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TXMom
01-18-2017, 01:42 AM
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
01-18-2017, 08:17 PM
Welcome to the forum Sheryl

We really donít 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 couldnít dodge surgery anymore, and really had to get it done. Surgery saved my life. If you have lumbar herniationís in a large scoliosis curve, these can be especially difficult to deal with.

I didnít buy anything because Iím cheap. LOL And I wouldnít 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 wasnít looking for it, so it wasnít 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 donít 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
01-18-2017, 10:25 PM
Welcome to the forum Sheryl

We really donít 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 couldnít dodge surgery anymore, and really had to get it done. Surgery saved my life. If you have lumbar herniationís in a large scoliosis curve, these can be especially difficult to deal with.

I didnít buy anything because Iím cheap. LOL And I wouldnít 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 wasnít looking for it, so it wasnít 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 donít 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
01-19-2017, 12:29 AM
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
01-19-2017, 01:50 AM
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
01-19-2017, 12:15 PM
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
01-19-2017, 05:34 PM
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
01-19-2017, 10:15 PM
Hi Sheryl welcome

LindaRacine
01-19-2017, 10:45 PM
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
01-21-2017, 11:35 AM
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 donít take medications, opoidís 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 BLTís.....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 didnít want to disrupt any healing process by exerting any un-wanted forces. Walking is our thing.... Itís 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 donít 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 didnít buy heavy items, and didnít 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 donít know why this happened? My surgeon told me that it wouldnít 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, doesnít 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 isnít overly critical. My walker was mainly used upon getting out of bed. When you first stand up, itís 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 wasnít 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
01-21-2017, 11:46 AM
oh Ed you are so descriptive in your post. You always make me smile. And well said.

TXMom
01-27-2017, 11:59 PM
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
01-28-2017, 12:06 AM
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
01-28-2017, 12:08 AM
Hi Sheryl welcome


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

Blessings,
Sheryl :)

TXMom
01-28-2017, 12:32 AM
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

Irina
01-28-2017, 01:56 AM
Hi Sheryl,

I wore basic t-shirts under the brace - you don't want a loose t-shirt under the brace as it will fold and irritate you. When it got warmer and I started driving and doing a little grocery shopping, I always wore brace over my clothes to keep people away from me :) I was afraid of somebody bumping into me and thought that brace would be like red traffic light.

I didn't care for any bras during the first month, but then I wore front closure bras. I didn't want any hooks to be around my scar. I had some sports bras, but putting them on and off was very difficult. T-shirts, yoga pants, sweat pants, and pajamas was all the clothing I needed in the beginning.

TXMom
01-28-2017, 02:24 AM
Hi Sheryl,

I wore basic t-shirts under the brace - you don't want a loose t-shirt under the brace as it will fold and irritate you. When it got warmer and I started driving and doing a little grocery shopping, I always wore brace over my clothes to keep people away from me :) I was afraid of somebody bumping into me and thought that brace would be like red traffic light.

I didn't care for any bras during the first month, but then I wore front closure bras. I didn't want any hooks to be around my scar. I had some sports bras, but putting them on and off was very difficult. T-shirts, yoga pants, sweat pants, and pajamas was all the clothing I needed in the beginning.



Thank you, Irina. I really appreciate your answer. That is good advice. I have been stocking up on nice tees because I kind of thought they might be the most comfortable. I guess a few thin camisoles or knit bras might be nice too. I agree that I don't want hooks on my back. And you're right about wearing the brace over your tee shirts. It's probably a very good idea to keep strangers and even acquaintances at more than arms length. That's all one would need -- a nice well meaning person to come up and slap/pat hard on one's back! Ouch!!!!! I can see a brace as being a red light! Maybe I need neon tape on it! HaHa!

Were you able to bend at all after your total recovery? I'm trying to understand what is possible after fusing down to the Sacrum?

Thanks so much, Irina! I truly appreciate it.

TXMom
01-28-2017, 02:28 AM
Welcome to the forum Sheryl

We really donít 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 couldnít dodge surgery anymore, and really had to get it done. Surgery saved my life. If you have lumbar herniationís in a large scoliosis curve, these can be especially difficult to deal with.

I didnít buy anything because Iím cheap. LOL And I wouldnít 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 wasnít looking for it, so it wasnít 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 donít 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


Hey Ed, One question. I'm not able to see your photos of post recovery bending and twisting. The link won't work for me.

titaniumed
01-28-2017, 03:02 PM
I'm not able to see your photos of post recovery bending and twisting. The link won't work for me.

