Hello, I am new here. I have degenerative scoliosis and am scheduled to have ...

[TXMom]

surgery late February in Houston. I am in a lot of pain and for quite a while now. As usual, the pain is worse in the morning and by about 7-8 p.m each day. I am scheduled for an approximate nine level fusion from about T-9 to pelvis. Of course, I am quite nervous and really don't even know what to expect. I have read posts here extensively in the last few weeks. I have gone onto Amazon and purchased aids of all sorts. Will someone answer and let me know what to expect post surgery -- pain, what I might be able to do on my own, items that I might purchase to help, etc? I am really appreciate of any and all help that you can give. I have been in a lot of pain for quite a while and finally after all the injections, etc, laminectomy of L-4 to L-5 and clean out around my sciatic nerve (last March), a new doctor ordered a long frame
x ray series and a full spine MRI. I am so very thankful for that doctor. I have terrible sciatic pain and pain in my feet from the nerve being impinged. I say all this to give a bit of background. My surgery is scheduled for two days near the end of February. I am 60 years old and I do have a wonderful husband, daughter and step children who are very sweet. Thanks so much for any and all help. Sheryl

[titaniumed]

Welcome to the forum Sheryl

We really don’t know what to expect other than from reading testimonials, and they can vary. I think the most important thing to have is a good attitude, and accept the change that will happen. Change is always a hard thing, and adapting is necessary. You will master patience as you heal.

The meds they use in the hospital work quite well, and they should keep your initial pain under control.....What can be painful is the eventual weaning process, this is never an easy thing. For me, after surgery, the pain I had was mainly in the lower GI due to taking medications....Constipation can happen and it can be extremely painful.

I battled sciatica for 6 years, had the horse kick in the greater trochanter, and the flame thrower on the top of my right ankle.....fun, fun, fun. My surgical decision was based on the brutal sciatica pain, and knowing that things would not improve in the long run. I just wanted to help justify your decision. In the end, I couldn’t dodge surgery anymore, and really had to get it done. Surgery saved my life. If you have lumbar herniation’s in a large scoliosis curve, these can be especially difficult to deal with.

I didn’t buy anything because I’m cheap. LOL And I wouldn’t buy much since you do have a good support team, and they can get what you need as you go. My insurance company supplied my grabber and walker....and there are 200 walkers in every nursing room basement, and they will gladly give you one for free as they cant get rid of them fast enough. With me, I could never find my grabber, and wasn’t looking for it, so it wasn’t of much value. You will learn to pick up clothes with your foot and big toe. You simply grab, bend your knee and grab from behind. (An example of adaptability) Personally, I would wait to see what they give you at the hospital. I have a beautiful Lazy Boy recliner with heat and vibration, it was an $1800 chair, and I don’t sit in it anymore......They should at least give you a sock installer in the hospital. Loose socks and clothes are easier to deal with.

I see you are doing a 2 stage. Will this be spaced 2 days apart?

Ed

[TXMom]

Welcome to the forum Sheryl

We really don’t know what to expect other than from reading testimonials, and they can vary. I think the most important thing to have is a good attitude, and accept the change that will happen. Change is always a hard thing, and adapting is necessary. You will master patience as you heal.

The meds they use in the hospital work quite well, and they should keep your initial pain under control.....What can be painful is the eventual weaning process, this is never an easy thing. For me, after surgery, the pain I had was mainly in the lower GI due to taking medications....Constipation can happen and it can be extremely painful.

I battled sciatica for 6 years, had the horse kick in the greater trochanter, and the flame thrower on the top of my right ankle.....fun, fun, fun. My surgical decision was based on the brutal sciatica pain, and knowing that things would not improve in the long run. I just wanted to help justify your decision. In the end, I couldn’t dodge surgery anymore, and really had to get it done. Surgery saved my life. If you have lumbar herniation’s in a large scoliosis curve, these can be especially difficult to deal with.

