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Thread: Introduction- Surgery in 3 days

  1. #1
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    Smile Introduction- Surgery in 3 days

    Hi all! (essay to follow!)

    My name is Hayley- I'm 21 years old with an 88 degree right thoracic curvature and a 60+ degree left lumbar compensatory curve. I'm heading in for surgery on Monday- feeling extremely nervous, but prepared. I was actually scheduled for this past Wednesday- but was told in the hospital bed, already in my gown, that I had been rescheduled! Needless to say my nerves were pretty shot.

    I've been exercising with foam rollers for about six months to limber up my spine and eating lots of protein and calcium-rich foods. I'm not sure if these measures help at all, but they make me feel more in control.

    I'll be having the surgery at Baylor Plano in Texas with Dr. Michael O'Brien. Originally he had planned to fuse T2-T12, but at my pre-op informed me that the fusion might need to be extended to L2 due to the magnitude of the compensatory curve. Naive internet-researcher that I am, I asked if it would be at all possible to go back to T12 and try to work out my lumbar curve on my own. He said compensatory curves take a while to work themselves out, but I'm willing to put in the work over the next year if it's possible. They all seem very understanding about mobility concerns, and I know with a curve my size I can't really be too picky. It'll be the doc's call in the end. He also recommends a thoracoplasty, which I feel I might as well get since I'll already be laid up. He says I have some of the most significant rib rotation he's seen, and it's unlikely the fusion will be able to correct it fully. Again- very scared about the rib pain- I've never even broken a bone!

    I shouldn't have let it get this bad, but I've been ridiculously afraid of the surgery ever since I was told I needed it at 15 for my then-60 degree curve. Long story short I burst into tears and didn't go back for six years! I really wish now that I had just gone for it when I could have healed much faster, but hindsight is 20/20.

    I'm not in much pain (just a bit after long days), but my self-esteem is low and the doctors guarantee the curve will be over 100 degrees within 5 years. The thing that bothers me most appearance-wise is my left side, which caves in significantly. I also have some shortness of breath, which is more worrying than any cosmetic concerns. I remember twisting once and hearing my lungs wheeze horribly, which was quite frightening.

    My sister and I were thinking of doing a long-term experiment. She has scoliosis too (though not as bad as mine) but she's vehemently opposed to surgery. Since we're physically so similar we're going to compare our musculoskeletal well-being throughout the years and document it for people who want to deduce long term outcomes of fusion vs. exercise.

    I still get that "what if?" feeling, that if I wait a little longer they'll come out with something revolutionary, or someone will come up with an awesome set of exercises for even the largest curves. Fusion seems to be my best bet right now though, and at some point you just have to bite the bullet and make the decision.

    I did have a few questions about the pain for those who have gone through it:
    Afterwards, in the hospital, is the fact that you're in pain all you can think about? Would I be able to watch some TV or play a game of cards, or am I going to be too sore for distractions?

    Would I be able to do some light work on the computer after a few weeks? Or am I just going to want to lie there like a vegetable?

    If you never take painkillers, will you find them significantly more helpful in the hospital, or is it about the same no matter what?

    Anyway, it's great to be able to talk to others about this, and I hope to post a few updates. I've been following some of your experiences here and they've really helped me in making the decision and knowing what to expect during recovery.

  2. #2
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    Default Re: Introduction- Surgery in 3 days

    My son hasn't had surgery, so I can't help with any post-surgery question, but I did want to reassure you about recovery. 21 is still very young, and you're likely to heal at about the same rate as a teenager, so you haven't lost much by waiting. Even 30 year olds seem to heal pretty quickly. It's just us "old folk" who take a long time to heal.

  3. #3
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by hduggan View Post
    My son hasn't had surgery, so I can't help with any post-surgery question, but I did want to reassure you about recovery. 21 is still very young, and you're likely to heal at about the same rate as a teenager, so you haven't lost much by waiting. Even 30 year olds seem to heal pretty quickly. It's just us "old folk" who take a long time to heal.
    That is very reassuring! The reading material they gave me at Baylor was all about what to expect with adult scoliosis fusion, so maybe I'm anticipating a longer recovery than I'll end up having. The official packet said "you will feel as if you've been beaten with a baseball bat!"
    Best of luck to your son!

