View Full Version : How to explain this to others

01-28-2008, 12:51 PM
Hello, everyone. I'm scheduled for staged anterior/posterior surgeries taking place two days apart in about 3 1/2 weeks. I'm 64 years old, have been retired for about a year, and live alone. I have no kids and no family. I have had other kinds of surgeries in the past (appendectomy, etc.) with no problem, but this one has me rather scared. My support network is fairly thin; most of my dearest, closest friends have passed away. Only one remains, and he is very supportive, though quite concerned about the decision to go ahead with the surgery. I'm active in my church and had been counting on them for some kind of support, but most of them cannot seem to wrap their minds around the seriousness of the surgery. They seem to think it's going to be like disk surgery, and that I'm making too big a deal of it. This leaves me with a sense of being fairly alone and unsupported in this.

Like many of us, I've had scoliosis since early adolescence, but mine wasn't diagnosed until I was 18, so they couldn't stop it. Currently I have two major thoraco-lumbar curves that are progressing fairly rapidly and one minor, compensatory thoracic curve. The main curve is now 65 degrees (it was 45 degrees four years ago). It starts at about T10 and goes down through the lumbar area. There is another curve below it at 35 degrees. The compensating curve in the thoracic area is only 23 degrees, although I do have a noticeable rib hump on the left side. I'm having difficulty staying upright; for the past year or so, it has been increasingly painful to stand for more than 10 or 15 minutes or to walk for more than a block or two. I can feel my ribs digging into my right hip, it's a burning sensation. Sometimes the hip goes numb, if I've been too active. I've gone from 5'5" to 5' 2 1/2" in just a few years.

The surgeon is going to fuse my spine from T10 to S1. On the first day, they are going to do an L2-S1 anterior spinal fusion with graft placement (he mentioned cadaver thigh bone). Then I'm going to be laying there in the hospital for one day,which is almost too weird to contemplate. On the third day, they are going to do T10-ilium instrumentation, T10-S1 posterior spinal fusion, iliac bone graft, and the scoliosis correction. I believe he said he hopes to take the 65 degree curve down to 20 degrees, which almost seems like a miracle. The doctor says I'll be in a clamshell brace for four months but should be able to drive in about six weeks.

My insurance will pay for several weeks in hospital rehab or skilled nursing care, for which I'm very grateful, but I don't know what to expect when I get home in a month or 6 weeks. My doctor says they will provide me with a grabber, raised toilet seat, etc. Again, I live alone, have two cats to take care of, and am having a hard time imagining what it will be like to be unable to bend at the waist. My doctor is not sure that it is wise to give blood, since it depletes your supply going in, but if I'm going to do it, it should be soon, as the surgery is now less than a month away.

As for the folks at church, I think part of the problem is that I do not look very deformed, as the major curves are so low, and I don't wear form-fitting clothes. I never complain about the pain. I think it would help if I could explain what scoliosis surgery is, but most people don't understand anatomy very well, so it's difficult.

Any and all advice would be welcome. I bought and have read David Wolpert's "Scoliosis Surgery" book, and it has been helpful. I recall that someone said there is a thread here for those who live alone, but I can't locate it. It would probably be a good place to start. Thanks -- I'm glad this forum is here. I don't know anyone in real life who has had the surgery.

