even from other surgeons, I really do believe that he prefers to limit his skills as a surgeon to the treatment of adolescents and younger adults and the occasional older adult with moderate scoliosis. He may very well feel that surgery then becomes too risky for someone outside that realm.

Best wishes to you in your recovery.

Chris

Susie*Bee
10-25-2007, 11:08 AM
Chris-- Again, thanks for your comments. I have no idea if Dr. H limits his surgeries in older adults or not-- I didn't think so, and in my case it doesn't really matter. I think I did read somewhere that your compensatory curves might progress if the stress that has mainly been on the major curve is taken away (by fusion)-- so I'm thinking that is possibly(?) (and I'm guessing at that) at least one reason why my fusion is from T2-L4. I will trust in his decision and leave it at that. Best wishes for your recovery as well. :) Susie