I didn’t buy anything because I’m cheap. LOL And I wouldn’t buy much since you do have a good support team, and they can get what you need as you go. My insurance company supplied my grabber and walker....and there are 200 walkers in every nursing room basement, and they will gladly give you one for free as they cant get rid of them fast enough. With me, I could never find my grabber, and wasn’t looking for it, so it wasn’t of much value. You will learn to pick up clothes with your foot and big toe. You simply grab, bend your knee and grab from behind. (An example of adaptability) Personally, I would wait to see what they give you at the hospital. I have a beautiful Lazy Boy recliner with heat and vibration, it was an $1800 chair, and I don’t sit in it anymore......They should at least give you a sock installer in the hospital. Loose socks and clothes are easier to deal with.

I see you are doing a 2 stage. Will this be spaced 2 days apart?

Ed

Hi Ed,

Thanks so much for your reply. Yes, my surgery will take place on two separate days, a Wednesday and a Friday. They will put in the "cages" on Wednesday in late February and then the rods and screws on Friday. I will be in the hospital anywhere from a week to ten days and then either back to Central Texas where home is, or stay at the rehab center in Houston.

I finally had some tests given to me last October and all the pain, tiredness and nerve pain made sense. I certainly wasn't expecting the degenerative scoliosis diagnosis. I have studied many posts here on this forum and it seems to be that no matter the way the scoliosis came to be, the type of surgery seems to be the same. I made the decision to have surgery because I cannot live like this any longer. I can't do a lot of what I used to do and the pain just tires me out and keeps me tied to the meds.

I am always impressed by your posts and what you are now able to do. Did you wear a brace post surgery? I will have one for about three months, which I know will drive me crazy, but it is necessary. What was the most difficult thing for you to get used to post surgery? Thanks for the tips on the clogging of the digestion system. I came to expect that after reading. I might want Miralax in my IV! Ha!

Anyway, thanks so very much for your help, Ed. I truly do appreciate it. I am very nervous about the surgery, the pain afterwards and my limitations going forward. I know that I must do this, however, if I ever want some semblance of normal again.

[LindaRacine]

Hi Sheryl...

Unlike Ed, I found my grabbers to be of great importance. I'm 6 years post-op, and still use them all of the time.

It's very difficult to tell you what to expect post-operatively. There's a huge range in recovery. We occasionally hear from someone who is off all narcotic medications within a week, and others who take narcotics for many years afterward. Hopefully, medication will keep you relatively comfortable for that early postop period. You'll probably find that sleep becomes an issue at some point. You'll also have to deal with a bowel regimen to counteract the effect of narcotics. When you think you're losing your mind, and wonder how you could possibly have volunteered for this, remember there are a whole bunch of us who have been there before you. With any luck, you'll get through it without too many issues. The good news is that, somewhere between 6 weeks and 3 months, you'll almost certainly feel a lot better. Hang in there.

Best of luck!

Regards,
Linda

[TXMom]

Hi Sheryl...

Unlike Ed, I found my grabbers to be of great importance. I'm 6 years post-op, and still use them all of the time.

It's very difficult to tell you what to expect post-operatively. There's a huge range in recovery. We occasionally hear from someone who is off all narcotic medications within a week, and others who take narcotics for many years afterward. Hopefully, medication will keep you relatively comfortable for that early postop period. You'll probably find that sleep becomes an issue at some point. You'll also have to deal with a bowel regimen to counteract the effect of narcotics. When you think you're losing your mind, and wonder how you could possibly have volunteered for this, remember there are a whole bunch of us who have been there before you. With any luck, you'll get through it without too many issues. The good news is that, somewhere between 6 weeks and 3 months, you'll almost certainly feel a lot better. Hang in there.

Best of luck!