I know. It was due to a software update on the NSF server. I could strangle most software developers with my bare hands, and go to jail for it.

Much of my scoliosis related data is on an older computer of mine which I need to do some work on.....I should simply take some new photos down at work. I just have to remember to do this again!

But I do have skiing video! LOL Iím in the red jacket.

Putting on ski boots is the ultimate test for full fusion. Its one of the hardest things I have had to figure out after scoliosis surgery.

https://www.youtube.com/watch?v=4tEypv3Vz8o

Ed

rjmacready
01-28-2017, 05:02 PM
Hello. Just a few thoughts from someone who is in your position. I would suggest your surgeon specializes in ASD procedures. No thanks to anyone here, I discovered Dr. Lawrence Lenke had moved his practice from St. Louis to NYC. Here is his bio:
http://vesta.cumc.columbia.edu/ortho/facdb/profile/profile.php?id=+ll2989

I'm not an expert such as others on this forum. I will share with you, verbatim, what Dr. Lenke told me on Dec 7: "You are agreeing to the most invasive, complications ridden, painful surgery on the books. There is nothing that is comparable." Sobering words from a world renowned expert, but when you have a 85 degree throacic curve as do I, there are not a lot of options. The choices boil down to drugging yourself into oblivion in a wheel chair, or rolling the dice. I won't live the remainder of my life in a wheel chair.

My T1-Sacrum Medtronic SOLERA hardware installation, plus various level osteotomies and resections is slated for July. I won't bore you with the full surgical plan. I fully expect complications, obstacles and a boat load of pain. The procedure will be a 12 hour marathon. I will have my entire blood volume swapped out as banking your own is not an option for a procedure of this enormity.

My main counsel would be make sure your instincts tell you this is the right person for the job. You have the right to a fully detailed surgical and pain management plan in advance. Faith in your surgeon and their depth of experience I feel are paramount. But as I said, I'm no expert. I do know this is a one way trip; no refunds or do overs. I wish you the best of luck. RJM

TXMom
01-28-2017, 05:22 PM
I know. It was due to a software update on the NSF server. I could strangle most software developers with my bare hands, and go to jail for it.

Much of my scoliosis related data is on an older computer of mine which I need to do some work on.....I should simply take some new photos down at work. I just have to remember to do this again!

But I do have skiing video! LOL Iím in the red jacket.

Putting on ski boots is the ultimate test for full fusion. Its one of the hardest things I have had to figure out after scoliosis surgery.

https://www.youtube.com/watch?v=4tEypv3Vz8o

Ed


First of all, Ed, please don't strangle the soft ware developers. LOL We will miss you, your experiences and certainly a fine video of you skiing through the trees. I couldn't ski through trees when my back and knees were good! HaHa! Super impressed am I! Thanks for the encouragement. As for the ski boots, how the heck you ever got them on, is beyond me. They are enough of a challenge when you can bend down to the ground!

Sheryl

TXMom
01-28-2017, 05:33 PM
Hello. Just a few thoughts from someone who is in your position. I would suggest your surgeon specializes in ASD procedures. No thanks to anyone here, I discovered Dr. Lawrence Lenke had moved his practice from St. Louis to NYC. Here is his bio:
http://vesta.cumc.columbia.edu/ortho/facdb/profile/profile.php?id=+ll2989

I'm not an expert such as others on this forum. I will share with you, verbatim, what Dr. Lenke told me on Dec 7: "You are agreeing to the most invasive, complications ridden, painful surgery on the books. There is nothing that is comparable." Sobering words from a world renowned expert, but when you have a 85 degree throacic curve as do I, there are not a lot of options. The choices boil down to drugging yourself into oblivion in a wheel chair, or rolling the dice. I won't live the remainder of my life in a wheel chair.

My T1-Sacrum Medtronic SOLERA hardware installation, plus various level osteotomies and resections is slated for July. I won't bore you with the full surgical plan. I fully expect complications, obstacles and a boat load of pain. The procedure will be a 12 hour marathon. I will have my entire blood volume swapped out as banking your own is not an option for a procedure of this enormity.

