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View Full Version : Taking the leap in January



Wish2bstraight
11-13-2012, 07:38 PM
Hi everyone,

I am fairly new to the forum and have discovered that there are so many scoli patients out there, that I never really knew existed. It's wonderful to know that there are so many people to communicate with. We discovered my scoliosis when I was around 11. The only thing that was done for me was a number of exercises and a lift in my left shoe to help bring my left hip up to the same height as my right hip.

Now that I am entering my senior years, I noticed that my curve is getting worse. After two sessions of pain down my leg and physical therapy, I decided that it was time to see a scoliosis doctor in Boston. How surprised he was that with an 80 degree thorcolumbar curve, I was not in constant pain. He also told me that I don't have to have the surgery, BUT, it is very possible that as the curve gets worse I could end up with so much leg pain that I will be bed ridden. Well, I am not that physically active, but I want to be able to go for a walk, play with my granddaughters, make an attempt at being somewhat of a golfer. We also discovered that L5 has a fracture, so I know that a fusion from L5 to sacrum is in the plan. Sweeping the floor, ironing, gardening all create pain within minutes, but I do it anyway.

The doctor's plan is to go through my abdomen to put in spacers. The next day remove a rib to use during surgery for the fusion.

I have to go for my second MRI within a month of surgery, which we are planning in January. I have been reading so many threads trying to get as much information as I possibly can. Everything I do, I wonder how will I do this once I am fused. How do I put on a pair of socks, will I be able to look down as I go down a flight of stairs, how long will it take me before I can wash and dry my own hair and take a shower. I am petrified of the surgery and the recovery. What keeps me going is all the stories of people who have a life after surgery.

I would love to hear how people managed during recovery.

Libby

kennedy
11-13-2012, 09:07 PM
Good luck with your surgery

Confusedmom
11-13-2012, 11:53 PM
Libby,

How old are you, and which vertebrae will be fused? Also, which doctor are you seeing?

You will want to see an SRS surgeon, who is specifically trained in scoliosis surgery. If I remember correctly, there is a Dr. Rand in Boston.

Recovery varies a lot. For me, I still am very stiff and using assistive devices, such as a thing that helps you put socks on, and of course grabbers. I am 40 and was fused T4 to sacrum 8 months ago. I also had an 80-degree thoracolumbar curve with relatively little pain. I chose to have the surgery because all the doctors I consulted with said it would eventually cause me debilitating pain--so have the surgery while you're younger and in better shape. I am doing pretty well now, but the pain is not entirely gone. It is a big, difficult decision. In general I would tell people to avoid surgery if at all possible. If your curve is progressing rapidly (mine was) or the pain is debilitating, then go for it. But there are a lot if risks and a significant number of people have difficult complications. That's why it's essential to go to a top-notch surgeon.

Best wishes,
Evelyn

golfnut
11-14-2012, 08:17 PM
Libby,
I was fused T4 to sacrum at age 60. You can look at my signature for a video of my first week of golf after surgery, as well as before and after pictures of my back and a picture of me tap dancing. There is definitely a life after surgery! Dr. Lenke uses a "reach around" approach to put in spacers so that there is only a posterior incision. It might be something for your to inquire about.

aileens
11-15-2012, 10:39 AM
I'm scheduled with Dr Rand for surgery on Feb 5th. I have a very large lumbar curve (over 90) and I feel more comfortable with Dr Rand's expertise. Also, I think New England Baptist is the better hospital - while I did consult with Dr. Glazer and the Beth Israel is very good obviously, I like how NE Baptist caters to orthopedic patients. They give free classes for patients - I went to the spine fusion class, it's taught by the nurses and PTs who take care of the patients immediately following surgery, and it's extremely informative. They also seem to be very comfortable dealing with elderly patients - I have always been the youngest one there by easily 30 years (I'm in my late 30s). That being said, I've been told the Baptist is not the place to go if you have other serious comorbidities because they are not the best in dealing with major complications.