01-28-2008, 01:49 PM
Welcome Sammi. Your story sounds so familiar to mine. Iím a bit younger at 58, but my main curve has progressed to 80ļ. My progression has really taken off following menopause. A surgeon I consulted with did tell me that surgeons are seeing more and more patients like myself, aging post-menopausal women who are presenting with pain and worsening deformities. Still, I consider myself more fortunate than many others with this disease since despite my large curve, I do not have disabling pain. I can still go for a brisk three-mile walk without difficulty but standing for any length of time is becoming more and more difficult. I usually find myself leaning against something. I do experience spinal fatigue rather than pain. I too am alone dealing with this, and as you well know, it isnít easy. My sister and twin brother are going to accompany me next month when I see my surgeon to make plans for surgery this summer when my sister who is a teacher has offered to stay with me. But other than that, I donít have support. I have elderly relatives in the area, but they are dealing with health issues of their own. And as for friends, well I guess Iíll soon find out who are my true friends. In one respect, you are fortunate that you are retired and do not have to worry about returning to a job. This is a major concern of mine since I still have to work and especially after reading so many posts here of women who are much younger and canít muster the energy to return to a full-time job long after surgery. If you have a support group in your area, I would encourage you to attend a meeting or get in touch with the groupís leader. You will be put in touch with others in your area that have had surgery and may be able to offer you some assistance. I admire you for your courage in facing this on your own. Please keep us posted. We are here for you.


01-28-2008, 02:38 PM
Hi Sammi

I'm not the one suffering from scoliosis, but my daughter is. She recently had surgery and is doing quite well. Even though she's young, it was still very difficult, especially the first week at home where she required almost round-the-clock care. I know what you mean that people don't understand what this surgery is about. I sent my daughter's before and after photos/xrays to my friends, they were shocked and amazed to see what she'd been through. I would suggest you print out some before xrays (your own if you have them) and someone else's after they've had the surgery (there are plenty here on the forum, my daughter's are in the adolescent surgical section) and show them to some of the folks at your church. They may be a little more sympathetic to your situation.

There are also a lot of suggestions for what to have at home, one most recently added by txmarinemom (Pam) who made a very thorough list of things she was doing to prepare for her own surgery since she too is living alone.

Best wishes to you.

01-28-2008, 02:48 PM
The list is about 3x longer than the one I initially posted!

Because my thoracic curve balances out with the compensatories (my hipbones are level, and my head is centered directly over my pelvis), I, too, had to show people my xrays to convey the magnitude ... and without exception, everyone's jaw dropped.

I'm with Sherie ... show your films.

I'll repost the list of things I've done to prep for a mostly solo recovery: I honestly believe it can be done in my case (fusion "only" planned from T5-L1, and posterior approach only).


01-28-2008, 03:17 PM
Hi Sammi,

Since you live alone, I'm glad your insurance will pay for however many weeks of rehab you need. Once you are strong and mobile enough to go home, your most pressing needs (based on my own experience) are not to be alone when you shower, having someone do your food shopping, having someone do enough housework so that the Board of Health doesn't come knocking on your door, and having someone help you with laundry. These were all things I could not have done in the first couple of months following my return home (10 days in the hospital and 10 days in rehab.) I did have the complication of a severely weakened leg to deal with (it's a lot better now), so it may have taken me longer than some to pick up household tasks again. I'm 52, by the way.

Everybody recovers differently from this surgery but you will definitely need some practical help in the beginning. Another thought is: you will probably need help with the cat box -- someone on this Forum bought one of those automatic, robotic scooper things and raved about it.

Good luck to you!

01-28-2008, 08:39 PM
Sammi -
I'm your age, live alone, and will have a 4th surgery in two weeks. I'm fused from T4 to S1, but it took 3 surgeries to get me there! :D The thread you are looking for is "living alone - surgery soon." There's quite a few suggestions there. And Txmarinemom has list upon list of what she has been doing in preparation for her surgery. :eek:

I agree with what everyone has said - take advantage of the rehab, and show your xray to your church friends. They should understand once they see that. My scoliosis was never that noticeable, except for one hip slightly higher, because my S-curve was well balanced. So it was a shock to everyone (and me!) to see my x-rays.

For my first big surgery I literally put together a calendar and gave family and friends the choice to come and fix dinner, or spend a few hours with me during the day, or do some laundry, etc. etc., and I kept the schedule. That way people helped out however they could, and no one person felt over-burdened.

My best thoughts go with you.

01-28-2008, 09:06 PM

I showed everyone my x-rays. I couldn't believe them myself. I just had my 8 month check up with my doctor from my last surgery this past May. He told me whenever he wants to give himeself a scare he just pulls up my x-ray!

