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View Full Version : greetings; i'm new here. impending surgery slated for may 20. i need support.



sacket
05-14-2010, 12:33 AM
greetings friends,

i'm a guy and i'm twenty years old. height is 5'10" and weight is 125 lbs. i'm having a posterior spinal fusion next thursday, and being a very type-a person and somewhat of a perfectionist, i've been questioning myself at every step in this process. i really want to make sure i'm doing everything right and not digging myself into a deeper hole with this scoliosis thing.

now, a brief medical history: i've been asymmetrical-looking for as long as i can remember, but never made the connection to scoliosis or attributed it to a serious abnormality in any way. my parents never noticed because i was always pretty self-conscious about it and made every attempt to cover myself adequately.

i was officially diagnosed last july at a regular checkup with my general practitioner after i complained to her of some back pain. x-rays confirmed two curves, a forty degree lumbar curve and a thirty-eight degree thoracic. it was described as 'levoscoliosis with severe rotation.' apparently the rotation is disproportionately severe given the cobb angles, resulting in a more visible deformity (yay for me). the curves have both progressed by approximately two degrees each in the past nine months.

so, the first specialist i saw (this was last august) put me through a bunch of unnecessary radiation and diagnostic testing. i felt as though i was being strung along, and i didn't like it. tests would be done, then i'd wait, then more tests, then more waiting. then he said there was nothing he could do. after all that. it was already march 2010, and nothing had been done. i actually took a year off school (i was going to college out-of-state) to get this whole back thing sorted out. it was already march, and i wasn't about to take another year off for this.

anyway, i finally sought a second opinion from a dr. james w. simmons at the south texas spinal clinic. in order that i might make it back to school by the fall, my surgery was scheduled for the soonest possible date. i just found out last week that my surgery is going to be may 20.

okay. so i am actually fine with the idea of surgery. i've been having bad back pain for a while, and it's only gotten worse. the pain lies mainly in the convexities of the curve, and has gotten worse as the curves have progressed, which is proof enough to me and my doctor that this is scoliosis-related back pain. i ran through the whole protocol: i tried physical therapy, chiropractic, electric stimulation, deep tissue massage, yoga, acupuncture, inversion therapy, and otc pain management. i've determined surgery to be the only viable option at this point, as a last resort, of course. i was not open to the idea of prescription pain management without surgery because i am strongly opposed to slapping a band-aid on this problem, instead of addressing the structural deformity, and i would likely need the pain pills for the rest of my life anyway, which would suck. at least with surgery, there is a chance i won't have to be on pain pills, or at least not as high a dose. a chance i'm willing to take at this point.

someone out there must be experiencing similar pain to mine. can anybody identify? it feels like a stinging sensation; it starts rather dull but becomes increasingly sharp as it gets worse. soon it spreads from the convexities of the curve to most of my back. my back actually feels numb to the touch and is very warm when this happens. the pain is triggered most by standing still. walking is a little better. sitting is too. laying flat on my stomach is best because it takes the whole load off.

another question: while i am posting this in the adult forum because i am twenty years old, my bone age (tested for a totally different medical problem unrelated to scoliosis) was determined to be seventeen. i'd always wondered why i looked younger than my peers. my body thinks i'm seventeen. anyway, do you think this will play out to my advantage for the surgery? will i get a better result given that i am still sort of an adolescent? i would think that i'd get a better result because my spine is tad more flexible and not fully mature yet. the bad part about having a younger bone age and slow growth, of course, is that there would be more opportunity for curve progression. how good a job does surgery do at arresting that progression?

also, does posture generally improve after surgery? it's weird because i think i'm standing up straight; then i look in a mirror from the side and see how hunched over i look. could this be scoliosis related? i know i don't have kyphosis or anything like that. it just looks like my neck is arched forward too much. the over-prominence of the shoulder blade and the rib hump certainly don't help my postural appearance either. i try to push my neck back and kind of puff my chest out a little in a vain attempt to look like i have normal posture, but somehow, that actually HURTS my back, esp. between the shoulder blades and down in the lumbar area. i don't feel i should be punished with pain when i try to stand up straight like a normal person. haha. i definately had much better looking posture as a kid; it kind of got worse when the curve, unbeknownst to me, was progressing throughout my childhood and adolescence.

finally, from your knowledge or personal experience, how much does a leg length discrepancy factor into your recovery and does it impact the success of the fusion? my left leg is structurally 7.5 mm shorter than the right (most of this difference being in the tibia), which i've heard is not actually too severe a leg length discrepancy. but clearly spinal fusion in itself cannot correct a tilted sacral plane, right? is it possible that after surgery when my spine is straighter, my left leg will grow to compensate for the new equilibrium?

finally, i did my pre-op testing earlier today, but didn't have to do a blood gas test. also, i wasn't asked to donate my own blood. should i be worried about this? the doctor never mentioned anything.

oh, and if you were treated by dr. james w. simmons, please offer your feedback on your care! i think i trust this guy's expertise, but some extra reassurance would really calm my fears TREMENDOUSLY.

thanks for listening to my long and winded nervous babble. and thanks in advance for your help and support. it means a lot.

i probably have more questions but i can't remember them at this time. haha.

rohrer01
05-14-2010, 01:43 AM
Sacket,
I can certainly relate to the PAIN aspect of scoliosis. I've had pain since I was 8 years old and never mentioned it because I thought it was growing pain and would just stretch it out in the mornings. When I was about 12 years old, the pain became pretty bad in my neck and upper back. I would complain and say my spine felt like it wasn't in the middle. The response from my mom was of course it's in the middle where else would it be? Go take some aspirin. At age 16 the pain became so bad that it was completely immobilizing. After suffering through the weekend, my mom finally took me to a chiropractor and I was diagnosed with a 39* upper thoracic curve. She felt REALLY bad because she didn't believe me all those years. I hated to see my mom cry so much! :( My curve was not braceable. She took my to Children's Hospital and put me through every kind of therapy there was. I was tested, poked, exercised, electrocuted ;) , you name it. Anyway, I always continued to have pain and have always been told that "scoliosis doesn't hurt." I finally found a doctor from the Scoliosis Research Society that said I had a typical pain pattern for scoliosis and he would do surgery for pain reasons. Since my curve was stable, even though I had to use narcotics at times, I didn't want the surgery because I was only 40* and not mentally prepared AT ALL. He said to come back in 3 to 5 years for a recheck, since my curve was stable and he felt it would never progress. Well low and behold when I went back to him in March of this year, I HAD progressed 6*. I was in OBVIOUS pain in my lower spine which turned out to be a different condition unrelated to the scoliosis. He didn't wan't to do surgery, just have me come back in 12 to 18 months. BUT, he told me if my upper back or neck pain increased to come back whether it was a week or a month, he wanted to see me again. Well it got so bad that I am now on HEAVY narcotics (don't even want to mention what) and he tells me my pain is not even scoliosis related and he couldn't help me. He said surgery would only make it worse, and besides I wasn't even progressing. I corrected him and he says, "Oh, yeah. I guess you are." But the guy left me litterally sitting there in the office crying. I asked him where I could go for help, that I didn't want to be on all these drugs. He just asked if I had a General Practitioner, and I said yes, and he sent me to you, and so did my neurosurgeon. He said he wished he could help me and that if my curve was 60* he would.

I guess the point of my story is that you are a very fortunate young man to have found a surgeon to believe you, because NONE have believed me, even though my symptoms have been consistent for years. I can't relate to the numbness in the spine, but my bones actually ache. I get terrible neck pain because of how high up my curve is. My doctor (THE ONE) actually told me he was surprised that I could hold my head up straight! I get very severe muscle spasms in my neck and under my shoulder blades. I get sharp pain in my sternum and cramping in my intercostals (between the ribs). I have had it feel like a burning sensation across my whole upper back at times. I get my left arm that goes numb and pain that runs down the arm all the way to my fingertips. Pain down my right arm only goes about half-way to my elbow when it happens. I feel so happy for you that you get to have the surgery. I am FORCED to be on the meds because it is the only thing my GP can do when the scoli doc won't operate, otherwise I'm totally incapacitated. I think your young bone age is a plus. Younger spines move easier. That's why they will do pediatric corrections at my local hospital but not adult. I would ask about the blood if you are concerned. I've heard people having large amounts of transfusion to no transfusion since I've been reading the forum. I hope my experience has helped you. I am 41 and still fighting to find someone who will help me.:(
Best Wishes!

rohrer01
05-14-2010, 01:46 AM
Is this your doctor?

