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  • not so sure about scoli sugery a ymore

    Hi Guys, well I had a 3 level fusion done on Monday, I was scared as you can imagine- skip the details, suffice it to say- I am seriously doubting whteher I will be bale to endure scoli surery. This is c4/5 C5/6 and C6/7 but it is miserable, i hated the hospital beds, hated being helples. pain is OK actually it's the swallowing and mobility problems that are driving me carzy. discharged yesterday.. anyway my hostility was directed at PT - this guy comes in to insult me and I asked him "really? Insults? doe that work for you?" as if people really respond - oh ok since u insulted me, I'll get up and walk? I called him the Don Rickles of the hospital, bleah. ok enough, but seiourly- I don't think I can endure scoli surgery no- I thought this would be a good prep for scoli but its actually frightened me more..... i hate hospitals,..... have a good day shopping, or enjoying the online bargains, i'll read to catch up on everyone news.
    57 years old.
    thoracic curve 68 degrees
    lumbar-sacral curve +/- 41 degrees
    Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
    Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
    THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

  • #2
    Hospital

    Well I can't argue with on the hospitals. My hospital experience was the worst 6 days than I can remember. But I don't do well with helpless pain and being processed. All = hospitals. However I was more terrified of the recovery. Which still sucks but I remind myself is temporary. Helpless is bad. But the older you get without the surgery is more perm helpless. I cussed out a nurse, had a completely meltdown the first day when I was told I wouldn't be getting my normal meds which I depend on for my life and after another lashing to the pharmacist who advised he was in charge on my health not my dr per policy Needless to say that got resolved. And if I was asleep when my pain meds were due the nurses were told not to wake me to give me meds. Which meant by the time was awake I was In Total pain. So I went to plan b. Had friends bring me my meds already approved by the dr. Got an alarm and woke myself up every 4:15 so I could ask for meds on time Hated to do it but I had to survive. Idk that anyone could have been more terrified of having the surgery and not having the surgery. I had 2 nurses that seemed to think sarcasm was a superpower and when one person came everyone came. I couldn't take meds, eat,walk,and give blood all at the same time. Lots of disorganization. I finally had a walker brought to my room so I could walk when I wanted. I'm paying them so they needed to be reminded while I'm trying to do what I needed to do and be a good patient but there is a limit With my gripe over what I decided was I knew before surgery that I would get processed and 6 days is a small price to pay so I don't have to be n pain the rest of my life and possiblibly when I'm not young enough to defend myself be at those people's mercy Yesterday was my 1month post surgery. 74 right lumbar curve L3 crushing nerves in right leg. Now 16 degrees When I first came home I couldn't get up my stairs and I fell. Now I climb them 3 times a day. Off the pain meds last week. Ribs r very very sore, neck sore from laying so much, sitting up more everyday and got ok to ride my bike. Fused T2 to L4. The 6 days I had to put up with the snappy attitudes is nothing compared to my long term health. Which is better everyday. Not as fast as I want but aspricreme helps the soreness. Walking a lot and using my giant yoga ball to sit on and walking a mile at a time once a week with shorter in between. I breath different but better. Tired can't last forever Don't let someone's attitude for a short amount of time cheat you out of doing what is best for you long range. Just get a plan of attack to deal with the processing and get what you need. Easier said than done when u r n pain and you medicated. Lol. One male nurse was so nasty that I think if he had been close enough I had enough pain meds at the time I would have just taken him down. .

    Comment


    • #3
      Swollowing

      I also had the swollowing issues. I have to have stretches every so often because my esophagus is so small. After surgery that has improved. Still need one more stretch but my digestive dr said I probably won't have that issue after this next surgery because I'm no longer twisted. If your pt isn't working for you. Ask for someone different. You and your insurance pay for that service don't keep someone who isn't helping u. This is too important. I think terrified only goes away once everything is over and u can feel the difference.

      Comment


      • #4
        Hi...

        I often tell our patients to expect the feeling that they'd made the wrong decision, for at least the first 4-6 weeks postop. For some, it's a few weeks. For others it can be forever. I think your post is important. It's relatively ease to make the decision to have a big surgery, but it's quite another thing to actually live through it. I hope you start feeling better soon. Hang in there.

