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ladare
05-22-2008, 11:26 AM
Hi, my name is Lisa, I'll very soon be 49, and I have idopathic scoliosis with a a lumbar curve of 46 degrees. The curve was increasing at the rate of about 1.5 degrees for 10 years, then it increased 8 degrees just in last year. The pain I experience has become debilitating. I can only stand or walk for about 10 minutes before the pain is excruciating. This pain is in my left buttocks, and my thigh gets numb and weak, and I get pins in needles in my lower leg. Sitting is becoming difficult also. Bending is nearly impossible due to the pain it causes at the apex of the curve. I also have arthrtis in my back, a slipped vertebra, and bone spurs. I'm on Tramadol, but is doesn't even touch the pain, but it does improve my outlook on life. The surgeon has been able to answer a lot of the procedure questions I have, but I still have questions about functionality after the surgery, so I'm hoping somebody with a fusion similar to T8-L5 can share with me what fuctional challenges they have had after surgery. To be honest, one of my biggest concerns is how well I'll be able to take care of myself after toileting. (I'm glad these blogs are basically anonymous... :o I'd also be interested in any other comments anyone has. This is such a huge decision.

Thanks!

Lisa

Singer
05-22-2008, 01:10 PM
Hi Lisa,

My fusion is similar to the one you're thinking about (I'm almost 53). I was able to take care of all my toileting by the time I left rehab (20 days post-op). In terms of overall functionality, I'm not where I want to be yet -- I still can't touch my feet or tie shoes. I'm very stiff and feel just generally clunky (for want of a better word). I had a lot of trouble with the anterior portion of my surgery and it seems to me that people who have a posterior approach only seem to fare better overall. I DID get a great correction, but at what price?

It is a very tough decision but in terms of your pain levels and rate of progression it sounds like you are definitely a candidate for surgery.

ladare
05-22-2008, 01:45 PM
Chris, I made a mistake - my fusion will be the same as yours T10-L5 (not T8 - I hear that is very bad place to end a fusion). But mine will be posterior only, which I know is much better than A/P. Thanks for your feedback. What do you think keeps you from touching your toes, the lack of mobility, or problems with the anterior surgery? I'm sorry to hear you are not where you want to be yet and wish you much progress soon!

Lisa

sparklegirl59
05-22-2008, 03:16 PM
hi i'm val. i don't know, but it seems like your going to need God. He will help you through it all. just pray, and i will be praying too.

you will feel better knowing that God is in control. feel free to pm me anytime you would like too. (i'll be there if you wanna talk. :) ) God bless you, ~*val*~

CHRIS WBS
05-22-2008, 03:33 PM
and it seems to me that people who have a posterior approach only seem to fare better overall.

But for how long? Checking Dr. Pashman's web site yesterday, here's what he says: "The anterior and posterior combination increase the surgical success rate dramatically."

dolores a
05-22-2008, 03:46 PM
hi Ladare

Sounds like you are at the same stage and have the same questions as I do, though you appear to be much more knowledgeable of your condition then I am. I am waiting for my chart from my doctor so I can understand more, all I do know is that I have a 48* lumber curve, and a smaller Thoracic Curve and was told I need the surgery also. It seems that almost everyone has this sciatica thing going on also. I have the same symptoms you described. Did your doctor say at what point you would need surgery, mine said that I should have the surgery before I get into my sixties as the bones might not support such a surgery then. I guess my biggest question is which will be worse, not having the surgery deal with the pain, which I know will get worse, or have the surgery and deal with the unknown of how long it will be to recover.
_________________
Doloresa

txmarinemom
05-22-2008, 03:55 PM
But for how long? Checking Dr. Pashman's web site yesterday, here's what he says: "The anterior and posterior combination increase the surgical success rate dramatically."

I think I'd need to see more evidence than one doctor's statement.

We all know surgeons have different views, and that statement is non-contextual without the TYPE of surgery he means, anyway.

To lend any validity whatsoever to *his* opinion, you'd need several MORE opinions - and more detail.

Regards,
Pam

CHRIS WBS
05-22-2008, 04:08 PM
He was addressing surgical treatment of the lumbar spine.

Susie*Bee
05-22-2008, 04:39 PM
Your mailbox is full... I got interrupted in my way too long PMs to you! :rolleyes:

(BTW--not related to this thread at all...)

