Fifa's Surgery 11/10/14 with Dr. Buchowski

[jackieg412]

It is amazing that modesty goes right out the window when you are in that much pain. My daughter brought a friend with her[male) and I kept moving the covers and she kept covering me up. I just didn't care. In my first hospital stay for the big surgery my pain was not controlled well. My doctor had a colleague check on me over the weekend and he messed everything up. While he was a spine Dr I don't think he had a clue of how much a total spine fusion really is more major then a single level. My doctor straightened things out on Monday when he came back.

[titaniumed]

With all the hoses they had in me and the open back gown, and a little wind, I pretty sure there was some flash happening in the hallway....a little low speed trolling you might say...

Now, with some of the young energetic male nursing assistants running around these days, guys need flame retardant for survival!

“Calm down Bucko, I’m going to make it back to my room just fine.” “Don’t make me crack you over the head with my walker”.

(Scoliosis forum humor)

Gayle is right, my surgeon and the people at the hospital questioned me a few times verifying that my meds were at home. Written orders stated that I was NOT to bring my meds to the hospital, get them a few days before surgery, and leave them at home. Gayle, you must be tough! I would have died.

Another thing about prescriptions, if you buy them online, and forget about shipping time and run out before the meds arrive, your in trouble. Go to Emergency. This happened to my neighbor on Paxil, it was a complete meltdown. Antidepressant withdrawal is supposed to be one of the worst.

Boy, this thread is covering all the bases....

Ed

[jackieg412]

Yes ed and while covering all bases we are talking about being uncovered ourselves!

[PeggyS]

Uh-oh, I hadn't thought too much about flashing. I've been more concerned about my very off-key singing, as I listen to my iPod. Hmmm . . . Maybe that won't be so terrible!

[fifa]

Hi FIFA! Welcome to the forum. I too had surgery in COMO and St. Louis. I live a couple hours from COMO and actually travel that direction 1-3 times a week.

The hotel connected to Barnes is great. Makes getting around easy and the staff is personable. I didn't have my husband stay in the room over night but he was there till late which is good because they really help with the pain control when you are unable to really address it. He knew the signs of me squeezing my thumbs when it got unbearable (which I didn't realize I did) and was able to address the situation.

Good luck! You will be in good hand.

Tamena

Hi, Tamena!

I'm sorry I didn't respond sooner. Really been going through it the last couple of weeks. I saw on the forum that you had had surgery here in CoMo - I had a different surgeon. LOL I work at the U here and have technically for 16 years - did another 9 years at CRH before the U bought it. I'm glad to know about your positive experience with the hotel. They have been very nice to us by phone. We'll be checking it out when I go for my myelogram next week, which honestly, I'm dreading nearly as much as I'm dreading the surgery itself. The nurse tells me (and it is in my paperwork, too!) that "myelograms have changed so much in the last ten years." Well, it's been ten years since I've had one, so I pray this is true. My lumbar spine is so jacked up that they can't get a steroid injection in without a tremendous amount of pain (the last one of those was maybe four years ago). My last myelogram was about 10-11 years ago and I got the spinal headache, the blood patch, and everything else. I swore I would never have another one and was really unhappy that Dr. B needed this. Thought I might "med up" before the procedure, but then I read that I'm not supposed to do that, either, because it might interfere with the dye! Girl just can't catch a break these days. LOL

Your tap-dancing pics give me hope and I'm glad you've shared them. Thank you for responding to me. I'll try to do better with my responses in the future. I figure you all know what I'm going through right now and you understand. Thanks again - hope you are well.

Fifa

[fifa]

Hi Fifa,

I am fused T6 to Sacrum and I don't have many limitations. I don't need any toilet aid, I can swim and I do it every weekend, but I only do breast stroke. Any other type of swimming is not comfortable for me, just feels odd. But I was swimming using breast stroke only even before the surgery, so may be that's just my habit.