        Regards,
        Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #5
          hi Kayde, Hi LInda

          thx for sharing ur experiences- Kayde, don't u weigh somewhere like a whopping 110 lbs soaking wet? I can see you taking down that male nurse - too funny! BUt I Honestly DO understand ur level of frustration, especailly about home meds. I couldn't get a morphine pain pump - because I didn't bring my CPAP machine w/ me - so I was stuck on Dilauded, which sedated me but did not relieve the pain- it also gave me a headache- but they insisted all I could have was dialuded. and - since i was asleep- I "must" be free of pain, right? How ignorant. I know they don't teach that in nursing schools, yet medical staff still have this preconeived notion- since oyu're asleep, u must be resting, right> HA!

          Also had to fight for my fiber capsules, my husband was able to smuggle them into me... geez, feel like a ccriminal for -- constipation meds? LOL if it wasn't so sad!...

          well I just returned from a walk outside, almost felt like asking hubby to bring hte car but I made it home, may have ot walk less distance tomorrow. didn't take any pain pills all day, I'm sore across the back of neck, I hurt in my shoulders and upper back but this is my norm, nothing i'm not used to. I will take a percocet soon, I did get a new RX for real percocet, praise God for that!

          Linda, that's funny you should mention what u did: I often wondered, if - after going thru with scoli correction- if I would feeel like I was in some halloween costume and I couldn't get out of it.- if i would feel all weird and stiff.... but I can't imagine wanting my crooked body back again.
          this hospital uses some funky beds - very narrow, less than 36 inches across, and the matress continually moves- to prevent pressure sores- it also unnerves you and I thought it felt weird. THe shower was so tiny, I could not lift my arms without both elbows digging into the shower walls- so , no , i did not shower it looked like an upright coffin. IT was liek the cruise ship of hopsital rooms... very tiny spaces. yeh, w/ me carrying a drain, ted hose on my legs, 2 IVs and an ART line... oxygen ... it was a little crowded in there.

          well it's over now I need to heal. Dr Geck wants to fuse T2- L4 isn't that your levels, Kayde? you're doing great, to be off pain meds so soon!
          And Linda, yes, I will still need to prepare my house- both my husband and I recognize that this house is way too cluttered for post-op living,
          thank u for sharing your expeirences, and your insights! one day ata time... <smile>
          57 years old.
          thoracic curve 68 degrees
          lumbar-sacral curve +/- 41 degrees
          Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
          Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
          THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

          Comment


          • #6
            Scooter

            Surgeries are a wakeup call sometimes. Patients that are new don’t know about these things and in the beginning it can be pretty scary. When they woke me up in ICU after a few days, I was tied down and instantly turned into Frankenstein....I was pretty pissed off, not at them, they were just in the way, I guess. I was warned by my surgeon that after he got done with me, it would feel like I was hit by a train. Not a truck, a train.

            Recovery for the first few weeks is tough, after all, your in a “survival mode”. After you get used to the feelings and recover and heal some, things really do get better. As a scoliosis patient, you need to expect that things will be rough, and in the end you will realize that you really did make it and will have a different view.

            I have never regretted my surgeries. Not for one second. I knew up front that I would go through a tough recovery, and I always knew it was the price I had to pay. I’m fine and dandy now.

            Hang in there, one day at a time.
            Ed
            49 yr old male, now 63, the new 64...
            Pre surgery curves T70,L70
            ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
            Dr Brett Menmuir St Marys Hospital Reno,Nevada

            Bending and twisting pics after full fusion
            http://www.scoliosis.org/forum/showt...on.&highlight=

            My x-rays
            http://www.scoliosis.org/forum/attac...2&d=1228779214

            http://www.scoliosis.org/forum/attac...3&d=1228779258

            Comment


            • #7
              I weighed 128 at the time of surgery. And to my advantage he was only about 5'1 and pobably weighed less than me. Besides where u hit is a lot of times more important on how hard. Equalizers come in handy. Lol. Recovery is what I dreaded the most. Pain meds just made me sicker and no way to stay ahead of the constipation. I told my dr I would have been better off with shots of whiskey. It's been a rough road no lie. And for 3 months before I did nothing but throw things away and baby proofed my house to make things easier. Still rough. The mattress topper and the satin sheets and pj's were 2 of the best suggestions and idk what I would have done without them. That is the exact fusion I have. Was really hard since that was a last minute change from L2. I went to the dr Wednesday for my one month follow up. He was pleased said I still have the fluid around the scar but was surprised the nerves were healing as quickly. Just trying to stay moving. Last week was the week I wondered what I had done and if I made the right decision and wondering when the pain med withdrawals would end. This week has been better. Seri strips off. The last nurse came to the house. I can do new exercises - ribs still feel like I was kicked by a mule most of the time. But I have been able to sit up so things are better. The horrible right hip pain has not returned and I'm sure I have done the right thing. Won't b able to bend over quite as far as before but I'm sure part of that is just because it's been so soon. I can still paint my toenails but can't quite bend my neck over to see my stomach but I have seen that because I was so crooked I was closer to all that so really I'm about where everyone else is. I think from now on I may have to get a bikini wax or nair I don't think I can see who to do that as well either. Lol. Thinking maybe a good reason to get laser hair removal. Lol. I can say that shaving my armpit on the side that the shoulder rolled forward was much more challenging than it is now. Silly thing but it made me smile that I didn't have to maneuver to get that done. . I'm sure everyone wonders if they made the right decision long term it's easier to stay with the devil you know. I seriously wondered even the day of surgery when they were getting me prepared if I would back out. Told myself until I passed out I still had time to say no. Lol. I believe if I can make it you can make it. .