Geish
05-22-2008, 04:50 PM
I am willing to share my story. I am fused from T4 to the sacrum so it doesn't get a whole lot worse. I had issues toileting for the first few weeks. I just couldn't reach anything by myself. The Occupational Therapist brought me a tool at about 2 weeks post op and I was finally able to take over toileting by myself. Up to that point I had to have one of my daughters (ages 15 and 20) help me. Let me tell you it is very humbling. After about 2-3 weeks using the tool I had regained enough flexibility to be able to meet all of my needs with out the tool. I think it was sheer determination on my part! I will say that this whole experience has made me a better person and I know it has been a growing experience for both of my girls. I couldn't be prouder of them if I tried. I would be happy to answer any questions you may have. Really nothing you can ask is too personal, just send me an email or PM.
Alicia

txmarinemom
05-22-2008, 05:31 PM
He was addressing surgical treatment of the lumbar spine.

And again ... that's one doctor's view.

debbei
05-22-2008, 05:39 PM
it's one that didn't occur to me yet. SHEESH how humiliating, but I guess I'll have to get over it.

txmarinemom
05-22-2008, 06:20 PM
it's one that didn't occur to me yet. SHEESH how humiliating, but I guess I'll have to get over it.

LOL, Debbe ... I have no doubt it just hadn't occurred to you ... yet :).

Singer
05-22-2008, 07:17 PM
Lisa -- to answer your question, it's my limited mobility that keeps me from touching my toes. I'm very stiff and inflexible around L5 (I have a ton of hardware there) but it may loosen up with time and PT. Some people with fusions to the sacrum are more flexible than I am, so I'm not sure what the deal is. I plan on asking Dr. B. about it at my one-year checkup next month.

loves to skate
05-22-2008, 07:56 PM
Hi Lisa,
Welcome to the forum. In some respects, I'm glad I didn't find out about this forum before I had my surgery because toileting would be one more thing I would have worried about. I was fused from L2 to S1, both posterior and anterior. I had the same symptoms you are talking about prior to surgery for about 4 years. Unfortunately I only found out it was caused by a scoliosis 2 years ago, but that's another story. I had trouble toileting for about two weeks after the posterior surgery. After that it was OK. I can tie my shoelaces if I prop one leg over the opposite knee. I was able to cut my own toenails at about 2 1/2 months post-op by sitting on my bed and bringing my foot up onto the bed (I was so surprised I could do it).
Chris, you just posted while I was in the middle of my post. That is very interesting that some of us fused to the sacrum would be more flexable than those fused to L4,L5. Let me know what Dr. B says.
Doloresa, The bones of a 60 year old plus will support a fusion so long as you don't let osteoporosis take over. The problem at this age is that the Dr. won't be able to get much of a correction.
Pam, You can add Dr. Rand to your list of one who says that he can obtain a much stronger fusion using both anterior and posterior approach for a lumbar fusion, which I believe means less chance for failure. I don't know if age has anything to do with it.
For what it is worth, Sally

txmarinemom
05-22-2008, 08:19 PM
Pam, You can add Dr. Rand to your list of one who says that he can obtain a much stronger fusion using both anterior and posterior approach for a lumbar fusion, which I believe means less chance for failure. I don't know if age has anything to do with it.

I'n not at all against data with evidence, Sally ... only palettes brushed by one surgeon, when they rarely agree on anything! :)

Plenty of people here fused to the sacrum (posterior only) and fused to the same (A/P).

My other thought was some surgeons are more "entrepreneurial" than others - and have websites ...

Another topic ... another post - LOL!

Regards,
Pam

Geish
05-22-2008, 08:28 PM
Let add to my original post...I have crappy flexibility! But I had crappy flexibility before surgery so what did i expect? I still can't cut my own toenails, but it's a great excuse to get a pedicure! I am able to take care of my leg hair, but I have switched to using a hair remover rather than a razor. Too afraid I will cut my self badly and bleed to death by the time my girls figure out the razor slipped :eek: ( that really was said tongue in cheek, but seriously I am afraid of cutting myself.) I can't quite reach my whole lower leg and would rather scrape hair remover off and then use a spongy thing for the shower to finish the job. I have no problems tying my shoes, but I still can't buckle shoes at the outside of my ankle. Go figure!

txmarinemom
05-22-2008, 08:35 PM
Let add to my original post...I have crappy flexibility! ... I have no problems tying my shoes, but I still can't buckle shoes at the outside of my ankle. Go figure!

You, my dear, are ALSO part of the December *2007* bunch. Must I keep reminding you? LOL!

It's only May 2008, hon. You had surgery 6 months ago.

Remind me when *I'm* doing the same early August!

Regards,
Pam

Geish
05-22-2008, 08:59 PM
You, my dear, are ALSO part of the December *2007* bunch. Must I keep reminding you? LOL!

It's only May 2008, hon. You had surgery 6 months ago.

Remind me when *I'm* doing the same early August!

Regards,
Pam

Yeah, yeah...I know! And yes you must keep reminding me! :D

leahdragonfly
05-22-2008, 10:07 PM
Lisa, I share some of your problems and was recently seen in Portland. I am sending you a private message.