I will attach my before and my very latest one here so if you don't have any you can print these for show and tell.

01-29-2008, 12:59 AM
Thanks so much to everyone for your good wishes and great advice.

Chris WBS, I appreciate your kind words and your suggestion to locate a local support group. I hadn't known that they existed, but after reading your post, I Googled scoliosis support groups in my area, found a name and email to contact, and have emailed her. I think our pain may be similar, in that it feels like aching from muscle exhaustion. It's as if the back muscles can't deal with a non-vertical spine. An 80ļ curve sounds incredibly severe, Chris; I'm glad you're going to get it taken care of reasonably soon.

Thanks to you all for the suggestion to share my xrays. I do have them on disk and did print one out and showed it to a couple of friends who were amazed. Sherie; it sounds like Sheena went through a lot with two severe curves at such a young age and then quite a lot of correction this past November. I hope she's doing well now. Pam, I'll check out your list. I've been trying to get some projects finished here at home, but I'm not very organized and there's a lot to do, so the whole thing seems pretty overwhelming at times. I guess we just have to be brave and have faith.

Singer, I'm really grateful for the rehab/nursing care coverage. I appreciate your practical suggestions about what to expect when coming home. There won't be anyone to be around when I shower, so I think I'll try to stay in rehab/nursing care as long as possible. I'm going to have a grab bar installed in the shower; that should help. Was your leg weakened from the operation? That's one of the scary things about this surgery. I'm glad it's getting better and hope it recovers completely. Your surgery sounds similar to the one I'll be having. Did they do the anterior and posterior on different days? That part is a little hard for me to conceptualize, especially the day in between that my surgeon wants.

As for the kitties, I'm more concerned with feeding them than with cat boxes, as they're trained to go outside. To feed them, I'm considering using a grabber to pick up and put down the dish and a long tube to pour dry cat food through. Am not quite sure about the water dishes, though. Maybe I should start practicing these things. I'm thinking of rearranging my kitchen this week (lightweight pots and pans in cupboards over the counter, etc.) and seeing how it works.

Trulyaries, four surgeries? Good lord! T4 to S1 is just about your entire back. And you're my age. You must be very strong. I hope the 4th surgery is perfect, and that you'll never need to think about it again. Your calendar idea is excellent. I've been very independent my entire life, and it doesn't come naturally to ask for help, but this thing is bigger than me, so it must be time to start learning.

Theresa, your before xray is very dramatic. Poor back! Why do these things happen to us? Your correction looks great, though, and it's your entire back. I can't imagine what it will be like not being able to bend at the waist anymore.

Thanks again, all of you. It sure helps to talk to people who've been there. You all seem so brave.

01-29-2008, 08:11 PM
Not being able to bend at the waist is not as bad as you'd think, I have a friend fused to s1, and she can still touch her toes! You will still maintain all your flexibility in your hips, so practice isolating that movement. Also, I would recommend for now doing lots and lots of squats, calf raises and leg lifts (can do it standing) I started really working out my legs prior to surgery, and now I'm 5 weeks post op and I can pick up most anything I drop by squatting low.
Granted, I understand that I'm much younger than most of you ladies, but I really think that later you will be very happy you did these exercises!

Also, I was given 4 pages of leg exercises post-op by the PT that came to help me in the hospital, some are done laying down, sitting and some are done standing. I can send them to anyone that is interested, just send me a message with your email address.


Karen Ocker
01-30-2008, 02:10 PM
I sent you a private message.

Linda W
01-30-2008, 09:27 PM
Dear Sammi2,

Welcome to the Forum. This Forum and the people who post here are a wonderful source of information and support. I found the Forum last year not long before my surgeries. The folks who have already posted responses to you are right on target. I know you don't want to ask for help, but you will need to do just that. Showing your radiographs and David Wolpert's book to a few selected women in your church group will both scare them! and make them realize that this is a very major undertaking for you. You may be very surprised by the people who will turn out to help you, plus you will need the socialization. Don't say NO to any offers -- even if the food they bring is awful. Just say "thank you" and mention you have been craving what they brought AND mention your personal favorite things to eat and/or drink that you have ALSO been craving. I was really amazed and touched by the people who came out to help me.