  4. #4
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    Default Re: Introduction- Surgery in 3 days

    Hi Hayley, and Welcome to the forum, glad you've found us

    It's not unusual for them to change your fusion level at the last minute, as it happened to me when i was in mine, and that was 2 levels more. but as its for the best, dont hate it too much. But sorry to hear it was cancelled at the last minute, really sucks when that happens.

    But going to the questions you've raised,

    sadly just doing exersizes won't reduce your curve, no matter what the companies that offer and say they can, all they do is help reduce the apperance of them and also help you managed them better as well. Only the surgery itself and change the severity of curves.

    Pain isn't the only thing you can think about after it all. But saying that, i don't remember much of it, as i slept for nearly a week after mine. But i woke in pain and then after taking pain relief i would fall back to sleep. But the next week was lots better, hardly any pain at all but it will vary from person to person. But having distractions will help, as it'll take your mind off of it all, but again i didn't manage to do much, just because i couldn't focus on things for long enough.

    You should be able to do work on the computer a few weeks after the surgery, but some even manage it after a few days. (i'm 3 weeks post op at the time of writing this) But take it easy at first as it's more tiring than you might think it is.

    Hope I've been a help in answering your questions.

    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  5. #5
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by JayMoe View Post
    Hi Hayley, and Welcome to the forum, glad you've found us

    It's not unusual for them to change your fusion level at the last minute, as it happened to me when i was in mine, and that was 2 levels more. but as its for the best, dont hate it too much. But sorry to hear it was cancelled at the last minute, really sucks when that happens.

    But going to the questions you've raised,

    sadly just doing exersizes won't reduce your curve, no matter what the companies that offer and say they can, all they do is help reduce the apperance of them and also help you managed them better as well. Only the surgery itself and change the severity of curves.

    Pain isn't the only thing you can think about after it all. But saying that, i don't remember much of it, as i slept for nearly a week after mine. But i woke in pain and then after taking pain relief i would fall back to sleep. But the next week was lots better, hardly any pain at all but it will vary from person to person. But having distractions will help, as it'll take your mind off of it all, but again i didn't manage to do much, just because i couldn't focus on things for long enough.

    You should be able to do work on the computer a few weeks after the surgery, but some even manage it after a few days. (i'm 3 weeks post op at the time of writing this) But take it easy at first as it's more tiring than you might think it is.

    Hope I've been a help in answering your questions.

    Jay
    Thanks for the reply Jay! I did learn the hard way that exercise can't reduce major curves- after I was told I needed surgery at 15 I started exercising like a maniac with lumbar extenders, yoga, etc. 6 years and almost 30 degrees later I'm going for the big slice.

    Glad to hear you're doing so well so quickly after the op- I'm doing some collaborative work this summer and don't want to take *too* much time off- I gave them a guestimate of 3-4 weeks before I could contribute via computer. Do you think that was wise?

    I was actually flat on my back with a spinal headache for about 6 days from the "CT myelogram," (Worst imaging test ever!) so I had a bit of a trial run

  6. #6
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by JayMoe View Post
    But the next week was lots better, hardly any pain at all :
    Jay
    Great! Wow,Wow,Wow!
    I think I will walk around now and just say Wow! Young blood? Young stem cells? You bet cha....Great post Jay

    Haley
    You posted on a public scoliosis forum so there are a few of us elder scolis reading, and there are a ton of us....just wanted to say welcome.....

    I cant comment on the post surgical pain situation really because its apples and oranges due to our age differences. You have your young age going for you, and your going to do just fine..... Try to post when you can....stay the brave one that you are, we are rooting for you!

    Just seeing this communication online puts a huge smile on my face. Its something we didn’t have years ago which made things so much harder wondering about what was going to happen with our spines. Medical technology and internet technology has come a long way.....

    Deep breaths now....

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  7. #7
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    Default Re: Introduction- Surgery in 3 days

    Hi Hayley, Welcome!!!