I have been mostly a lurker in the forum for about the last year as I made my decision and continued to do my research - as many others have said, thanks to the collective group on the forum for being such a phenomenal resource.

loves to skate
11-15-2012, 11:27 AM
Dr. Rand did my fusion, but I know that Dr. Glazer is also an excellent SRS Doctor in Boston as well as Dr. Wood at the Mass General. I loved Dr. Rand and the Baptist Hospital and was never afraid to be alone after my surgery. There were two nasty winter storms when I was in the hospital and the rehab hospital where my hubby couldn't make it in to Boston. The care was excellent and the food was reasonable. Good luck to all you Boston area ladies.
Sally

Wish2bstraight
11-15-2012, 03:05 PM
Libby,

How old are you, and which vertebrae will be fused? Also, which doctor are you seeing?

You will want to see an SRS surgeon, who is specifically trained in scoliosis surgery. If I remember correctly, there is a Dr. Rand in Boston.

Recovery varies a lot. For me, I still am very stiff and using assistive devices, such as a thing that helps you put socks on, and of course grabbers. I am 40 and was fused T4 to sacrum 8 months ago. I also had an 80-degree thoracolumbar curve with relatively little pain. I chose to have the surgery because all the doctors I consulted with said it would eventually cause me debilitating pain--so have the surgery while you're younger and in better shape. I am doing pretty well now, but the pain is not entirely gone. It is a big, difficult decision. In general I would tell people to avoid surgery if at all possible. If your curve is progressing rapidly (mine was) or the pain is debilitating, then go for it. But there are a lot if risks and a significant number of people have difficult complications. That's why it's essential to go to a top-notch surgeon.

Best wishes,
Evelyn



Hi Evelyn,

I am close to 63, so I know that that is a more difficult surgery/recovery. My Dr. is Dr. Glazer, and yes he is as SRS surgeon. I do not have the results yet, but I have a feeling my fusion will be from T5 to sacrum. Were your hips uneven? Mine are. I have to shorten one leg of my pants so they are even.

golfnut
11-15-2012, 05:29 PM
I always had to shorten one pant leg, as well. For years, I was self conscious about my uneven hips. Fortunately, low rise pants became popular instead of the belt at the waistline, but by then my rib hump had become more prominent. It is so nice to feel straight and tall with no rib hump!

titaniumed
11-15-2012, 07:55 PM
I wonder how will I do this once I am fused. How do I put on a pair of socks, will I be able to look down as I go down a flight of stairs, how long will it take me before I can wash and dry my own hair and take a shower.


For putting on socks, they will supply a sock installer at the hospital. Itís a device where you hang the sock over your toe, and pull up with straps. It works ok, I used mine for around 8 months. After that time, you will learn how to put socks on without the installer. They donít want you bending and twisting for many months while you heal. Sandals worn without socks are easiest. You generally donít bother with socks unless you leave the house....

I never had any problems with stairs. None whatsoever. They will get you on the stairs in the hospital.

I washed my hair by myself in the hospital after 8 days, and I had a broken shoulder at the time from a ski crash....If both were broken, that might have presented a little challenge.....Some of the ladies here do have problems with washing hair and lifting arms, you will see posts on this subject every now and then. That first shower is absolute heaven and I asked of I could stay in there for an hour and they said ok. I used so much water, I lowered Lake Tahoe about an inch. (smiley face)

Most or all will vouch that the first 4-6 weeks is the hardest. The first thing you will notice is that its very hard to get comfortable. For those in serious pain, every minute is what I call a ďsurvival modeĒ where all your thoughts are centered on pain and trying to get into a comfortable position. Sleep is also difficult, and we end up sleeping like cats for the longest time.....

I would say I improved about 10% per month. At 1 year, I was 90% healed, and it took another year for the fine tuning and fatigue to pass. I sure miss those daily naps! Itís a multi year recovery for most, but the young kids heal surprisingly fast.