James W. Simmons, III, DO
South Texas Spinal Clinic
18626 Hardy Oak Blvd., #300
San Antonio, TX 78258
Phone: (210) 495-9047
Fax: (210) 495-9310

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile

If so,I found him on the SRS (Scoliosis Research Society) website and I would say you were in good hands. :)

jrnyc
05-14-2010, 03:03 AM
Hi sacket
welcome to the forum...there are many wonderful people on here, with stories to share and help to offer...

i would suggest a search for the threads of JDM555...he is young, college age i believe, and had the surgery already...maybe you could ask him some of your questions through a private message and get some answers from what he has already experienced...

i have a 42 thoracic and a 61 lumbar...but have not had surgery..yet..though am now considering minimally invasive approach, as it spares muscles somewhat and causes less blood loss...it is the idea that i could still be in pain after healing was complete that has put me in limbo...
plus the fact that i need fusion from T11 to the pelvis...i dont remember you stating where your fusion will be ...?
best of luck...

jess

JenniferG
05-14-2010, 03:44 AM
Good suggestion Jess, for Sacket to get in touch with John.

Welcome Sacket, but sorry that you need to be here. As Jess said, there are lots of knowledgable and experienced people here who can answer at least some of your questions.

For myself, I also had levoscoliosis with severe rotation. I didn't have surgery until almost 58 so you're going to be miles in front of me. I had a 68 degree curve, now 22, rib hump has gone and I no longer have pain.

It sounds like you've tried various therapies and are ready for surgery. I think, because of your age, whether your body thinks it's 17 or 20, you will do just fine. Young people recover more easily than older people, as would be expected.

I can't answer your other questions, but I am sure someone will come along with the right experience or knowledge and give you some answers. Just want to wish you luck for your surgery and I hope you'll let us know how you're doing when you're able.

titaniumed
05-14-2010, 10:05 AM
Welcome Sacket,

I agree. John has done well.. and will continue to do well into the future. He is a similar case. PM him.

Do you know what levels will be fused?
Ed
titaniumed@hotmail.com

gmw
05-14-2010, 04:08 PM
Hi Sackett -- I'm not post-op yet, but I will tell you, there is a tremendous amount of support on this forum. You've come to the right place. Wishing you all the best for your surgery on the 20th.:)

Glenda

sacket
05-15-2010, 12:50 AM
i appreciate the wonderful outpouring of support and warm wishes.


Is this your doctor?

James W. Simmons, III, DO
South Texas Spinal Clinic
18626 Hardy Oak Blvd., #300
San Antonio, TX 78258
Phone: (210) 495-9047
Fax: (210) 495-9310

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile

If so,I found him on the SRS (Scoliosis Research Society) website and I would say you were in good hands. :)

yep, that's him. i find that very reassuring.


Do you know what levels will be fused?

i dont remember you stating where your fusion will be ...?

i actually don't know. my last pre-op appointment is this upcoming monday; i have that on my list of questions. he may have told me last time, but like a dummy i didn't think to write it down.

any other important questions you think i should ask? (i.e., are there any questions you wish you'd asked, in hindsight of your whole surgery experience?) this time, i'm coming prepared with a list. haha.


would suggest a search for the threads of JDM555...he is young, college age i believe, and had the surgery already...maybe you could ask him some of your questions through a private message and get some answers from what he has already experienced...


i will do that!


can certainly relate to the PAIN aspect of scoliosis.

rohrer01, so glad i have someone with whom to relate! in fact, dr. simmons is the first orthopedic surgeon i've seen that has acknowledged that my pain is attributable to scoliosis. my previous orthopedic surgeon insisted that scoliosis isn't associated with pain. when he told me this, he also insinuated that because he couldn't find proof of the pain, that i wasn't in real pain and i was simply somatizing it or even making it up. i took much offense to that, and looking back on it, that should have been my cue to leave his office right that moment.

even though i am only twenty years old, it would be nice to be taken seriously. dr. simmons actually listens, and that is a welcome relief.


The response from my mom was of course it's in the middle where else would it be? Go take some aspirin.

oh my, i've gotten that exact same response many times throughout my childhood! would you believe it?! in response to my asking why one side of my hips seemed to jut out more, she told me "it's because your so skinny." that never sat well with me because i've seen many skinny people and they don't look like that. haha. but i don't blame her, really. the last thing we need to do before surgery is harbor resentment toward our parents, haha, right?


guess the point of my story is that you are a very fortunate young man to have found a surgeon to believe you, because NONE have believed me, even though my symptoms have been consistent for years.

your story sounds nightmarish and is really touching; i feel your pain (literally), and if your pain is anything like mine (and yours sounds like it's much worse), i can only hope that you find a surgeon who will take you seriously. are you still looking for one?

my pain has been increasing more rapidly over the past couple years to the point that i can only stand for about ten to fifteen minutes at a time before i need to sit or lay down and rest. i know the numbness part sounds weird. the stinging pain is deep in my back; i can feel it, but the surface of my skin is numb and warm to the touch. unusual, i know. but i'm certainly not imagining this; that's for sure.

my doctor, luckily (and i mean really luckily) understands my position, that is, that i'd rather go through surgery and have to end up on pain pills than to just go on pain pills now without surgery for an indefinate amount of time. i believe this because first of all, at least after surgery i'll know i did EVERYTHING i could do to try and fix this deformity before resorting to pain medication. secondly, because the chances are in my favor that after surgery and recovery i can put off being on long-term pain medicine for a while, or hopefully decrease the dosage i'd need to take compared to not having surgery. of course, there is always the chance i'll be in MORE pain after surgery/recovery, which would of course suck, but i've researched this and apparently the chances of a negative outcome are outweighed by that of a positive outcome, which is reassuring. it's a chance i'm willing to take, in other words.

sorry for the rant.

finally, regarding some still unanswered questions, can anybody here attest to having improved posture after surgery? does fusion make it impossible to slouch, even if you wanted to? also, anybody have a leg length discrepancy, and if so, how did you deal with that after the spine surgery?

JenniferG
05-15-2010, 12:54 AM
Fusion does make it difficult to slouch, though I suppose it depends how high up your fusion extends. It will also improve your posture, but it won't make you look like the Tin Man!

I thought I had one leg shorter than the other, but it was apparently the curve that make it appear shorter.

JenniferG
05-15-2010, 12:56 AM
I don't know where that "thumbs down" came from.:confused:

rohrer01
05-15-2010, 01:29 AM
oh my, i've gotten that exact same response many times throughout my childhood! would you believe it?! in response to my asking why one side of my hips seemed to jut out more, she told me "it's because your so skinny." that never sat well with me because i've seen many skinny people and they don't look like that. haha. but i don't blame her, really. the last thing we need to do before surgery is harbor resentment toward our parents, haha, right?



your story sounds nightmarish and is really touching; i feel your pain (literally), and if your pain is anything like mine (and yours sounds like it's much worse), i can only hope that you find a surgeon who will take you seriously. are you still looking for one?

my pain has been increasing more rapidly over the past couple years to the point that i can only stand for about ten to fifteen minutes at a time before i need to sit or lay down and rest. i know the numbness part sounds weird. the stinging pain is deep in my back; i can feel it, but the surface of my skin is numb and warm to the touch. unusual, i know. but i'm certainly not imagining this; that's for sure.

my doctor, luckily (and i mean really luckily) understands my position, that is, that i'd rather go through surgery and have to end up on pain pills than to just go on pain pills now without surgery for an indefinate amount of time. i believe this because first of all, at least after surgery i'll know i did EVERYTHING i could do to try and fix this deformity before resorting to pain medication. secondly, because the chances are in my favor that after surgery and recovery i can put off being on long-term pain medicine for a while, or hopefully decrease the dosage i'd need to take compared to not having surgery. of course, there is always the chance i'll be in MORE pain after surgery/recovery, which would of course suck, but i've researched this and apparently the chances of a negative outcome are outweighed by that of a positive outcome, which is reassuring. it's a chance i'm willing to take, in other words.

sorry for the rant.