    I'm 44, and I'm 9 weeks post-op. As has been said before me you have your young age on your side and you are going to be fine

    Here's my experience: I don't really remember my first week in hospital. I slept a lot and had lovely strong meds for the pain!!

    The second week was horrible, but that's cos they made me get up and move, go to physio and make my own way to the loo using a zimmer frame. I just wanted to sleep! And it is painful, I won't lie to you, but good nursing staff will make sure that you have your meds on time and you'll be fine.

    I took puzzle books and my laptop and I didn't use them in the 2 weeks I was there. Partly because I was too busy sleeping and chatting to other ladies in the ward! There was a tv in the room but we rarely watched anything, again as we were too tired. Also, it is impossible to use a laptop whilst lying flat!! But if you have a tablet in a case with a stand you will be fine. I did use my kindle with torch for when I couldn't sleep at night.

    Having said that I think you should take everything you think you may use, kindle, ipad etc just in case.

    I had an eye mask to block out the light and ear plugs as hospitals are noisy places. These were invaluable, oh and carmex lip salve as my lips got very dry in hospital. Toilet wipes are also good to have, and dry shampoo as ou won't be washing your hair for a while!

    Now that I am home I am still really tired, my meds are managing my pain, I nap a lot. But I am also able to do light chores around the house. And I check in on this site, read my e-mails etc.

    Wishing you the best of luck Hayley, you'll be in good hands.I will be thinking of you and looking forward to your updates.

    Lucie x
    I'm 44, I had a scoliosis: thoracic at 49 degrees, lumbar 47 with severe rib rotation. My surgery took place on 28th March 2014, I have 26 screws and 2 titanium rods.

  8. #8
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by HayleyM View Post
    Thanks for the reply Jay! I did learn the hard way that exercise can't reduce major curves- after I was told I needed surgery at 15 I started exercising like a maniac with lumbar extenders, yoga, etc. 6 years and almost 30 degrees later I'm going for the big slice.

    Glad to hear you're doing so well so quickly after the op- I'm doing some collaborative work this summer and don't want to take *too* much time off- I gave them a guestimate of 3-4 weeks before I could contribute via computer. Do you think that was wise?

    I was actually flat on my back with a spinal headache for about 6 days from the "CT myelogram," (Worst imaging test ever!) so I had a bit of a trial run
    Sadly thats how things go sometimes. But its great that your going for it, as i also had a big curve preop (65*+) and i have to say it has changed my life for the better as i can now breathe loads better than i did while i 'had' kyposcoliosis and also shirts and hoodies etc now fit so much better too as im not needing to rearrange them to sit properly on me anymore

    I have to say im surprised at how well im doing as from what i read on here i thought that i would still be in agony after it all, but that simply isnt the case, which im thrilled at. but it completely depends on how you feel. As you dont want to be over doing it. I'm sure that they wont mind if it is a bit longer than you have said. As it could be the case you are able to do it 3/4 weeks post op. So just play it by ear for now and see how you get on, as at first it can be hard to sit for long periods of time, as when i first sat in a chair, i could hardly last 5 minutes, and at the end of my stay, i could last a whole day in it!

    Being young as well will aid you too as you're 2 years older than i am, and the young ones mainly have very good and fast recoveries. But if this doesnt happen with you dont get too down about it as everyone is different and will heal at different times.

    Again hope this has helped and if you have any more queries dont hesitate to ask

    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  9. #9
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    Default Re: Introduction- Surgery in 3 days

    Great! Wow,Wow,Wow!
    I think I will walk around now and just say Wow! Young blood? Young stem cells? You bet cha....Great post Jay

    Haley
    You posted on a public scoliosis forum so there are a few of us elder scolis reading, and there are a ton of us....just wanted to say welcome.....

    I cant comment on the post surgical pain situation really because its apples and oranges due to our age differences. You have your young age going for you, and your going to do just fine..... Try to post when you can....stay the brave one that you are, we are rooting for you!

    Just seeing this communication online puts a huge smile on my face. Its something we didn’t have years ago which made things so much harder wondering about what was going to happen with our spines. Medical technology and internet technology has come a long way.....