I went to Rehab after both parts of my surgery which were two weeks apart. It was difficult being away from home for a total of five weeks, but it was the best thing to get me on the road to recovery and independence. VNA and PT came to my house a few times, and I was grateful for the help.

Best of luck to you for a successful surgery and an uneventful recovery.
Linda W.

02-02-2008, 08:48 AM
Don't say NO to any offers -- even if the food they bring is awful. Just say "thank you" and mention you have been craving what they brought AND mention your personal favorite things to eat and/or drink that you have ALSO been craving. I was really amazed and touched by the people who came out to help me.

I really chuckled when I read this! It was so on target in my own case... my husband and I appreciated SO MUCH all the food that the church ladies brought, but some of it definitely wasn't to our taste! :D Some of the teachers from my school also brought food--and had asked to know what we DIDN'T like. I felt a little funny, but said I didn't care for mushrooms--I hate the texture and they upset my stomach a little for some reason. The teacher in charge said it was a good thing I mentioned that, because she loved them and would have loaded her dish with them as a special treat. :eek: The amount of food you get might differ a lot too--some brought enough for leftovers 2 or 3 times, while others brought miniscule little helpings that needed a little something else to supplement them. :rolleyes: (My hubby eats a lot...) Regardless, it is such a help and also shows that others are thinking of you. The meals only came for a couple of weeks although there were a few offers of "let me know if you need more"-- but we figured my husband could manage. If you get any offers like that, go for it! Pam (txmm) cooked and froze a lot of food for her recovery. And there are so many frozen meals at the grocery store you could stock up on as well.

I understand completely how many people just don't get it about the surgery. I too had a lot of people saying things like "Oh, I had (or knew someone who did) back/disc surgery too." and they think it's hard but ok. That's when I would (sometimes) explain how they straighten your spine somewhat, monitoring everything so they don't compromise your spinal column--but the main goal is to stabilize your back so it won't continue getting worse. In the surgery they sever all your back muscles to expose your spine and then create the fusion bed by scraping your vertebrae to make them bleed, etc., drill screws into your vertebrae for the rod attachment, etc.--and about how long the incision would be and all... Since you are having anterior as well, you could graphically explain how they move your other organs out of the way, etc., etc., Describing the surgery usually quieted some of those comparisons, although I was careful not to minimize the other, simpler surgeries. Anything is BIG to the person going through it. But this is just not the same thing at all.

Besides food, you will also need help with housework for awhile, and any shopping that needs to be done, so maybe you can set up with your church friends a schedule for those as well. Even at my 6 month's appt. they still said no vacuuming, etc. And I don't see how I'll ever scrub a tub--is that a possibility later on? If hiring a cleaning person is an option for you, you might check into that. There were a couple of sections of the Wolpert book that I was going to mark and have my friends read so they could understand the severity of it all better--and also the part about how your emotions may be way out of line with how your normally act. But then I didn't do that. First, I hated to part with the book (!) at all, for any length of time, and second, I figured my husband would do it all if need be, which he did/does. When I showed my x-rays to some people at school, I also pointed out the rotation. They were all amazed with the curves, but totally floored to think of the spine also being rotated. I think I had a +3 rotation, with only one pedicle showing, exactly in the middle. When you think about how much your spine gets cranked around and straightened, it's no wonder recovery takes awhile!

Rosie mentioned squats--and I'll echo that. I didn't even think about that pre-op, but can't squat. So I'm working on it now. If you can squat, you've got a lot going for you. If you can't, you might as well start working on it if at all possible.