I never gardened, so can't comment on that, but think I would be able to do it if I wanted to. I quit doing yoga. My surgeon told me that I can do yoga, but modified. Honestly, if I wanted to go to my old yoga class, I'd have to modify A LOT and it would not worth it. I won't be able to do much. But I am not heart broken about it. There are many other things that I can do now and could not do before the surgery. Like standing and walking for as long as I want. Before, all I could stomach was 5 min of standing and I needed to sit down. After half-an-hour of walking my lower back was hurting. Now I can stand in the kitchen and cook without any pain, go to museums and cocktail parties and enjoy myself, travel and walk for hours and hours until my feet (not back!) get tired. We are going to Maui for Thanksgiving and I booked a sunrise tour to Haleakala (a dormant volcano) on a windy and bumpy road and a helicopter tour over west Maui and Molokai because I feel confident in my ability to handle bumpy roads and getting in and out of a helicopter.

So, am I sad about not being able to do yoga? No!

I had my surgery at UCSF and my family was with me most of the time. I was very lucky to have them there. But some people here did it solo. You need to prepare your husband and family to what is coming because people generally don't understand full implications of the early recovery. Educate them. They need to be ready mentally too.

Good luck to you!

Hi, Irina -

Thank you for this reply - I appreciate it. I agree about needing to prepare people and have done that as best as I can with those closest to me. As someone else on this forum mentioned, when you tell people you are going to have back surgery, their response is that they have a herniated disk or know someone with back trouble and you'll be just fine!!! I had been trying to explain that this was different, but I've sort of stopped trying. I just tell them that this is a seven or eight hour surgery, so it's probably a little different than what they had. LOL

I'm leaning toward flying solo as much as possible. There are things my husband doesn't need to see. I have asked him, though, to kindly take a picture of my face as soon as he can postop. He has reluctantly agreed. It is hard for me when people talk about things that happened that I can't remember - that is probably weird. I just want to know.

My parents are in their late 70s/early 80s, and the drive and all the stress won't be good for them, so I haven't told them when I'm going. They just know surgery is scheduled for November and I'll have hubby keep them up to date after it is over. They just decided to move from their home of 30+ years into an apartment, so thankfully, they will be busy and will have enough to worry about. My best girlfriend, who also is my lawyer, will be spending some time with me. She and hubby will work that out. Maybe some of you can relate - I only want positive people around me, the people who won't judge me or put all of my daily progress/transgressions on their Facebook pages! LOL I have lots of friends and lots of family, but very few people I would trust with my life, and these two people are the best people I know! A lot of my friends/family just LOVE the drama, and I can't take it. I want a stress-free recovery zone so I can focus on my own needs and not have any pessimists around.

I guess if I can't garden, it won't be the end of the world, but I'm pretty upset about the yoga because it had been such a huge part of my life up until the last couple of years. I still do it, but I'm very limited (can't do any standing poses at all). The meditation and the breathing has truly been a lifesaver. I guess I will find a way down the road, but it has just been one of those things that has haunted me since two years ago when Dr. B told me how extensive the surgery would be. It sounds stupid when I write this, but it is true. You are right - postop, I'll focus on being able to stand and walk (perchance to run) and let go of those things I can no longer do. I've told people here that my mindset hasn't been right until lately - I have been grieving the things I would lose rather than being grateful for what I had. I'm still struggling some days, but I'm getting there.

Thanks again for your response. I hope you are well! If you have any other suggestions or advice, I would be very happy to hear!

Take care,
Fifa

[fifa]

I've been concerned about the amount of time I'll need my husband at the hospital, too. He has mobility issues left over from all of his surgeries. I'm hoping to go to rehab for a week, but it sounds like it's difficult to qualify. I'm supposed to stay in St. Louis til my 1st check up - 4 weeks post-op.

The myleogram was stressful because the dr & tech spent a lot of time discussing where to put the needle! I didn't develop a headache - thank goodness b/c I was all over the campus for tests.

I'm so glad to know someone else has the same doctor! Good luck.

Hi again, Peggy!

I'm glad your myelogram went well and that you didn't get the headache. I asked and asked about that - about how they could do a myelogram plus all the preop/postop stuff all in the same day! The last one I had, I sat in a recliner for an hour after the procedure and drank as much caffeine as I could drink. I went home and stayed flat on their orders. The headache started that night. It took two days before they did the blood patch, which also was terrible. Like you, they always have a hard time deciding where to put the needle.