Regards,
Linda

Hi Linda,

Thank you so very much for answering. I am so thankful for everyone here and I want to hear about all their experiences. Thank you for reiterating about the bowel issues. As I told Ed, maybe I need the Miralax in the IV! Just kidding, but not much. 😀 Thank you for the timeline thoughts too. My doctor in Houston did say that the first two weeks are pretty miserable. I am taking that to mean that I will wonder why I've done this! My husband is a gem and I really don't know what I would do without him. He is a true rock to lean on and my faith in God as well, will get me through this. I am concerned about the medication use, because I have had to be on meds now for over a year and a half. The doctor told me that would probably complicate things after surgery. The bathroom issues are probably my biggest worry. Also, I wonder -- am I likely to be able to bend at all if I am fused to pelvis/sacrum? What if I fall down? Is it possible to get up by yourself off the floor? I'm sorry to pepper you with all these questions, so please forgive me. I have asked for the assistant to call me in Houston, but she hasn't gotten to it yet. I really appreciate it, Linda. Thanks again for your encouragement. 😀 I know that so many folks here have gone through so much more than this and still made it through. 😀

[KathyInIowa]

Hi, Sheryl.

I am someone who definitely benefited from the grabbers. I'm 7-months post op and I STILL use mine all the time. I can get by without them, as I have when I travel on a plane and they don't fit in luggage, but at home I use them still for convenience and I get dressed quicker when I use it.

I was 55 (well, I am still 55 for 2 more months :-)) at the time of my surgery. I had anterior/posterior, but they did mine in one surgery. I have a 7-level fusion T11-sacrum. I was battling sciatica from a herniated disc, stenosis, etc for 3 years. I also had a decompression surgery for the herniated disc, but then I went downhill after that.

As Linda and Ed said, everyone is different with post op pain and pain management. I think the way Linda described things was me to a tee. My pain was managed with meds pretty well, and I don't even remember much from the first 2 weeks. My husband was telling me things I did and said and I have no memory. Having said that, I know I was in lots of pain, but I don't recall the really bad phase. So, to me, that's a good thing! But, then came the roller coaster ride of no sleep, constipation, chronic fatigue, and the way narcotics messed with my mind. I had never taken narcotics and so I was not prepared for that. I had weaned myself off all medication by 6 or 7 weeks. I would have like to stay on them awhile longer, but I was tired of the mental aspect of them and was willing to deal with the pain rather than keep taking medication. But, I feel lucky that, at that point, my pain level was manageable with ice packs, rest and some tylenol here and there. On bad days, I did take a non-narcotic muscle relaxer for sleeping (Flexeril was what I was given).

I haven't fallen yet (knock on wood!). But, if I did, I think I could get myself up. I can get down on the floor to pick something up, I can squat to get something off a low shelf. One thing I'm still careful about is squatting and then reaching (i.e. getting clothes out of the washer/dryer, getting something from the back of a low cupboard). I use my grabber for that or just have my husband. I'm still afraid of pulling something and just choose not to do those functions.

In the beginning, sitting was the WORST thing for me. For some reason, sitting affected my hip and the pain travelled down my leg. I'm better now, but that took almost 6 months so ease up. I had a lot of hip issues before my surgery, so I'm sure that's why it was bad after my surgery.

The only thing I bought was a grabber and long handled shoe horn and I still use them. The hospital made me buy a walker which I think I used about 1 week. LOL! I did get a brace that I faithfully wore when walking outside the first 6 weeks for fear of falling. I also wore it inside if I was up eating or going to be up for awhile. At my 6-week post op appointment my surgeon told me I needed to not wear it so much. So, I basically quit wearing it after 6 weeks except for going to the grocery store or something like that. I figured if I was wearing it people would stay away from me!

You are fortunate to have a very supportive family. I had that too - and it made a world of difference.

I wish you the best!

Kathy

[golfnut]

Sheryl,
Welcome to the forum. I was also 60 at the time of my surgery. Fear of the unknown, such as post surgery pain, success of the surgery, limitations of movements, had me a total basket case before the surgery. My post surgery pain was well managed with medications. The bowel issues were worse than any back pain. I had 5 grabbers so that there was one in most rooms of the house. I had lots of pillows added to the seats and behind my back of the kitchen chair and the chair I used in the family room. I borrowed an elevated toilet seat that I used for several months. The sock aide was also invaluable. I bought tennis shoes that didn't need to be tied since I planned to do a lot of walking and didn't want to bother anyone else to tie them for me. I read and reread David Wolpert's book about scoliosis surgery. I tried to focus on the fact that most of my limitations were temporary. I don't have the flexibility to do Yoga, but I do play a ton of golf, bike ride, tap dance, swim, go to exercise classes, etc. Best of luck with your surgery.