Gayle

Chihuahua Mama
05-22-2008, 10:54 PM
I am willing to share my story. I am fused from T4 to the sacrum so it doesn't get a whole lot worse. I had issues toileting for the first few weeks.

Sweet God are you kidding me right now??? "Toileting"? I am already on Scoliosis Surgery Overload now, but if WIPING ONESELF is an issue, then I need to made a whole different game plan. Very different and perhaps I should just realize I'm not a candidate for this type of surgery and recovery.

debbei
05-23-2008, 06:27 AM
LOL, Debbe ... I have no doubt it just hadn't occurred to you ... yet :).

Amazing isn't it? You are just getting to know me and already understand that my mind gets really carried away sometimes. :D

So last night (LOL) when I was ON the toilet, I tried to pretend I was immobile in my spine and tried to figure out if I could 'reach'. OMG I horified myself.

Susie*Bee
05-23-2008, 07:01 AM
Susan-- (and others) don't panic yet! :eek: It's a little tough, but usually still do-able. My impression is that it (wiping!) is hardest when you have a really long fusion, like Geish said-- and mine is T2-L4... there is just no "give" at all in your back-- and pardon my saying so, but it's a l-o-n-g reach to wipe... if only our arms could grow at will! :rolleyes: They pushed me to do it myself (almost always) in the hospital and I never asked for help at home, although I'm with Geish in saying that was through sheer determination. There are little tools to hold the TP, if needed, that extend your reach. I never got one, and have managed. I found that if you squat slightly, that shortens the reach just a tad. :o Hate to sound gross, but you asked... BTW, it has hardly gotten any easier for me, and I'm at one year now. I don't have the back pain like I did back then, so that makes it better. I guess the difficulty is good in the sense that my fusion is still holding solid, so I'm still as long and inflexible!

I cannot cut my toenails--but my hubby can. I can pull my right leg up over my left, but still can't hold clippers steadily enough plus reach, to clip ALL of my toes. It doesn't matter anyway, because I can't do that at all with my left leg. There's something wrong with my hip I guess. I've always (since high school, anyway) crossed my legs right over left and can't do the reverse... Someday I may try to get a pedicure so my cuticles can get some attention, but for now it's ok. I, too, am afraid of cutting myself shaving, and I couldn't reach it all anyway. I opted for an electric shaver, thinking I'd have hubby help. The nicer ones they have these days do a good job. (Razors, not hubbies!!! ;) ) After the first time, when he managed it in about 3 swipes, I figured I could do at least that well. By putting my foot on the toilet and squatting slightly to reach the lower parts of my leg, I can manage ok. I bought one of those lotion applicators (slanted end with a sponge applicator, with a long handle) and that makes it so I can put lotion on my back and legs fairly easily. I gave up on wearing shoes with laces, so I don't know if I can manage that now or not, but I doubt it. I was able to find slip-on athletic shoes, etc., and they work just fine and I don't need help. So all my shoes are slip-ons of some sort. I'm really wondering if I'll ever be able to put on pantyhose. Does anyone out there with a long fusion manage doing that???? I use a sock-aid to put my socks on-- and it's second-nature now. I just can't reach down to my feet... Guess that's about it for my comments-- other than I can't foresee any of this getting better (because that would mean something's going wrong with the fusion or I'm putting too much strain on the verts just above and below)-- but you adjust and find alternative ways to do most things. The price you pay for stability and correction, but worth it.

jillw
05-23-2008, 07:29 AM
A potential suggestion re: toileting for those who don't want to rely on another in the beginning. I was thinking of the plastic squeeze bottles they give women after they have given birth...you fill it up with water and a little witch hazel and then after you go to the bathroom, you just spray from the front aiming back. You could do it sitting perfectly straight. Then no matter what function has just been finished, you are clean (probably cleaner than the traditional toilet paper method!) Of course you are still wet, but you can sit for an extra minute or 2 to air dry (just don't sit so long your legs fall asleep!) or maybe put a pad or liner in your underpants to absorb the excess H20/witch hazel. This doesn't address the issue of physically getting on and off the toilet , but if you have your bottles ready you can at least clean yourself without another's help.

Geish
05-23-2008, 08:38 AM
Well I didn't mean to scare the "crap" out of anyone, but again you asked so I told. Wiping really is the issue. I was able to pat dry in the front after a few days. Cottonelle Flushable Wipes are a godsend. Yes the tools they give are a huge help but I gave mine up as soon as I could. About 3 weeks after I started using it. I culdn't imagine having to take it with me everywhere just in case so I made myself learn how to handle it all by myself. Remember your torso will grow and your arms won't so yes it will be difficult at first. But really it will all be okay.