We were told initially two years ago that I would be in the hospital for a week to ten days and then two weeks in (probably) outpatient rehab, so to plan to spend three weeks in St. Louis. At our last visit, I was told they would try to discharge me on Friday (surgery is on a Monday) and that I could spend the weekend at the hotel if I was insecure about going home. Having worked in a hospital as long as I have, I know they typically don't discharge on weekends, especially when home health and stuff like that needs to be arranged. I was surprised that someone could have such extensive surgery on a Monday and get booted on a Friday, but that is what I'm being told. I spoke with Megan on Tuesday this week, and she said they would discharge on a weekend only if things were already set up, and that my discharge was largely based on my level of pain control and a few other things (eating/eliminating/activities of daily living). If I'm up to it, I'll not go to the hotel at all and just come home. I can see all three hospitals in Columbia from my deck, albeit in the distance, so I will opt to come home ASAP and if I have problems, I'll go to one of the ERs here. My insurance won't pay for inpatient rehab.

When you say you were all over campus, did you have to do a lot of walking? That is going to be hard for me. I'm sure they have wheelchairs available. I'll probably need one if there is a lot of walking involved. I can only stand for five or six minutes at a time. I just had pulmonary functions done on Tuesday. One test was within normal limits but the other two (or three) came back abnormal. The tech wasn't supposed to tell me anything, but she did say there was nothing that would preclude me from having surgery, so that is good news. However, I know that my right lung is really restricted since the ribs have moved so much. I gasp just trying to get from the couch to the bathroom and get short of breath very easily. My abdominals are the only thing holding me upright, so I kind of hold my breath while I'm on my feet, which doesn't help matters much. We'll get the formal results back soon, but I know they won't be great. I have a stress test on Monday, then the myelogram on Wednesday. I'm also going to the dentist for an early cleaning. Need a haircut and then I think I'll be ready. Had mammograms today - standing for those darn near killed me.

Will talk to you more later. I'm trying to catch up from not having posted for over a week and am trying to answer everyone. I'm glad you are going to stay at the hotel for a month. That's just smart! We'll be checking it out on Wednesday.

Sending all prayers and many hugs to you!

Fifa

[fifa]

It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

My biggest concerns right now are, in order...
1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

Hi Fifa,

I had surgery about 12 weeks ago at HSS (T9-sacrum) and I shared many of your fears/concerns. Immediately post op I was in PACU where visiting hours are quite limited and thankfully they manage your pain beautifully. While I remember being extremely. "Out of it" I was very cognizant of when my husband and sister were with me. Seeing me immediately after surgery was upsetting to both of them. My face was extremely swollen from the 6 hours I spent face down on the operating table. The swelling took about 2 days to go away.

From PACU I went to a step down unit for another 24 hours. My husband stayed with me most of the time until visitng hours were over. No need for private nurses in either PACU or step down. Then it was off to a regular room. Again, no need for a private nurse but having my husband there to watch out for me and comfort me was invaluable.

As far as how I was after surgery I truthfully questioned my decision on and off for the first three wweks or so. The pain killers make you a bit nuts and the fear if breaking something for me was big. I would say after week 5 I felt much more in control, stronger mentally and physically and was off all plain meds.

If you can't do a lot of exercise before surgery I really recommend at least working on your legs. Having strong legs will make life during recovery sooooooo much easier.

I may not be the best person to tell you what you can and can't do because I am likely doing way too much and am praying I don't wind up paying for it later. Assuming there are no big surprises down the road for me the surgery was the lesser of two evils. No doubt my future was not going to be an easy one if I did nothing. It sounds like you're in a similar spot.

Best of luck to you.

Risë

Hi, Rise!

Thanks for your reply! I have been trying to work on my legs, but it is hard (don't have to tell you that - LOL). I'm doing squats at the kitchen sink for maybe three or four minutes as many times per day as I can (not as many as I would like). Yes, I'm in a very similar spot to yours. Glad to hear you are doing well! I'm anxious for an update.

