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Confusedmom
05-17-2010, 03:46 PM
Hello all,

I am new to the Forum and would love to have feedback from those of you who have more experience with this. I apologize in advance for the lengthy question/explanation.

My regular doctor advised surgery several months ago due to significant progression of my curve(s) in adulthood. I am 38 years old with a 67* thoracolumbar structural curve with significant rotation and a 49* thoracic compensatory curve. This has progressed from 55* at age 33 and 33 degrees at age 22. I am not in much pain, just your basic fatigue at the end of the day or after standing too long.

I finally said "uncle" and decided I would have the surgery to prevent future complications, which were explained to me as progressive deformity, potential organ failure (kidneys and gastrointestinal since mine is a lower curve) and increasing lower back pain and disc instability.

As part of the process I got a second opinion from a doc who says actually he would wait and allow my curve to progress further. Since I am not in signif. pain and I don't face cardiopulmonary issues, there is no harm in delaying, according to second opinion. Also both docs said because of the need to fuse to L4 or L5 I am at significant risk for lower back pain after surgery as well as long term disc issues.

This is a good time for me to have surgery if I'm going to have it because I still have help (my mom, age 67 and in good health) and my kids are 4 and 7, so not too much carrying. I worry that if I put it off I won't have someone to help me and may even be taking care of others (in-laws are elderly). Plus right now I'm a stay-at-home mom and in a few years I might go back to work.

On the other hand doc #2 says there is a small chance I will never need surgery. So obvioulsy I don't want to go through this if I don't have to.

How do you make these decisions? And what's up with doctors disagreeing so much? What is the real risk for someone with a lower curve? I am getting conflicting information on the organ squeeze issue. And finally, is the compensatory curve likely to become structural and result in cardiopulmonary issues? I can take deformity but would rather address it now if it is eventually going to become life threatening! Would love any input.

Thanks in advance!

Nitram
05-17-2010, 04:58 PM
Hi there, I completely undersand what a difficult decision this is. I'm about 2 months post-op and wouldn't change a thing. I, like you, had very little pain or real issues with my curve, however my curve was clearly progressing with no signs of it letting up. My doc, and the doctor I got a second opinion from, said there was no huge rush, but they both agreed that surgery in the next 1-2 years was needed. For me, I made up my mind when the doc said it was time I wouldn't hesititate to get it done. My doc followed my progress for several years before saying it was time for surgery so I was confident he wasn't rushing to cut me open. Honestly, the surgery is no walk in the park but its not nearly as bad as I expected it might be.

Rich

jrnyc
05-17-2010, 05:52 PM
hmmmm...dont understand the disc problem...do you have disc problems now? if so, i would think they would address that during surgery...?
i need fusion T11-pelvis, and they will, if i have the surgery (minimally invasive approach) "clean out the discs and put spacers in"...
if you dont have disc problems now, why are they predicting that you will?
perhaps another consult with another surgeon is in order..?

jess

Vali
05-17-2010, 07:05 PM
Hi and welcome to the forum. Are these two doctors, Scoliosis surgeons? I ask because I have to wonder how two opinions could differ so much. I had three opinions - 2 spinal and 1 neuro. No.1 spinal said he didn't know where to start and No. 2 spinal and neuro agreed on the levels and that it should be done in the next 12 months. (Surgery was June 1st, 2009) The reasoning for this was because i had gone from 50 degrees in June 2008 to 58 in March 2009. Progression was roughly 1 degree per month. I had really bad pain consistently. I also had a tear at i think L4/5??? The other thing they mentioned was the possibility of me going into menopause and developing osteoporosis if i waited so much longer. It is almost 12 months since surgery and i am ever so grateful to my Doctors for giving me my life back. I suggest seeking maybe one more opinion. Help is definitely needed in the early stages and if you are looking to return to work, at least you would have had at least 12 months or more to rcover properly without the pressure of recovering quickly just so you can return to work. I wish you well in your decision making and if you have any further questions, please ask. The members on this forum are awesome and i'm sure that with a little bit of evveryones personal experience, it may help ease your mind. Have a nice day:)

LynetteG
05-17-2010, 08:52 PM
I'm also interested to know if you saw scoliosis specialists? I think if it were me, with such differing opinions, I would seek another opinion, and definitely from a scoliosis expert!

TiffanyK
05-17-2010, 09:29 PM
I agree with others on getting another opinion, and with a scoliosis surgeon. My first two surgeons had conflicting opinions and the second surgeon actually requested for me to seek a third opinion. He literally said it would be a "tie breaker". However, my third opinion didn't necessarily match either of the first two. I chose to go with my lucky "third times the charm" opinion. I'm scheduled for surgery on Aug. 5th.

It's not easy making a decision and no one can make it for you. The reasons I decided to do the surgery now are very close to some things you mentioned. My daughter, now 3, is potty trained and doesn't need to be carried anymore. Right now I can't have another baby until my daughter goes to school so it's a good time for me. Plus, I have support from family. Rationally these were very good points in my mind, but what tipped the scale for me was this knowing feeling inside that this is what I was supposed to do.

Just as a side note, my second opinion said he would have to fuse me from T4 to L5. My surgeon (third opinion) will be fusing me from T1 to L1.

LindaRacine
05-17-2010, 10:57 PM
Hi...

I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

Regards,
Linda

Back-out
05-17-2010, 11:52 PM
Confused,

I'm especially interested in your dilemma since my own curves are less than yours, though I have significant pain and also lumbar kyphosis.. You are confirming my suspicion that my primary pain is not so much from the scoliosis as the severe lumbar disk degeneration and kyphosis ("poor sagittal balance" I think it's called, if I'm learning the lingo).

Which brings me to my constant fear that the surgery may not relieve the pain or even make it worse. I know everyone fears that (especially knowing that those ARE real possibilities). In my case, I worry that it may be because the disk damage has already occurred. Wish I could post the Xrays as compared to a "normal" Xray LindaRacine posted recently, mine look as if they came from a different species - or at least, a deteriorated skeleton :(.

I very much sympathize and join the chorus urging you to seek more opinions. There IS a certain crowd here who seem to feel comfortable with their decision to have surgery as prophylaxis (maybe against becoming "like me" - remembering the button that reads "Did you ever think that your main function in life is to serve as a horrible example?":p),

I do concur that if possible, it's certainly to be avoided though not at all costs.

Go to other trusted surgeons - more than one, I say. The more you learn, the more you know! It's a very serious decision.

Note there is also a movement (well, sort of) worth highlighting that says exercise can stabilize curves - though it's not a small investment of time. I myself am finding that it significantly reduces pain (and may well have kept them stable for decades before I slacked off for a decade with disaterous results - or was it coincidence? :confused:).

It's hard to keep it up, though. OTOH I'm a lot older than you. At your age, you might want to give it a whirl. For that, you would need to search on "non-surgical" (treatments) and look up "dailystrength".

Best of luck!

Amanda

Ps I agree too in respecting "conservative" surgeons. After all a surgeon is trained to cut to problem solve. Therefore to seek an alternative and reserve that methodology except as a proven last resort, is like the proverbial hammer seeing things as other than a nail! :D

RitaR
05-18-2010, 07:08 AM
Good Morning: There has to be something to be said for someone having surgery before being in pure agony like I was. When I finally got in to my dr to have my surgery I was in such agony it hurt to sniffle, breathe and even laugh. I couldn't hardly walk into work without having to stop and rest on the way in. I was in such pain the only relief I got was lying down in bed and sleeping. I didn't want to go anywhere at all because I knew I would be in pure agony. And, now that I am postop, not that I don't have pain now, but I know this pain will go away. That pain preoperatively was with me up until the point they put me to sleep for my full fusion to pelvis. This surgery has been the toughest, but best thing I have ever done for myself. I won't say it was not an uphill battle at times, but it has been well worth it. I still look in the mirror in pure amazement! My ribs no longer over ride the waist on my jeans. I no longer have the numbness/pain in my right foot. I have some thigh pain on my left side, but they say can take 6-9 mos for that to heal. So, my advice, bottom line, don't wait until you are in pure agony. If you can get in to get surgery before then, and your curve is obviously progressing, just do it. You'll be very glad you did!!!!

jrnyc
05-18-2010, 09:02 AM
i kinda' agree with Linda...if you dont have pain, i'd seriously consider waiting...i am in significant, serious pain and have been delaying and delaying fusion (to pelvis)!
this surgery is forever and ever and ever...i wouldnt do it without pain that was debilitating! that's just my opinion....but please remember.... no one can guarantee the outcome, as Linda pointed out.....

best of luck
jess

CHRIS WBS
05-18-2010, 09:33 AM
At 38 you state that you have a 67-degree thoracolumbar curve with significant rotation and documented progression of 12 degrees in five years. Without knowing what kind of doctors you have been seeing, I can assure you that no competent adult scoliosis surgeon would suggest that you may never need surgery. Your spine is collapsing and it will continue to collapse. I would address the problem now and not wait for it to worsen. My thoracolumbar curve reached 80 degrees and I had a significant deformity. I underwent a 12-hour surgery that included osteotemies and laminectomies. While in the hospital my surgeon said he wished he could have treated me when I was younger. At age 59 my spine was rigid and I presented quite a challenge to my surgeon. And consequently I did not get the dramatic cosmetic improvement for which I hoped. While Iím much improved, I still have a deformity. Do these docs want you to wait until you have a 90 degree curve? As others have suggested, I would get opinions from qualified adult scoliosis specialists.

ADMoul
05-18-2010, 10:28 AM
As you can see from my signature, I had a 92 lumbar curve going into surgery. Although it was not carefully monitored, I know my curve progressed significantly throughout my adult years. I had little or no pain up until the last few years and it seemed to get worse with menopause. As severe as my curve was, I had no gastro-intestinal issues and no pulmonary problems from the thoracic. Several years ago, I wouldn't have dreamed of doing this surgery. I pretty much went through life in denial about its progression, dressed to cover up and bought bigger bras! Anyway, even though my spine was very stiff which limited correction, I believe it was the right time in my life to do it. I do not exaggerate when I say that all of my pre-op pain and nerve symptoms were relieved and it was getting to the point where they were interfering with my life. I found a great Dr. and have been blessed with an amazingly rapid recovery. Probably one of the hardest, scariest decisions I ever made but it turned out to be one of the best. Consult with a good adult scoliosis specialist and weigh your options carefully. Had I done it when I was younger, I might have had a better correction but it's hard to talk yourself into something this big if you're not having pain. Also, the longer you wait, the more advanced and refined the technology becomes. I think you'll know when it's right for you. Best of luck!