    Deep breaths now....

    Ed
    Thanks so much for the well-wishes Ed! (Rod Stewart- that's clever XD)

    It really is amazing what has been accomplished in the past few years. I was speaking to the hospital orientation lady at my pre-op and we got into a discussion about 3D imaging technology and how they're starting to 3D print replacement parts, hips specifically. She was saying that at Baylor they're able to scan (or will be able to soon, I can't remember) the patient's hip bones as they are, import them into 3D software, iron out any defects and print a perfect replica of the existing hip for insertion!

    I can't imagine what they'll be able to do in 10 years- Scoliosis patients will probably be able to get a new spine printed.

    I'm actually doing some animation work for a medical company & was thinking of asking Baylor for the 3D scanned file of my own virtual spine to study. Not sure if they'll let me have it- but it would be pretty neat!

    Hi Hayley, Welcome!!!

    I'm 44, and I'm 9 weeks post-op. As has been said before me you have your young age on your side and you are going to be fine

    Here's my experience: I don't really remember my first week in hospital. I slept a lot and had lovely strong meds for the pain!!

    The second week was horrible, but that's cos they made me get up and move, go to physio and make my own way to the loo using a zimmer frame. I just wanted to sleep! And it is painful, I won't lie to you, but good nursing staff will make sure that you have your meds on time and you'll be fine.

    I took puzzle books and my laptop and I didn't use them in the 2 weeks I was there. Partly because I was too busy sleeping and chatting to other ladies in the ward! There was a tv in the room but we rarely watched anything, again as we were too tired. Also, it is impossible to use a laptop whilst lying flat!! But if you have a tablet in a case with a stand you will be fine. I did use my kindle with torch for when I couldn't sleep at night.

    Having said that I think you should take everything you think you may use, kindle, ipad etc just in case.

    I had an eye mask to block out the light and ear plugs as hospitals are noisy places. These were invaluable, oh and carmex lip salve as my lips got very dry in hospital. Toilet wipes are also good to have, and dry shampoo as ou won't be washing your hair for a while!

    Now that I am home I am still really tired, my meds are managing my pain, I nap a lot. But I am also able to do light chores around the house. And I check in on this site, read my e-mails etc.

    Wishing you the best of luck Hayley, you'll be in good hands.I will be thinking of you and looking forward to your updates.

    Lucie x
    Great to meet you Lucie, everyone here is so encouraging. This irritating medical conditions brings us all together, doesn't it? I even feel a strange kinship with Richard III lately. I hope your recovery continues to go along smoothly! Sorry to hear you're still having pain- I guess it's just a waiting game the first few months.

    Ear plugs do sound like a really good idea- it's almost a good thing my surgery was delayed, I'll be able to bring a few extra things to the hospital next time. I was thinking of bringing my iPad to watch a bit of Netflix. They really need to make laptop and tablet holders that suspend them over your head- I was thinking that when I had my myelogram and my arms kept getting tired.

    I'm curious about the shower situation- do nurses have to observe you the first time, or can someone wait outside the door?

    Sadly thats how things go sometimes. But its great that your going for it, as i also had a big curve preop (65*+) and i have to say it has changed my life for the better as i can now breathe loads better than i did while i 'had' kyposcoliosis and also shirts and hoodies etc now fit so much better too as im not needing to rearrange them to sit properly on me anymore

    I have to say im surprised at how well im doing as from what i read on here i thought that i would still be in agony after it all, but that simply isnt the case, which im thrilled at. but it completely depends on how you feel. As you dont want to be over doing it. I'm sure that they wont mind if it is a bit longer than you have said. As it could be the case you are able to do it 3/4 weeks post op. So just play it by ear for now and see how you get on, as at first it can be hard to sit for long periods of time, as when i first sat in a chair, i could hardly last 5 minutes, and at the end of my stay, i could last a whole day in it!

    Being young as well will aid you too as you're 2 years older than i am, and the young ones mainly have very good and fast recoveries. But if this doesnt happen with you dont get too down about it as everyone is different and will heal at different times.