              Comment


              • #8
                It's important to pick the right hospital

                Sorry to hear several of you had a horrible hospital experience.

                Partially why we choose the surgeon we did (he was one recommended by one of the forum members) is the hospital had a brand new dedicated spinal surgery wing. Everyone was great! I had a private room. The room had wifi, so my husband was happy sitting with me in the room...even a couch so he could take a nap.

                If I said I was in pain, they responded immediately.

                My problem is I was low on blood and I couldn't really walk the first day. After the first unit of blood, I did okay, even better after second unit. My only problem with the hospital is they didn't have any openings in the rehap floor when I was ready to move up there.

                When looking for a surgery hospital, check around and get feedback from other patients before selecting the hospital.
                Discovered scoliosis when 15 years old.
                Wore Milwaulkee Brace for 1.5 years.
                Top curve 85 degrees, bottom curve 60 degrees

                Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
                Dr. Charles Edwards, II
                The Spine Center at Mercy Hospital in Baltimore, MD
                Before and after xrays:
                http://www.valley-designs.com/myspine

                Comment


                • #9
                  no choice of hospital

                  Hi DJkinked- well, I don't think I could survive the travel to Baltimore, altho' I love the east coast- but driving 4 hrs by car was jarring enough. I went to 4 different surgeons in the past 5 yrs. and this surgeon gave me confidence, he is laid-back yet competent- and he is a big man= I felt I needed someone strong enough to tackle my old bones. PLus- when I spoke w/ him about hte surgery- my mind was completely focused on what he was saying, I wasn't racing to think of new questions, or "what if's" - so that was a new experience that sort of reassured me - this is the surgeon for me Now, as for HIM- well I am sure he has easier patients than "know -it'all " nurses who constantly complain... but some of my knowledge is from work, a lot is from this forum. Face it, who knows better than someone who has been down that path?

                  As for the hospital: this is the only hospital that my surgeon uses. I told him I did not like this hopsital, he could see how tiny these beds are- but I guess they want you to get out and walk. The ICU was great, seriously, I would not mind staying there for 5 or 6 days, but the ortho floor? Bleah!

                  TiEd, thx as always for ur words of wisdom, I know I've come full circle from my initial revulsion at the thought of scoli surgery. One of the ortho surgeons I worked with told me NOT to get scoli surgery - his words were "you're not seriously considering this, are you? That is horrific surgery!"

                  Yes, he was a shoulder surgeon, not a spinal surgeon. But that dissuaded me for some time. the pain wears you down, that's sort of why I was relieved when my surgeon recommended the Cspine fusion first- sort of a dry run for the scoli surgery. But yes, this is a wake up call. I cannot live in this house after scoli surgery! I must clear the clutter!!! thinking about getting a hospital bed for a few wweeks, considering how rough it is to sleep now, with a 3 level fusion.

                  Kayde, since ur so close out of surgery, and the same levels I would have, I have been reading all ur posts. It's great that you are not using narcotics anymore than absolutely necessary- that will be my goal, as well as walking. this sitting around the house is driving me crzy!

                  ok more later, thx for listening to me whine, I feel so darn helpless right now.... try to enjoy the Sunday!! <smile>
                  57 years old.
                  thoracic curve 68 degrees
                  lumbar-sacral curve +/- 41 degrees
                  Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
                  Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
                  THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

                  Comment


                  • #10
                    Hello,

                    I am fused from C2 to my pelvis. I am sleeping in a hospital bed , at home, that makes it so easy to get comfortable. I think that you might find the hospital bed
                    comfortable as well
                    Melissa