Confusedmom
05-18-2010, 08:48 PM
Hello all,

I am not totally sure how this works and whether I'm supposed to respond to the group or individually, but, I really want to say a huge THANK YOU to all of you. This has really been a Godsend to finally be able to "talk" to other people who understand my problem. So, thank you to the Forum and to David Wolpert whose book told me about it. (Note that NO docs I have seen mentioned it.)

To answer a couple of questions, yes, these are scoli surgeons. However, I live in Indianapolis, a mid-market, so I know they do other spine surgeries as well. There just aren't enough cases here for scoli full time (at least not adult). So, one question I have is, is it worth travelling to find a doc who does nothing but scoli? I'm thinking St. Louis or Chicago since that's not too far.

I was interested to know about those of you who have decided to have surgery despite not have signif. pain. What did your docs say the reason was? I am told "progressive deformity and loss of function" but so far haven't seen much function loss. Seems like lumbar curves have fewer severe consequences??? On that note, Linda, I will double check with my doc regarding his comment about potential kidney/gastro troubles.

A couple of you asked about disk degeneration. Both docs have said that because they are fusing to L4/L5, I could expect the resulting stress on L5 to put pressure (read: pain) on my lowest disk in the long term. Right now that disk is healthy. I guess this is not an issue if you fuse to S1 or the pelvis, but they are trying to preserve flexibility if they can. Both docs have said I may actually be in worse pain following the surgery.

Amanda, love your quote about serving as a "horrible example." Good to keep some humor about this. Well, thanks again for all the thoughts. I am definitely going to see at least one if not more than one additional surgeon. I look forward to "chatting" with you all more in the future.

Evelyn (a.k.a. Confusedmom)

LindaRacine
05-18-2010, 10:07 PM
Seems like lumbar curves have fewer severe consequences???
Lumbar curves are far more likely to be painful than thoracic curves.

diane2628
05-18-2010, 10:28 PM
I had surgery at 10 years ago, at age 30. I had some pain at the time, and had experienced some progression, but it wasn't too bad yet. But I did feel like the pain was starting to sneak up on me a bit. I decided to have the surgery sooner rather than later - I agreed with the surgeon that it was likely to continue progressing, and that I would have more pain and potential lung capacity issues later, plus I felt it would be an easier recovery when I was young and healthy.

In retrospect, I could have waited another year or two (and if I had it to do over again, I think I would have waited a bit longer)....but I'm glad I did it and have had no real problems in 10 years. So, based on my experience, I'd say wait a year and see what happens. BUT - I didn't have 12 degree progression in 5 years the way that you have. That's a big difference with your scenario.

But you don't need to decide today. Seek out a third opinion, wait and see how you feel in 6 months when you've had a chance to digest it and think about it a bit. That shouldn't make much of a difference in your progression or your life situation - so don't rush it.

sccrm08
05-19-2010, 12:02 AM
I am fused down to L4 and had a great deal of pain prior to surgery. But at 3 years post op, I am pain free for the most part. Sometimes I have a bad day but am so thankful I had this surgery. My Dr. also told me there was a chance that the fusion would put more stress on the remaining discs, but we will deal with that when the time comes if it comes.

jrnyc
05-19-2010, 01:17 PM
Evelyn
"you may be in worse pain after the surgery"...?!!!!

i would be REALLY careful going ahead with any surgery with a warning like that from the very people who would do the surgery!!! seriously..what then is their selling point..? you'll stop progression of the curve(s) but be in agony?

i have severe lumbar pain...i would never ever opt for this pain by choosing surgery!! i was hoping to opt out of it with surgery!

jess

loves to skate
05-19-2010, 04:58 PM
[QUOTE=Confusedmom; Seems like lumbar curves have fewer severe consequences??? [/QUOTE]

Severe lumbar curves can land you in a wheel chair.
Sally

LynetteG
05-19-2010, 06:27 PM
Hi Evelyn, my main curve was lumbar at 85 degrees at age 44. I had minimal pain prior to surgery, however, I couldn't stand for more than ten minutes without feeling a lot of pain, so it was starting to affect me taking care of my boys and doing day trips with them. My curve was progressing quite rapidly in the last year, and I was told that my stomach organs had shifted, and would likely continue to shift upwards causing constriction to my heart and lungs, also my pain would definitely worsen, and if I had the operation now rather than later, I would have a much better chance of a good correction, and the surgery would be a lot easier on me now rather than when I'm older. I am really happy that I chose to have this surgery now, obviously I'm not pain-free yet as I'm only seven weeks post op, but my body looks great for the first time in many years, before I looked so ugly and deformed. Also I don't have to worry about my heart and lungs anymore, or think about facing this surgery anymore, as it's now in the past. I was lucky to get a great correction, lumbar went from 85 to 27, and thoracic went from 55 to 19, so I'm very happy with my results, and thrilled that I researched my doctors, and I feel like I got the best doctor in the universe :) :)

Back-out
05-19-2010, 08:06 PM
That's just fabulous, Lynette - the correction, your joy in your doctor, your decision - everything.

I hope everything continues to fall into place for you. I've been worried about your leg pain as well as your activity level so soon after surgery, your relative youth notwithstanding (bed-making? :eek: )

What concerns me most is having just learned on another thread how important it is to avoid bending, twisting etc, for the first three months (to insure fusion and avoid pseudoarthrosis -if, remarkably, I've spelled that right! :p).

But OTOH, your lower fusion leaves you much more mobility than mine will (and that of others).

Way to go, all!!

JenniferG
05-20-2010, 12:52 AM
Hi...

I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

Regards,
Linda

My surgeon told me the exact opposite. His words were, "Those with little or no pain prior to surgery, tend to have the best results." My pain was low to moderate and I'm now painfree.

I would think that waiting would only give the pain a chance to worsen? It was certainly worsening for me.

CHRIS WBS
05-20-2010, 08:39 AM
Thatís my understanding as well, Jennifer. In fact, there were a couple of posters here who repeated the same observation from their surgeons, one of whom was Dr. Boachie. The pain I experienced before my surgery was structural in nature. I was beginning to feel the effects of a collapsing spine, but it did not disable me to the point where I had to quit my job and start a regimen of taking daily pain medication. Now that my spine has been straightened and stabilized, I have no pain at all.

JamieAnn
05-20-2010, 09:37 AM
Hi...

I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

Regards,
Linda

Yikes, that's quite a statement! That's precisely what I fear actually. I'm glad to see that others disagree with this, but this is still what concerns me about having surgery. I do feel pain, but again I'm stuck on the levels of pain that people claim to have. I have specific pains and achiness - and what I would say "discomfort" in general. But I am able to do what I want and don't take painkillers to get through the day.

Linda, I'm also curious what you mean by radical - just those who are willing to do surgery without waiting?

lray
05-20-2010, 11:42 AM
My surgeon told me the exact opposite. His words were, "Those with little or no pain prior to surgery, tend to have the best results." My pain was low to moderate and I'm now painfree.

I would think that waiting would only give the pain a chance to worsen? It was certainly worsening for me.

My surgeon also said this, as well as clarifying that he will be able to achieve much better correction now rather than later when my curve is another 10*.

Vali
05-21-2010, 08:36 AM
My surgeon told me i would have significant pain reduction, but that it may not be completely painfree. My Neurosurgeon told me, that he was optimistic that i would be pain free. He was right! After all, he had looked after me from 2007-2009 and was the one who ordered my spinal injections when i needed them!

Confusedmom
01-20-2012, 10:18 PM
Hello Everyone,

I unearthed this thread -- my first post on the forum from a few years ago-- so I can continue my story and keep things contained in one place (more or less) -- I know Linda likes that!

Anyway, I'm really going to have the surgery now! I'm scheduled for March 14th with Dr. Lenke. He has moved the date a little bit twice, so I haven't changed my signature yet. All in all, I am feeling good about things. I have my care takers in place. My mom and husband will be coming to St. Louis with me, and I have other family lined up to care for my kids for the two weeks I'll be gone.

I've been re-reading Wolpert's book and getting my house organized. And I'm continuing to read the forum, as always. I've also been exercising more and taking my vitamins. And I lost about 15 pounds last year, so I'm close to the weight I want to be at for the surgery (could lose another 5-10, but won't sweat it if I don't).

Long story short, everything looks good except this: it's still a big gamble. I am going in with what Dr. Lenke measures as 84 degrees thoracolumbar, something like 45 degrees thoracic. My local doc measured it at 68 thoraco, so I'm not really sure how big the major curve is. Let's just say "significant."

I have documented progression, which is greater than 1-2 degrees per year as an adult. My curve was 33 degrees when I graduated from college. (I'm 40 now -- as of this week! Ugh.)

So, these are "slam dunk" reasons for surgeons to recommend surgery, as far as I can tell. Very large curve and undeniable progression.

Problem is -- I really don't have much pain. I had some sciatica last year, but it resolved when I lost weight and started eating better. I can still pretty much do whatever I want -- step aerobics, shopping, cooking, you name it. I don't run, but I never have. I do get a sore back if I lift heavy things or stand still for long periods of time, but doesn't everyone?

So, I'm really supposed to go through with this and gamble that my pain won't be worse after recovery? Of course, I understand that the surgery and recovery itself will be very painful. I'm prepared for that (or at least as much as I can be). It's that question of chronic pain afterwards. And will it be less than the chronic pain that I'm supposedly going to have if I don't have this surgery? And then there are all the risks and complications to worry about. I have been hearing about too many cases of non-fusion lately, which makes me think the first surgery is just opening up a can of worms for future surgeries.

I know I am going to do this. My mother retired from her job so she can take care of me and help with the kids during recovery. I guess I'm just looking for reassurance that this really is the right thing to do. I read Linda's post on a different thread that reminded us once again that adults going into surgery without much pain sometimes regret having the surgery. Am I going to be one of those adults? On the other hand, is it wise to delay surgery on an 80-something degree progressive curve? Thoughts?