My main counsel would be make sure your instincts tell you this is the right person for the job. You have the right to a fully detailed surgical and pain management plan in advance. Faith in your surgeon and their depth of experience I feel are paramount. But as I said, I'm no expert. I do know this is a one way trip; no refunds or do overs. I wish you the best of luck. RJM


Hi,

Thank you for your reply. I do understand that this is a super serious surgery, just as you said. My doctor definitely specializes in scoliosis and fusion techniques. He studied my films with his colleage and really wanted to try a lesser fusion with some minimally invasive work. He concurred with my Austin doctor, that the full nine level is needed. I am not deluding myself that this will be the most physical pain that I have ever had and if you knew me, you would understand how much pain from other illnesses and surgeries that I have had. I am so sorry that your fusion will be so very intense and so long. I have been told about the blood transfusions as well. I am expecting that I will need two. My doctor will spin my blood and use blood from their bank as well as some of mine to "rehydrate" my system. I don't know how to explain it in medical terms. I asked about banking blood and he said that it isn't possible for this type surgery. You just cannot bank enough blood in a short time. I am just as worried as you are, and I know that my recovery will take a long time. My surgeon has not sugar coated anything, which is exactly what I asked him to do -- shoot straight with me and tell it like it is. I like to know everything, or at least as much as possible, up front. That is how I mentally work through things and possibly work out a solution ahead of the need for one.

I will be praying for you. Perhaps there will be no complications or problems and you will feel just wonderful after you've had a chance for recovery. I promise not to forget to keep you in my thoughts and prayers. I certainly don't blame you for not wanting to spend your life in a wheel chair. I don't want that for you either. My choice would be to spend forever on Norco and endure permanent damage in my legs and feet, and possible incontinence. I can't live like that either. Please know that we all care about you and please let us know how everything goes. Thanks so much for posting this.

Big Hugs,
Sheryl :)

Irina
01-29-2017, 01:59 AM
Hi Sheryl,

I am fused T6 to sacrum - I am pain free and don't feel any limitations. I cannot bend from the waist, but I can bend from the hips. You will be using your knee and hip joints to compensate for a fused back. I easily pick things up off the floor - just squat and lean forward a little. Part of my workout routine is abdominal exercises on the floor. I am getting on and off the floor without any issues and I don't need to lean on anything to get up. In fact, people who didn't know me before the surgery, don't notice anything unusual in my gate, movements etc. If I tell them my story, they say that they would have never guessed that I had these problems with my back. The only thing they say they notice is that I always have this perfect posture.

I am wishing you all the best! I know how scary this surgery is, and we are here to help.

titaniumed
01-30-2017, 11:12 AM
various level osteotomies and resections is slated

Chet, thx for letting us know....I think you are in a good place now.

Did he say what levels?

Ed

Chihuahua Mama
01-30-2017, 01:11 PM
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.

Hi Sheryl, Actually I found my brace to be a huge comfort. Putting it on and off was the part I hated but once on, it became my lil "blankie" I found it kept me from making mistakes and things just hurt less when I wore it. Everyone is different but I wore mine over my clothes and even after I was cleared to drive, I didn't worry about what others thought. Maybe I'm in a backwoods area, but people even made comments, "OMG what happened to you?" "Did you get in a car accident" etc. When I had my surgery in California, no one ever said a word and I notice many others in braces so it probably depends on where you live. I haven't seen anyone in a brace since my surgery so perhaps there are just more scoliosis surgeons in So Cal, therefore more surgeries? Just a guess.

I hope your brace becomes your BF for a while. What I hated (and still do) is the 'bottom buddy' and the difficulty in bathroom duty. I found wearing mini-pads helped a lot for what that's worth.

Best of luck!

rjmacready
01-30-2017, 06:47 PM
Chet, thx for letting us know....I think you are in a good place now.

Did he say what levels?