And FYI I was able to put pantyhose on on April 8th, 2008 by myself! It was a total pain in the rear but I managed. I used my sock put-er on-er and got those darn things on. I had an audition for Camelot and was trying to look nice. I got the part of Morgan La Fey (I really wanted her because I wasn't sure how my movements were going to look on stage and my singing isn't back yet. It still hurts to give full support in my lower back.) I found the best sock aid is a soft trifold one with long straps. I don't need mine anymore, but I keep it around just in case.

Susie*Bee try putting your foot up on a stool to tie your shoes...I bet you can do it!

trulyaries
05-23-2008, 09:31 AM
I'm fused from T4 to sacrum, although it took 4 surgeries to get there. The first three were posterior only, the final surgery (I hope) was anterior because the last posterior surgery wasn't holding me upright (see my signature info). The anterior procedure seems to be doing the job and at 3.5 months I'm doing quite well. So at least in my case, the combined A/P procedure is proving to be stronger.

Re toileting, I have extra long kitchen tongs that I used immediately after surgery to hold a wad of toilet paper. It was awkward, but do-able. It didn't take that long (maybe a month?) for me to be able to reach without help. I never had anyone help me. I had a pedicure before surgery and I'm now able to cut my toenails by lying flat in bed and bringing one foot over the other bended knee. I can raise my feet enough to tie my shoes, although the tie is sort of at the side of the shoe instead of on top, but who cares?? It took me awhile but I can now shave my legs. Fortunately, I'm not very hairy these days and what's there is light, so I don't freak out if I'm not baby soft and smooth!

I agree with Susie - you adjust and find alternate ways to do things and the tradeoff in eliminating some/all of your pain and suffering is worth it. I know I look like a beached whale or worse when I'm doing things, but I don't sweat the small stuff. :)

Wishing
05-23-2008, 09:53 AM
Because of my severe scoliosis, my torso is really short and my arms hang down almost to my knees. Even with a decent correction, my arms should be plenty long. I'm looking on the bright side, I guess.
Rita

CHRIS WBS
05-23-2008, 11:10 AM
I will definitely ask my surgeon about his decision now to do just posterior, especially since I am an older adult with a very big curve that requires a fusion to the sacrum. His initial recommendation was A/P from T4 to the sacrum. Felicia, I do not want to experience what youve been through the past eight years, if it can be avoided. Out of curiosity, is your surgeon on the youngish side? Im in total concurrence with Dr. Pashman when he states, The determination of which vertebrae need to be fused takes skill and experience. Incorrect choices of fusion levels can sometimes lead to unbalanced spines and further surgery if an un-operated curve progresses.

I think Im on the brink of having a nervous breakdown.

CStadler
05-23-2008, 11:17 AM
I too had similar pain before surgery that was so debilitating I couldn't stand for more than about 10 minutes.

I am 53 and my fusion is T8 to the sacrum. I didn't have any trouble with taking care of all my own toileting needs even in the hospital. You'll be amazed at how with a little imagination you can do much more than you would ever have thought possible.

Functionally, at 9 weeks post-op I can only reach down to my knees...so far. I can tie my own shoes, shave my legs, drive, get groceries and do most light housework. This is however my second surgery and I wasn't quite that quick to do this much after my first surgery in Sept '07.

The most important thing is that I don't have any of that horrible pain I had before my surgery. The pain I have now, of course, is from the surgery and will take time to go away and with that you have to have patience but I am positive it will be worth the year or so out of my life to be rid of that pain.

I don't regret the surgery one bit!!

Good luck, Carol

dolores a
05-23-2008, 06:07 PM
hi Lisa,

I guess my question is, if the spine surgeon said i need this surgery done and not to wait until I am in my sixties, (I am 54 yrs. old) what exactly does that mean. I know I have to speak to him again, and also get another opinion, but I wonder should I just take the next year and get myself in good shape physically, i.e. swimming, quit smoking, take my calcium more religiously, eat better etc.. and just get on with the surgery or wait another two or three years. I am very consumed with this right now. Maybe when I get the 2nd opinion I will be more informed, especially being in this forum and know what questions to ask!

Dolores A

trulyaries
05-23-2008, 06:11 PM
Chris WBS -
My experience was unusual; certainly not the norm. My first surgery was the longest fusion -T4-L4. I had no problems for 5 years, then developed spinal stenosis and had additional lumbar fusion. I asked why the surgeon wasn't going to the sacrum at that time and got the same answer I have heard many times: "we don't like to do more than we have to." I continued to have problems and when my surgeon said "everything looks fine" I said "buh-bye" and sought out other opinions, all of whom told me my lumbar area never fused! My last two surgeries were done by a new surgeon who I like very much. When I first saw him, we did discuss A/P procedures, and he said the same as above: "we don't ... blah blah." But he did acknowledge that occasionally an additional anterior procedure might be necessary, which it was. (My primary physician, who did my pre-ops, was shocked that a second procedure was necessary. He said my surgeon is top notch and it was very rare for him to have to do an additional surgery. So I don't think it was him; it was my lousy lumbar!)