    Again hope this has helped and if you have any more queries dont hesitate to ask

    Jay
    This has really put my mind at ease Jay. I have noticed my shortness of breath increasing over the past few years, it's been so gradual that I barely noticed, but looking back it's probably been dramatic. And I know what you mean about clothes- the way they "hang" always makes me self-conscious- I think people wonder about me because I always wear sweaters, even in the middle of Texas summer!

    I'm hoping it'll help that I have a desk job and a fairly low-key lifestyle. The guidelines keep reiterating "NO contact sports for AT LEAST 1 YEAR!!!!" In my head I'm thinking, "Oh…..what a loss…."

  10. #10
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    Default Re: Introduction- Surgery in 3 days

    Hi Hayley

    Glad we finally managed to get you registered! I'm another 'oldie' (I was 49 when I had my surgery) so my experience isn't going to be very helpful. I would think the main problem you might have working via computer at such an early stage would be tiredness. Your body will be working hard on healing and mine tended to just 'shut down' every now and then - although, as I said before, I am a bit ancient Other than possible tiredness though, you should be fine, just make sure you don't sit in one position for too long otherwise you'll tend to stiffen up
    Me, a Mod? Nah ... I'll always be a rocker

  11. #11
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by HayleyM View Post

    I'm curious about the shower situation- do nurses have to observe you the first time, or can someone wait outside the door?

    This has really put my mind at ease Jay. I have noticed my shortness of breath increasing over the past few years, it's been so gradual that I barely noticed, but looking back it's probably been dramatic. And I know what you mean about clothes- the way they "hang" always makes me self-conscious- I think people wonder about me because I always wear sweaters, even in the middle of Texas summer!

    I'm hoping it'll help that I have a desk job and a fairly low-key lifestyle. The guidelines keep reiterating "NO contact sports for AT LEAST 1 YEAR!!!!" In my head I'm thinking, "Oh…..what a loss…."
    Well over here in the UK they give you a bed bath every morning, so just a cloth and some warm water in a bowl. I've not heard of someone having a proper shower in hospital post op. But at home the Occupational Therapists (the guys who make sure your house is safe, not sure what you call them in the US) will advise you to get a bath board or a shower chair, depending on what bathing arrangements you have a home, to sit on for a while, as its very tiring to take a shower post op. It will also help making sure someone is in as well when you first start taking showers, as they can help dry you, ive been getting my mum to come and dry my back and hair for me as its pretty hard to do so. Also i sit on the toilet seat while drying my lower half as it means i wont be bending to do so. But do what you feel will be best and safest for you. Oh and just a word of warning, showering will tire you out and also you will get pretty achey and sore too.

    Its funny how the things that come on slowly, when you look back at it all, actually have changed you pretty badly. Like i can now breath through my nose once again with out getting short of breath, whereas before i had to breath through my mouth and i still had to sometimes breath harder just to get enough air. So it really does change you for the better as normally i think people get 50% correction, which sometimes doesnt seem much, but its enough to stop your lungs from being compromised

    It might come to your advantage having a desk job, but i have heard that some do experiance pain from sitting for too long, so be sure to get up and take a short walk every few hours if it does happen as it'll take some of the pressure off of your back but yeah, im the same :P but im sure going to miss cycling for a year or so. but its a small sacrafice im willing to make to make a good recovery

    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  12. #12
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by HayleyM View Post
    Thanks so much for the well-wishes Ed! (Rod Stewart- that's clever XD)

    It really is amazing what has been accomplished in the past few years. I was speaking to the hospital orientation lady at my pre-op and we got into a discussion about 3D imaging technology and how they're starting to 3D print replacement parts, hips specifically. She was saying that at Baylor they're able to scan (or will be able to soon, I can't remember) the patient's hip bones as they are, import them into 3D software, iron out any defects and print a perfect replica of the existing hip for insertion!

    I can't imagine what they'll be able to do in 10 years- Scoliosis patients will probably be able to get a new spine printed.

    I'm actually doing some animation work for a medical company & was thinking of asking Baylor for the 3D scanned file of my own virtual spine to study. Not sure if they'll let me have it- but it would be pretty neat!