Ed

Hi Ed and Sheryl, The whole plan: 1) Posterior spinal fusion w/ SOLERA hardware system from T1 to Sacrum
2) Posterior column osteotomy @ T9-L2
3) Vertebral column resection @ L3
4) Anterior spinal fusion from a posterior approach @ L2-4

Dx: Flat back syndrome, kyphoscoliosis, pseudarthrosis, coronal imbabance. Thoracic curve 85+ degrees, no #'s on deformities.
Sheryl:
I fully expect complications as my current situation resulted from a bungled spinal fusion w/ BAK interbody fusion cages @ L3-4, L4-5 in 1998. I don't mean to paint an overly pessimistic picture for you. You asked about women who have undergone this. I have a dialog with a wonderful woman from Australia who is 4 years plus out from a complete fusion, just as you and I are facing. She was out of the hospital in 6 days, and going for long walks at 3 months post op. 18 months later she was hiking, biking, rafting, doing everything she used to do. Not one complication, very little post op narcotic use. If it had not been for her story I might have found a reason to put this off even further than I have. Now my biggest worry is the entire health care insurance system will be in such upheaval by July my current insurance(s) may not cover the costs. I'm guessing this is a $500K production from soup to nuts, that is for me. From pre op testing to being discharged from a month long stay in an inpatient rehab center; the entire bill is going to be astronomical. Best Of Luck, Chet

titaniumed
01-30-2017, 10:22 PM
2) Posterior column osteotomy @ T9-L2
3) Vertebral column resection @ L3


This is not your everyday scoliosis surgery shopping cart.....Are you pitched forward and looking down?

This is a 5 level osteotomy with a VCR below it. There is nobody on this forum that I can remember with this much work, maybe Linda can remember. (Pretty hard to forget)

Dr Lenke can handle this you know, and you can too.

Ed

rjmacready
01-31-2017, 07:21 PM
Ed, All I see when I walk is my feet. Good call. It is not particulalry encouraging that this amount of work is unusual. I obviously let it progress way too long, for reasons that I may never fully understand. Any sort of activity lasting more than 20 minutes is excruciatingly painful. Now it is up to the good Dr. Lenke, who did not hesitate to take my case. He asked me to try and lay flat on my back- I was able to do so with some difficulty. This pleased him, saying "you just shaved a few hours off the procedure time". I suspect he sees cases where the procrastination has allowed the spine to become completely rigid. He had a gang of fellows and residents trailing behind him, so he must be at the top of his game. I'll go in knowing he gives me the best chance of success, I did not get that feeling from Kebaish. The approach at Hopkins was disjointed and unsettling, they made obtaining information like a surgical plan seem like I was prying. If I had only known Lenke had moved to NYC, I would have never spent all that time @ Hopkins. I would be well into my recovery by now had I known, but at least I did find out before, and not after! Chet

golfnut
01-31-2017, 10:55 PM
Dr. Lenke is the best! You are in good hands.

titaniumed
02-01-2017, 09:24 PM
Ed, All I see when I walk is my feet. Good call. It is not particulalry encouraging that this amount of work is unusual. I obviously let it progress way too long, for reasons that I may never fully understand. Any sort of activity lasting more than 20 minutes is excruciatingly painful. Now it is up to the good Dr. Lenke, who did not hesitate to take my case. He asked me to try and lay flat on my back- I was able to do so with some difficulty. This pleased him, saying "you just shaved a few hours off the procedure time". I suspect he sees cases where the procrastination has allowed the spine to become completely rigid. He had a gang of fellows and residents trailing behind him, so he must be at the top of his game. I'll go in knowing he gives me the best chance of success, I did not get that feeling from Kebaish. The approach at Hopkins was disjointed and unsettling, they made obtaining information like a surgical plan seem like I was prying. If I had only known Lenke had moved to NYC, I would have never spent all that time @ Hopkins. I would be well into my recovery by now had I known, but at least I did find out before, and not after! Chet

Chet, The past is the past......Its time to turn a new page. My surgeon asked me several times why I waited so long, I didnít have an answer. I didnít think I needed to answer.....I was waiting for technology and all the chips to fall in the right place.

I didnít realize what kind of condition you were in until Dr Lenkeís report. There are a lot of ďheavy hittersĒ around here.

With the pain you have been through, I donít think its going to matter much. The patients that have had the really bad pain before, do much better after surgery....

Its going to be a huge improvement....

Ed

TXMom
02-09-2017, 01:38 AM
Hi Sheryl,

I am fused T6 to sacrum - I am pain free and don't feel any limitations. I cannot bend from the waist, but I can bend from the hips. You will be using your knee and hip joints to compensate for a fused back. I easily pick things up off the floor - just squat and lean forward a little. Part of my workout routine is abdominal exercises on the floor. I am getting on and off the floor without any issues and I don't need to lean on anything to get up. In fact, people who didn't know me before the surgery, don't notice anything unusual in my gate, movements etc. If I tell them my story, they say that they would have never guessed that I had these problems with my back. The only thing they say they notice is that I always have this perfect posture.