I'm guessing, but I believe the first doc is in his late 50s, the second one mid-50s. Both have excellent professional reputations, although the first one has absolutely no personality or bedside manner.

I trusted my surgeons' opinions regarding recommended procedures and I would have found it very difficult to insist on a procedure contrary to what they thought was the best approach, especially at the beginning of my journey. My only regret is that I didn't find the SECOND surgeon before the first one.

You just can't make yourself sick worrying about what MIGHT happen. And I don't think it's productive to try to second-guess the surgeon. Just my opinion.

Chihuahua Mama
05-23-2008, 08:22 PM
But for how long? Checking Dr. Pashman's web site yesterday, here's what he says: "The anterior and posterior combination increase the surgical success rate dramatically."

I think, based on my consult with Dr. Pashman, who is the busiest spine surgeon in California, that statement is accurate FOR ME and has everythinig to do with other conditions of the spine, not just scoliosis. I have DDD, stenosis and spondylo-however-it-is-prounounced. Because of all those factors combined, an anterior/posterior approach will absolutely increase my surgical success. I have 3 bad discs that need to go at L1-4. But that statement (Pashman's) may not be true for everyone.

So, I also agree with txmarinemom that it depends on the surgeon.

Neither opinion is absolute. What I've learned so far is that there are few "standards" in this surgery. It's all about you, your pain, your surgeon and most, your trust in your surgeon. You have to do your homework and pick the best.

Chihuahua Mama
05-23-2008, 08:51 PM
Well I didn't mean to scare the "crap" out of anyone, but again you asked so I told. Wiping really is the issue. I was able to pat dry in the front after a few days

Well, it DID scare the crap out of me, but anymore? I'm pretty easily scared! I did slightly over-react (yah, think??) last night...all in one day, I changed surgeons, scheduled my surgery (anterior 6/16 and posterior 6/23...one week apart) and gave notice of surgery at work.

Too much for one day. My apologies to all. I very much appreciate the information, even the crappy stuff.

Sigh...thanks to the veterans ofscoliosis/fusion surgery for their patience with us pre-surgery patients. I did freak right out and expect it won't be the first over the next 3 weeks. I feel sorry for my family.

Geish
05-24-2008, 08:57 AM
LOL Don't worry about it...It's what we are all here for. To learn and to share and to help if we can.

It's kind of funny, but I never had a moment of panic or worry. I just knew I needed the surgery and put complete faith in my surgeon (Thank you Dr Ganocy) knowing he would make the decisions that were right for me. I even told him before he wheeled me into the OR, after he let me know he wasn't sure if he could stop at L4, "when you are in there and see what's there, do what you would do if I was your wife. Give me the same medical treatment you would want for her." He did end up going to the sacrum and I have no regrets.

So keep asking those questions and we will help all we can!
Alicia

Singer
05-24-2008, 10:33 AM
Chi-Mama and others, the thing to remember about this surgery is that from where you sit NOW, with your wits about you and pre-surgery, the thought of someone else wiping your butt is horrifying. But after surgery, you are so affected by the drugs and by the intensity of the whole experience, you are very desensitized to these types of things. I honestly wouldn't have cared if the Prince of Wales wiped my butt by the time I was fortunate enough to poop!!!!

There's just no way to project how you will feel about anything post-surgery. It's an unknown adventure.

ladare
05-24-2008, 10:44 AM
Wow! I had no idea my question would generate so much discussion, so much useful information, so much insight into the experience of others with scoliosis. Thank you all for sharing so much! I'm really impressed how interactive and supportive this forum is. Contemplating this significant surgery can be so overwhelming, and I was feeling VERY alone in my situation. Now I don't feel alone at all any more. You are all wonderful, courageous, honest, determined people. Honored to be in your circle! I'm scheduled for another MRI on 5/29 and we'll see what the doc has to say then.

Lisa

ladare
05-24-2008, 10:57 AM
hi Lisa,

"...I wonder should I just take the next year and get myself in good shape physically, i.e. swimming, quit smoking, take my calcium more religiously, eat better etc.. and just get on with the surgery or wait another two or three years. I am very consumed with this right now..." dolores A

Delores, I do believe that getting as healthy as one can get before surgery is a very good thing to do, especially since this type of surgery and recovery is not insignificant. I've tried to get as fit as I can (with some success), but the pain really prevents me from doing anything anymore so it would be a wasted effort to pretend I would do any better in the next year. I would think that quitting smoking would probably be the most beneficial before surgery (and understandably probably the hardest to do...). For me, the pain is overriding every reason to postpone the surgery for me.