I'm not mad at my mom for not believing me. I think SHE thinks I am and still feels guilty. I'll never forget the look on her face when the chiropractor hung up my X-rays and we both saw them for the first time. Her face turned all red and her eyes welled up with tears and she cried. My mom doesn't cry easily. It breaks my heart to this day to remember that day. How could I ever be mad, she just didn't know and had never even heard of scoliosis.

As far as trying to find a doctor, yes I'm still looking. Dr. Hey in N.C. has agreed to look at my X-rays and MRI's and give me his opinion. That saves me the trip out there and the expense of an office visit, which is VERY nice of him. I hope I don't get a surprise bill in the mail after his evaluation. LOL Oh well, even if he does send me a bill I will still have saved the trip out there.

I haven't been on the forum very long. But I've learned in a short period of time NEVER to be sorry for ranting or venting or whatever. Sometimes this is the only place where you can go where people actually understand how you feel. I'm sure others will chime in to answer your other questions.

:)

pmsmom
05-15-2010, 09:29 AM
Welcome to the forum! You will find lots of support and information here--sometimes things one might forget to ask a surgeon at a visit, or some things they may not tell you because this is "normal" to them--they see so many patients.

As a perfectionist, though, I do advise that you do what you can then leave the rest to God and your surgeon. There are some things that are out of your control (I say this b/c I am a perfectionist and it was my dd who was having the surgery).

I'm saying that so you can have peace of mind throughout this. You *will* get through this! :)

Take care!

sacket
05-16-2010, 01:51 AM
As far as trying to find a doctor, yes I'm still looking.

good to know! perseverance is the biggest and most crucial lesson i've learned thus far from this scoliosis mess.


Fusion does make it difficult to slouch, though I suppose it depends how high up your fusion extends. It will also improve your posture, but it won't make you look like the Tin Man!

this is good news! i was wondering where the thumbs down came from too.


You *will* get through this!

thanks, i know i will! self-confidence seems a key quality to have through this whole process, and i'm still working on it; sometimes it can be hard to have confidence with a disfiguring and painful condition, but there are millions out there who deal with it every day. i am glad to know i am not the only one! that sounds rather sadistic to say, because i wouldn't wish this condition on anybody, but you get what i mean.

diane2628
05-16-2010, 07:31 PM
I'll try to keep it short - so much to say. I had surgery 10 years ago (posterior approach only), when I was 30. My curves were around the same as yours. I've been great since then - I cross country ski, scuba dive, backpack, hike, kayak, canoe, you name it. Starting to get some aches and pains now as I age, but it was definitely the right thing to do....and my pain pre-op wasn't nearly as bad as your sounds. You will definitely be able to have a normal life, with much less pain than you're having now.

Yes, you should get a better correction than someone older than you - you're more flexible, and you'll heal more easily as well. You should end up a bit taller, and you'll definitely look straighter/like you have better posture. The reason you look like you're hunched over is because of the twist - most people with scoliosis also have some twisting in their spine, which makes one side of their back stick out farther than the other. They should be able to help that at least a bit - maybe a lot - in the surgery.

Just make sure to ask lots of questions about what's being done and what to expect afterward. If you're lucky, your recovery will be very smooth - I was back at work in 3.5 weeks and on a backpacking trip 4 months later, but some people have a rougher time. You'll be fine - it sounds like you have a good doctor, someone you can talk to and trust, and that's a great first step.

sacket
05-16-2010, 09:12 PM
Just make sure to ask lots of questions about what's being done and what to expect afterward. If you're lucky, your recovery will be very smooth - I was back at work in 3.5 weeks and on a backpacking trip 4 months later, but some people have a rougher time. You'll be fine - it sounds like you have a good doctor, someone you can talk to and trust, and that's a great first step.

aww. thanks diane for the concise but very helpful words. it is my dream to be as active as you are after surgery! and to be back at work in less than a month...wow! i can only hope i have a fairly smooth recovery as well.

alright guys, i just thought of another question: HOW, if at all, did you sleep the night before surgery? is there anything i can eat or techniques i can use to help me get a restful night's sleep before the procedure? it would seem having a good night's sleep before such a major thing would be important, no? i'm sure i'll be a ball of nerves, but i don't want to take sleeping pills or anything that could potentially affect my blood pressure or mess up my surgery somehow.

anybody?!

thanks.

diane2628
05-16-2010, 09:39 PM
I hardly slept at all the night before my surgery - but also didn't want to take any sleeping pills, etc. I figured I'd be getting plenty of sleep in the hospital... I was single at the time, so I hung out with a couple of very close friends, who distracted me from my anxiety about it, with a good movie & some good food.

sacket
05-17-2010, 11:57 AM
IMPORTANT UPDATE:

whoa, just came back from last pre-op appointment, and i have a whole bunch of new worries now!

his plan is to fuse from t10 to l4, he thinks, but it could be more like t11 or t12 to l4. my thoracic curve is compensatory. does anybody here have a similar curve pattern? also, for those of you who had a selective lumbar fusion, did the thoracic curve derotate and straighten itself on its own after the lumbar fusion? should i be upset that he's not fusing the thoracic curve? i'm just a bundle of nerves and am worrying about everything from the rib hump still being there to having more thoracic problems later because it's not being fused. not to be superficial, but what if i wake up after surgery only to find that i still look just as crooked and still have a big rib hump? that would be a huge let-down! remember, i am a young adult, so a good all-around outcome is absolutely crucial to me! even though appearance is my last concern at this point, it would be nice, you know!

he said i can expect only 50% correction, but is hoping for more. i was really hoping for 10 degrees or less, since my curve isn't that terribly big to begin with. do doctors usually say 50% so as not to build false hopes or make any promises? i wish i could get my hopes up about having a 10 degree or less curve. that would be awesome. but the fact that he said 50% isn't very reassuring. he did say he would go for the maximum possible correction, and he can't really tell what that'll be until he's actually operating. does this sound right to you all?

he said there won't be a wake-up test performed but that there will be another doctor monitoring my spinal cord function.

i cannot thank you enough for your prompt attention and responses to my probably senseless worries!

sacket
05-17-2010, 10:50 PM
slight bump. :]

diane2628
05-18-2010, 10:40 PM
A lot of us have compensatory curves - the spine balances itself out, in a way, by curving in opposite directions in the lumbar & thoracic areas. Most people I know seem to have the thoracic curve fused and not the lumbar, though - some have both fused, but if they just have one, it's more often the thoracic. So for most people, the thoracic curve is the primary and the lumbar curve is the compensatory one. There must be some way that your doctor is able to tell that the lumbar curve is the primary one?

I suggest you ask your surgeon the questions you are asking here. Is he willing to sit down with you and explain the decisions he's making? I know your surgery is in just a few days, but you need to feel comfortable with what's going to be happening to your body. Can you call, email, meet again, do something to get some dedicated time with him before your surgery?