[kennedy]

Hi Sheryl welcome

[LindaRacine]

Hi Linda,

Thank you so very much for answering. I am so thankful for everyone here and I want to hear about all their experiences. Thank you for reiterating about the bowel issues. As I told Ed, maybe I need the Miralax in the IV! Just kidding, but not much. 😀 Thank you for the timeline thoughts too. My doctor in Houston did say that the first two weeks are pretty miserable. I am taking that to mean that I will wonder why I've done this! My husband is a gem and I really don't know what I would do without him. He is a true rock to lean on and my faith in God as well, will get me through this. I am concerned about the medication use, because I have had to be on meds now for over a year and a half. The doctor told me that would probably complicate things after surgery. The bathroom issues are probably my biggest worry. Also, I wonder -- am I likely to be able to bend at all if I am fused to pelvis/sacrum? What if I fall down? Is it possible to get up by yourself off the floor? I'm sorry to pepper you with all these questions, so please forgive me. I have asked for the assistant to call me in Houston, but she hasn't gotten to it yet. I really appreciate it, Linda. Thanks again for your encouragement. 😀 I know that so many folks here have gone through so much more than this and still made it through. 😀

Hi Sheryl...

It may not be pretty, but you should be able to get yourself off of the ground, especially if you can reach something like a chair to lean on as you get up. Falling in the first 6 weeks is definitely not recommended. :-) Many of us have fallen relatively soon after surgery. It's scary, but usually not a disaster. You should definitely be careful.

--Linda

[titaniumed]

What was the most difficult thing for you to get used to post surgery?

Having the ladies hold the door for me. (smiley face)

Actually, there are going to be all sorts of quirky things we have to get used to. I would say that for those that don’t take medications, opoid’s specifically, this is the hardest because of all the changes that happen. Freezing one minute, sweating the next is the most bizarre and clothes come on and off from one second to the next trying to regulate temperature. Trying to sleep, insomnia, weight loss from taking opoids, and sitting which is so difficult. I had a laptop at my kitchen counter for a really long time. You read an e-mail for a few minutes, forget, go back and read again, make a decision, and 2 days later you do your short reply. I had to make MAJOR financial decisions on heavy meds. I look back at that period and I am surprised since it all worked out quite well. Short term memory gets affected, attention span is very short, but the long term memory remains intact.....We do a lot of thinking in our recoveries, our thoughts should include positive thoughts, always remembering like Karen mentioned that our limitations are only temporary in our recoveries.....There is always light at the end of the tunnel.

The BLT’s.....NO Bending, lifting, or twisting becomes our priority..... It starts after they carefully get you up, usually the next day. I felt so tall and delicate and didn’t want to disrupt any healing process by exerting any un-wanted forces. Walking is our thing.... It’s mainly about moving blood around which carries nutrients to healing zones. There is no marathon, but we need to do short walks often, multiple times throughout the day. In the kitchen, I would do heel lifts while standing to help prevent DVT.
https://en.wikipedia.org/wiki/Deep_vein_thrombosis

No falls, and NO CAR CRASHES!!!!!! We had one young girl that was involved in a auto crash right after her surgery, this is NOT a good situation because they don’t like going back in so soon. From testimonials and personal experience, the standard time period is usually a year on any surgical intervention....I stayed at home most of the time because of this....its just safer. After I quit meds, I would jump out of the nest and take short trips in the car, one mile usually to food shop. It was the first time I had the bag girls wheel my cart and actually load the groceries into the trunk. When I returned home, I would carry one item in each hand to transfer everything to the kitchen.....I didn’t buy heavy items, and didn’t lift much more than a dinner plate for 6 months....