I think if you look over those lists by Pam and others, enlist some help from friends, as well as what David Wolpert says about getting your home ready, you'll do ok. I'm so glad you're getting together with a support group-- that's not an option for me, as there aren't any where I live. To have a group of people nearby that have been through it and understand would be so great! The forum is my only support in that way and I appreciate everyone here so much! I'll be thinking of you and praying for a successful surgery and relatively quick recovery. Take care! And sorry this is so-o-o-o-o long! :rolleyes:

02-04-2008, 12:36 PM
Everyone is so different I thought I would share with you my progress. I was in the hospital for 2 weeks. My husband was only able to stay with me the first week I was home. I found I could only get up for about 40 minutes then had to sleep about an hour. I did this all day long due to the drugs. The biggest thing is the meals. I was able to get up and get myself something to eat but not cook. After 2 weeks (a month post op) I was starting to do the cooking and laundry. I still slept a lot but would make dinner in stages all day long.
I was able to shower on my own right away. (don't have it so hot you get dizzy) A shower chair helps but for me it was easier to stand and do everything very quickly. A chair when you come out of the shower is a good idea because I was always exhausted.
For the cats...I have a dog and feeding her was very difficult due to trying to get down to get the dishes. I would suggest a chair or something up a little higher that the cats can jump up to and you could reach easily. I tried the reacher and all that accomplished was more messes for my husband to clean up :(
I also donated my own blood before surgery and I was given an injection three times prior to donation of Erythropoietin, some call it Eprex and it boosts your iron level which in turn brings up your hemoglobin. It worked very well but is about $300/shot. They also can give you and iron IV which can help. They told me any amount I could give would reduce the risks even if I needed more than I gave. Which I did.
I hope this helps some. This forum is wonderful for support, you'll find everyone there for you anytime you need a shoulder, advice or just to vent. Good luck, Carol

02-05-2008, 09:07 AM
Rosie, Karen, Linda, Susie, CStadler, thank you for your replies and the good information in them. I'll need to digest it all. Like Susie, I have trouble squatting because of arthritic knees (in fact, knee surgery may be next, when this is completely over). Linda, I'm glad to hear that your experience with rehab was good, and that's good advice on dealing with well-meaning food-suppliers. CStadler, is there any problem with getting into the shower if it's a tub/shower. A friend who hasn't had the surgery thinks it might be, since I'll be fused down to S1, but all it requires is stepping over the edge and into the tub. That should be possible, shouldn't it -- esp. after the grab bar is installed?

Karen, I'd like to read your message but don't know how to retrieve private messages. Can someone clue me in? [Edit -- I found it and was able to read your message, Karen] Also, Rosie, I might get in touch with you about the PT exercises a bit later.

One very good thing is that the woman (an RN) who heads up our local Scoliosis Support Group emailed and also called, and she has been VERY helpful, knowledgeable and full of good suggestions. She got me in touch with two other women who had the surgery, too, and we've all talked on the phone. I feel much less alone with this, now.

One other thing -- has anyone here had scoliosis surgery by Dr. Neubuerger in the Sacramento area? Apparently no one who is active in the local support group has. I've asked his office for the names of former scoliosis patients but the office hasn't responded yet.

02-05-2008, 03:18 PM
Sammi - I'm fused to S1 and didn't have any trouble stepping over into the tub. Yes, for sure have something to hold on to, and I have a rubber mat, a shower chair, and a hand held shower head. For some reason I still have trouble holding both arms above my head while I'm standing, so the seat and hand-held shower are more comfortable for me.

02-05-2008, 03:55 PM
All those tub "helps" are invaluable... I've put away my shower seat and don't use the hand held shower head anymore, but even now (9 months) I always use the tub rail when getting in and out of the tub. It hooks over the edge of the tub and gives you a hand rail to hang on to. I've got it right in the middle, so it works getting in/out from either end of the tub. It gives me support when I'm drying off, etc. -- and I hang on to it when I dry my feet off. (How do you guys do that???) I flop part of my towel on the edge of the tub, put my foot on top of it, and then pull the towel towards me... it pretty much dries the bottom of my foot off that way. All these fun challenges! :D