As for the correction - I ended up with less than 50%, but many people have more. It depends on the flexibility of your spine and on the type of surgery. Did he do bending xrays to see how flexible your spine is? I think they sometimes do try to downplay the degree of correction, because they don't want people to get their hopes up, but again I'd try to ask him where that estimate is coming from.

rohrer01
05-18-2010, 11:05 PM
My doctor told me when he does surgery (I don't know if I'll keep him yet or not because he won't do the surgery until I'm much worse. I've already discussed the pain issues with you). Anyway, back on topic, he said he would fuse at the lowest T2 to probably L1 or maybe T12. So that would be fusing right through the compensatory curve. I think my curve angles are about like yours (46* and 28*). If you want to see them look under my thread where I state that I have received my CD's. Maybe the reason being that he only wants to fuse the one curve is because our curves are considered "small" in the severe category, if that makes any sense. If you think about it, if you have a 40ish curve and get 50% correction, you are left with 20ish curves, which is pretty good considering what some people are happy with. I'm just trying to get you to look on the positive. You could ask him to correct the thoracic curve just to make sure that the rib hump is gone. Tell him that cosmetic issues are VERY important to you at your age. This is where good patient/doctor communication comes in to play. You want him to know your wishes before he has his gameplan set. Best wishes to you! Let us all know how it turns out. ;)

This is kind of a last minute thought. My 28* curve isn't causing too much of a rib hump, in the normal sense of what we think of. It is causing my ribs to kind of bow out the side instead of sticking out the back like my larger curve, so it really isn't that noticeable unless I'm wearing something tight. Then I don't think anyone would notice unless it was pointed out to them. So if both of your curves end up in the 20's you might have surprisingly good results. I can't say for sure. Just a positive thought..:)

sacket
05-19-2010, 12:55 AM
:eek:JUST ONE MORE DAY!:eek:

thanks for the tips rohrer and diane!

i did stress to him that while cosmetic issues are definately NOT my first priority (in fact they are my last), it would be nice if the rib hump was flattened out. i was met with a chuckle, because i guess it's normal for a twenty-year-old to be concerned about the cosmetic outcome.

anyway, i won't be able to talk to him until thursday, right before i get put under and wheeled into the operating room. i really do trust his expertise, so i plan on telling him to feel free to fuse higher up the thoracic, if he finds it necessary or if he thinks it will improve the surgical outcome.

my main concern with not fusing the thoracic curve is that, if it is not fused, that i may still have a ton of pain around my right shoulder blade, as i do now.

as i've said before, my curve pattern is structural lumbar and compensatory thoracic, so i can only hope that if he doesn't fuse the compensatory curve, that it will at least respond to the decrease in the lumbar curve by straightening out a little bit. i should mention to you all that i took a look at my bending films, and in the left-bending film, when i bent away from the lumbar curve, the compensatory thoracic curve straightened COMPLETELY. it was amazing. i hope that the surgical outcome mimics this! do you think that is reasonable?

also, regarding the % curve correction, i talked with dr. simmons earlier today and he clarified what he meant by 50% correction. he said 50% is what they shoot for as a minimum, but that many patients have much better results. he said anywhere from 50% to about 80% would be expected for someone my age. yay!

i appreciate the positive thoughts. :]

i should also mention that on an unrelated note, i somehow hurt my back when i was doing some stretching exercises today, and now my lumbar hurts badly whenever i do pelvic tilts. my new worry is this: somehow this will affect my flexibility/the surgical outcome. please reassure me that i'm just being ridiculous. it's getting so close to surgery, and i'm so apprehensive and scatter-brained that i'm verging on neurosis. but this is probably normal for someone undergoing major surgery.

rohrer01
05-19-2010, 08:28 AM
i should also mention that on an unrelated note, i somehow hurt my back when i was doing some stretching exercises today, and now my lumbar hurts badly whenever i do pelvic tilts. my new worry is this: somehow this will affect my flexibility/the surgical outcome. please reassure me that i'm just being ridiculous. it's getting so close to surgery, and i'm so apprehensive and scatter-brained that i'm verging on neurosis. but this is probably normal for someone undergoing major surgery.

I wouldn't worry too much about that. You probably just pulled a muscle. There is going to be plenty of muscle pain post-op, from what I hear. That's what the meds are for, so you won't even realize that it happened. I'm quite sure you didn't mess things up for your surgery tomorrow. I've read on here that many people can't even remember the first couple of days post-op. They take real good care of your pain. I can't wait to hear your outcome. Best wishes, and know your scoli buddies are thinking about you! ((((HUGS))))

Just an off the wall thought. I have a son that is only 2 years older than you and a daughter that is your age and a 17 year old son. So I feel kind of maternal for you. Just know that you are in good hands. I hope you have a good support network at home. Mom's make the best nurses!:D

Confusedmom
05-19-2010, 08:33 AM
My curves are much worse than yours and I'm 38, but my doc is recommending the same thing: fuse the lumbar and hope the compensatory curve straightens on its own. You are only 20 and bones 17, so I think this is a great approach. Your spine is probably very flexible, and not fusing the top should leave you with more flexibility. Downside is that I suppose eventually you could need another surgery, but that could be 30 years from now or hopefully not at all. From everything I've read, it sounds like you will be happy with the result. Best wishes! I wish I could have gotten this over with at your age!

Evelyn

sacket
05-19-2010, 02:27 PM
Just an off the wall thought. I have a son that is only 2 years older than you and a daughter that is your age and a 17 year old son. So I feel kind of maternal for you. Just know that you are in good hands. I hope you have a good support network at home. Mom's make the best nurses!

i can definately sense your maternal instinct, rohrer, and i am so glad i found this forum and connected with you all. it has made a world of difference in my pre-op prepation (especially the mental preparation), and i would likely be even more of a nervous wreck had i not cooresponded with you all to assuage my fears.

even though i have never met you all, i have let out a hugh sigh of relief over these past few days because i now know that i am not the only one out there, and that there are so many empathetic people here who really do feel my pain and care deeply that every scoli sufferer finds relief from the condition.


Your spine is probably very flexible, and not fusing the top should leave you with more flexibility. Downside is that I suppose eventually you could need another surgery, but that could be 30 years from now or hopefully not at all. From everything I've read, it sounds like you will be happy with the result.

thanks confusedmom; i really do hope i'll be happy with the outcome. i'm very type-a and perfectionist by nature, so i am making a conscious effort to counter those innate, obsessive tendencies and just be happy with the result regardless.

t minus 23 hours...

LynetteG
05-19-2010, 06:33 PM
Sacket - thinking about you. You are in my thoughts and prayers and I wish you a great smooth surgery, looking forward to hearing from you afterward. It will all turn out great. By the way my main curve was lumbar, and compensatory curve was thoracic, he worked on me from T12 to the sacrum, so the lumbar is what I think he only worked on, and I got a fantastic correction in both lumbar and thoracic.

Back-out
05-19-2010, 08:11 PM
Sacket,

You came on board kind of late, but better late than never - though you missed a lot of potential support in the preliminary phases!

Never mind, you'll get a lot afterward.

Joining the countdown with the rest. No one here is alone. We all know where you're coming from and we all hold our breaths for each other.

Healing thoughts sent your way from one more "spinie"! :)

Amanda

sacket
05-31-2010, 01:24 PM
i'm alive!

greetings, friends. i just got out of the hospital this past saturday, and haven't had internet access until just now. my surgery was back on may 20, so i was in the hospital almost ten days.

my orthopaedic surgeon was ready to discharge me after day five, but i was having some bowel complications (severe constipation) relating to the narcotics. or at least, they THOUGHT it was bowel complications. turned out, after all the chest x-rays and a ct scan, that what they thought was blockage in my colon was actually an AIR BUBBLE trapped under my abdominal muscle, and that my colon was actually totally cleaned out.

has anybody ever heard of an air bubble being trapped under the skin/muscle following surgery? it almost looks like a small roll of fat on my right side. hopefully it will go away with time?!?

anyway, other than that, the surgery was largely a success, and my surgeon was very pleased. my post-op lumbar curve is around 15 degrees. i was REALLY hoping for 10 degrees or less, but apparently it is more difficult to get that kind of correction on a lumbar curve than a thoracic one? anyway, i'm still happy, just kinda wishing it could have been corrected more. i'm sure he did all he could though. oh, and i'm fused from t5 to l4.

so i'm not on any narcotic pain meds at all. after the whole constipation scare, i requested that they stop the morphine. right now i'm just taking 800mg ibuprofen every six hours (like four advil), and it knocks the edge off the pain enough to make it tolerable. either i have a high pain tolerance, or my surgeon is a superhero and did something to make it less painful, but somehow i'm doing fine without any narcotic painkillers, and i'm glad i can get by without vicodin or anything like that.

on to the surgical after-effects:

obviously i am having a lot of back pain. but, what's weird is that there is a band that wraps around my pelvis, from where my legs meet my torso around to my butt, that is EXTREMELY sensitive. the nerves are really hyper-sensitive in this area. it makes wearing anything with an elastic waistband uncomfortable because it compresses that entire area. is this type of nerve sensitivity normal?!?

also, about that air bubble i mentioned earlier...anybody have anything like that happen?

finally, even though i'm NOT constipated, i'm still super super bloated, and i can't figure out why. i guess it's just a normal post-surgical thing? i feel like i'm a few months pregnant here. between the abdominal bloating and the swelling in my back, i look and feel like a rather amorphous tree trunk. my back looks all flat but i'm guessing it'll assume a normal kyphosis/lordosis in time once the swelling goes down.

anyway, just glad to be ALIVE! this will take some getting used to, for sure.

thanks for all the help guys. couldn't have made it without you all, because otherwise i'd have been so scared i'd probably have backed out or something.