I did a solo recovery....I left my front door unlocked, and all sorts of people were coming in. It was like the old college toga parties, only with pain. Ha ha....I think John Belushi even showed up! I did like when people came, all the nurses in town were over here at some point. I actually miss my recovery! I also miss the naps. It took me 2 solid years to get over the fatigue.....2 years. I don’t know why this happened? My surgeon told me that it wouldn’t feel like I was hit my a truck, it would feel like I was hit by a train.....but you know, it was ok. It was a process that had to happen. I waited too long and my surgeries were challenging. (smug face) It took me a few years to even believe that I came out so well. I took 18 months off before returning down to the office.

I think it was just another test in life.....a test of faith which is a powerful thing. All the rest of it, doesn’t matter....

I had a clamshell brace made before my surgeries but I grew 4 inches, and had a post op ileus and was 9 months prego. So, like a fat turtle, I would strap in only when I left the house. It offered a level of protection, but if you avoid any falling, the need for this protection it isn’t overly critical. My walker was mainly used upon getting out of bed. When you first stand up, it’s a good idea to just stand there to get your bearings. I would stand sometimes for 10 minutes if need be, to make sure I wasn’t dizzy and would fall. If you can anticipate a fall, go down on one knee first to soften the blow.

I would have 2 bottles of Magnesium Citrate Oral solution on standby....This is a strong over the counter laxitave, that will knock Hoover dam down. Opoid constipation became a problem a few weeks after I was home. I had built up an immunity to stool softeners. I had multiple products I tried, but the Mag Citrate is your fire extinguisher. It can save an embarrassing trip down to emergency.

Ed

[jackieg412]

oh Ed you are so descriptive in your post. You always make me smile. And well said.

[TXMom]

Hi, Sheryl.

I am someone who definitely benefited from the grabbers. I'm 7-months post op and I STILL use mine all the time. I can get by without them, as I have when I travel on a plane and they don't fit in luggage, but at home I use them still for convenience and I get dressed quicker when I use it.

I was 55 (well, I am still 55 for 2 more months :-)) at the time of my surgery. I had anterior/posterior, but they did mine in one surgery. I have a 7-level fusion T11-sacrum. I was battling sciatica from a herniated disc, stenosis, etc for 3 years. I also had a decompression surgery for the herniated disc, but then I went downhill after that.

As Linda and Ed said, everyone is different with post op pain and pain management. I think the way Linda described things was me to a tee. My pain was managed with meds pretty well, and I don't even remember much from the first 2 weeks. My husband was telling me things I did and said and I have no memory. Having said that, I know I was in lots of pain, but I don't recall the really bad phase. So, to me, that's a good thing! But, then came the roller coaster ride of no sleep, constipation, chronic fatigue, and the way narcotics messed with my mind. I had never taken narcotics and so I was not prepared for that. I had weaned myself off all medication by 6 or 7 weeks. I would have like to stay on them awhile longer, but I was tired of the mental aspect of them and was willing to deal with the pain rather than keep taking medication. But, I feel lucky that, at that point, my pain level was manageable with ice packs, rest and some tylenol here and there. On bad days, I did take a non-narcotic muscle relaxer for sleeping (Flexeril was what I was given).

I haven't fallen yet (knock on wood!). But, if I did, I think I could get myself up. I can get down on the floor to pick something up, I can squat to get something off a low shelf. One thing I'm still careful about is squatting and then reaching (i.e. getting clothes out of the washer/dryer, getting something from the back of a low cupboard). I use my grabber for that or just have my husband. I'm still afraid of pulling something and just choose not to do those functions.

In the beginning, sitting was the WORST thing for me. For some reason, sitting affected my hip and the pain travelled down my leg. I'm better now, but that took almost 6 months so ease up. I had a lot of hip issues before my surgery, so I'm sure that's why it was bad after my surgery.

The only thing I bought was a grabber and long handled shoe horn and I still use them. The hospital made me buy a walker which I think I used about 1 week. LOL! I did get a brace that I faithfully wore when walking outside the first 6 weeks for fear of falling. I also wore it inside if I was up eating or going to be up for awhile. At my 6-week post op appointment my surgeon told me I needed to not wear it so much. So, I basically quit wearing it after 6 weeks except for going to the grocery store or something like that. I figured if I was wearing it people would stay away from me!