Geish
05-24-2008, 11:03 AM
Chi-Mama and others, the thing to remember about this surgery is that from where you sit NOW, with your wits about you and pre-surgery, the thought of someone else wiping your butt is horrifying. But after surgery, you are so affected by the drugs and by the intensity of the whole experience, you are very desensitized to these types of things. I honestly wouldn't have cared if the Prince of Wales wiped my butt by the time I was fortunate enough to poop!!!!

There's just no way to project how you will feel about anything post-surgery. It's an unknown adventure.


Now I know I would have been very excited if it was Prince William! He's a hottie! Could that be arranged? LOL

Susie*Bee
05-24-2008, 12:23 PM
Geish and Singer-- you both had me laughing pretty good... :D

Ladare--you got plenty of responses because this topic (especially the "wiping" aspects :eek: ) hit a nerve with so many and opened up a sensitive subject... then the discussions get pretty interesting! ;)

Dolores-- Lisa is right in saying it (getting in shape) depends on how immediate/debilitating your scoli situation is. Here are some suggestions for getting into shape (of sorts) when facing surgery "down the road" but not necessarily years away. These are relatively mild...

Exercise-- work on arm and leg strength, not your back. Work on being able to squat down--and get back up! :o Some people do this all the time, others (like me) haven't in years -- or is it ever???? :rolleyes: That's what I've been working on big time, for the past 6 months. Your arms and legs will be doing much of the work during recovery and beyond, and if they are weak to begin with, it makes it hard. Try to do some kind of cardio exercise, as that gets your heart in shape for the surgery. Fast walking or bicycling, etc. If your back is too achy or your joints are bad, see if you can do a recumbent bike somewhere, as that's easy on you.

Food-- Losing weight (if needed) isn't as important as eating nutritionally -- you can do both, but you sure don't want to enter surgery and recovery without having had all the pluses that a sound diet gives in the way of vitamins, calcium, protein, etc. That goes for skinny people too. Eat well in the months leading up to surgery. Same with post-op, of course. Taking a vitamin supplement is good, but nothing like eating the real thing through real (and preferably fresh) foods.

Meds-- again, a vitamin supplement is good. If you are doing autologous blood donations, they will have you take iron as well, but they'll tell you about that. I also took/take two (2) 600 mg. calcium with vitamin D tablets daily-- and my scoli doc told me to take a bone strengthening med right after he first saw me 3 years ago, so I have been ever since. My family doc prescribed Evista.

Smoking-- quit! I know it's tough. I smoked a LONG time ago, for about 15 years. There are many "helps" available nowadays to help you quit. Some surgeons won't even operate if you're a smoker. There's a correlation between smoking and failed fusions. You REALLY don't want to go through the ordeal of this surgery and recovery and not have done all you can to prevent failed fusion (pseudarthrosis). We older scolis have a higher chance of it anyway. Make sure your scoli doc knows you smoke and see what he/she says.

PROBABLY what your doctor meant about not waiting till your 60s has to do with the fact that in general, as we age, we decline in our endurance capabilities for such a huge surgery... this is BIG trauma to our body, our heart is put under duress, our bones will probably be more brittle and harder to work with, we lose more flexibility so it is harder to get correction, we may have developed other problems-- DDD, stenosis, listhesis, etc., complicating things. In other words, there are greater risks and possible complications. Best thing to do is to ask him/her next time you're there what he meant. I thought I was in fairly good shape at 56, as I've been really active, but discovered this was pretty debilitating for me. Everyone is different. It's not a walk in the park for anyone, at any age. But the younger you are the better off you'll be. Of course, there are some in their 60s-- and even older, who have done extremely well.

I am still torn about my decision. (NOTE: of "WHEN", not "IF"!!!) I knew I would need to go back to work for a few more years and had planned to go back last August (I'm an elementary school librarian)... but just was not able to. I REALLY wish I could have waited till I retired, but, like ladare, knew I needed to go ahead with this as it wasn't going anywhere but worse. It would have been so much more convenient if I could have been DONE with working...!!! Now I have to go back to work this coming August, and I am not looking forward to it-- I know it will be pretty rough. At least I think it will be. ;) I guess time will tell. Regardless, I know it was best for me to do it when I did...

Best wishes in figuring out what is best for you. And it's really good that you are wondering what to do to get ready and all. I think you'll do fine. :)

loves to skate
05-24-2008, 03:42 PM
Another suggestion for exercise before surgery is water aerobics or just swimming. It is not hard on any joints. The chlorine in the pool may be hard on the skin though. Sally

txmarinemom
05-24-2008, 06:49 PM
...I wonder should I just take the next year and get myself in good shape physically, i.e. swimming, quit smoking, take my calcium more religiously, eat better etc.. and just get on with the surgery or wait another two or three years.