EDIT: forgot one question! since i'm fused to l4, does that mean my l5 disc will automatically degenerate as i get older, since it is bearing the brunt of my weight now? i used to be an avid runner; now i'm afraid i won't be able to run anymore because the impact of the activity will destroy my remaining discs.

sorry i'm such an incurable worrywart! haha.

Doodles
05-31-2010, 02:07 PM
Sacket--It sounds to me like you are doing fantastic! Congrats! Yes, the bloating/swelling takes a while to go away--especially the swelling. I've never heard of the air bubble thing--that's a new one. I know I won't be running again but that's OK with me. I'd be sure to follow doctor's orders on that one very carefully. Hope the recovery goes well. Janet

JenniferG
05-31-2010, 03:26 PM
Hello Sacket, welcome back! Sounds like you've done extremely well. I haven't heard about the air bubble but I am sure it will dissipate as time goes on. I'm a bit concerned about the high dosage of Ibuprofen though, because I thought anti-inflammatories were a no-no for fusion surgery. I'd be checking that point...but I am sure your surgeon knows what he's doing. My own surgeon gave me ibuprofen with the narcotics in the first week, so there must be something I don't know about.

When you see your surgeon, ask him about that last vertebra. He would have left it to retain some of your flexibility.

Are you walking every day? To me, that is the important part about recovery, if you possibly can. I hope you are enjoying plenty of spoiling from the family. Did you regain much height?

jrnyc
05-31-2010, 04:15 PM
congratulations, sacket...so great that you are in the healing phase, and that you are not on narcotics is amazing!!
the less far down the surgeon fuses, the more flexibility you will have left...also, if you did need surgery in 30 years, there will probably be alot of improvement in how they do it by then! so dont worry, just rest and heal! :)

jess

Back-out
05-31-2010, 05:43 PM
Welcome back to the land of the living, home of the (pain)free. Well, if not quite the latter, at least - I echo Jess's amazement - narcotics-free.

Yes, DO be sure about that ibuprofen dosage. NSAIDS are said to retard bone fusion but maybe that's more a concern for fogies like me. Then too, perhaps your doc evaluated your bone density and whatever else is involved and figured the trade off was worth it, especially if it's temporary.

Wouldn't fret about that lumbar correction . As a percent of what you'd hoped (50% less) it sounds like a lot, but 15 degrees is really very low. Speaking as one with 60 deg lumbar if it hasn't increased since the last reading in March. :eek:

It certainly is a HUGE plus to be off narcotics already. Don't know whether I'm dreading the surgery per se more or the pain meds dependence (and then withdrawal). I've been detoxed before from a super high dose and it's one of my worst memories (and I've got a bunch). You're way ahead of the game, not having that ahead of you.

The bubble deal is new to me, but it makes perfect sense and Hey, what do I know? So much was done, sculpting you. I used to be a sculptor and I picture this surgery as a work of sculpture - since to succeed it has to be planned and rendered three-D. In fact, there's a 4th dmension to be factored in too - Time. They have to understand how the corrections will settle in over that axis too.

I picture your bubble as what is so often left in the clay after a figure is modeled over the armature - the rods and screws, etc. Since you don't have to be "Fired" in a kiln (which would make it explode :eek:) you'll be OK! :D

Major congratulations! You're a trouper. I have a son your age, and he was showing signs of scoliosis a few years back. I definitely need to have a look at him again when he's home next. Especially from what I've read about curves being missed in adolescence - that, plus heredity.

How are you with the computer? I expect with modern PC usage, more guys will develp scoliosis from vairations on the PC sprawl/slump. I worry about my son's computer "hump" - he's an addict, like so many these days. Do you use one much? Was just reading about ergonomic seating at the PC. I really need to adjust his chair/desk/monitor relationships and my own too (shutting barn door after horse etc., there)

Hopefully, since he's taking a year off college, he'll be able to be around when I have the op. (But my S.I.L. had BETTER come through for the intimate stuff! Can you imagine helping your mom shower? :o I thought so...)

Rah Rah YOU! (Nosy - what's your major?) :)

Amanda-Mom (me and Rohrer ;))

Confusedmom
05-31-2010, 08:58 PM
has anybody ever heard of an air bubble being trapped under the skin/muscle following surgery?

EDIT: forgot one question! since i'm fused to l4, does that mean my l5 disc will automatically degenerate as i get older, since it is bearing the brunt of my weight now? i used to be an avid runner; now i'm afraid i won't be able to run anymore because the impact of the activity will destroy my remaining discs.

Congratulations on your surgery! What a relief to be home and already off the narcotics!!

When I had my gallbladder removed I had pain in my shoulders that they said was air remaining in my abdomen. Apparently they had to inflate my lungs during anesthesia and some of the air stayed in. I gather it is kind of common, though I don't know if this is the same kind of air you are experiencing. Anyway, it did go away in a couple of weeks. They actually said I could use gas medicine to help reduce it.

On the fusing to L4 question, my surgeon did tell me that my L5 disc would likely degenerate over time (he has proposed fusion to L4). I guess they hope that we will just get by, but there is always the possibility of a second surgery. But nothing in the near term--I gathered it would be several years--so rest easy and just focus on recovering from this one!

Evelyn

rohrer01
05-31-2010, 10:02 PM
Welcome home, Sacket!!!

I'm really impressed that you don't need narcotics! Don't try to be a man too much though if your pain gets bad. It's better to address it and be able to keep active than to let it get out of control - from personal experience even though I haven't had this particular surgery, I live with pain.

I'm surprised to hear that you are fused T4 - L4. I thought you were going to have only the lumbar done. Did he do it for cosmetic reasons? Good deal for you! Better done now than have to return for another surgery.;)

My question to you is did you have anterior and posterior? The reason I ask is how did the air bubble get in there unless you had your abdomen opened? From what I know about the body, the air bubble will be absorbed by your body, although I would expect it to have been gone by now. Not trying to worry you, maybe it was really BIG. Gosh, that would hurt! I've had air trapped in my diaphragm before, no fun.

Well, I just wanted to pop in and let you know that I have been checking this thread frequently over the last week waiting to hear news from you. I'm glad that everything is okay, and 15* is great! That size of curve wouldn't even put doctors in the worry category. Congratulations on your successful surgery!!!

sacket
06-01-2010, 06:05 PM
hello, friends! thank you for following up with my thread and for the congratulations as well.

today has been pretty rough--i've been having EXTREME amounts of abdominal bloating for no apparent reason other than as some weird after-effect of surgery.


I'm a bit concerned about the high dosage of Ibuprofen though, because I thought anti-inflammatories were a no-no for fusion surgery.

uh-oh, something new to worry about! luckily, i have a follow-up appointment with my surgeon this thursday (two days from now), so i will ask him then and hopefully clear this all up.


Are you walking every day? To me, that is the important part about recovery, if you possibly can.

i have been walking every day. i tend to get out of breath and tired quickly, mainly because i am so bloated that i feel about eight months pregnant. in fact, i would say that between the back pain and the abdominal discomfort, the abdominal discomfort is worse. hopefully it'll all get better in time. it has been a struggle just to eat because i feel so bloated. luckily though i have had NO nausea/vomiting to date.


picture your bubble as what is so often left in the clay after a figure is modeled over the armature - the rods and screws, etc. Since you don't have to be "Fired" in a kiln (which would make it explode ) you'll be OK!


nice metaphor. i figured it was just some air that slipped in when my back was opened up, then got trapped when they sealed me up again.