Sorry for the rambling. You'll probably be hearing a lot from me over the next two months. I have already gotten invaluable advice and inspiration from this forum. So, thank you!

Evelyn

LSKOCH5
01-21-2012, 06:22 AM
Although I can't address your pain issue, I'm so thrilled & relieved you've chosen Dr Lenke. And that you have caregivers lined up not only for your kids but for yourself. Without surgery progression will continue to get worse, it will affect your organs & you therefore will end up in pain at some point. And you're young & active now, which will help the success of your surgery & recovery. IMO, you're doing everything right to avoid a rough future, and you've put your future in the skill of the foremost scoli surgeon. Wishing you peace about your decision and the best outcome possible!

jrnyc
01-21-2012, 07:31 AM
hi Ev
congratulations on making the decision and booking the date!

how much more progression could you expect if you didn't have the surgery...?
did you ever ask any surgeon that question....?
your curve must be large...Dr Lenke stopped taking patients without big curves
a while ago, didn't he....? so just that you "qualify" to be his patient says something!

have you considered how long your luck would hold, not having pain with such
a big curve....?
i managed my scoli very well until i herniated discs in lower spine...that
happened when i lifted a little kindergarten chair at work....at around age 50...
personally, i think not only do the odds of injuring one's back increase with age, but
i think they also increase with having scoli....so age plus scoli, in my book, makes injury more likely....
that's just my view of it...
if you consider that possibility, having the surgery while you are young-ER
is wise...and at your age, you are still young-ER...
happy birthday, by the way...

best of luck....
jess

leahdragonfly
01-21-2012, 08:46 AM
Hi Evelyn,

I know how tough this decision is! I wonder if you have followed the posts by golfnut (Karen)--she was in your similar situation with a very large curve but little pain, and she has had a fabulous outcome with Dr Lenke. It might help you to read back through some of her threads. She is just past one year post-op and I believe very happy.

Best of luck,

Pooka1
01-21-2012, 09:15 AM
I am glad you made a decision.

I find the comment about a 45* compensatory T curve possibly compromising organs coming from an orthopedic surgeon to be mildly shocking. I still find it shocking even given the progression. As far as I know, you need to get north of 90* or more for some period to demonstrate any organ compromise in adults. On the contrary, collapsing a lung during some spinal surgeries does compromise lung function for a few years as far as I know. Not sure about the thoracic insufficiency issue in small children.

And as for the elephant in the room...

33* at 22 years old
80* at 39 years old

I am guessing Dr. Hey would classify that as a collapsing spine. Pediatric orthopedic surgeons need more data on this issue. Different data will change treatment paradigms (or should). Parents and kids are presently being given what seems like potentially very wrong information.

Good luck.

jrnyc
01-21-2012, 10:17 AM
Ev, i just read back over your entire thread...
i once told you if i were you i'd consider waiting because you said
you had no pain...but now i think you are doing the exact right thing by
having the surgery at this time....
i am absolutely amazed that you don't have pain!!!
i need fusion T4-sacrum....and i have incredible pain....from the curves,
the bad discs, pain from sacroiliac joints as well...
everything was fine til i herniated discs, as i mentioned....then the pain kicked
in and never stopped!!
i think you would be taking a big chance not having the surgery now, especially
when you are able to have Dr Lenke!
without a crystal ball, you do not know if/when the day would come when
you would wake up with typical lumbar pain that so many with low curves
have..
i hope you sleep well, knowing you made a good decision....
i think you are doing the smartest thing...

jess

golfnut
01-21-2012, 11:03 AM
Evelyn,
I was extremely active prior to surgery with pain only when standing a lengthy period of time or lifting too much or raking leaves, etc. While no one wants pre surgery pain, it would make the decision easier. I even started a thread once "Is surgery a gamble?". I truly believe that not having surgery is a bigger gamble with a large curve. My ribs are now separated from my hips and i can take deeper breaths. Dr. Lenke would not recommend surgery if he didn't think your quality of life in later years would be better than without the surgery. You should have seen some of the people in Dr. Lenke's waiting room that delayed their surgeries. It was pretty sad. I am so thankful I had the surgery when I could still get a good correction. You are so fortunate to have Dr. Lenke as your surgeon. I will email you with my phone number.

loves to skate
01-21-2012, 12:54 PM
Evelyn,
Coming from someone who had surgery at age 67 and with your curves and your age, all I can say is "Hello". To me it is a no brainer. I know fear can paralyze people, but please don't let it paralyze you. I can tell you, I wish some brilliant Doctor would have diagnosed me much sooner than at age 65.
Sally

LSKOCH5
01-21-2012, 01:05 PM
[QUOTE=Pooka1;134314]I am glad you made a decision.

I find the comment about a 45* compensatory T curve possibly compromising organs coming from an orthopedic surgeon to be mildly shocking. I still find it shocking even given the progression. As far as I know, you need to get north of 90* or more for some period to demonstrate any organ compromise in adults. On the contrary, collapsing a lung during some spinal surgeries does compromise lung function for a few years as far as I know. Not sure about the thoracic insufficiency issue in small children.

It's much more believable to me, since we found from the doctors that our son's lung could not fully expand due to his spine prior to surgery, although he is a teen vs an adult.

jeneemohler
01-21-2012, 01:10 PM
In my case, I waited a year too long...

I had some pain for almost 15 years prior to surgery, but it was manageable. I stayed very active, which I believe stabilized my back with strong core muscles. It allowed me to postpone surgery for many years. My surgeon was also of the mind set to wait until absolutely necessary. But eventually, by my late 30's, it progressed to the point where I had regular epidural injections for several years and was on anti-inflammatory meds and an occasional pain pill. (Which I was stubbornly resistant to, even though it really helped on the bad days.) The progression started getting worse and I knew the time for surgery was coming near. Still, I put it off "one more year". I shrank 3" in the next 6 months, and my curve really collapsed. At my age (49 last year at surgery) I was not as flexible as a younger person, so I only had a 50% correction. Which put me right back at where I was a year before surgery. If I had done it the year before, I would have had a much better correction.

But with that being said, I am still doing awesome, even though I waited too long.

It is such a hard decision. I agree about waiting as long as possible, but at some point, most of us eventually make the leap. I personally have never regretted it. It has made my life so much better. Even if you don't have any pain, you will no longer have that black cloud hanging over you, wondering if and when surgery is in the future. It seems to dominate your thoughts at times. You will no longer have to worry about your spine progressing or collapsing, and you can get on with your life! And you do heal faster if you are younger.

As far as patients who don't have pain prior to surgery not being as happy with the outcomes-it makes total sense to me. In my opinion, I don't think the surgical outcome is necessarily very different in the two groups- only the perception is. I will gladly take my muscle tightness and the sensation of being fused any day to the feeling of sciatica or spasms I had prior to surgery. If someone doesn't have that pain before hand to compare to, they may not be as happy with the surgery, even though it may be the same outcome. If you are progressing, I would take being fused over the uncertainty of the future-it is usually only a matter of time. You never know when it will collapse like mine did. And you have to remember that the main goal of surgery is for prevention of further progression and deterioration, not to relieve pain. Eventually, most scoli patients do feel some pain, and hopefully you will be saved from experiencing painful sciatica, etc., in the future by being fused. I wouldn't wish that on anybody. Being fused truly isn't that bad. It hasn't stopped me from doing anything, and I am fused from T3 to S1 with pelvic fixation. It is a little rough at first, but by 6 months post op, I was climbing mountains, literally! I've been roller skating, and I was just released to go skiing at my one-year check up. I am a perpetual optimist, and even I was surprised at how few limitations I have with fusion. For me, it is so much better than the alternative. I can't imagine where I would be in another 10 years if we lived in a time where surgery wasn't an option... We are indeed fortunate.

Good luck, and keep us posted. You have lots of support!

Marina63
01-22-2012, 02:21 PM
Jenee, I love reading your advice. You are always so logical and reassuring.
Thanks : ))

LindaRacine
01-22-2012, 08:16 PM
In my opinion, I don't think the surgical outcome is necessarily very different in the two groups- only the perception is.

Absolutely.

Confusedmom
01-22-2012, 09:10 PM
Jess, Karen, Sally, Jenee & others,

Thank you so much for your thoughtful and kind advice. It really is reassuring to hear from people who have been through this, as well as those who are just knowledgeable about the subject. I agree about the issue of pain perception. I have been trying to remember what it felt like for the month or two last year that I had bad sciatica. If I can hold on to that memory, it helps me better understand why this surgery is necessary!

As you say, I should do this while I'm young(er), and not delay until I loose bone density, etc. Also, I have a good support system now, and who knows what will happen in the future. Thanks again! I'm sure I'll be checking back in the next weeks before the big day.

Best,
Evelyn

Karen Ocker
01-23-2012, 12:49 PM
My 80 deg thoracic curve caused permanent loss of lung tissue-it doesn't come back. My stomach was on its side(watermelon stomach my gastro called it). Gastric acid migrated up into my lower esophagus causing scarring and stricture--requiring dilitation --all this without much pain from the scoliosis.
My heart was rotated-if EKG electrodes are placed as if I had a normal thorax erroneous EKG reading resulted. My ECHO cardiogram even shows(still) my descending aorta is not in the usual place but shifted to one side.

Whichever way the spine goes so do the internal organs.

Confusedmom
02-01-2012, 09:41 PM
Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

:),
Evelyn

rohrer01
02-01-2012, 11:37 PM
Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

:),
Evelyn

Evelyn,

I've got an even better one. They are measuring me at 1/2 to 1" TALLER than I have been for the last 27 years and my scoliosis is progressing. Explain that one. I measured myself on the wall a couple of months ago so that I could watch for shrinkage due to progression and that also said I grew. My doctor is blowing it all off as "margin of error". It's a little upsetting because I have consistently been measured at 5'7" for a LONG time and by different doctors. So how can I progress and grow at the same time?

jrnyc
02-02-2012, 01:17 AM
hey Ev
i thought most surgeons give an estimate....
every surgeon i saw did...said things like
"you'll probably gain one and a half to two inches in height..."

so...have you asked the height question at your consult(s) ????

jess

Pooka1
02-02-2012, 05:53 AM
Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

:),
Evelyn

While you were growing, the growth compensated for hte curving so the height remained about the same.

You might want to ask about the issue of your arm span being similar to your height because that can be an indicator of certain connective tissue disorders. If you have no other signs/symptoms then it probably means nothing.