Anyway, I'm just fused to L4 but I was able to step into the tub ok too--although it gave me a sense of security to have someone help me in and out at first. It used to just exhaust me to take my shower. I used the shower seat and hh shower head for probably 4 months because it really made it easier. Then I thought I'd better grow up, since I could manage. That's about when I took out the raised toilet seat also. It was so handy with those arms on it--and I could swing my feet if I wanted to. There was no problem getting off of that baby! :rolleyes:

04-17-2008, 03:04 PM
Hi Sammi,

I'm wondering how your surgery went and how you are coming along in your recovery. From what you wrote in your introductory post, it looks like you had surgery a couple of months ago. As a single woman myself not too far behind you in age, I'm about to embark on this journey and would love to hear how you are doing and coping. Please drop us a line to let us know how you are doing if you are up to it.

Take care,


04-17-2008, 04:12 PM
If I had had surgery, I would have had the same problem; not married, no children, etc. I will reveal something else to you about my medical history. Six years ago I had surgery for pancreatic cancer. I have survived. I got along without family, but I did have a visiting nurse.
I think you will do just fine. The hospital will provide whatever help you need. My cancer surgery was at Northwestern and they took into account that I was essentially alone. I do have a brother, and a friend drove me to radiation treatment.
One of the issues being examined in my new psychotherapy is why I would seek scoliosis surgery after surviving one of the deadliest of cancers. Perphap I thought is if I had one miracle, why not another?
Dr. Gupta did recommend, at first, a 2 stage surgery. I asked him which part of the spine was the most risky to operate on. He said, the riskiest was the cerivcal spine, then the thoracic spine, and the least risky, the lumber spine.
So maybe if your major curve is in the lumbar spine, it will probably go well for you. But so far, very few people on this board have a curve as severe as mine. I am still trying to accept being turned down for surgery, but I am happy for you and others.

04-17-2008, 09:19 PM
There are all sorts of odd inventions which you might find helpful, there is an automatic kitty litter tray scooper that cleans out the cat tray for you, and also automatic feeders and waterers, all somewhere on amazon. I haven't used them but have seen them mentioned on here.

I would suggest getting in the pool to get fit proir to surgery, it's really helpful to increase your lung capacity and is relaxing too. I just do water walking at the moment (post-op) but pre-op I did frestyle swimming, kickboarding etc. I totally agree that you should build up your leg muscles, swiss ball squats are great for that. I did pilates too with the physiotherapist (PT).

As for the social support thing, I would suggest going to your church leader and telling them how major the surgery is, what the expected recovery time is, and saying what you will need from people. Often churches can put you in touch with organisations that do home-care type things. Most of my support came from family as friends couldn't cope, but I'm in a different generation! If you tell them how little family that you have, they should step up more as the assumption that someone else will be there is gone.

Freeze meals ahead! Order in, order groceries online, all those good tips. Look for posts from TX marine mum when she was preparing for surgery, she was going it alone for a lot of it, so she had done huge amounts of prep.

04-17-2008, 11:21 PM
I am very fortunate to have a wife to take care of me. I don't want to sound like a broke record (mentioned in prior thread) but have you considered a lift chair? You mentioned arthritic knees, if your doctor will prescribe a lift chair insurance will pay on it, and it should help you immensly. Also if you look in classifieds or local advetiser/trader papers you can sometimes find good used ones for a decent price. Also ask the folks at church and they may know of one you could borrow!
I wish you the best and GOOD LUCK,

04-18-2008, 09:11 AM
I was wondering how Sammi2 was doing as well. I talked to her Feb 6th and surgery was 2 weeks away. Hope everything went well!

04-18-2008, 12:40 PM
If you are home now Sammi, do you have "Meals on Wheels" available to you where you live? I understand they provide not only meals to elderly but also to people recovering from surgery or major illness. This could be a resource for you so you don't have to worry so much about groceries and meal preparation.
Hope you are recovering well and out of rehab. Let us know how you are.