Dolores:

I'll be 40 in just a few months, and I smoked for 24 years.

I watched my Dad die of lung cancer, I watched what it was doing to my face, I knew I was pissing money away every time I bought a carton ... and still I smoked. Only when my oldest child picked it up did I say enough. I know how hard it is to get there. I haven't had one single puff since September 25th, 2006.

IMHO, you're wasting your time and money to even *consider* fusion surgery until you've quit smoking - and I mean QUIT ... not just a month or two. I did THAT too many times to count.

Fusion failure is a big concern from smoking, but it's not the only concern, by far.

Here's a link to the intro of an article on spine-health.com and the issues it points out:

Quitting Smoking Before a Spinal Fusion (http://www.spine-health.com/Wellness/Stop-Smoking/Quitting-Smoking-Before-a-Spinal-Fusion.html)
By: William W. Deardorff, PhD, ABPP
March 17, 2008

An extensive amount of research has firmly established that cigarette smoking is bad for patients undergoing lumbar fusion surgery. But just how bad is smoking? How does it impact a spinal fusion? What do I need to know to help my chances of successfully quitting smoking? This article addresses those questions and more.

Smoking causes a number of significant problems for patients undergoing spinal fusion including the following:

A significantly decreased rate of successful fusion (called non-union or pseudoarthroses)
Markedly poorer clinical outcomes (i.e. pain reduction) regardless of whether or not a successful fusion in the spine is achieved
Poorer functional rehabilitation after surgery
Lower overall patient satisfaction with the spine surgery


While not specific to scoliosis, another article related to spinal fusion gives you an idea on the percentage of failed cervical fusions ... and name yet another increased risk associated with smoking - post-op infection:

Cigarette Smoking and its Impact on Spinal Fusions (http://www.spineuniverse.com/displayarticle.php/article834.html)
Larry Davidson, M.D.
(Last Updated: 08/13/2007)

Cigarette Smoking and Failed Fusion

Certain factors have been found to affect the success of spinal fusion. Some of these factors include the patient's age, underlying medical conditions (e.g. diabetes, osteoporosis), and cigarette smoking. There is growing evidence that cigarette smoking adversely affects fusion. Smoking disrupts the normal function of basic body systems that contribute to bone formation and growth. As mentioned previously, new bone growth is necessary for a fusion to heal.

Research has demonstrated that habitual cigarette smoking leads to the breakdown of the spine to such a degree that fusion is often less successful when compared to similar procedures performed on non-smokers. In a study of patients undergoing anterior cervical fusion (fusion of the neck), it was observed that smokers had an increased rate of nonunion (up to 47%) as compared to non-smokers.1

Another study evaluated tobacco use in patients who underwent lumbar (low back) fusion. The patients who smoked had failed fusions in up to 40% of cases, compared to only 8% among non-smokers.2 Similar findings have been reported in other studies as well.

Post-Operative Infection

Cigarette smoking compromises the immune system and the body's other defense mechanisms, which can increase the patient's susceptibility to post-operative infection. A study conducted by Thalgott et al showed that cigarette smoking was a risk factor for infection following spinal fusion.3


References
1. An HS, Simpson JM, Glover JM, Stephany J. Comparison between allograft plus demineralized bone matrix versus autograft in anterior cervical fusion. A prospective multicenter study. Spine 1995; 20: 2211-16.
2. Brown CW, Orme TJ, Richardson HD. The rate of pseudarthrosis (surgical nonunion) in patients who are smokers and patients who are nonsmokers: a comparison study. Spine 1986; 9: 942-3
3. Thalgott JS, Cotler HB, Sasso RC, LaRocca H, Gardner V. Postoperative infections in spinal implants. Classification and analysis -- a multicenter study. Spine 1991: 8: 981-4.


Yes, bone growth stimulators can attempt to combat pseudoarthritis, but that's not the only issue.

As far as getting shape pre-op:

I HIGHLY advise it. Your body will adapt better, you'll heal faster, and you'll have a much easier surgery AND recovery.

The argument can be made the younger you have the surgery, the easier time you'll have. If you can do all you outlined in a year, why wait another 2-3 years? You still have to do the same things to give yourself the best chance of successful recovery - and a year is ample prep time if you're motivated.

Best regards,
Pam

dolores a
05-25-2008, 03:04 PM
Thanks Pam,

Your post was very enlightening, I know that I have a lot to accomplish in the next year! Your post very much sent home the message about quitting my smoking habit. I actually have tears in my eyes because I know I have to this for me and my family. Your post was very informative, not that I don't already know the affects of smoking, but to have someone that does not even know me would send this message really was very encouraging, thank you, thank you! Quitting is going to be my mission, as I know when I get my second opinion, it will be that I will need this surgery. So I might as well accept it and get on with it.