How are you with the computer? I expect with modern PC usage, more guys will develp scoliosis from vairations on the PC sprawl/slump.

i did used to use the computer a lot, though not so much anymore. my posture is probably worse from it, but i never used to lean to one side or anything that would cause scoliosis; at least i don't think i have. i've had slight scoliosis for as long as i can remember; only a few years ago did it get worse, and i'm pretty sure the computer wasn't a factor in its progression.


Rah Rah YOU! (Nosy - what's your major?)


i am double-majoring in food/nutrition and psychology. :]


On the fusing to L4 question, my surgeon did tell me that my L5 disc would likely degenerate over time (he has proposed fusion to L4). I guess they hope that we will just get by, but there is always the possibility of a second surgery.

scary! but i still plan to stay active, and all i can do is hope that orthopaedic surgeons have perfected a minimally-invasive disc replacement surgery if/when i start having problems with l5. :]


My question to you is did you have anterior and posterior?

just posterior. which makes all these abdominal problems all the more elusive...


I'm glad that everything is okay, and 15* is great! That size of curve wouldn't even put doctors in the worry category.

yay! and it may be even less; that was just an estimate from the surgeon when i asked him. when i go in this thursday, i'll be getting my official post-op x-rays from which he'll make a more accurate cobb reading.

thanks all and talk to you soon! i'll let you know how it goes this thursday.

jrnyc
06-01-2010, 07:30 PM
wow.....sacket, i thought you had front and back surgery...so you are that bloated from posterior only!?! i didnt know that could happen!
surgeons are getting better with all kinds of minimally invasive...that they can do minimally invasive approach for lumbar now is amazing to me...i am sure if (though hopefully not) you need more surgery in 20 years, it will be alot better than now...all of medicine seems to be improving...with time...

feel better soon...i hope the discomfort goes away...be sure to ask your surgeon about that, and the meds, on thursday!

jess

LynetteG
06-02-2010, 04:09 AM
I'm 8 weeks post op, and I was terribly bloated and looked pregnant too the first four weeks. Now my stomach is flat. So it will get better :)

foofer
06-02-2010, 09:44 AM
Sackett!

Welcome to the forum, congratulations on your successful surgery, and hello...(just catching up with a couple weeks- you got in on the game just before your surgery, didn't you?)

After reading posts for several months, it sure seems like bloating,etc is just a part of it. By now, you are probably better. Seems like the digestive system and other bodily functions just go on standby, waiting to take their turn.

Anyway, it's nice to see someone just drop in, get operated on, and be fine, so thanks for being here....

sacket
06-02-2010, 01:19 PM
...i am sure if (though hopefully not) you need more surgery in 20 years, it will be alot better than now...all of medicine seems to be improving...with time...


i hope i never need a disc replacement! any tips to guard against disc degeneration? am i too young to start on glucosamine/chondroitin? i'm sure stuff like yoga helps too, but we'll see if i'm even flexible enough for yoga once my back heals.


be sure to ask your surgeon about that, and the meds, on thursday!


yes, i will DEFINATELY be asking about the bloating, the meds, and that mysterious air bubble tomorrow. when i called to schedule my follow up, they originally wanted me to come in on july 1! i said no way! a whole month!? i'm not waiting a whole month to get some answers! so they got me in for tomorrow (thursday), and i consider myself VERY lucky that i have an opportunity to get some of these issues addressed now instead of having to wait in misery.


I'm 8 weeks post op, and I was terribly bloated and looked pregnant too the first four weeks. Now my stomach is flat. So it will get better

yay! this is good to know! finally, once the bloating goes down, i'll be able to ditch the oversized t-shirts! this is a lot to look forward to.


Welcome to the forum, congratulations on your successful surgery, and hello...(just catching up with a couple weeks- you got in on the game just before your surgery, didn't you?)


thank you foofer. and yes, i came in pretty last-minute.


Anyway, it's nice to see someone just drop in, get operated on, and be fine, so thanks for being here....

thank YOU for being here too. :]

sacket
06-05-2010, 05:40 PM
is anybody still around? ;]

well, as you all know, i met with my surgeon on thursday. i am so glad that you all mentioned about the ibuprofen slowing bone fusion--apparently what had happened was that after i said NO MORE NARCOTICS, the hospitalist prescribed me ibuprofen for pain without consulting with my surgeon; i guess she didn't know it could slow bone fusion, and of course i had no idea at the time. but yes, as it turns out, it is a "no-no" for fusion surgeries.

now i am on 1000 mg acetaminophen as needed. my surgeon also gave me a prescription for darvocet, but i'm too scared to take it after all the bad things i've heard and my fear of becoming dependent. plus, i've been off narcotics for this long (i stopped morphine after day 5 in the hospital), so i figure why start up again?

the pain is bearable. i went out to lunch on thursday, and yesterday i went shopping with my family, so i think i'm doing comparatively alright. today i worked out in the garden, and tonight i am cooking dinner for everyone. i bend at the knees and pelvis, and so far that's been working out really well. i also take 1/2 mile walks every day at dusk. i feel fortunate that i can go out at all and that i'm not homebound.

yes, i was fused from t5 to l4. my surgeon says he is glad he fused my thoracic curve as well as the lumbar. originally he'd thought i had a primary lumbar curve and a flexible, compensatory thoracic curve, but once he opened up my back and started fusing the lumbar curve, he realized that the thoracic curve was much more structural than he'd thought. i guess that makes mine a double major curve?

anyway, i'm elated with the result. i got my cobb angles measured on thursday too. he had a hard time measuring them exactly because he said they are almost undetectable. the lumbar curve is only 8 degrees! that's not even considered scoliotic! it feels wonderful to have a straight back. i know i'm taller, but i haven't measured myself yet. i will get back to you all when i know for sure.

my surgeon said the mysterious air bubble should go down in time, but that he wants to do another ct scan in two weeks to make sure. really, though, the last thing i want is MORE radiation. in the past year, i've had three ct scans, dozens and dozens of x-rays, and the fluoroscopy during my surgery. i'm probably destined to get cancer later in life, but that's okay, because i'm not going to worry about that now, and it's not a death sentence.

luckily, the abdominal bloating i complained about earlier seems to be subsiding. slowly. very slowly. today i wore a more fitted t-shirt and didn't look as pregnant. :]

so, barring that weird air bubble, everything is going well, and my surgeon seemed impressed with my relatively quick recovery. i go back to see him on july 1.

hope you all are doing well. have a safe rest of the weekend.

jrnyc
06-06-2010, 09:37 AM
hi sacket
glad you checked out those meds! safe than sorry, etc...

you sound as if you doing fantastically well! congratulations...and keep healing!

jess

Fingers Crossed
06-06-2010, 10:28 AM
Wow! I am absolutely amazed at how well you are doing. Walking, gardening, cooking, etc., and little (if any) pain meds. My 14-year-old daughter is scheduled for fusion on Aug. 20 and I have to say reading about your recovery is making me feel infinitely better. Thanks for keeping us posted.

Also wanted to say "wow" to the help others gave you on the ibuprofen issue. That is such a great example of the power of forums like these to help people navigate the complexities of modern medicine. Amazing!

Jill

mom to 14-year-old with 52+ T curve and 30 (compensatory) L curve; scheduled for T fusion Aug. 20)

JenniferG
06-06-2010, 05:51 PM
Wow Sacket, you're doing so well! I am always amazed at how well young people generally do after this surgery. I am so glad you checked about the ibuprofen quickly. That's the sort of thing that makes this forum invaluable. We can't all know everything, but pretty much everything is covered here.

Congratulations on your new, straight body!

sacket
06-06-2010, 10:57 PM
glad you checked out those meds! safe than sorry, etc...

you sound as if you doing fantastically well! congratulations...and keep healing!

jess

thanks jess!


Congratulations on your new, straight body!

thanks jennifer. and yes, i'm so glad i joined the forum, because otherwise i might've never known about the dangers of ibuprofen with regard to fusion surgery.