I know the outcome is going to be worth it, but for the past week or so, I've been getting hit with a lot of unexpected stuff. I'm kind of a control freak, and the fear of the unknown has been overwhelming at times. I know you and everyone else here can relate. I have had a really tiny back surgery 30 years ago, but I remember that recovery quite well and know this one will be longer and more painful. My husband is wonderful and quite soft-hearted...he can't stand to see anyone suffer, especially his family. I'm trying to spare him that but I want him with me desperately. So, I've been kind of walking a tightrope. My bestie is going to come with me, too, so they can trade off and he can take a break when things get ugly. Just having this plan in place has helped quite a lot. I was going to go solo. Really want to be able to cry when I want, holler, flash the nurses, etc. I know it will all work out.

How is your pain level now? Are you at a stage at 12 weeks where you are glad you had the surgery? I had a phone call with my doctor's assistant this week. She told me "you're going to hate us when you wake up, and you're going to still be hating us weeks later." She is really wonderful to talk to and very honest. We laughed on the phone and I cried a little, too, especially when she told me how much the BMP would cost. She also dropped another bombshell - she said the doctor would recommend that I be off work for three months. I only have enough paid time off for two months, and I've worked really hard building up comp time to cover an extra week. So, this week has been really stressful with all the appointments, trying to work and make up the time that I've missed (rather than use vacation/sick) from all the appointments. I told the assistant that it is really a LOT to get prepared for this, and she agreed. Some days it is more than I think I can bear.

I'm not looking forward to surgery (or recovery), but I am looking forward to getting it over with and just moving forward. All this prep is sucking the life out of me some days.

Please let me know how you are doing if you can. I'll go looking for your thread as soon as I can. I've been coming home at night this week just completely exhausted.

Take care of yourself!! I'm sending prayers and hugs your way!
Fifa

[fifa]

Well thanks! I never know if I’m crashing and burning on the comedic effort.....Usually no replies means its pretty good.

After watching the Shawshank Redemption recently, at the end Andy and Red mention the words “Get busy living or get busy dying”.
http://www.youtube.com/watch?v=BLXOcyDQKtc

It was something that kind of hit home with my decision at the end....The risk had to happen no matter what and yes, I also made it to Zihuatanejo.....

I didn’t want anyone showing up at the hospital while I was in intensive care. My surgeon kept me out because he told me the pain would be a 10 with all the work I was having done with the anterior and all....but people came anyway and I never knew they showed up because the lights were on but nobody was home. I think that was the ketamine..... I lost around 5 days of mental retention. I wonder if that’s what dementia is like? I was on the strongest meds they had and was knocked out every 4 hours for 9 days. This isn’t the norm as far as immediate recoveries is concerned, since I have followed many others testimonials. Some of the younger folks are texting hours later. I couldn’t even find my phone for days or work it because my shoulder and arm were also broken (shattered humeral head) from a bad ski crash 10 days before my spine surgeries. I would be lying if I said it didn’t hurt.

People are different as far as support is concerned. I am single and well, I did have some issues with the pain and all that scoliosis has to offer, a sort of 38 yr pinnacle arose after a few days when the brain started working again. I was very upset and pretty mad. Not mad at anybody......just mad as hell. Maybe I was justified after holding it all in over the years, but there was this graveyard nurse that straightened me out with a little bit of counseling on her part. The strong meds triggered the “why” question once again. It had been many years since I re-visited that era of my teenage years. Holding it in? or whatever. I don’t know. The males of the forums don’t openly talk about these sorts of things on the scoliosis forums. I kinda like to lick my wounds privately.....

You feel tall and stiff when you first stand up....I grew 4 inches and the people that were slightly taller than me where now looking up at me. It was actually a riot seeing their faces....he he. There should be no bending, no lifting and no twisting for awhile. Was I going to take that chance? No way Jose, I was a good boy! I didn’t lift more than a dinner plate for 5 or 6 months. And walked on eggshells for a long time. All movements were done slowly and carefully during the immediate fusing period of 8 months.