    I'm curious about the shower situation- do nurses have to observe you the first time, or can someone wait outside the door?
    Jose Cuervo was taken and sent me into deep depression.....LOL The Rod Stewart selection was next on my list. I post as Titaniumed on the National Scoliosis Foundation forum due to my Titanium (Ti-6Al-7Nb) alloy hardware. Synthes Pangea system was selected.

    3D printing has been around for a while now, I have a friend who owns a small printer that cost him $150,000. Toys for Engineer’s.....
    I’m actually more interested in Laser sintering.....a process of producing impossible to machine metal parts....

    On all your diagnostics, request them to burn copies to disc for your records. Don’t let the Radiologist assistants give you any guff like, “We normally forward to the surgeons” , they are your right, and you paid for them. You can go ahead and get your copies of your CT’s. I have had to be assertive in the past, and have had surgeons retire and lose my diagnostics in the past. I found this unacceptable. Besides, if you move in the future, and have a problem, having that diagnostic history is invaluable to doctors down the road.

    You realize that CT scans are “usually” horizontal slices and viewed “Feet to Head”. They do have 3D coronal CT scans, chances are they have to do a selection on the machinery before the shoot. These views are neat.... CT scans generally emit 400X a single coronal x-ray, you don’t want to be doing these too often, and especially when young. We get enough radiation with the “O” arm flouroscopy used in our surgeries.

    I took a shower in the hospital on my 9th day. If your incisions are good upon inspection, it’s a go. I asked if I could stay in the shower room for a hour, and they told me to go for it. The 1st shower is heaven. I did it all alone...Just ask them if you can take a shower....

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  13. #13
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by Rod Stewart View Post
    Jose Cuervo was taken and sent me into deep depression.....LOL The Rod Stewart selection was next on my list. I post as Titaniumed on the National Scoliosis Foundation forum due to my Titanium (Ti-6Al-7Nb) alloy hardware. Synthes Pangea system was selected.

    3D printing has been around for a while now, I have a friend who owns a small printer that cost him $150,000. Toys for Engineer’s.....
    I’m actually more interested in Laser sintering.....a process of producing impossible to machine metal parts....

    On all your diagnostics, request them to burn copies to disc for your records. Don’t let the Radiologist assistants give you any guff like, “We normally forward to the surgeons” , they are your right, and you paid for them. You can go ahead and get your copies of your CT’s. I have had to be assertive in the past, and have had surgeons retire and lose my diagnostics in the past. I found this unacceptable. Besides, if you move in the future, and have a problem, having that diagnostic history is invaluable to doctors down the road.

    You realize that CT scans are “usually” horizontal slices and viewed “Feet to Head”. They do have 3D coronal CT scans, chances are they have to do a selection on the machinery before the shoot. These views are neat.... CT scans generally emit 400X a single coronal x-ray, you don’t want to be doing these too often, and especially when young. We get enough radiation with the “O” arm flouroscopy used in our surgeries.

    I took a shower in the hospital on my 9th day. If your incisions are good upon inspection, it’s a go. I asked if I could stay in the shower room for a hour, and they told me to go for it. The 1st shower is heaven. I did it all alone...Just ask them if you can take a shower....

    Ed
    That's really cool! We had a 3D printer at university, but I just graduated without ever using it

    I wish they wouldn't give me so much radiation, but every time I bring it up I feel like I'm being a pain. I've never gotten out of one by bringing it up either. The response is always "Your doctor thinks it's necessary." I was given a CT scan as a 7 year old because I had a headache that turned out to be….drumroll…… a headache! Then they blasted me with 2 of them a few weeks ago to look for something-something-pre-surgery-necessary-something. (Nothing they could see with an MRI, of course- those CT scanners are gathering dust and need to be used)

    I did meet with a cancer specialist though (suspected thyroid cancer, turns out it was just Hashimoto's disease) and she said the risk from CT scans was negligible. I've decided to trust her for my own peace of mind.

    There's another thread talking about pedicle screw system complications 20 years down the line- At this point my brain is too exhausted to entertain all the possibilities, I just want to be out of the medical system and move on with life for as long as possible whether I've doomed myself or not. I'm sure that's a common sentiment with surgical patients! I feel like I've aged 10 years in the past few months just worrying about what might happen.