Confusedmom
02-02-2012, 08:48 PM
You might want to ask about the issue of your arm span being similar to your height because that can be an indicator of certain connective tissue disorders. If you have no other signs/symptoms then it probably means nothing.

Huh? Pooka, I thought everyone was supposed to have the same arm span as height?

Anyway, yes, I'll see what Dr. Lenke says at my pre-op. I will be surprised if I gain height.

On another random note, did anyone else feel compelled to paint their entire house before surgery? I am in the process of getting mine done. I think it's a combination of not wanting to stare at a bad paint job during recovery and also trying to distract myself right now!

Thanks for the responses on the height question.:)

Evelyn

jrnyc
02-02-2012, 09:01 PM
i don't understand...i thought most people with large curves gain
height after surgery....height that they LOST from curving...
i know i am down from 5'5" and a quarter....i always used to count that quarter...
to under 5'4"...
my sisters, without scoli, are both much taller than me...5' 8"

jess

Pooka1
02-02-2012, 09:05 PM
Hi Evelyn,

I re-read your post and think that your height is less than your arm span due to your curvature, not an underlying situation of arm span being longer than a straight spine. The numbers probably would not work out. (see below)

Marfans, for example, is associated with an arm span that is > 1.05 times height. But now I am wondering if that is due to the prevalence of scoliosis and that shortening the height of this folks. Maybe no Marfans person would have a longer arm span than their height absent the curvature. But to crunch the numbers for a non-scoliotic person, if they were 5' 2", if their arm span was > 1.05 times that then their arm span would be > 5' 5"+. That is well beyond where you likely are even without a curve I think.

Anyway, depending on how much correction you get, I think you will end up being taller than your arm span.

titaniumed
02-02-2012, 11:47 PM
Hi Evelyn

I think your doing the right thing. I know I waited too long thatís for sure.. I probably could have skipped my very invasive anterior if I had surgery around the age of 40. I have put a lot of thought into this.

I had ďsomeĒ sciatica when I was 40.....that was the beginning of my battles for a few years. It ended up getting pretty bad, let me tell you. Man-o-man! They should have changed the definition in Websterís dictionary under the word pain....

Example of revised definition

Pain:
1. Ed (before his surgeries)
2. Localized physical suffering associated with bodily disorder.
3. One who annoys.

With an 80 degree progressing curve with a tad of sciatica, I donít think you need to question your decision anymore.

You will gain a few inches, probably 2-4 inches. Put a mark on the wall before you go in. (smiley face)
Ed

jrnyc
02-03-2012, 01:28 AM
to the definition of pain, please add "herniated disc"...

thanks....
jess

titaniumed
02-03-2012, 01:55 PM
Oh, I forgot....

If you remember Moe Howard from the 3 stooges, he was asked by a fan what he considered his largest accomplishment, he replied that he was happy that his name was added to the word comedy in the dictionary. I thought that was interesting.

Ed

Confusedmom
02-05-2012, 09:53 PM
Thanks Ed, Jess, and everyone for responding.

I am hoping to gain height because that will make my body weight ideal. :) LOL. Nothing like moving that BMI without a diet!

Confusedmom
02-15-2012, 07:54 PM
Hi All,
I'm on my way back from St. Louis for the big pre-op day. I can't believe this is finally here, and now I am posting info for people behind me in the process. I will give the details for those who might want to know how pre-op goes.

We drove in from Indianapolis last night and stayed at the Parkway. (love the free cookies and popcorn in the lobby, btw.) First appt was 8:10 bone density. You lay down on a bed and they run this scanner sort of thing over you. You don't feel anything. I think the whole thing took 15 min. So, it turns out I have osteopenia. Dr. Lenke said that is not unusual and won't affect the surgery. I am only 40, so might have to take something to help prevent osteoporosis in the future.

After bone density, it was time for an hour of x-rays. Standing, laying, bending, push-prone. Interestingly, the resident marked my curve at 75 degrees, and Dr. Lenke changed it to 83. He said the margin of error tends to get higher with larger curves. Some of the edges of the vertebrae were fuzzy, making measurement imprecise.

10 a.m. I met with a couple of residents regarding research studies I will participate in. They are looking at the long-term effects of treated vs. Untreated lumbar scoliosis. Another study is evaluating a drug for neurological complications in surgery on large curves.

Then Dr lenke came in and talked to my mother, husband and me. He said he would fuse to S1 even though my L5 disk is in good shape because my L5 vertebret is wedge shaped and he thought there was a 66% chance I would be back for revision within 5 years if he didn't.

In addition, he said it's completely personal choice whether I have the surgery now or wait several years, since I am not in much pain. But he said it is nearly a 100% chance I will have debillatating pain necessitating surgery at some point, so why not get the surgery done now when there are likely to be fewer complications and get a better correction?

After Dr. Lenke I met with Kelly, his nurse coordinator, and we went over all the logistics. I was surprised to learn people could donate blood for my specific use. I need 6 pints, so I'm not sure whether I will ask friends/family or not.

By then it was about 1 pm, and I was 30 min late for my pre-op anesthesia appt. I went down there, where they did an EKG, blood pressure, took urine and about 8 vials of blood, and talked to me about my current medications. As I have mentioned previously, Lexapro is OUT, as it thins blood. Reflux mess are okay. Multivitamins are also out because vit E and C thin blood. They then sent me up to the 3rd floor for chest x-rays. I think this is to make sure you don't have any fluid in your lungs, but I'm not sure.

By then it was 3 p m., and I still had to do a treadmill test in Dr lenke's office. I begged my husband to bring me a roll and drink from St Louis Bread Co., as I had not even had time for lunch!

Last stop was a 30 minute walk on the treadmill for one of the studies Lenke/Bridwell are doing. They will compare my pain level exercising now with levels 2 years post-op. That will be interesting to see.

We left St Louis about 4 pm, and are now about 10 minutes from home here at 9 pm in Indy. Have to pick up my kids from two different friends' houses and put us all to bed! An exhausting day, but I am starting to feel prepared for surgery.

If any of you have made it through this whole message, you are troopers! Hope you got something out of it.

Best,
Evelyn :)

LindaRacine
02-15-2012, 10:22 PM
I'm exhausted just reading that! ;-) Best of luck!

mabeckoff
02-15-2012, 10:26 PM
Glad that all went well and that you got home OK

rohrer01
02-15-2012, 10:27 PM
I'm exhausted just reading that! ;-) Best of luck!

Ditto that!

golfnut
02-16-2012, 02:05 AM
Evelyn,
Reading your journal of the day sure brought back memories. I had an MRI, in addition to all of the other tests you mentioned, which was the worst part of the day i,n my opinion, mainly because of boredom. While the preop tests brought the reality of the surgery front and center after waiting 13 months (and I know you have had your date for a lont time), I felt so much more confident about the surgery because of the thoroughness, but mainly, after meeting with Dr. Lenke. Just hearing him speak about the surgery gave me confidence that I was doing the right thing, although he doesn't push you to have the surgery but gives you the facts. I can't praise him enough. I know there are other excellent scoli doctors in our country, but we are truly fortunate to have him for our surgeon.

Spring72
02-16-2012, 09:06 AM
Remembering that all too well Evelyn......it is true that anticipation, worry and waiting are the hardest parts. You are well on your way, one part down *check*.


Take care,

hasteffen
02-16-2012, 01:26 PM
Evelyn,
Thank you for sharing your story. I am currently scheduled to have surgery with Dr. Lenke in Oct. 2012 and the anticipation is very daunting. I am so glad that you decided to go forward with your surgery. Please keep us updated on your progress. I, too am wanting to do a little painting and replacing carpet. Why, I do not know! I also enjoyed reading your pre op visit and you answered my question as to if I need to stay at the Parkway Hotel overnight. I really like that hotel as well. The cookies are good.
Take care, you are almost there!
Heidi

TwinmomTN
02-16-2012, 05:42 PM
Evelyn,
Thank you for sharing your story. I am currently scheduled to have surgery with Dr. Lenke in Oct. 2012 and the anticipation is very daunting. I am so glad that you decided to go forward with your surgery. Please keep us updated on your progress. I, too am wanting to do a little painting and replacing carpet. Why, I do not know! I also enjoyed reading your pre op visit and you answered my question as to if I need to stay at the Parkway Hotel overnight. I really like that hotel as well. The cookies are good.
Take care, you are almost there!
Heidi

It's good to know exactly what to expect. I will doing my pre-op in May
in St. Louis also. We also have some bath renovations almost
completed....painting, new shower, and new higher toilet.

Confusedmom
02-27-2012, 10:20 PM
Hi All,

I had to do about six loads of laundry today, and it got me thinking about appliances. I have a front-loader washer and dryer without the pedestal bases. Will I need to get new machines and/or bases? I will have help for 3 months, but I will be fused to sacrum, so...

Also, when were the rest of you able to load the bottom rack of the dishwasher?

And finally, for those of you who travelled for surgery, what did you do about the raised toilet seat and hand-held shower in the hotel? I guess I could take the seat I bought for home with me. Not sure about the shower though. I know I'm not supposed to get the incision wet for two weeks.

Thanks,
Evelyn

mabeckoff
02-27-2012, 10:32 PM
Hi All,

I had to do about six loads of laundry today, and it got me thinking about appliances. I have a front-loader washer and dryer without the pedestal bases. Will I need to get new machines and/or bases? I will have help for 3 months, but I will be fused to sacrum, so...

Also, when were the rest of you able to load the bottom rack of the dishwasher?

And finally, for those of you who travelled for surgery, what did you do about the raised toilet seat and hand-held shower in the hotel? I guess I could take the seat I bought for home with me. Not sure about the shower though. I know I'm not supposed to get the incision wet for two weeks.

Thanks,
Evelyn

As far as I am concerned the pedestal bases are a must. When you book your hotel room, ask for a handicapped accessible room

LindaRacine
02-27-2012, 10:45 PM
Hi All,

I had to do about six loads of laundry today, and it got me thinking about appliances. I have a front-loader washer and dryer without the pedestal bases. Will I need to get new machines and/or bases? I will have help for 3 months, but I will be fused to sacrum, so...

Also, when were the rest of you able to load the bottom rack of the dishwasher?