I am wishing you all the best! I know how scary this surgery is, and we are here to help.


Thank you so much for answering Irina. I am very sorry to answer you later than I had hoped to. My surgery dates of Feb 28 and Mar 2 are rapidly upon me and my jitters are getting much worse. It is getting too real, frankly. I have been in much pain and it seems to get worse each week. It is so nice to hear from folks who have gone through this surgery before. Your fusion is similar to mine, except mine will begin at about the T9 level, at least that is the plan, and then down to Sacrum. I have tried to practice bending at the hips, but I'm not sure that I'm doing it justice. I suppose one can only practice these things to a point. After the surgery it must be obvious what to do. It's good to hear that you can get off the floor, HaHa! I can't even imagine doing that with a brace on. I am planning on not needing to do it, at least while I'm alone. :).

I have also had to come to the point where I realized that many of the projects that I wanted to get done before surgery just aren't going to happen. I had a plan, but the time is getting away from me and frankly, most of the time, I just don't feel like doing the things I had planned.

Wish me luck as I'm so very nervous about all of this. I'm so happy to hear that you are doing so well. That does encourage me, for sure.

Sheryl :)

TXMom
02-09-2017, 01:48 AM
Hi Sheryl, Actually I found my brace to be a huge comfort. Putting it on and off was the part I hated but once on, it became my lil "blankie" I found it kept me from making mistakes and things just hurt less when I wore it. Everyone is different but I wore mine over my clothes and even after I was cleared to drive, I didn't worry about what others thought. Maybe I'm in a backwoods area, but people even made comments, "OMG what happened to you?" "Did you get in a car accident" etc. When I had my surgery in California, no one ever said a word and I notice many others in braces so it probably depends on where you live. I haven't seen anyone in a brace since my surgery so perhaps there are just more scoliosis surgeons in So Cal, therefore more surgeries? Just a guess.

I hope your brace becomes your BF for a while. What I hated (and still do) is the 'bottom buddy' and the difficulty in bathroom duty. I found wearing mini-pads helped a lot for what that's worth.

Best of luck!


Hi Susan,

Thanks so much for your reply. I understand how you found your brace to be your friend. Hopefully, mine will be as comfortable and wanted. I have gotten a few "bidet" bottles for the bathroom duties. I am not looking forward to dealing with that and I certainly don't want any help with it, except from inanimate objects. HaHa! Does it get better with the bathroom duties after a few months? Will it be that way always after surgery? I bought a little portable bidet bottle top that will attach to a regular water bottle and it has a small jar in which to carry it. I thought maybe that would help when I go out, which probably won't be for a few months. When did you first go out and about? Please tell me anything else that you can think of, because my anxiety about this surgery is getting so bad. I find that I am not able to get the projects done that I had planned to complete before surgery, and that's been depressing too. I guess I'm scared because I feel that I won't be able to do anything for months afterward. What were you able to do when you got home from the hospital and rehab? My hospital stay will be about a week or so and then if I need to, rehab for up to two weeks, but I hope only a week. I am going out of town to Houston for my surgery. My husband will work there while I'm in surgery and beyond. Anyway, that about sums it up for today. I appreciate any and all help that you have for me.

Thanks so much!
Sheryl in TX

TXMom
02-09-2017, 01:56 AM
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,

I am getting close to surgery in about two and half weeks and the nervousness is pretty bad. May I ask how long you were in the hospital and rehab? What were you able to do when you came home? Were you in a lot of pain when you were released and went home? Anything that you can think of that I need to know is much appreciated.

I ordered the book Scoliosis Surgery by David Wolpert. He described the first three weeks as "hell". That's not much to look forward to, is it? I see that you were a help in him writing it. That was nice of you to share your experiences. It was nice to see your name there, since I see you here. I skimmed part of the book that is no longer relative to my situation since I'm scheduled for surgery already. I concentrated on the hospital stay and the aftermath. UGH! I guess it's just a necessary evil in order to feel better and hopefully not be in any more or at least, not much, pain. I know that I can't stand this for much longer. The pain shadows everything that one tries to do.

Anyway, let me know if you think of anything else that would be pertinent. I really do appreciate it so much.