                    Fused from C2 - sacrum 7/2011

                    April 21, 2020- another broken rod surgery

                    Comment


                    • #11
                      Sitting or should I say laying around the house is awful. I rsised 5 kids and worked high stress jobs with long hours. Love to have hobbies and had a list of all the things I was going to do that I haven't had time cuz I watch little tv. Well I've done nothing I intended. 500 mg Tylenol is really all I have needed. I'm sore and there is some discomfort but not worth the constipation and lack of appetite. I sort of looked at getting off as survival mode. Me and ensure are best friends. . Idk where u r crooked by mine was all right sided. Which of course made that side carry all my weight. I knew when I went to the gym my left legs didn't carry as much weight and I couldn't do as many sets as right. Now I know the left side really carried less weight than I thought. The soreness is the most bothersome cuz u have to breath and it moves that side. I started using ice packs(not my fav btw) on the sore sides and has helped. Massaging lightly the left hip and realized I hadn't taken my multivitamin and vitamin a since surgery. Idk if it's true but theyvsay it helps muscles heal. Dr says 5 to 7 weeks for muscles to heal. Get u an electric throw blanket u can lay on for heat. Helped me a bunch when I first got home. Bend your legs as much as u can and lift your butt off the bed. Helps get the tingled in your butt and legs to o away cuz u get blood there. Mine went away n 4 days. 2 more weeks I can get into hot bath. Can't wait. It's rough but plan and back up plan. I bought I nice walker off amazon with wheels a seat and a basket. Worth the 50 bucks when I first started walking and going to dr visits. If u get tired u have an instant seat. Whatever side has the curvevwill be the opposite side hurt. Tiger balm and aspricreme helps. I actually had a half a glass of wine yesterday and it was the most relaxed I have felt before surgery. The waiting is the hardest. I can't concentrate to read for long periods of time and my audiobooks put me to sleep. Lol. iPad games have been good. I get different pains now everyday but they don't last long and if I drag myself out of bed they go awayvquickly. Taking total b vitamins with has seemed to help with stamina. Sat up in my recliner 4 hours yesterday. Was a huge thing for me. Actually watched an entire movie without sleeping. My next small goal is to try to go tobthe zoo and useca wheel chair. Got the memory foam side sleep pillow to use whie sitting. I take it everywhere. It's good. Maybe a walk on the beach by Christmas. When I walk I try to swing my arms to get the numb back to heal. That's annoying. Showering and going to the dr in the same morning is a bad idea btw. Just exhausts u for 2 days. I ordered a dress today I would have never worn before surgery. Just would have been too crooked. Most of everyone who knows me has been shocked you could barely tell from the front I was crooked and isles sweaters over clothes or things that hid the back as much as possible. And I had my suits altered to take n the side that was loose so my friends and coworkers have been surprised. That part has been good. I don't have to hide and my clothes have been let back out and they seem to fit. I actually have a waist again. The ribs moving I actually have 3 inches smaller in my waist just do to position. Gaining my weight back now that im not living on jello, cottage cheese and pain pills. Hospital will just suck but in about 4 weeks you start of come out of the stupor from the pain pills quit crying over.....well sometimes u don't even know just cuz u r tired and you begin to see how much better u breath and your heartburn goes away and u begin to think u can make it. More days than u think u can't. On those days I just take a vellum and sleep it off. I know you can do it-if I can u can. Remember u can say no all the way up to when the anestethia kicks in . But deep down u know u have to stop the collapse of your body. There no easy answer and I'm sure everyone who has this goes through the why me. The chances are small why couldn't it have been someone else so I don't have to deal with it. But I have decided it made me a more empathetic person that has served me well over the years. Those of us who do this r strong and can do anything. I read these posts and I am moved and touched by everyone's strength. Helps keep me going.