And finally, for those of you who travelled for surgery, what did you do about the raised toilet seat and hand-held shower in the hotel? I guess I could take the seat I bought for home with me. Not sure about the shower though. I know I'm not supposed to get the incision wet for two weeks.

Thanks,
Evelyn

Hi...

I was able to do laundry and load and unload the dishwasher right away, by using my grabbers. It takes more time, but it's not like you'll be in any hurry anyway. The only thing that was difficult, was silverware. I learned to use my grabber to remove the silverware basket, load it up at countertop, then put it back using the grabber.

While a raised toilet seat is convenient, it's not essential, especially if you have a walker or someone to help you on and off. You might want to try to find an "accessible" hotel room.

--Linda

Regards,
Linda

loves to skate
02-28-2012, 07:10 PM
I used my grabber to get clothes out of the dryer. Pedestals are nice if you can afford them. I could not.
I sat on a chair to empty the dishwasher. I put them on the counter, then stood up to put them in the cupboards.
Sally

LindaRacine
02-28-2012, 07:38 PM
Necessity is definitely the mother of invention.

naptown78
02-28-2012, 08:46 PM
Hi Evelyn!
Wow! You're surgery is coming up fast...
I know you will do just great! As far as the raised toilet seat...you won't need that. At least I didn't need anything like that.
I have a standard top loader washing machine and front loading dryer. With the washing machine I sometimes have a hard time reaching the stuff in the bottom of the machine but I just throw my leg back and get down in there! With the dryer I mostly have to squat down because I like to protect my back from bending. A grabber is a good idea to keep in the laundry area but most times it isn't where I need it to be. I actually didn't buy a grabber until my 3rd surgery so I lived without one for a long time. Like Linda said, you just figure things out as you go along! Call me if you need anything at all ;-)

Confusedmom
03-05-2012, 11:01 PM
Hi All,

I thought I'd give you all a little update. This is mostly for the "pre-surgery" group, to let you know what I'm doing to prepare. Also it will help me get organized, I think!

Today (done): Phone calls to good friends r.e. surgery, grocery shopping for week, hosted book club at my house, exercise walk 45 min. Plus ran kids around per normal. Ordered foam topper for bed (thank you, Ed!).

Tuesday: Cleaning out guest room closet for my mom who will be living here 3 months. Wrapping up business on neighborhood board. Callling insurance company (again). They still haven't given clearance!!!! Go through mail/pay bills before I leave for St. Louis. Step class, hopefully.

Weds: Talk to Dr. Lenke's nurse to make sure insurance is on track. Organize laundry room for all the visitors/helpers who will be at my house. Buy more soft pillows. Send out schedule to whole family of who is where while I'm in St. Louis. Cycling class.

Thurs: Put items at counter height or above in kitchen. Install raised toilet seat. Prepare forms for my daughter's kindergarten registration shortly after I get back. (Sad face.) Send out contact list for neighbors/helpers while I'm away. Step class.

Fri.: Put items in closet & bathroom at waist height. Prepare email distribution list for mom/hubby to let everyone know how surgery goes. Personal trainer. Laundry.

Sat.: Final calls to family who will be helping. Final packing. "Date night" with hubby.

Sun.: Lunch with in-laws. Spend day with kids.

Mon.: Headed to the Parkway Hotel!

I'll still be checking in with you all every day, of course. Calms my nerves.

Thanks again, everyone, for listening and all the well-wishes.

Best,
Evelyn

Pooka1
03-06-2012, 05:24 AM
Tuesday: Cleaning out guest room closet for my mom who will be living here 3 months.

I like your plan except for having your mother live in the guest room closet. :-)

Good luck!

mabeckoff
03-06-2012, 08:25 AM
I like your plan except for having your mother live in the guest room closet. :-)

Good luck!

If you don't treat her well, she might not stay

BetsyK
03-06-2012, 09:51 AM
Hi Evelyn,
Good luck! I'm a month after you. When did you first contact the insurance company?

Doodles
03-06-2012, 12:23 PM
Evelyn--
You are one organized lady! I think you are going to do just fine. The Parkway was a very good and helpful place to stay. We were always very pleased with it. Good luck this week as you get physically and mentally prepared. Staying busy is probably the best bet! Janet

Confusedmom
03-07-2012, 09:23 PM
Okay, small rant here. My insurance company STILL has not approved surgery! I have had this scheduled over a year. I know that Dr. Lenke's office sent all the requests by Feb. 1. They have since responded to two rounds of questions. Then we get a third round of questions today that says (direct quote):

1. What is/are the name/s of the planned procedure/s? Please indicate the level/s of the spine involved for each procedure. (Well, duh, they've done that three times.)

2. Does the patient have severe degenerative scoliosis as manifested by the following:
a. Progression of deformity to greater than 50 degrees with loss of function?
b. Persistent significant radicular pain or weakness unresponsive to nonoperative therapy?
c. Persistent neurogenic claudication unresponsive to nonoperative therapy?

3. Kindly submit clinical documentation that would support the requested procedure.
(Umm, xrays showing an 80-degree curve don't count? How about when you come those to the 55-degree curve in 2005?)

End of letter.

Seriously? I have been to seven spine surgeons -- all SRS members -- all except one of whom said I need surgery. The one who didn't said "wait until the curve is in the 70s." Well, now it's in the 80s.

Do you think the insurance company is going to deny this? It's true I don't have "loss of function" or "persistent significant radicular pain". Don't know what neurogenic claudication is. I thought the standard was documented progression above 50 degrees?

Ugh. Please tell me I have not come this far just to get insurance denial.

LindaRacine
03-07-2012, 10:26 PM
Hi...

Insurance companies are definitely playing hardball these days. Just so you know, the insurance company rarely sees much of your medical record, so it's safe to assume they haven't seen your x-rays. I'm guessing that your insurance company is just making things difficult to see if they can reduce the number of surgery reimbursements they're having to make. I can't imagine they won't approve you. In the meantime, I bet it's pretty stressful. My own surgery wasn't approved until 3 days prior to the big day. I tried to remain calm about it, though it wasn't always easy.

Hang in there.

Regards,
Linda

hasteffen
03-08-2012, 05:46 PM
Evelyn,
After reading your posts I swear we must be twins! I have wondered about my frontload washer and dryer. We did not purchase the pedestals and now I wish I had. I still have 7 months to go until my surgery and I am starting to prepare. I can tell you are well on your way to a sucessful recovery. I am sure insurance will approve, but man what a pain to have to deal with that now.
Best,
Heidi

Confusedmom
03-10-2012, 04:27 PM
Hi All,

Well, I got word Friday that the insurance has given medical clearance for surgery. There is still some paperwork to be finalized, which I hope happens before my central line on Tuesday.

Warning to all Lenke/Bridwell patients, I had to make a LOT of phone calls to both their office and the insurance company to get this through. My surgery has been scheduled over a year, but they don't process the insurance request until after your pre-op visit. I would start calling your insurance co. at least 2 weeks before your surgery to make sure your insurance is approved. Having to deal with this during the week before surgery has not been fun. It has taken several hours that I really needed to spend packing, etc.

Anyway, at this point it looks like it will clear. So, it's off to St. Louis on Monday! Central line on Tuesday, surgery Wednesday.

Thanks everyone for your pre-op support! I am looking forward to being on "the other side"! This spring I'm all about the Kelly Clarkson song: "What doesn't kill you makes you stronger, stand at little taller...." Here's to standing taller!

:),
Evelyn

rohrer01
03-10-2012, 05:46 PM
I wish you all the best and hope all goes well!

Rohrer01

JenniferG
03-10-2012, 08:59 PM
Very glad to hear your insurance fiasco is fixed. All the very best Evelyn! Look forward to hearing from you on "the other side." You'll do great!

golfnut
03-10-2012, 10:41 PM
Best of luck, Evelyn. You will do great!

mabeckoff
03-10-2012, 11:26 PM
Sorry to hear about your insurance issues. Glad that it finally worked out. I have had BCBS for the past several years and had never had any insurance issues for any surgery or procedure that I have had. I do consider myself very lucky.

Hope everything goes well for you

loves to skate
03-11-2012, 02:24 PM
Evelyn,
I'm glad you got through all of the insurance mess. It's too bad all of that can't be taken care of sooner. Best wishes for a successful surgery, a taller you and an easy uneventful recovery.
Sally

Doodles
03-12-2012, 05:53 AM
Evelyn--
Finally! The insurance folks really put you through it. Very best of luck to you this week. Prayers and positive thoughts to you for a great outcome. Janet

Confusedmom
03-12-2012, 10:06 PM
Hi All,

Nurse Kelly at Dr. Lenke's office called me today and said she has called a meeting with their precertification people because she had six people with issues last week. One of them actually had to cancel surgery this week because they didn't get insurance approval in time. Yikes! Well, at least they're trying to do something about it.

Thanks for all the well-wishes. I am in St. Louis now--central line tomorrow. My husband will post Wednesday.

Best,
Evelyn

titaniumed
03-13-2012, 09:00 AM
Evelyn

Your time has come....wishing you the best.

Ed

LindaRacine
03-13-2012, 01:19 PM
THIS (http://www.isass.org/pdf/BCBS-Minnesota_Medical_Policy_IV-85.pdf) may be the cause of the insurance issue.

TwinmomTN
03-14-2012, 01:10 PM
Linda,

I just googled this Minnesota policy to print it off and the last
paragraph in bold disallowing any related procedure is not there. It
stated as of four days ago. ????

LindaRacine
03-14-2012, 02:48 PM
Linda,

I just googled this Minnesota policy to print it off and the last
paragraph in bold disallowing any related procedure is not there. It
stated as of four days ago. ????
Maybe WashU has a lot of pull!

TwinmomTN
03-14-2012, 02:57 PM
That would be wishful thinking. If I'm not mistaken, BCBS
policy is different for each state. ??

Confusedmom
03-14-2012, 10:12 PM
All - This is Evelyn's husband Rob posting. Evelyn is out of surgery and doing well.

Dr. Lenke said her surgery went according to plan. Good correction, and no issues with her spinal cord at all. We checked in at 6:30 AM this morning. She went into surgery at 8:30. Wrapped up around 5:00 PM, so a little ahead of schedule. Her mom and I were with her by 6:30 PM. She is in CCA (post op "critical care area") overnight now.