Sincerely,

Sheryl in TX

golfnut
02-09-2017, 11:51 AM
Sheryl,
I have vivid memories of the terror I was feeling the last few weeks before my surgery. It was far worse than the actual surgery and recovery. I think it's the fear of the unknown. When the surgery is over, you can focus on healing and getting your strength back. It takes a lot of patience and understanding of what your body went through and knowing that each month will be just a little better than the month before. I will definitely be thinking of you on the 28 and the 2nd and wishing you the best!

LindaRacine
02-09-2017, 06:46 PM
Hi Linda,

I am getting close to surgery in about two and half weeks and the nervousness is pretty bad. May I ask how long you were in the hospital and rehab? What were you able to do when you came home? Were you in a lot of pain when you were released and went home? Anything that you can think of that I need to know is much appreciated.

I ordered the book Scoliosis Surgery by David Wolpert. He described the first three weeks as "hell". That's not much to look forward to, is it? I see that you were a help in him writing it. That was nice of you to share your experiences. It was nice to see your name there, since I see you here. I skimmed part of the book that is no longer relative to my situation since I'm scheduled for surgery already. I concentrated on the hospital stay and the aftermath. UGH! I guess it's just a necessary evil in order to feel better and hopefully not be in any more or at least, not much, pain. I know that I can't stand this for much longer. The pain shadows everything that one tries to do.

Anyway, let me know if you think of anything else that would be pertinent. I really do appreciate it so much.

Sincerely,

Sheryl in TX

Hi Sheryl...

For my most recent surgery, I was in the hospital 5 days, and was discharged straight to home. After my initial surgery, I was in the hospital 12 days, and was discharged home. While it definitely wasn't much fun, I would not say it was horrible. I think techniques have improved, making early rehab easier than it used to be. I've known patients who were off pain medications in a week or two. When you're suffering, it will seem like time just drags, but when you look back, I think you'll find it went pretty quickly.

The one thing that happens to most adults is that we have a period of time when sleep is very elusive. After my last surgery, I barely slept at all for several weeks. When that occurred, I sort of lost my coping ability. Everything seemed so much worse than it actually was. My advice would be to try not to stress out about it. If you go more than a few days without sleep, ask for an RX for sleeping pills.

Also, you'll read about this a lot, but it can't be stressed enough. You will almost certainly be constipated while you're taking narcotics. I'm guessing that about 99% of us have at least some difficulty with this. Try to stay ahead of it by taking senna and docusate every day. If you get behind, you'll need to take more urgent measures (like Polyethylene glycol).

Most of all, try to relax. You'll get through it all, just as the rest of us did.

Best of luck!

Regards,
Linda

KathyInIowa
02-09-2017, 09:39 PM
Hi Susan,

Thanks so much for your reply. I understand how you found your brace to be your friend. Hopefully, mine will be as comfortable and wanted. I have gotten a few "bidet" bottles for the bathroom duties. I am not looking forward to dealing with that and I certainly don't want any help with it, except from inanimate objects. HaHa! Does it get better with the bathroom duties after a few months? Will it be that way always after surgery? I bought a little portable bidet bottle top that will attach to a regular water bottle and it has a small jar in which to carry it. I thought maybe that would help when I go out, which probably won't be for a few months. When did you first go out and about? Please tell me anything else that you can think of, because my anxiety about this surgery is getting so bad. I find that I am not able to get the projects done that I had planned to complete before surgery, and that's been depressing too. I guess I'm scared because I feel that I won't be able to do anything for months afterward. What were you able to do when you got home from the hospital and rehab? My hospital stay will be about a week or so and then if I need to, rehab for up to two weeks, but I hope only a week. I am going out of town to Houston for my surgery. My husband will work there while I'm in surgery and beyond. Anyway, that about sums it up for today. I appreciate any and all help that you have for me.

Thanks so much!
Sheryl in TX

Hi Sheryl.

This post is directed to Susan, but figured I would chime in. Your fusion will be similar to mine, I am T11 - sacrum. Our ages are similar, and mine is degenerative as well. I didn't have any issues with "bathroom duties" right after my surgery and I still don't. I could "reach around" just fine. I think some of that depends on body type though.