Wow! I am absolutely amazed at how well you are doing. Walking, gardening, cooking, etc., and little (if any) pain meds. My 14-year-old daughter is scheduled for fusion on Aug. 20 and I have to say reading about your recovery is making me feel infinitely better. Thanks for keeping us posted.


honestly, jill, i'm pretty amazed too! i must say, at least for me, the most difficult part of my recovery is being able to sleep soundly through the night. changing positions/getting up out of bed is difficult; i wouldn't say painful though. just awkward. personally, i haven't noticed that the acetaminophen helps much. in fact, i haven't taken it in over twelve hours.

from what i've read on this board, the post-op experience is vastly different for everybody; luckily, i'm on the lighter end of the pain spectrum. like i said, for me, getting up from bed can be difficult, but once i'm up, i'm up.

i've been trying to find activities to fill my time each day. today, i transplanted some potted herbs. for tomorrow, i've decided to prepare a five-course dinner for four. i guess the advice i'd give is to try and find activities that are more interactive than just sitting and watching television, because, although it may seem counter-intuitive, doing so really helps keep your mind off your back.


mom to 14-year-old with 52+ T curve and 30 (compensatory) L curve; scheduled for T fusion Aug. 20)

best wishes to your daughter for a smooth surgery and speedy recovery.

sacket
06-09-2010, 12:30 AM
okay, now i am freaking out again!!!

sunday evening, i started experiencing a worrying pain. i am so worried that i might just be deranged. the reason is because it feels like the SAME pain i was having before surgery, except worse, and more throbbing-like instead of a burning sensation. once again, it's centered around my right scapula. it seemed to come on rather suddenly, but it may just be because i've been up standing a lot more this past week (standing up still for longer than five minutes really used to trigger this pain before surgery too).

on sunday night, after showering, i noticed in the mirror that my right shoulder blade is jutting way out. not the whole blade (as in winged scapula), just the lower tip. looking from the left, my back looks normal. from the right, that part of the scapula is an inch or more out compared to the left side.

i am freaking out because i'm fearing the worst: this pain has not responded to the surgery, and i'll have to live with it the rest of my life.

fighting off tears, i investigated the problem further. looking again in the mirror, my left shoulder appears normal, while the right is all slumped forward. i tried physically rotating it around with my left hand, but it won't stay back! furthermore, i am able to reach all around my back using my left arm, but my right arm has very little flexibility, and i have trouble even touching my spine with my right hand. it's not the arm itself; i suspect the limited flexibility is due to the blade being rotated out of place.

worse still, my surgeon is out until next thursday! june 17! what am i supposed to do!? i mean, the physical pain is tolerable (if i make some accomodations and lay around all day); it's just the principle of the same old pain still being there that almost brings me to tears. the psychological weight of the whole situation, i mean. today i've been so afraid to trigger the pain that i've avoided standing as much as possible.

does ANYBODY know what the hell could be going on?!? i don't mean to seem selfish, but this is all i have been able to think about these past couple days, and i don't want to be that way. i know i'm not that way. i'm not a selfish person. it's just SO difficult to distract myself from the shoulder blade pain and even more so from the idea that it could be permanent.

my only theory is that for some reason, whatever muscle that is supposed to hold the shoulder blade back in place, flush against the back, is weak or strained or just not doing its damn job. maybe the serratus muscle? or my trapezius...but only on the right side? i don't know. i'm just so confused/angry/fearful that i can't even think coherently. it's like a freaking laundry list of emotions.

HELP!!! i already called my surgeon's nurse, and it looks like i have to wait until my JULY appointment to speak with him.

jrnyc
06-09-2010, 02:57 AM
hi sacket
couldnt sleep...saw your post..

i remember reading about such pain on forum...searched "scapula pain post op" and found some referring to just that...i think jenparker was one of the patients complaining of it...also you could try reversing search words to "post op scapular pain"...seems the two first words of the search phrase are considered most important...

i hope you connect with answers until you see your surgeon..plus, in the morning, hopefully more folks will read your post and reply...

maybe you could at least get to speak to your surgeon or another one in his office sooner than your next appointment!

i feel bad for you, because you sound a little panicked about this..and i know what worrying and fear can do..especially after a surgery...

best regards
jess

foofer
06-09-2010, 09:25 AM
Hi Sacket,

My immediate disclaimer: I haven't had the surgery and I don't know.

But, I've been on this forum fairly constant since November...watched lots of surgeries come and go, and one thing that is consistent is that everyone has post-op worries about a developing pain of some kind, and everyone worries that it is permanent, more severe than they were expecting- everyone gets a little panic-stricken at some point.

So you put the phone call in to the doctor, and I'm sure you will eventually hear from them and be reassured. In the meantime, this surgery seems to demand "down time" and you may be paying a bit for using new muscles and muscles being rearranged- especially since you felt so well enough to cook and garden and move around a lot. Your doctor made you a new back and it's going to voice its discomfort!

Patience, my friend;).....It will get better. I'm sure you will hear from lots of people today- and if you don't, then start a new thread. I think sometimes people miss some of the emergency posts when they fall under an "older" category, especially when people have time constraints. I miss a lot of posts - as life is a runaway freight train these days. A very good thing for me though- just normal life with too much to do.

Hang in there...and tell the doomsday part of your mind (we all have it) to take a break and leave you alone so you can heal!!

sacket
06-09-2010, 04:32 PM
i remember reading about such pain on forum...searched "scapula pain post op" and found some referring to just that...i think jenparker was one of the patients complaining of it...also you could try reversing search words to "post op scapular pain"...seems the two first words of the search phrase are considered most important...



Patience, my friend.....It will get better.

thanks for the support guys. i'm thinking that this old shoulder blade pain is rearing its ugly head again because i've stopped taking ibuprofen, which seems to have been effective at keeping it at bay for the first couple weeks after surgery. now that i'm just on acetaminophen, it's getting worse every day. today i was just up for about twenty minutes before i had to return to the couch because i couldn't take the pain. i've noticed it even prevents me from standing up straight--the longer i'm up standing, the worse the pain gets and the more i hunch over. putting my shoulders and neck back in order to obtain proper posture only results in searing pain around the shoulder blade.

after some sleuthing, i think i MIGHT know what the problem is...'scapular tipping.' it's an abnormal rotation of the scapula that occurs on a different axis than does a 'winged scapula.' the former is on the vertical axis, the latter on the horizontal. does this sound familiar to anybody?

do you think this is anything that an mri could pinpoint?

anyway, 'scapular tipping' is just my uneducated guess; it could be another problem entirely.

thanks again guys.

Back-out
06-09-2010, 06:24 PM
First off I haven't a clue. You seem incredibly knowledgeable abt anatomy (too knowledgeable? ;))
However, it does seem you may have dxed yourself.

That is, having stopped all pain meds (at your stage this is INCREDIBILE! ...."TOO incredible"?, I ask again), it sounds as if you are responding to pain in three familiar ways.
"Familiar" in terms of this forum and training.

1) It HURTS
2) You panic
3) Because of 1 + 2 you modify things you were doing (here, posture and holding your shoulders in line)
4) This leads to more of 1 + 2 amplified. A feedback loop. Thus, even though it looks like technically four responses, it's really just three.

Don't see how your surgery could fall apart overnight! This stuff is screwed in, man!
However, pain can do all kinds of bad things. Again the postural modification in rx to the pain (and panic) could cause what you've described.

To repeat, YOU said all this, basically. All I'm adding concerns the (black) magic power of pain to be not only self-perpetuating but to have a snowballing effect, mind and body. ESPECIALLY where muscles are concerned FWIW.

I forgot one other outcome after 1 -3. Conclusion drawing. One tends to imagine all kinds of horrific explanations and this can be a nightmare. It's SUCH a shame you can't have your surgeon check out your fears. Meanwhile, hope I don't sound like a pusher, but I think you might benefit from a muscle relaxer and/or tranquillizer (like Valium - which IS a muscle relaxer to boot.).

You sound like an incredibly level-headed young man (in fact, you don't sound your age at all!) . I'm sure if you can stem the (understandable) fear and panic reactions, you can find yourself the right/best answers for how to cope.