You are fortunate to have a very supportive family. I had that too - and it made a world of difference.

I wish you the best!

Kathy

Hi Kathy,

Thank you so much for your response. I am sorry that I have taken so long to get back to you. I have been in very intense pain and have been very down for a couple of days. The nerve pain in my feet never goes away and it so severe that sometimes all I want to do is sit. I have constant sciatic pain in both legs from the buttocks down to my toes. Sometimes it keeps me awake at night. I have been on narcotics for nearly two years at this level. My surgery is now set for February 28 and March 2. I moved it back a week to enable me to work on some projects in my sewing area and hobby room. It is still a mess up here after we moved seven months ago.

I have three grabbers already and I'm so thankful for them. I often forget to use them, silly me, but they are so helpful. I can bend over really well, so I guess I take advantage of that because I know it will soon be gone. It is super helpful to read the stories of others in our condition. Even though mine is degenerative scoliosis, the surgery is still the same, so I'm thankful to have a support group here. Thanks for giving me encouragement about falling down and getting back up. I am not too graceful, LOL, but I sure am going to be super careful to try not to fall early on. I seem to have gotten "shopping-itis" the last two weeks. I think I might be making up for not going anywhere for several weeks after surgery. HaHa! May I please ask what you wore under your brace or did you put your brace under your clothes? That is something I want to prepare for ahead of time, getting anything I might need. I function better when I have thought over as many angles of a problem as possible, ahead of time.

Again, thank you, Kathy. You have no idea how much I appreciate your reply and that of Ed and Linda and everyone else. I need the support as I am in the "fearful of the upcoming pain" stage.

Sincerely, Sheryl in TX

[TXMom]

Sheryl,
Welcome to the forum. I was also 60 at the time of my surgery. Fear of the unknown, such as post surgery pain, success of the surgery, limitations of movements, had me a total basket case before the surgery. My post surgery pain was well managed with medications. The bowel issues were worse than any back pain. I had 5 grabbers so that there was one in most rooms of the house. I had lots of pillows added to the seats and behind my back of the kitchen chair and the chair I used in the family room. I borrowed an elevated toilet seat that I used for several months. The sock aide was also invaluable. I bought tennis shoes that didn't need to be tied since I planned to do a lot of walking and didn't want to bother anyone else to tie them for me. I read and reread David Wolpert's book about scoliosis surgery. I tried to focus on the fact that most of my limitations were temporary. I don't have the flexibility to do Yoga, but I do play a ton of golf, bike ride, tap dance, swim, go to exercise classes, etc. Best of luck with your surgery.

Hi Karen,

Thanks so much for your reply. You are one lady who has been impressing me with all that you can do. I'm so glad that you are able to do all those athletic things! Years ago, I had the opportunity to take a ladies tap dance while my daughter was taking her dance classes at a young age. Reading about you has made me wish that I had taken that chance. I'm not too athletic, but I did love step classes, slide classes and I love the treadmill and the exercise bike. I've been trying to do some exercise before surgery to get my legs stronger. In September of 2015, I had a right knee replacement and then we moved six months after that, so my knee wasn't fully "rehabbed" before packing and moving. I've been using my exercise bike to work on that. I know that I will need to do more knee bending and squatting. Of course, after the back heals, my left knee will be up for replacement.

I appreciate your comment about all the extra pillows. We have a ton of decorative pillows in this house (mostly on our bed, LOL) so I imagine I will be borrowing from that collection to prop me up. I will be looking up David Wolpert's book about scoliosis surgery. That sounds like it's a lot of help. I want to be in the know and not have my head in the sand, so to speak. Thank you, Karen for all of your comments. It is so wonderful to be able to come here and know what has helped others and get the support that we all need before and after.

Blessings to you, Karen!

Sheryl

[TXMom]

Hi Sheryl welcome

Thank you so much, Kennedy. I really appreciate your welcoming me here.

Blessings,
Sheryl

[TXMom]

What tops, camisoles, bras etc did you wear? I'm not sure what will be most comfortable so I'm taking a poll. HaHa!

Thanks,
Sheryl in TX