Thanks again,
Dolores

dolores a
05-25-2008, 03:07 PM
Thanks to all who who posted, you all will be probably be my incentive to stop!!!

Dolores Angel

txmarinemom
05-25-2008, 09:15 PM
Your post was very enlightening, I know that I have a lot to accomplish in the next year! Your post very much sent home the message about quitting my smoking habit. I actually have tears in my eyes because I know I have to this for me and my family. Your post was very informative, not that I don't already know the affects of smoking, but to have someone that does not even know me would send this message really was very encouraging, thank you, thank you! Quitting is going to be my mission, as I know when I get my second opinion, it will be that I will need this surgery. So I might as well accept it and get on with it.

I know exactly what you're going through, Dolores ... it's tough, but you can do this! And the sooner you cross this bridge, the sooner you can have surgery and reclaim your life.

Feel free to email me if you'd like - and I'm even open to phone calls. In addition to being ready to quit, a strong support group and visualizing myself as a non-smoker (I never had on previous attempts to quit) really helped. It seemed I always had some reason I couldn't quit *yet* ... a party to attend, stress at work, New Year's Eve, etc., etc ... the list was year 'round. I had always found it impossible to drink at ALL without smoking, and really thought that would be the worst part. I was amazed it wasn't at all when I finally decided to stop.

Of course I know you already knew smoking wasn't healthy - surgery or no surgery. It was something I knew too - yet continued to do it (even after knowing my risk of lung cancer increased exponentially with my Dad's diagnosis).

My actual quit date was Sept. 22nd, 2006 (but I don't count it as the "real" one ... I tried cold turkey for the first 3 days - and cheated 6 times).

From previous attempts, I knew the patches gave me horrible nightmares (even when removed before bedtime - and I have such a screwy sleep schedule *anyway*, bedtime is just hard to predict), and the gum KILLED my TMJ.

The lozenges turned out to be a great option for me. I started using them (at that time, they were reimbursable under my flex spending plan) Sept. 25th, 2006 - and was down to one 4mg a day (split into quarters) when I first saw Hanson Oct. 9th, 2007. Yes, I still was using the lozenge (teeny bits) as a crutch more than a year after I quit smoking - but whatever works, works. And it's a hell of a lot better than smoking: I didn't stress over it and neither did Hanson.

I'd discontinued them completely for at least a few months prior to surgery.

Several friends of mine have tried Chantix, and I'd say it had emotional/mental effects on almost all of them. It's not a drug to be taken without some serious investigation. BTW, none of them successfully quit, either. I think people who go that route are looking for some easy fix, and no matter which path you take, it is a struggle with willpower. Unfortuntely, there is no magic "cure'.

In pulling that information on smoking/fusions, I learned some things. I never knew the risk of post-op infection increased, nor the poorer clinical outcomes, rehab outcomes, etc.

I appreciate your sweet note, but don't ever feel ANY of us on here who willingly take the time to help another member (new OR old) are "strangers". We're all bound by this beast, and many of us fight the same battles (besides the obvious of a common enemy). If we can't take what we learned/experienced and at least try to make things easier for someone else, it makes what WE went through feel without purpose - if that makes sense.

Trust me ... stick around, and you'll have the opportunity to pass it along :).

Hang in there, hon. Buzz me any time.

Best regards,
Pam

Peachy
05-26-2008, 04:40 PM
We're all bound by this beast, and many of us fight the same battles (besides the obvious of a common enemy). If we can't take what we learned/experienced and at least try to make things easier for someone else, it makes what WE went through feel without purpose - if that makes sense.




Pam, yes, that makes perfect sense! You put into words what I have felt....we're all bound by this scoliosis beast! Until the past year, I had never actually met anyone who had gone through what I did while growing up with scoli; I thought I was the only one! I have often thought of it as a "beast" attached to my back, forcing me more and more out of shape.

Fortunately, I now know I'm not by myself, and I've found that something CAN be done about what I've lived with so long. Somehow, sharing our experiences with others who've been through similar things does make it a little easier. That's why I'm so grateful for this forum!

Peachy
80 degree curve

debbei
05-26-2008, 08:18 PM
Fortunately, I now know I'm not by myself, and I've found that something CAN be done about what I've lived with so long. Somehow, sharing our experiences with others who've been through similar things does make it a little easier. That's why I'm so grateful for this forum!


Peachy,
So well put, that's exactly how I feel. You are all the best. If not for this forum, I'd probably drive my real-life friends/family insane. :)