I also traveled to a different city for my surgery, 5 hours away. I spent my first 6-weeks in Minneapolis. I was lucky in that my son lives there so I stayed with him. I had my husband or another family member that I recruited with me 24/7 for 4 weeks. My husband was with me for the first 2.5 weeks which, in my opinion, were the most critical. I know I was in a lot of pain (because he tells me stories) but I honestly don't even remember. I was on so much pain medication and relaxers that something gave me amnesia. So, yes, maybe the first 2 or 3 weeks are "hell," but you might not even remember it. Once I "came around" I remember the pain, but it wasn't as bad as I had anticipated. So, that was good news!

I had anterior/posterior (I think you said you are too). Mine was all in the same surgery. I fully expected my stomach to be killing me, but I can honestly say my abdominal incision and all of that gave me no trouble and very little pain (again, the drugs were managing my pain). My bone & nerve pain were gone after the surgery, the back pain was mainly muscle & soft tissue pain from being pulled back to the correct place. The drugs helped with that, but I did use ice & heat A LOT to help manage that pain.

Looking back, I think the actual pain was not my biggest problem. I was used to being in high level, chronic back pain. I DID NOT like being on narcotic drugs. They made me feel "weird" in a way that I couldn't tolerate. I was emotional, had chronic insomnia, creepy dreams, etc. I knew I needed them so I kept with it, but I worked hard to wean myself off them after 6 weeks.

Going out and about: I barely left my son's apartment in those 6 weeks other than to walk outside. After about 4 weeks I did go to lunch once but stayed out about an hour and then needed to nap. One thing I was not prepared for (mentally) was how tired I was. Taking a shower was totally exhausting. So, I really just walked short walks several times a day and layed down a lot. I wasn't comfortable sitting, only laying flat on my back. So, I listened to music & audio books to pass the time. I had my lap top and worked a little bit but just in 30 or 45 minute increments.

One last thing. I don't know why, but I had really terrible thigh pain. I don't know if it was because of the anterior approach or what, but my thighs & hip flexor area were very painful for almost 4 months. I am now almost 8 months post op and that pain is mostly gone. But, I was unprepared to deal with that and if I was every laying crying about pain, it was my legs, not my back! That also made it harder for me to ever be real comfortable.

We created a calendar board with a medium sized white board. We drew a square for each hour of the day. We put my various meds on the appropriate square. We set alarms on phones for all those times. Whoever was in charge of me made sure I took my meds at the appropriate time for me. That helped a lot with managing the pain meds. Then, as I started weaning off the meds, we could easily just move the actual pill to a different square and change the alarm setting on the phone.

Try to stay calm these last few weeks. I kept telling myself "I trust my surgeon. I don't have a choice, I couldn't live with the pain I was in." I just had to do it. I wanted it to be over. When the day came, I just said "Let's do it!"

I will be thinking of you.

Kathy

susancook
02-11-2017, 07:47 PM
Hi Sheryl, I did some speed reading of the 3 pages of entries.
I had adult degenerative scoliosis and have had a convoluted journey in recovery.
My thoughts:
- the surgery can be positively life changing, esp if you are in a lot of pain preop.
- plan on lots of pain postop and have someone help you advocate for you if the doctors are not managing your pain well. Pain management is a fine tuning for each person. I have been both under and over medicated.
- the brace was my friend. T shirts as recommended by Irina. I did not worry about a bra.
- tell your supports to: plan on a postop problem. Almost everyone had one that I know about. I have won the lottery on postop problems. Having said that, my option was to be permanently in a wheelchair on opioids within 5 years if I did not have surgery. Someone else mentioned that scenario also.
- TRUST your surgeon
- go to "intensive rehab"
- reachers are great!
- have your support persons keep a notebook of everything that happens: what the surgeons says, timing of everything.

Sending you relaxing thoughts, a trusting perspective, and few bumps along the surgical way,
Another Susan

TXMom
02-15-2017, 11:10 PM
Sheryl,
I have vivid memories of the terror I was feeling the last few weeks before my surgery. It was far worse than the actual surgery and recovery. I think it's the fear of the unknown. When the surgery is over, you can focus on healing and getting your strength back. It takes a lot of patience and understanding of what your body went through and knowing that each month will be just a little better than the month before. I will definitely be thinking of you on the 28 and the 2nd and wishing you the best!