Evelyn is pretty "with it" given the pain medications, and is doing great. She asked me to give a status report here. More to come, but just a quick note that surgery was successful. I'm sure she will log in with more details as soon as they let her. I'll check in the meantime. Hopefully I am posting in the right place.

rohrer01
03-14-2012, 10:28 PM
Thanks, Rob, for letting us know how she's doing! She was so worried, and then confused by what that person said to her. I'm glad it's over and she's doing well. Send her greetings and well wishes from the NSF forum!

Rohrer01

jrnyc
03-14-2012, 11:11 PM
hi Rob
thanks so much for the note about Ev...
i am so glad the operation is done and the healing begins...
i hope her recovery goes smoothly and without complication...
give her my best wishes...and congratulations!

thanks again...
jess

mabeckoff
03-14-2012, 11:44 PM
Thanks Rob for keeping us informed. Glad that all went well and that she is on the other side

JenniferG
03-14-2012, 11:44 PM
Great news! Thank you so much for letting us know, Rob!

loves to skate
03-15-2012, 01:06 AM
Thanks for posting Rob. I'm glad the surgery is over and that everything went according to plan. Give Evelyn my best.
Sally

TwinmomTN
03-15-2012, 07:18 AM
So glad she is doing well. Please give her our best.

titaniumed
03-15-2012, 09:21 AM
Thx for posting Rob.

Things are hard in the beginning....you guys hang in there, things will get better.

Ed

Spring72
03-15-2012, 10:56 AM
Great news, welcome to the otherside Evelyn....you are in my thoughts.

golfnut
03-15-2012, 11:41 AM
THanks for posting, Rob. I'm glad everything went well. We will be looking forward to updates when there is time.

hasteffen
03-15-2012, 02:31 PM
So Glad to hear that Evelyn is doing well. Praise God! Rob, Can you tell us a little bit what it was like waiting while Evelyn was under? I would like to prepare my husband and family (I'm scheduled in Oct. w/ Dr. Lenke) as much as possible.
Best wishes for continued healing and strength!
Heidi

Doreen1
03-15-2012, 02:36 PM
So Glad to hear that Evelyn is doing well. Praise God! Rob, Can you tell us a little bit what it was like waiting while Evelyn was under? I would like to prepare my husband and family (I'm scheduled in Oct. w/ Dr. Lenke) as much as possible.
Best wishes for continued healing and strength!
Heidi

Hi Heidi

Congrats on your surgery date with Dr Lenke. What are your
curve(s) measurements? Have your hubby read my blog
so he can learn from my hubby's experience of taking care of
me.

Warmly
Doreen

Doodles
03-15-2012, 02:47 PM
Rob--
It was so good to check in and see your post. Tell her welcome to the other side and best wishes for a good steady recovery. Thanks so much. Janet

KathK
03-15-2012, 06:49 PM
Rob,

Great News! I'm glad everything went well for Evelyn! I have been thinking of her yesterday and today. I was wondering if she got "upright" today.

A tip for you, Rob...My family thought the Queeny Tower Cafeteria there at Barnes had a nice view. I never got to see it (smile).

Kathy

Confusedmom
03-16-2012, 09:47 PM
Hi all. Evelyn and I (Rob) are in a private room on the seventh floor ortho unit at Barnes-Jewish Hospital South. I am typing, but Evelyn wanted to share her experience. So here goes:

Evelyn: First of all, thanks you so much to everyone on the forum for the support before surgery.

I went in Wed morning at 6:30. I waited in preop until about 8:30 when they gave me anesthesia. I don;t even remember being wheeled into the operating room. The first thing I remember was waking up and having my ventilator tube taken out. They took me down to the CCA (Critical Care Area), which I thought would be for a few hours. Ended up being 24 hours since there were no rroms on the seventh floor.

Critical care was good from standpoint of a nurse devoted almost entirely to you. But it is very loud and bright and seems more like an emergency room. So not great for rest. Finally around 7:30 Thursday night, we moved into my room upstairs. Things have gotten better since then. Initially, I was in a lot of pain because my oxycontin dose got delayed by three hours due to the room change. Plus, they increased the delay between doses of pain medication from one/ten minutes to one/twenty before moving me. I would say my pain shot out to about an 8 out of ten. But then I got the ortho nurse talked to the doctor on call and increase the pain meds. So gradually, overnight, it went down to about a six. Then in the morning, I begged the rounding doctor (Dr. Lenke had to go to a Chicago conference) to do a little more. So he added percocet, valium and flexerol. So, I am definitely taking a large cocktail of pain medication. But now the pain is down to a 2 or 3.

So today (Friday, 9:30 PM, second day after surgery) was a much better day. I got to sit up in a chair for about twenty minutes twice and I walked baby steps inside the hospital room. Also, Kathy from Dr. Lenke's office came by today with my x-rays. I don't know the degree of my correction, but it looks pretty straight. I have pictures and plan to post them later. I can tell by looking out my window that the weather in St. Louis is great. So I sent my husband and mo out to enjoy it for dinner. And I've beenh getting a lot of naps. (Oh by the way, the first 24 hours, I never slept more then ten minutes at a time because of the pain.)

The next big hurdle will be getting my foley catheter removed so I can use the restroom. (Just as a side note, the tech in Critical Care Unit tried to take it out before I had gotten out of bed. Fortunetly, Dr. Lenke stoped by about that time, and told them to leave it.) All in all, the pain has been a little worse than expected, but I am extremely relieved to be on the other side, and very happy that so far there have not been any major complications.

Thanks again to all for listening and supporting me. I will be in touch soon. Best, Evelyn

jrnyc
03-16-2012, 09:53 PM
congratulations, Ev
wonderful to hear from you...to know the surgery went well and that
healing has begun...
i hope that your recovery is steady and smooth...
thanks to Rob for posting for you and keeping concerned forum folks informed...
feel better every day!

jess

JenniferG
03-16-2012, 10:26 PM
Wonderful to read this news. You sound great, for this early. Glad to hear they were willing to help you with that severe pain. Looking forward to more updates as days go by. Thank you Rob!

rohrer01
03-16-2012, 10:56 PM
Thanks for the update, for sure! I'm a little more than disappointed that they haven't kept your pain under better control. You don't have a morphine, dilaudid, demerol, or fentanyl pump (I listed all I could think of because every doc has their favorite med)? I would think this early after surgery a pain pump would be the thing so that you have some control over your pain med intake and can't accidentally overdose. When I had my recent surgery (not scoli related) the anesthesiologist and assistant asked me what "my" acceptable pain level was and they kept it well below what I requested, which was a 4. I know these harder surgeries aren't as easy to keep pain under control, that's why they usually give you a pump. Aside from that, I'm glad to hear that Evelyn is doing well. Again, thanks for the update. It especially helps those of us not yet to surgery to know what to expect. It is very selfless and giving to share your experiences, and I, for one, appreciated it tremendously!

I hope Evelyn gets some well needed rest and gets that pain under better control!

Take Care,
Rohrer01

mabeckoff
03-16-2012, 10:58 PM
Glad to hear that all is going so well so soon

TwinmomTN
03-17-2012, 08:26 AM
Hi Evelyn,

Good to hear that you are making progress and doing well. I wonder why they decreased your pain dosage so soon? When did they take x-rays? I didn't realize they were taken so soon post-op? Sounds like you were lucky to get a private room. Keep up the progress and keep up posted.

Pam

timetofaceit
03-17-2012, 10:46 AM
Welcome to the other side, Evelyn! Trust you'll be able to both rest and begin to do more walking/sitting today!!!

Pooka1
03-17-2012, 11:05 AM
Welcome to the other side, Evelyn! Trust you'll be able to both rest and begin to do more walking/sitting today!!!

Congrats to Evelyn for making it through!

Sheree, do you remember your Cobb when you were 18? Did you only have a structural T curve at that time?

Confusedmom
03-17-2012, 05:30 PM
Hi all. Evelyn is napping, so it's Rob posting again.

I read a couple of threads asking abut Evelyn's meds, and thought it might be helpful to post some notes.

As of now, 4:30 pm on Saturday (72 hours out of surgery now), Evelyn does have a pain pump of morphine ("HYDROmorphine HCI"). She has had it since coming out of surgery, and it was initially set for .25 units every ten minutes. When the pain within a few hours of surgery increased as the anesthesia wore off, they switched to .5 units every ten minutes.

On day two, she saw Dr Lenke at 7 AM and 6 PM. She was doing so well that they reduced the dose back to .25 units every twenty minutes. She also had "IV Tylenol"' which helped, but is only available within the first 24 hours. She was also on OxyContin at that point. Both are apparently quite fast acting.

After that first twenty-four hours from surgery, the process of transferring rooms, missing an oxycontin dose for three hours as they moved her, and then the twenty minute lockout setting on the morphine pain pump led to some of the pain issues she mentioned when posting earlier.

Friday morning, they introduced the Percocet, Flexeril and Valium to help. This "cocktail" got her pain down from an "8" over night from Thurs to Friday, back down to a "3" by mid-day on Friday. It's now late afternoon on Saturday, and the pain has been under control since. So good news on that front. We are trying to balance the pain management with needing her digestive system to restart (which some pain meds slow down). Evelyn is also conscious of needing to eventually get off of the pain meds, and is often asking about the balance between pain management now and getting off of them later.

Anyway, I should also note that, at least here at Barnes in St. Louis, the ortho floor is very up to speed with dealing with spinal fusion patients. They know Dr. Lenke's preferences well, which is a big help. I'm sure Evelyn will have more details on this later, but based on our experience, the twenty four hours in intensive care or critical care after surgery is more challenging, and probably more critical for family members to be aware of the overall game plan and "advocate" for the plan. Both on general, but with pain management in particular.

The benefit of this post op area is the one-on-one nursing care. The downside is that everyone there does not necessaily know Dr. Lenke's post op preferences as well as the ortho floor. Our first nurse ("Herman") and nurse practitioner ("Nicole") were both very good as well as friendly and extremely attentive. But there were only three overnight patients in the post op, or "critical care area" ("CCA" on the third floor), so they were both great at working with us and checking with Dr. Lenke's team as needed.