Can I garden? I don’t, but many here have reported that they are now pulling weeds. I think this is at the 9 month mark. I think this one was a Lenke study! LMAO. You would think it would be depressing for a surgeon to ask a patient and have them come back cheerfully saying that they were now pulling weeds with their million dollar spines......(smiley face)

Congrats on quitting smoking. It’s a no-no for spine patients, inhibits the fusion process from the constriction of the vessels. Blood flow is pretty important in this whole thing, and bone bleeds....so walking stimulates this whole action, and keeps the guts moving while on opoids during your recovery. It also helps prevent DVT which is bad, bad, bad. I would practice your squats. I did this at the kitchen counter. Up and down, work up to a hundred a day. And diet does work! I used a gall bladder diet and lost 9# month and I wasn’t trying to lose weight. I wouldn’t have made it without the bean soup. Soup is good food.

On the subject of meds. They will give you injectable or IV meds if needed for pain and they do work well, no doubt. The main thing is that you want to be weaned to orals before leaving the hospital. I kind of left early and had to wean home alone and that was tough and couldn’t sleep. You cant sleep when you are in pain.

Ed

Hi, Ed!

Well, your humor must have been great because I haven't posted a reply in over a week! HAHAHAHA

I'm with you. Most days, I just want to disappear to St. Louis and take a cab home when it is all over. I'm happily married, but just prefer to suffer in private. When I had my first back surgery, I heard stories from visitors about my mental state when I woke up from anesthesia and how "crazy" I was on the IV meds. Why people think they need to share this information is beyond me - it's not like I could control myself. I think I was shamed enough at prior surgeries by the same people that this is why I prefer to be alone. Thankfully, I have some great folks in my life who don't judge - they will be bedside. The shamers don't know when I'm scheduled. LOL I've asked for a private room (which costs an extra $88 per day) so I can hopefully just be left alone. The physician's assistant who called me this week said she would put me on the list as no one can spend the night with me (if I need it) if I have a roommate. Private rooms are first come, first served, so they may not have one available, but at least I'm on a list. LOL My mind goes back to high school and being told "that will go on your permanent record!" LOL

Sounds like your surgery was planned and then you had an accident before that, too? Good lord. Now your skiing vid is even more meaningful! I'm impressed.

I guess if I have to hire someone to pull weeds, that won't be the end of the world. Maybe I'll just be one of those women who put pansies in pots and call themselves gardeners (no offense to anyone here who does that, okay?? especially postop scoli surgery!!) You have to understand that I've gardened for my whole life, and when I mean garden, I mean clearing property with a chainsaw, building retaining walls out of rock, hauling mulch and who knows how many tons of dirt and compost, one Miracle-Gro bag at a time! I haven't had problems over the years lifting 40-pound bags of whatever I needed to lift...dirt...birdseed...whatever. So, this is going to be a little different for me from here on out. It's not like I can do those things right now anyway, so I guess if I have to give them up, I will. I'm not going to do ANYTHING to risk blowing this surgery. I sure as heck don't want to have a second one!

You and a couple of other people here have recommended strengthening the legs and I am trying. Don't need to tell anyone here how hard it is when you can't stand up for very long.

I have another question for you specifically if you feel like answering. You say you got angry after surgery, which I quite understand. Were you emotional at all preop? You don't have to answer that if you don't want to, and anyone else reading this, I hope you will chime in. I'm just really kind of running the gamut of emotions right now, and frankly, I think I'm just exhausted. I've been trying to work extra hours, and about three to four hours into my shift, I'm near tears and just want to come home. I wish I could just take a couple of weeks off preop and just focus on me (something I never do). I told my bosses a couple of days ago that I just really don't feel well, which shouldn't be a big shock to anyone. I try really hard to keep things to myself, but the pain is so bad lately that I really can't hide it anymore, and trying to hide it is just exhausting.

Why is it that people like me (us) need a seven or eight hour surgical intervention, but I have yet to obtain any meds???? No one has prescribed anything for me. I'm going to ask next week when I see the doctor. Motrin just isn't getting it done these days.