Thanks so much for posting to me, Karen. I truly appreciated your help and well wishes. Well, here is the latest -- I have put off my surgery until March 21 and 23. I was so dang nervous that I wasn't doing too well. I still have much to do in one area of our home that we moved into a few months ago and it was driving me nuts that I would have to come home and look at that mess! Ha! So, I thought to myself -- why am I making myself crazy over this, when I can just delay a few weeks and get most of it done. I'm just that way - a type A! I have been super relieved to put it off for just a bit. It has made a big difference in my attitude. I've got over a month and I've been doing things as much as I can stand it and making a dent already. It's like I needed permission from myself to postpone and then I felt better immediately. The doctor agreed and now all involved are much happier! HaHa! I will go into surgery now more mentally prepared. And, when I come home, I won't have that crap to look at upstairs! HaHa! I know that I won't get it all done, as one never does, but it helps to have some extra time. I've been a happy woman since last Friday! I will get nervous again I'm sure, but at least I'll be more prepared this time.

Thanks for telling me about your surgery. You have three more fusions than I'm expecting. I received my surgery plan in the mail and I'm OKed by insurance for a 7 - 12 level fusion. I get maybe that's just a description they use, as I'm scheduled to have nine levels. You say that you bend at the hips? For some stupid reason, I'm unable to imagine this. I'll check YouTube for visuals, maybe then I'll "get it".

Thanks again, and have a great rest of your week.

Sheryl

golfnut
02-16-2017, 06:26 AM
Sheryl,
That's great that you were able to delay your surgery for a few weeks and gain peace of mind with all that you need to do before your surgery. I have a Type A personality as well, so I totally get it. I just did a search "bending at the hips" and there are several images that will give you an idea. You will have more flexibility since you aren't going to be fused as many levels as I am. I didn't attempt to bend at all for at least 6 months. I used grabbers or went down on one knee. Good luck withnyour house.

TXMom
02-16-2017, 11:58 PM
Sheryl,
That's great that you were able to delay your surgery for a few weeks and gain peace of mind with all that you need to do before your surgery. I have a Type A personality as well, so I totally get it. I just did a search "bending at the hips" and there are several images that will give you an idea. You will have more flexibility since you aren't going to be fused as many levels as I am. I didn't attempt to bend at all for at least 6 months. I used grabbers or went down on one knee. Good luck withnyour house.


Thanks so much for answering my post, Karen. You totally understand being a Type A! I wish I could be a Type B like my husband, but it just doesn't work and won't happen. HaHa!

Last Saturday and Sunday, I over did it, unfortunately. Then yesterday, Wednesday, I went out for a mere four hours to go shop and run errands. Geez.....I am in bad pain today because of that. I'm glad that I postponed it a bit, because I need some days just to sit and read, so on the "good" days, I will get things done.

OK, so I just now looked up "bending at the hips". That's not too hard! Ha! I was thinking that with my fusion, I wouldn't even be able to do that. Well, geez, that is helpful. HaHa! I will be looking up more of this. I found a Yoga video of making a hip hinge, whatever that is. I have yet to watch it, but I will. Thanks so much for your encouragement. Did you have degenerative scoliosis, or scoliosis as a child?

I also am ordering a third grabber. Did you get any sock aids? How about that Bottom Buddy thingie? I have some bidet bottles, but nothing else yet. I'm not overweight, (well maybe ten pounds, Ha!) so I don't know if that is helpful or not with the reaching thingie. Geez....So much to prepare for and think about?

I would say the only negative thing about waiting, is obviously pain control. Today seems to be a bad pain day. I have a very high threshold for pain, so that's a help. Have a great weekend, Karen! It's a pleasure to talk with you. :)

golfnut
02-17-2017, 05:38 PM
Sheryl,
I was diagnosed with scoliosis in high school, but the curve wasn't bad enough for surgery at that time. I was never in a lot of pain before my surgery except when standing.
I used a sock aide for a long time, since my surgery was during the winter. I bought tennis shoes which didn't need to be tied. In order to shave my legs, I had a throwable razor taped to a long plastic handle. I don't remember what it was-possibly a back scratcher. The portable toilet with arm handles was a must. I was able to purchase a "spine kit" from Dr. Lenke's office that had a grabber, sock aide, and tongs that I used with flushable wipes (thought for sure it wouldn't be necessary, but it was since I couldn't twist and reach far enough). I also had extra cushions on the kitchen chair seat and behind my.back as well as on the family room chair where I sat. I had my favorite music downloaded and earphones for tons of walking during my recovery. I hope you have more good days! Don't overdo it.