                      Comment


                      • #12
                        scooter950: As someone who has has 2 posterior spinal fusions (see sig for details), i can honestly tell you that it IS a horrific first few days - not weeks or months, but days...it DOES get better, i promise you, or would never have considered the revision in '95. The first few hours in ICU are hard, to say the least...no joke, when my parents came to my bedside as i was just coming-to, my Mom leaned over and asked what she could get for me...i uttered "a gun" - it was THAT bad...but once the pain meds were flowing, it was much more tolerable...i was only 20 and 22 when i had those surgeries - - now at 39, i'm facing my 3rd and 4th surgeries in just two months. I am absolutely terrified and i ask myself all the time if i'm doing the right thing...and did i choose the right hospital with the right doctor...i am in the same boat as you in that my surgeon only operates in one hospital, and although it's a nationally recognized level 1 trauma center it doesn't necessarily have the best patient reviews. One of my patients was telling me during her therapy session just last week that when her Dad went in for hip replacement surgery last year at this hospital, he ended up contracting MRSA and spent 2 weeks in ICU because he developed a subsequent lung infection...gggrrreaattt i thought to myself. So believe me, we are struggling together with these decisions! I will tell you (like titaniumed did), i don't regret having my 2 previous scoliosis surgeries at all though. I had a wonderful surgeon and although my hospital experience was so-so it both, i ended up with a an extremely positive outcome. I went on to get my masters in OT after my 2nd surgery b/c i had such a positive experience with the OT's who gave me therapy that i decided to go into that field. I eventually married and have 2young kids - 2 and 4 yrs old - gave birth (no meds, no epidural obviously!) and it's only been the last 5 years or so that things have gone down hill (flatback from those darn harrington rods that were so "state of the art" 18 yrs ago!) - my L5-S1 disc is a shred of a disc and my disc are compressing and slipping all over the place! So i'm a mess too I wish you the best as you make your decision - but think it over, ALOT - and talk about it - here, with friends, at work, with whoever will listen, ALOT - it's a big decision...but if you make it for the right reasons and with the right intentions and have realistic expectations on what the outcome will be, hopefully you (and ME) won't go wrong. We're all here for you!
                        1993/1995: PSF w/ Harrington rods T3-L4
                        Jan. 24, 2012: ALIF of L4-L5, L5-S1 w/ cage spacer and BMP
                        Jan. 31, 2012: PLIF of L1-S1 w/ pelvic anchors
                        Scheduled Nov.15, 2012: Fusion T2-S1 w/ pelvic anchors to fix T12 fracture
                        http://i31.photobucket.com/albums/c3...ot/myback2.jpg - BEFORE
                        http://i31.photobucket.com/albums/c3...CT2342x406.jpg - AFTER
                        http://i31.photobucket.com/albums/c3...CT1410x229.jpg - AFTER
                        www.jerseyot.blogspot.com

                        Comment


                        • #13
                          Hi Jersey!

                          Say, i'm from Jersey too! Born and raised, then left home and joined the Air Force in 1980 - now, settled in Texas. But I vacation at cape May point- people ask me, Why would you go to jersey on a vacation? they have no idea... its a cultural experience! the FOOD! the SHORE! the ATTITUDE! the SHOPPING! OMGosh I am homesick!

                          Oh OK back to reality, back to scoliosis... yuch... yes, i will still proceed with the scoli surgery, I was so afraid to have my Cspine fused, I was so fearful of all the complications- now I just need to accept the fact that I had surgery, and I must make myself walk, shower, and rest. I have no self discipline anymore, that's my problem- I need to establish a recuparation schedule, to wake up at a set time, force myself to shower ( I love standing in the hot water but I HATE washing my hair, I hate the pain, the backache, and then - to dry my hair, ugh!) and force myself to walk the dogs. I'm not doing that now, it's been one week since m surgery - I will begin tomorrow.

                          After my scoli surgery, I will get a hospital bed, MAbeckoff, I think it will be better for sleeping, it is hard to sleep so close to my husband- I feel like I wake him, I toss & turn so much now. more to follow- g'nite for now, Jamie in Tx.
                          57 years old.
                          thoracic curve 68 degrees
                          lumbar-sacral curve +/- 41 degrees
                          Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
                          Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
                          THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

                          Comment


                          • #14
                            hi Jamie
                            well, since your were once in the Air Force, you know you have the
                            discipline within you....just have to find it again...
                            the military is so very disciplined and regimented....
                            if you put your mind to it, you should be on a set schedule in no time at all...
                            bet your dog will be happy with those walks, too!

                            feel better soon...
                            jess...and Sparky

                            Comment


                            • #15
                              I think it's important for folks to know that not everyone wakes up from surgery in horrendous pain. I was incredibly comfortable for the most part, when I was in the hospital, even after being taken off all narcotics. My discomfort really didn't rear it's ugly head until I started walking. And, looking back now, it wasn't fun, but it wasn't the worst thing I've ever been through.

                              Before my first surgery, a friend told me that when I woke up from surgery, my back would be so incredibly painful, that it would feel like I was on fire. That caused me to have nightmares for quite awhile, and I finally started having to take tranquilizers.

                              I think it's important that we know that it's not going to be easy, but that the pain will get managed, and it probably won't be as bad as our imaginations might make it.

                              --Linda
                              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                              ---------------------------------------------------------------------------------------------------------------------------------------------------
                              Surgery 2/10/93 A/P fusion T4-L3
                              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                              Comment

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