The next day in the CCA, it was much more hectic, with patients coming and going and few empty beds in this Third floor area. The day time nurse practitioner had a lot to oversee, and was therefore not nearly as helpful, and much less visible than Nicole the night prior. It led to delays getting moved up to the ortho floor, some of the pain management issues with the doses, and the mistaken instruction to pull Evelyn's foley catheter (which Evelyn's mom and I prevented, and Dr Lenke confirmed when he came by later would have been two days too early for removing).

So moral of the story is to know Dr Lenke's plan for the first twenty four hours well, have family members in the loop so they can advocate for this plan and watch for steps that seem out of line, while staying flexible so the nursing team can adjust and personalize steps as needed.

So as we hang out in the Ortho unit with the NCAA basketball tournament continuing on TV for a third day, I should note that I had Evelyn fill out a bracket before surgey as a distraction. She picked St. Louis to win it all (perhaps appropriately?) and they are still in the running. Evelyn is tied for third in this particular bracket contest. It is nice to have distractions as she continues to get better. Most importantly, I'm happy to share that she is doing really well and still seems to be on or ahead of schedule with her recovery (and she has slept for the last ninety minutes!).

Evelyn may feel like posting more later, but I though this would be a good spot to keep some notes. Hope it's useful to others, too. I know this forum has been hugely helpful to her Cheers. Rob Twitchell

jrnyc
03-17-2012, 06:01 PM
thanks so much Rob...
good to hear her pain is under control now and that
she is getting some sleep....
hope you can sleep at some point, too...

best wishes for her continued recovery...
jess

TwinmomTN
03-17-2012, 07:10 PM
Thank you so much Rob for the information and your experience there at the hospital. This will be greatly beneficial to those of us following soon behind Evelyn. I will definitely have my husband read your posts. So glad she continues to improve and is ahead of schedule! Glad the tournament is a distraction to you guys.

golfnut
03-17-2012, 09:13 PM
Rob,
Thanks so much for updating all of us. I met Evelyn in March last year in Dr. Lenke's office when I was there for my 10 week post-op. I knew that she would do well. I know she worked hard to physically prepare for this surgery. I am sure you are happy to have the NCAA games to watch to help pass the time. Give her my best wishes for a smooth recovery.

JenniferG
03-17-2012, 09:37 PM
Great commentary, very useful, for those following in your footsteps. Thanks for taking the time to let us know. These details, no matter how small they may seem, are devoured by those who're still facing this surgery.

Glad to hear Evelyn's on target or even better and that her pain's better controlled now - and that she's getting some sleep!

djkinkead
03-17-2012, 10:04 PM
Glad to hear you are on the other side, Evelyn. Rob, thanks for posting.

Don't worry about getting off the meds right now....concentrate on getting the "output" going now.

Also, you may find you are NOT hungry at all...it will kick in, but not for several days. I remember having to force myself to eat the first few days. It got better.

Remember, you are in healing mode now. It's okay to rest, it's okay to take the drugs that will help you rest.

Best wishes and I will continue to say prayers for you and Rob.

Kurt
03-25-2012, 06:15 PM
Hi Everyone,

I'm 50 years old, male and live in Seattle. I've seen about 4 or 5 bone doctors over the years, one of which, Dr. Krengel, I saw the most, but he ended up at Children's Hospital so I can't see him any more. My pain has increased as has my curvature. March 20, 2012 I had my first visit with Dr. Hanscom at Swedish Hospital in Seattle. He had a Dr. Bhangoo team with him for my visit. They talked about surgery that approaches from the side instead of the rear, and gave me an informational pamphlet from a company called NuVasive.

I'm not sure what to make of either doctor at this point. They seemed a bit too 'business as usual'. I kind of felt like I was in a retail store when they handed me the pamphlet. Still, the fact that research is being done is good news.

Has anyone in this forum heard of either this type of surgery or this company?

Another thing is that they took x-rays after the appointment, so I need to call about the results. This seems curious. Dr. Krengel usually took x-rays first so we could see where I'm at currently.

As of 9/10 (September 2010) my curve was 87 lumbar and 70 thoracic.

Lorraine 1966
03-25-2012, 09:01 PM
HI Kurt, I have never heard of that "Nu Vasive" but then others on here probably have. I am more that tried and true type of person, I would not like a surgeon operating on me maybe with something that is just a little new. I did have the best surgery they could give me in 1966 and it had been tried before. Just want you to be a little careful, I myself would have no problems with surgery with a scoliosis specialist, I just felt a little doubtful when I read your post. But as I said someone on here may have heard of it and it may be brilliant. I do hope that you are very soon looked after as your curves must be causing you pain.

Rob I have read Evelyns story and I wish you both the absolute best. How kind of you to take the time to keep all here up to date.

All the very best
Lorraine.

jrnyc
03-25-2012, 11:57 PM
Kurt, i sent you a private message...
Nuvasive sounds like it is used for minimally invasive spine surgery...

jess

titaniumed
03-26-2012, 12:53 AM
Hi Kurt

There are people here that have had XLIFís, from the side.....you might start a new thread or use search.

I would get digital copies of your x-rays, they are your property.

87 is a huge Lumbar curve.....how is your pain?

Ed

golfnut
03-28-2012, 08:56 PM
Evelyn,
We haven't heard from you lately. I was just wondering how you are getting along. The first month is the toughest!

Confusedmom
03-28-2012, 10:09 PM
Hi Karen,
I just responded on another thread. I am having trouble sitting, which makes using the laptop harder. I am posting most of my messages from my iPhone lying flat on my back. I'm doing okay, though. Thanks for checking in!

Best,
Evelyn

hasteffen
03-29-2012, 03:25 PM
Hi Evelyn,
I have been thinking about you. I hope that you are healing well. I know it is probably a really tough time right now. Please email me when you are able. How are your kids dealing/ coping? Take care and God Bless!
heidi

Confusedmom
03-29-2012, 11:38 PM
Hi Heidi,

I'm doing pretty well today! I am doing everything I'm told:take lots of little walks, get regular periods of rest, eat healthy food, drink lots of water, take my meds. Biggest surprises thus far have been 1) late afternOon feeling of my back trying to force itself into a backbend, 2)inability to comfortably sit up really anywhere for more than about 10 minutes, 3) profuse sweating that begins every time I fall asleep.

None of these things are insurmountable. I spend a lot of time changing positions during the day, and the heated throw helps a lot. I am actually sleeping incredibly well at night and bet I would sleep right through if I didn't set my alarm for the medicine. I'm afraid to try that yet because I don't want the pain to get too out of control.

My kids seem to be doing okay with everything. I am still reading them bedtime stories, which helps.

I thank God daily for all the family that is helping, the friends and neighbors bringing meals, and all of you on the Forum for calming my fears and answering my questions.

Best,
Evelyn

LindaRacine
03-30-2012, 01:01 AM
profuse sweating that begins every time I fall asleep.

Hi Evelyn...

That sounds like a hot flash. It's something that has happened to me about 99% of the time for the last 10-12 years. I think it may have to do with a change in blood pressure. It's annoying, because it wakes me up right as I'm falling asleep.

--Linda

mabeckoff
03-30-2012, 08:30 AM
I am glad that you are doing so well

jrnyc
03-30-2012, 08:06 PM
hot flashes can be related to age, also...
but...since such a huge surgery has such a big impact on the entire body...who knows why the
flashes are happening...
are you sure using the heated throw has nothing to do with it...?

i would mention it to Lenke or one of his staff and just see what they say...

hope the flashes go away, and your problems resolve...i wish you healing and recovery
until you are 100% back to a new normal...with a straight and sturdy spine..and no pain!

jess...& Sparky

rohrer01
03-30-2012, 08:27 PM
I seem to have more hot flashes when I'm on heavier meds. I think what happens is if you sleep through a dose, your body starts the withdrawal syndrome, which unfortunately includes hot flashes. I have them and it's not age related, although it should be as I'm 43. But my hormone levels all check out at a very "young" age, so I'm looking at a very late menopause. Like I mentioned, I attribute it to the meds.

Confusedmom
03-30-2012, 09:52 PM
It's definitely a hot flash. Could be pre-menapausal, I guess, as I'm 40. More likely I think my body is still shedding the extra fluids from the surgery. I haven't been skipping pain doses, as I'm too afraid to wake up in agony. So, my phone alarm goes off every two hours, I pop my pills and go back to sleep. Anyway, it's not a big deal--just an annoyance.

On another note, what is a "normal" starting dose for oxicontin? They've got me on 20 mg 2x per day. Seems a little low if they really want me to sit up for 1/2 to 1 hour at a time. I'm in agony after about 6 minutes sitting. Weird, because evething else is okay: standing, walking, dressing, even stairs.

Do any of you remember what doses you were given of oxi early on?

golfnut
03-30-2012, 10:10 PM
Evelyn,
I had oxy. every 12 hours but was allowed to take Norco (1 or 2 every 4-6 hours) I hated that because it wasn't specific. The allowed dosage could be from 4 a day to 12 a day.

jrnyc
03-30-2012, 10:16 PM
hi Ev
just a point of comparison...you know i didn't have the surgery...yet..
but i am on 30 mg a day of oxycontin as needed...also am given a lot of
10 mg hydrocodone by pain doc in NYC every month....if i take the oxy, i sometimes
don't need the hydrocodone..though once the steroid shots leave my body, i
expect to be in much more pain...

i was surprised when i read the amount of oxy you were put on...
to me, it seems low...but i am not a doctor...just a patient...who hasn't had back surgery...yet...

i am wondering if your body is just thrown off from major surgery, and the hot flashes won't last...
i started at 45...they got so bad at nite that i woke up with soaking wet sheets and quilt!!...i went on hormones...
eventually switched to bio identical...they are 100 times better...completely different, in my opinion...

hope you feel better every day...
jess...& Sparky

JenniferG
03-30-2012, 10:48 PM
I just asked my partner and he said I was on 20mg Oxycontin taken with 1 x 500mg Panadol (Tylenol) twice a day initially. It didn't control the pain. They upped it until finally I was on 40mg Oxycontin with 1 x 500mg Panadol, twice a day. Plus Endone every 6 hours. At that point I felt no pain. I also slept like a log and felt great!