Take care, Ed, and write more when you can! Sorry it has taken so long for me to respond. It's been a bit of a week!

Thanks for your great advice!
Fifa

[fifa]

Hi Fifa, we all welcome you. It took me several years to post here but I too had followed the forum for awhile. At first you will not want anyone there but I found out ,the hard way that you need someone to watch out for you. As Ed said it is a rough journey at first. I too had a t-10 to pelvis fusion I my first surgery but fractured through t-9 on the sixth day after surgery. I am an avid gardener with my million dollar spine. But I did not do much for the first year. Then I charged everything and avoid getting to the ground as much as possible. I had large planter boxes built. It has been 5 years since my surgery but I still have a limited amount of time I can stay down on the ground. So you learn to modify and get the job done.

Hi, Jackie -

Thanks for your reply! It was very helpful. I know from lots of hospital experience with friends and relatives that every patient needs an advocate, so I've been scared to go it alone, but I really want to go it alone. I know it will be hard. How did you fracture T-9? Were your bones in good shape preop? I'm 51, so hopefully being at the younger end of this surgery will be in my favor, but you just never know. Glad to hear you can still garden, albeit with modifications. I do really well right now on all fours - I can't do any gardening while standing and haven't been able to dig or do much while standing for many years. Your planter boxes sound wonderful - I hadn't thought of that!

Thanks for the warm welcome! I appreciate your response. Please take care and write when you can. I'll try to post more often than I have been able this last week or so. There is just SO MUCH to do with all the preop stuff, home stuff, work stuff, and other issues. I've been a little overwhelmed of late but starting to snap out of it as surgery nears. I'm sure you've been there, too! LOL

Take care!
Fifa

[fifa]

I agree...forget the visitors. First of all, I do not remember any of them. If close family members want to visit just to see if you are alive, fine.....then they can leave quickly.
Being in the hospital is about you....not them.
Susan

Hi, Susan -

I couldn't agree with you more! That's exactly what I've been feeling. I try really hard to make things easier for everyone else in my life, and truly haven't asked anyone for much of anything ever. This is the one time that I'm laying down the law and making it "all about me." It is a foreign concept, truly, and I'm uncomfortable with being so rigid but know it is the right thing for me. I just don't want to have to keep a stiff upper lip for anyone this time. There are only two people who know when I'm having surgery - the rest, I've told "November." If I tell my family the date, my husband will be inundated with texts and calls, and frankly, when he's with me, he needs to be focused on me. There isn't anything anyone else can do for me but pray, and I've told them all that. They seem to understand as I have educated all of them about the enormity of this surgery. I cry pretty easily these days (may be hormonal - maybe my estrogen replacement isn't working...HA!), so everyone has stopped pressuring me and I'm grateful for that! Wow, I hope that doesn't make me sound sound like a jerk on the forum!!! LOL

Thanks for replying - I know you may not feel like it, so I really really appreciate it! I'm sending all prayers and hugs to you (gentle hugs). Write back when you get a chance. I've been following your story since it started here and am "e with you." (smilies)

Fifa

[fifa]

Ed,
I've been wondering how soon I'll want my kindle, phone or iPad -LOL! I feel lost without at least one of them! Sounds like it could be a few days, as I'm not one of the young ones! I know you had much more extensive surgery than most. Your advice, reflections AND sense of humor are so helpful!

Hi, Peggy -

I've been wondering the same thing and have decided not to take anything but my phone so I can communicate with my husband when he isn't with me. I bet those buttons get a whole lot tinier when you're stoned!!!! LOL I have a tendency to "fat finger" on my phone, so I should be sending some REALLY interesting texts.