    Glad we finally managed to get you registered!
    Thanks for the welcome GillyG. It was actually a mixed blessing, getting rescheduled the way I did- I feel more comfortable and informed now than I did Wednesday morning.

    Well over here in the UK they give you a bed bath every morning, so just a cloth and some warm water in a bowl. I've not heard of someone having a proper shower in hospital post op. But at home the Occupational Therapists (the guys who make sure your house is safe, not sure what you call them in the US) will advise you to get a bath board or a shower chair, depending on what bathing arrangements you have a home, to sit on for a while, as its very tiring to take a shower post op. It will also help making sure someone is in as well when you first start taking showers, as they can help dry you, ive been getting my mum to come and dry my back and hair for me as its pretty hard to do so. Also i sit on the toilet seat while drying my lower half as it means i wont be bending to do so. But do what you feel will be best and safest for you. Oh and just a word of warning, showering will tire you out and also you will get pretty achey and sore too.

    Its funny how the things that come on slowly, when you look back at it all, actually have changed you pretty badly. Like i can now breath through my nose once again with out getting short of breath, whereas before i had to breath through my mouth and i still had to sometimes breath harder just to get enough air. So it really does change you for the better as normally i think people get 50% correction, which sometimes doesnt seem much, but its enough to stop your lungs from being compromised
    I'm lucky I guess- my home shower has a ledge seat (never used it- now's my chance!)

    I did see on the hospital tour that the rooms have showers in them. Apparently they want me up and walking by day 2- oof, this is going to be a rough week. Like you said though, the increase in lung capacity will be worth it. I see from your profile that you're fused to T12- does it feel radically different (not that you're allowed to move much so soon after, but just in general) to have an solid upper spine? It doesn't seem to me that the upper back moves much anyway, unless you lay back on a roller or really hunch.

    It's starting to feel real again (Tuesday night I was panicking too). Not just the thought of pain, but the potential future complications of the screws, radiation, loss of mobility. Aaaaaah… The panic goes in and out.

  14. #14
    Join Date
    Feb 2014
    Posts
    11

    Default Re: Introduction- Surgery in 3 days

    Good luck on your surgey hayley. Hope for the best.
    Still waiting for my surgery to come one day in the future for kyphosis.. One day..

  15. #15
    Join Date
    Apr 2011
    Location
    Northern California
    Posts
    12

    Default Re: Introduction- Surgery in 3 days

    Hi Hayley

    Wishing you the best with your surgery. Today I am two years post op. Had the surgery when I was 61 years old & fused from T2 down to S1 (19 inch incision down my spine). My lumbar was 72 degrees & my lumbar was collapsing. I am doing really well & have zero regrets. The pain I had is gone. I am so glad I had it done, I was in the hospital for 5 days with the anterior/front part of the surgery & month after had vertebroplasty (bone cement) & the posterior/rear done. I spent 3.5 weeks in a post op care facility. They were wonderful, got me back on feet & stronger. Went off the narcotic pain meds at 11 weeks post op from second surgery......had three days of withdrawals even though I had followed the protocol of going down on the meds. As long as you know what is normal & what is not you can get through this. Everyone progresses at a different time frame so you can compare yourself with others. Some have other health issues that sometimes delay their progress.....I was one of those people. I gave myself little goals to reach as to where I wanted to be by a certain time....most of the time I was able to do that. You have to be very very patience with yourself because this a long road through the recovery. A journey worth taking to get over to the other side & to have as normal a physical life & mobility. I can't bend at the waist or the top of my shoulders. I thought it would bother me but it doesn't. Life is so much better without the pain. You figure out ways to do things that needs to be done a little differently & you learn to adjust to the changes. With the advances in orthopedic spinal surgery surgery is so much better, Several of the Ladies in my facebook scoliosis groups had their surgeries done at Baylor. All are older Ladies & doing wonderfully.
    You will be in my thoughts & prayers with your upcoming surgery.
    Brenda
    Northern California

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