I loudly second foofer's advice to start a brand new thread. I'm one of those who passed over this post last night because it seemed non-emergent. I'd just start it where you did including the few responses you've gotten thus far, if possible. If not, you could link them and revise the intro to update yourself.

And at this point, you might as well delay it until tomorrow to get the most attention possible. My 2 Cents. Your cry for help highlights how AMAZINGLY you have handled the whole thing, medically and psychologically. It's SO amazing some of us fogies have trouble identifying at all - exept haha - as moms. :D

Keep on whatever you've been doing, It's clearly working. This reminds me of how important pain meds can be, especially to start, There are risks, sure, but pain has its own side-effects and they are far from benign in the healing process,

(Nb none of this is intended to replace medical feedback on the spot from someone who can examine you. But meanwhile, a good night's sleep can't hurt....as I always tell my own sons. Things really do look different afterward - unless, of course - one hasn't slept. Say, how heavy were those ferns anyhow?!? :p)

sacket
06-21-2010, 02:00 AM
i'm back with an update to let everyone know how i'm progressing.


That is, having stopped all pain meds (at your stage this is INCREDIBILE! ...."TOO incredible"?, I ask again), it sounds as if you are responding to pain in three familiar ways.


funny you should say that, backout. i phoned the nurse early last week because that damn shoulder pain was just getting worse and worse (it still is). i met with the surgeon last thursday, the 17. he put me on pain meds. he put me on a six-day course of methylprednisolone (medrol), as well as a muscle relaxant, robaxin. i am in so much pain and discomfort that i didn't feel like arguing and so i am taking the pills.

as i expected, he can't tell me the source of my pain (NO doctor i've seen has been able to tell me that), but he is starting me on physical therapy (still waiting for the call). sucks, because i did physical therapy last year and it didn't do shit for the shoulder pain. here's hoping this year's course will have a better outcome (somehow).


You sound like an incredibly level-headed young man (in fact, you don't sound your age at all!) . I'm sure if you can stem the (understandable) fear and panic reactions, you can find yourself the right/best answers for how to cope.

thank you for that. although, after over a year of chronic back pain, i am starting to question whether that level-headedness might be slipping away. chronic pain can drive you MAD, no kidding.

so anyway, my surgeon reiterated what i've heard countless times since this whole pain ordeal began, that is, that people with scoliosis have lots of different kinds of pain in different areas. that, of course, does nothing to actually help me. i asked about some imaging on the shoulder, and he said there is no imaging he can do that will clue him in to the source of the pain.

in pursuance of a solid reason behind my pain and insight as to its source, i will probably be making an appointment with a neurologist in the coming days. i've never seen a neurologist before, but it just dawned on me that what i always thought was chronic shoulder muscle pain may actually be nerve pain. after all, muscle pain usually doesn't last years. nerve pain can though. it occured to me that the characteristics of the pain itself (i.e., burning, stinging, and tingling) are way more in line with nerve pain than muscle pain. what do you guys think? maybe he can do some nerve studies or something. anything. i'm just reaching out for help here. it's a little bit too early to give up now.

anyway, so that's what i've been up to. thinking about all this. my next course of action, as i said, is to pursue physical therapy and see a neurologist. i'm just going to open up to the physical therapist about all that's going on. i want him to physically look at the shoulder and see how it is slumped and how the blade juts out and how it generally just looks a mess. i want to outline to him my goals and be assertive about it, too. maybe i'm just not assertive enough with these doctors, but sometimes it just feels like they don't listen. i guess it's not their job to be sympathetic. but i was almost in tears at the surgeon's office last thursday when i was telling him how i can't be up on my feet for more than five minutes without pain. all i could think about at that moment was how i've spent the past year in chronic pain, and how i haven't really LIVED this past year because of it. i couldn't work (i tried). i missed going out with friends and loved ones because i had to stay in bed, lying flat on my back, due to the searing pain. it is so sad that the activities i loved to do most (e.g., work outside, cook, go out with friends, etc.) are the ones that trigger the pain.

and i really thought it was getting better. i really did. things were looking up right after surgery. i was out walking and gardening and all that. i was just elated that the shoulder pain was gone. then the freaking ibuprofen wore off, and i was back to square one, because it came back with a vengeance. the ibuprofen was just masking it. and here i am now...now i lay in bed or on the couch, too petrified to get up because i know the searing pain will start up.

here's hoping that'll change.

i can't put my life on hold any longer!

P.S. i appreciate the suggestion to start a new post, but i guess nothing in my story is "emergent" at this point. it's all old news to me. same old pain, just worse.

jrnyc
06-21-2010, 04:26 AM
hi sacket
read your post with interest....i am sorry you are going through pain...and hope you can find a doctor to help get you some relief!
i see a pain doctor who is a neurologist as well as pain specialist...your pain with tingling sure sounds like nerve stuff...the good part of that is that there are injections and other treatments that can help nerve related pain(as opposed to structural pain)...i have had several epidurals that didnt help..but then i had one this month to treat the worsening sciatica on left leg...and to my surprise, the pain and other symptoms are gone! i really had low expectations for this, because of previous epidurals that didnt help...so i am delighted this one gave me total relief...so far......we'll see how long the relief lasts....

i know well how chronic pain can drive you crazy...it can wear you down til you have no more fight left in you, til you are just exhausted! pain meds are important....
did one of the meds sound like a steroid? the medrol?

the botox shots i get for upper thoracic muscle spasms and knots in my back work great... no shots for lumbar pain do that yet...
best i've gotten for lumbar tx is 4-6 weeks...but we'll see this time for the sciatica...

i hope you find the right pain specialist who will help get you the relief you need!

and the thread...well...the change might be called something about "after surgery pain" or
"post op treatments " or "post op healing"...just suggestions...

feel better...

jess

rohrer01
06-21-2010, 12:14 PM
Hi Sacket,

I just found your post and was going through it to see what I have missed. I'm sooo very sorry you are having shoulder pain. One neurologic study they can to is an EMG to see if your nerve impulses are in proper working order. I've had several of them over the years. They sound horrific, but aren't really that bad. They use very, very thin needles and electrical impulses. I've never had accupuncture, but the EMG is what I imagine accupuncture to feel like.

I have had severe pain episodes for over 25 years so I know what you mean when you say pain can drive a person mad. It is so physically exhausting to be in pain. My doctor also prescribes methylprednisolone (steroid) for my severe pain flare-ups. It helps reduce the inflamation.

Don't feel bad about taking pain meds. I find they are helpful in letting me go about the activities of daily living. I am better off with them because I'm able to get around like most people. Without them, I can not move at times. Laying around without the pain meds I think is worse because your muscles atrophy. It's better to take them (while you need them) and keep strong. Of course, you have just gone through major surgery, so laying around more than usual is in order for you. Your body needs to rest in order to heal.

I hope you get some answers as to why your shoulder is droopy and painful. It does sound like a nerve problem to me, too. The droopiness may be from the muscles not getting the proper nerve signals to be able to function, thus they go flacid and droop. The pain can definitely be from an inflamed nerve. I, too, have scapular pain. This is new to me this year. I get it on both scapulae. I attributed mine to muscle spasms, but now I don't know. My shoulders don't droop, though. Anyway, enough about me. I hope you get some answers and better yet some solutions!

Feel Better Soon!
Rohrer01

Confusedmom
06-21-2010, 08:13 PM
Hi Sacket,

I'm not as experienced as a lot of people on this board (no surgery yet), but it seems like I've seen a lot of people post that things continue to shift after surgery.

I'm wondering if your should might continue to straighten out for a while, and maybe the pain you're feeling right now could be related to some of that shifting. I know some of the scoli books say pain goes up and down for a while after surgery.

Physical therapy is a good idea, but be careful of course of your post-surgery restraints. Also, have they ever done an MRI? I know people with shoulder problems, and I thought that was routine.

Wishing you less pain and more nights where you can cook dinner!

Evelyn

Davis
06-23-2010, 10:51 PM
Was following your thread and noticed that you hadn't posted for a few days. Hope you're doing okay.