Walking is the standard therapy for us. It plays an extremely important part since we have to worry about blood clots in the legs. Blood hardly circulates down there unless you walk, and clots can travel up to the lungs and really create problems. Opoid usage WILL cause constipation, and walking promotes peristalsis. Walking also help reduce edema in the legs which is so common after anterior surgeries.
http://en.wikipedia.org/wiki/Peristalsis

Basically, we need to keep things moving. Not marathon walks, but short walks many times each day. Marathon walks will just tax the delicate soft tissues that have been altered and moved in your surgery.

Most of us do well with our recoveries. Many that do well move on and discontinue posting....and of course we miss them and really love hearing from them from time to time...
Ed

Confusedmom
11-15-2012, 09:26 PM
Libby,
Glad to hear you have a top surgeon. Yes, my hips were uneven and all my dress clothes are hemmed unevenly. Also the rib hump so backs and shoulders are altered differently. I haven't put on most things yet. It will be interesting to see how they fit now that I'm straighter. My spine is almost totally straight now, but I still have some rib hump, though greatly reduced. Overall I am very pleased with the cosmetic effects, though I would never have this surgery for that reason (I know you're not, either).

Best,
Evelyn

Wish2bstraight
11-16-2012, 09:35 AM
Thanks one and all for your answers to my questions.. I lost sleep last night for the first time and am becoming very nervous. I guess that is part of the process. Thedoctor's office sent my packet out in the mail yesterday, so I am hoping to understand exactly what he is planning to do in a couple of days. So now to my next question, which I know the answer will be different for everyone. At what point in time do you feel we'll enough to be left alone in the house for a few hours. Asking because I also have to prepare my husband to understand what I will be like and the time off from work that he will need to take.

JenniferG
11-16-2012, 03:08 PM
I was alone during the day from when I came home. My partner didn't take a single day off work and didn't need to. He left food ready for me, all I had to do was make coffee. I am a solitary sort of person so it worked fine. I left dirty clothes on the floor where I took them off and he picked them up and washed them. I dressed slowly and carefully. I showered when he was home and nearby. Initially he walked with me, so we did that when he came home. Later, when I was walking longer distances, a friend came over during the day and walked with me. But I could have done it alone, it was other people who thought I should not.

Having said this, many here do it completely alone. It's doable, but it is nice to have the tricky things done for you. And having said that, there are some who need a lot more help than me, because as you say, we are all different.

If I'd been alone, there are some things I would have simply not done and maybe paid someone to come in and do for me. Like floors and laundry. Because in those early weeks, we don't want to take any chances. I have a friend who had surgery with my surgeon earlier this year and she's a cleaning fanatic and it drove her nuts seeing things needing doing and took chances. Not me!

Wish2bstraight
11-16-2012, 04:45 PM
Dr. Rand did my fusion, but I know that Dr. Glazer is also an excellent SRS Doctor in Boston as well as Dr. Wood at the Mass General. I loved Dr. Rand and the Baptist Hospital and was never afraid to be alone after my surgery. There were two nasty winter storms when I was in the hospital and the rehab hospital where my hubby couldn't make it in to Boston. The care was excellent and the food was reasonable. Good luck to all you Boston area ladies.
Sally

Sally, what rehab did you go to? We're you pleased with the therapists?

golfnut
11-16-2012, 06:30 PM
Hey, Mr. Popular Titanium Ed,
I tried to send you a PM and your mailbox is full.

titaniumed
11-16-2012, 07:22 PM
Karen

Use my e-mail. This PM system needs major surgery.....

titaniumed@hotmail.com

Ed

loves to skate
11-16-2012, 07:59 PM
Sally, what rehab did you go to? We're you pleased with the therapists?

I am so sorry, I cannot think of the name of the rehab hospital, but it was just around the corner from the Baptist Hospital. The name will come to me in the middle of the night tonight. Haha! It is a Jewish hospital and it was amazing. They alternated daily between Kosher food and regular food, so I got to taste some wonderful Jewish meals. The therapists were wonderful and so were the Doctors and Nurses. The Doctors reported back to Dr. Rand every day and the Nurses and therapists knew exactly what Dr. Rand expected of them.
Sally