Take care!
Fifa

[fifa]

Dear Fifa - I will add my 2 cents worth in case that will help you any. I am fused from T2 - L4 and had my surgery when I was 56, 7.5 years ago. The hospital was a little over 2 hours from where we live, so it was a bit of a situation for my husband as well, since he couldn't take the whole time off from work due to the nature of his job. I was at Rush University Medical Center in Chicago, a top notch teaching hospital, and felt confident in their nursing staff and they did not let me down. My husband stayed with me part of the time, but left and went to work part of the time also. I was fine. I did not want any visitors and I did not use any "devices" or watch any TV. I had brought a book as I'm an avid reader, but there was no way I wanted to read. I was fine just laying there. My daughter and son-in-law did come visit and I do remember exactly the split second look on her face of extreme heartbreak when she first saw me. My face had not gotten swollen, although I had warned my family about that after reading David Wolpert's book Scoliosis Surgery: the Definitive Patient's Reference.. Anyway, some of us do fine without having someone there all the time and without anything to do. I think it depends on the person. As for your other main questions, you should not need anyone to help you with your toileting by the time you leave the hospital. The nursing staff will get you going on that soon enough and the occupational therapist will set you up with a wiping tool if it is absolutely necessary. Gardening? Patience. I will see if I can get a gardener to answer that one -- it took her a couple of years. I think at first you can do raised beds ok, but I think she does regular gardening now. I have a 24' round pool, so that limits real swimming! Surely you will hear from someone. As for pilates, I don't do them, but I'm pretty sure I have read some do them but modified. You will not be twisting and bending. I don't remember how long your fusion will be.

Best wishes for a very successful surgery and a new you! I know there is always anxiety going in and then the recovery time is rough. As Rise said, there is a period of time where you might wonder why you went through this. Everyone heals at different rates. Some of us take awhile to recover. I thought I was "done" at one year, was surprised at how much better I was at two, and continued on with getting better and better each year after that. I still have some limitations as I didn't get fused all the way so I would have just that little bit of extra flexibility, so I am limited to weight I can lift (20-25 lbs. is about it) and I can't bend except from the hip or I might cause my lower vertebrae to have problems. And I'm not supposed to twist. I can manage those limitations. I have a wonderful, busy life. Sure beats the old life! I am super happy with how things turned out. (Big smile!)

Miss Susie Bee, you are an inspiration and I thank you for your reply!!!

I'm having a lot of mixed feelings going in, but now they mostly have to do with having so much to do and not enough time to do it. My problem is that I'm trying to "fix" everything I can think of before I go in, and I'm quickly realizing that this will not be possible. I've been working lots of extra hours trying to save up time that I may need, plus all the preop stuff, plus a small family issue (my 80 year old parents have decided to move from their home of 30 years and they live an hour away from me). What I really want to do right now is just relax and start letting go of things. I'm ready to rest and just heal, and am looking forward to that. I'm mostly looking forward to not being as disabled as I am currently. Getting the handicap tag earlier this year just really was a mind blower - having to think of yourself as "disabled" and especially telling other people I needed the tag to begin with was really hard for me. I've never thought of myself as disabled, but I truly can't walk very far without huffing and puffing (right lung is restricted from the rib movement) and my gosh, the PAIN. Having constant pain is simply exhausting. Sorry - I'm sure I don't need to tell anyone HERE about the PAIN! LOL

I'm hearing a common theme about the time period of wondering if you made the right decision. All I know about that is that I can't go on much longer in my current state. If I can get my lung function back and get rid of the rib pain, I'll be pretty happy. The rest of it (getting back the three inches I've lost, being able to walk and stand, etc.) will just be the icing on the cake. Any kind of cosmetic result (lack of rib hump) would be the ice cream on top of the icing on the cake! LOL

I'm not taking any devices, books, or anything else to the hospital except for my phone, and will only use that (if I'm able) to text hubby so he doesn't have to drive for a couple of hours just to find out how I'm doing. If I can text him and tell him I'm fine and he doesn't need to be there, that would be great. Truly, with all the stress leading up to surgery, I think I'll be very happy to just try to rest and be drugged up.

Hope I'm not being naive, but if so, I know you all will set me straight (please do!!)

Thanks for responding. I hope you are doing well!
Fifa

[fifa]

Hi Fifa,

I had my surgery at Barnes Hospital in May 2011. I only have positive things to share with you. My husband and daughter were with me during the day, but they stayed at the Parkway Hotel that is adjacent to the hospital. The hotel provided a discounted rate for the families of Barnes patients. He could park in their private garage and never had to worry about parking throughout my one week stay in the hospital. Having wifi available in my hospital room kept them occupied because I was sleeping most of the time.

Because of the heavy medication, I don't remember every detail of my hospital stay. I do recall that when they first moved me to my room on the orthopedic floor, there was an elderly woman in the other bed of the semi-private room. She had a knee replacement done and was agonizing in pain. Her husband was hard of hearing and had the TV blaring. It probably took less than an hour for them to move her to another room and I never had another patient placed with me for the rest of my stay. They are very attentive to those of us who have extensive spinal fusion surgery. The nursing and PT staff were very caring and responsive to everything that I needed. I live about three hours from St. Louis. So when it was time for me to leave, the nurses made sure that I had just been given the proper medication which made for a non-eventful ride home.

Just be sure and try to be patient during the recovery period. It is easy to be frustrated, but you will reap huge benefits if you follow the game plan of walking and no bending, twisting, and limited lifting during that first year. Although I wish that I could have avoided the surgery, I am glad that I had it done rather than waiting for my curvature to progress even more.

Best of luck to you. Be rest assured that you will be taken care of very well at Barnes.

Donna

Hi, Donna!

I'm very happy to hear your positive reviews of Barnes. Thank you! I've heard nothing but good things about the care there. I was talking to Dr. B's assistant, Megan, and she told me that the nurses there only work in orthopedics and are extremely familiar with the needs of scoliosis patients. That made me very happy. I've been in several hospitals where they pull nurses from other floors, which isn't the best practice in my opinion. Nothing like a nurse yanking on your legs to try to "help" you get up out of bed postop!!! LOL

For a whopping (sarcasm) $88 per day, I can have a private room if I luck out and they have some available when I'm moved out of the ICU. Megan has put me on the list. The private room hopefully will solve a lot of my concerns. Frankly, I couldn't believe that Barnes still had two patients per room. The three hospitals here have all switched to private rooms - maybe for infection control or other Affordable Care Act reasons....???? I'm getting my flu shot tomorrow. Also, Megan said no one could spend the night with me (if I need it) while I have a roommate. Since my husband will be commuting back and forth and we never know about Missouri weather, I would prefer that he be able to stay with me if he needs to. Lastly, I really don't want to have to worry about my bare butt, noises, smells, etc., with a roommate (and his/her bare butt, noises, and smells). LOL If I have to share a room, it won't be the end of the world, but I'm happy to pay the extra money. It's cheaper than the hotel!

I had taken the advice of many on the forum and I asked Megan about my discharge meds. She assured me that I would have my scripts filled before I left the hospital. Many people here have reported that pharmacies don't want to fill (or can't fill) the large quantities prescribed.

We will definitely be following the game plan of walking and no bending/lifting/twisting. If you (or anyone else) has any ideas about the "perfect" vehicle for the ride home, I would love to hear it! Glad to know yours was uneventful. I have a Toyota RAV-4, which is how I'll get home. Hubby prefers to drive his car, but I think it is too low to the ground for me and I probably can't get in or out of it easily. I already have a hard time in my current condition (he has a Nisaan Sentra).

Again, thanks for your reply. If you think of anything else, I would be grateful to hear it! Take care!
Fifa

[fifa]

Fifa - Singer is the one who was (is) the gardener, and she didn't readily have her log-in, so I said I'd post for her. (We talked on facebook.) Her surgery was about when mine was, I'm pretty sure (about 7 years ago or so). It took her about two years before she could garden again. She also had a leg problem while she was healing if my memory serves me correctly. She's not as into it anymore so mostly pulls weeds and plants in existing beds, or just lets them go. I know it was a main concern of her right after her surgery and she worked hard to be able to garden once again. She's just moved on. You can always look back at some of her older posts if you want to.

Thank you for this!! I may have to give it up and am mostly okay with that. Maybe I'll just hire some good-looking shirtless guy to come do the yard work, and I'll lounge in a comfortable chair and watch him! LOL Kind of like having a pool boy, maybe.... ???

Take care!
Fifa