Confusedmom
03-31-2012, 09:39 AM
Thanks, everyone. I should have mentioned they also prescribed Norco the same as for Karen-- 1 or 2 every 4-6 hours. As I am more or less at the top of my tolerable pain limit, I take all the Norco allowed. Norco is Hydrocodone 7.5 + 325 mg Tylenol. Yes, I realize that is 3,900 mg of Tylenol in 24 hours. I'm planning to call Dr Lenke's office on Monday and ask if they are concerned about that given the recent FDA advisory panel recommendation.

jrnyc
03-31-2012, 11:01 AM
why not 10 mg with 325...that is what i have....
????

jess

leahdragonfly
03-31-2012, 12:07 PM
Hi Evelyn,

I am glad to hear you are doing so well thus far. I think Norco alone is going to be barely adequate for most people in the first few weeks--There have been others here who suffered a lot in the early recovery period on Norco or Vicodin alone. It really isn't rated for severe pain. I was on Oxycodone 20 mg every 4 hours, and for the first week I also took Oxycontin 10 mg every 12 hours. I needed every bit of this, and I really hate pain meds. It is just so important to have good pain control especially the first month, so that you don't have to suffer so much. You will heal better if you are not in bad pain all day long. I know, I cheated myself of adequate pain control after my first surgery because the meds made me feel so bad.

I would be concerned too about all that Tylenol, so I think a call to the office would be a good idea.

Best of luck,

naptown78
04-01-2012, 10:40 AM
It's definitely a hot flash. Could be pre-menapausal, I guess, as I'm 40. More likely I think my body is still shedding the extra fluids from the surgery. I haven't been skipping pain doses, as I'm too afraid to wake up in agony. So, my phone alarm goes off every two hours, I pop my pills and go back to sleep. Anyway, it's not a big deal--just an annoyance.

On another note, what is a "normal" starting dose for oxicontin? They've got me on 20 mg 2x per day. Seems a little low if they really want me to sit up for 1/2 to 1 hour at a time. I'm in agony after about 6 minutes sitting. Weird, because evething else is okay: standing, walking, dressing, even stairs.

Do any of you remember what doses you were given of oxi early on?

Hi Evelyn,
Regarding the "hot flashes", I had those after my first surgery, when I was on Fentanyl patches for a few months. I thought I was going through menopause, and then when I stopped the Fentanyl, lo and behold the hot flashes stopped! So what I am saying is, it might be your pain meds.

And...I started on Oxycontin 20mg every 12 hours with Percocet every 4 to 6 hours as needed. I was on that for at least the first month. Took the Percocet religiously. Are you using plenty of pillows when you sit? Behind your back for support and under your knees.

Hang in there...this is the toughest time. It gets better ;-)

Confusedmom
04-01-2012, 11:24 PM
Thanks, Kristy. I found a wooden rocking chair that I can tolerate just a little longer with plenty of pillows. Seems like I need upper back support to sit, which is strange since my big correction was lumbar, but whatever.

How are YOU doing? I've been thinking about you and your revision.

Best,
Evelyn

Confusedmom
04-06-2012, 12:55 PM
Hi all,

Sorry I seem to be taking up a disproportionate amount of space on the forum lately. I just can't live without you all!

Anyway, here are the questions:

-what do I do about shaving my lower legs? I googled long-handled razors and could only find $30 and up versions. Are there disposables?

-how/when did you start to wean meds? I know people start driving at 4 weeks, which is next week for me, but I'm still on oxycontin & Norco. I have to be off both of these to drive, right? And Valium, too?

-I still can't sit up for more than about 20 minutes before I need to take a break and lie down flat on my back. Is that "normal"? I know everyone is different, but is it within the realm? I can walk and climb stairs fine.

Thanks in advance for any and all advice!

Best,
Evelyn

walkingmom
04-06-2012, 01:38 PM
-what do I do about shaving my lower legs? I googled long-handled razors and could only find $30 and up versions. Are there disposables?

Hi Evelyn,

As for as the razor, I took the long handled bath sponge that I got in my spine kit and attached my regular razor to the handle using water-resistant tape. I was able to prop my leg on a large shelf area in my shower and was able to easily reach all areas of my leg. I am fused to L3, but I was given the same post-op bending restrictions as those fused to the sacrum.

Donna

naptown78
04-06-2012, 01:41 PM
Hi all,

Sorry I seem to be taking up a disproportionate amount of space on the forum lately. I just can't live without you all!

Anyway, here are the questions:

-what do I do about shaving my lower legs? I googled long-handled razors and could only find $30 and up versions. Are there disposables?

-how/when did you start to wean meds? I know people start driving at 4 weeks, which is next week for me, but I'm still on oxycontin & Norco. I have to be off both of these to drive, right? And Valium, too?

-I still can't sit up for more than about 20 minutes before I need to take a break and lie down flat on my back. Is that "normal"? I know everyone is different, but is it within the realm? I can walk and climb stairs fine.

Thanks in advance for any and all advice!

Best,
Evelyn

Hi Evelyn,

I never had problems sitting like you are having, so I can't answer that question. I do know it does take time for the feeling of pressure in your lower back to go away.
You are def not ready to drive yet if you are having trouble sitting and are still on that much medication.
After my first surgery, I was on lots of pain meds for a long time. I didn't start driving for a couple of months. At first it feels really uncomfortable to drive until your back loosens up somewhat.

My secret to shaving my legs: I use a shower seat and a handheld shower head. I don't know if you have a bathtub or a shower stall. But either would work. I just sit down on the shower seat and lift my leg up (while keeping my back straight) and put my foot against the wall, or on the edge of the tub. That way I can reach my lower leg with my razor without bending. I've done ever since I had my first surgery and find it the easiest way to get the job done. Even after the BLT restrictions are lifted, I tend to protect my back by doing things without bending or twisting if I can help it.

I hope you are feeling better, Evelyn! I can't believe its almost been 4 weeks already ;-)

jrnyc
04-06-2012, 01:43 PM
dear Ev
who better to be on forum than you...?
you just had surgery....please do NOT apologize for taking up space on forum!!!!
i think of this forum as just for that purpose...for patients to use as much as they need it...

hope you feel a little better every day!
jess...& Sparky

golfnut
04-06-2012, 01:58 PM
I just used disposable razors and attached them to a long handle from a back scrubber and replaced them as needed. I didn't drop the Oxy. until about 4 weeks and stuck with the Norvo for another week or so. I was okay with Tylenol after I gave up the heavy pain meds. As you know, everyone is different and it just depends on your pain level. I would reduce gradually as you feel you are able.

Confusedmom
04-06-2012, 02:21 PM
Hi all,

Sorry I seem to be taking up a disproportionate amount of space on the forum lately. I just can't live without you all! :)

Anyway, here are the questions:

-what do I do about shaving my lower legs? I googled long-handled razors and could only find $30 and up versions. Are there disposables?

-how/when did you start to wean meds? I know people start driving at 4 weeks, which is next week for me, but I'm still on oxycontin & Norco. I have to be off both of these to drive, right? And Valium, too?

-I still can't sit up for more than about 20 minutes before I need to take a break and lie down flat on my back. Is that "normal"? I know everyone is different, but is it within the realm? I can walk and climb stairs fine.

Thanks in advance for any and all advice!

Best,
Evelyn

Confusedmom
04-06-2012, 02:29 PM
Oops, not sure how I managed to post the same message twice! Anyway, thanks for all the quick answers. I'm going to go find something to tape my razor to right now!!

JenniferG
04-06-2012, 03:58 PM
I taped a long handled wooden spoon to my razor. I don't have one of those steps built into our shower so brought in a little plastic step/stool to put my foot on. The first time my partner did it for me with a nice fresh blade. It felt so good to have smooth legs. The things our partners do for us, I bet they never thought would be part of the deal!

I didn't start reducing Oxycontin until 6-7 weeks so you're doing well just to be thinking about it.

I also think you're doing well to be sitting comfortably for 20 minutes at under 4 weeks.

Agree with Jess, this is the time to make max. use of the forum and we're all here to help if we can.

Doreen1
04-06-2012, 10:27 PM
I used Nair hair removal creme for a few weeks then figured out a way to shave my legs with my foot propped up on the built in shower bench.

Warmly
Doreen

leahdragonfly
04-07-2012, 10:14 AM
Hi Evelyn,

I really think 4 weeks is too soon to drive for most of us, especially since you are uncomfortable sitting and still taking plenty of meds.

I started driving at 8 weeks after both of my surgeries (original one T8-sacrum, then major A/P revision for broken rods). I just wouldn't have felt comfortable driving before that. Also, remember that you must not twist, which makes it difficult to back up in parking lots or to see when merging. I rely on my back-up alarm and mirrors to back-up.

Good luck,

Confusedmom
04-29-2012, 05:06 PM
More post-op questions:

--When is it "safe" and/or legal to drive? I'm still on Norco & Valium but feel level-headed. Do I need to be completely off these? (I'm fine with being able to turn my head.)

--Did any of you use a laundry service or grocery delivery service for a while? How did that work out?

--When people talk about walking a mile per day per month of recovery, they're talking about walking a mile in the course of a day, right? In other words, not going out and walking 2 miles all at once at 8 weeks?

--Is it bad to use a heated blanket a LOT? As in, I lie down on one between every activity. I keep it on medium or low and it is not directly touching my incision.

--Tips from cat people? How to scoop the cat box???

I think that's it for now. Thanks!!!

LindaRacine
04-29-2012, 05:38 PM
More post-op questions:
When is it "safe" and/or legal to drive? I'm still on Norco & Valium but feel level-headed. Do I need to be completely off these? (I'm fine with being able to turn my head.)
I don't know about legality, but patients are usually told they should not start driving while they are still taking narcotics. I think that's mainly because, if you're in an accident, or get stopped for something else, and if for any reason your sobriety is tested, it could be a disaster. When I was almost off of drugs, I allowed myself to drive as long as I hadn't had anything for 12 hours.

More post-op questions:
Did any of you use a laundry service or grocery delivery service for a while? How did that work out?
Since I live alone, I used grocery delivery. Safeway (the big grocery chain in northern California) charges something like $12, with a minimum purchase of $50. The delivery people were always prompt and reliable, and were not allowed to accept tips.

When people talk about walking a mile per day per month of recovery, they're talking about walking a mile in the course of a day, right? In other words, not going out and walking 2 miles all at once at 8 weeks?
Everyone is different. Do not try to go from no walking to 2 miles. You should build up gradually to a comfortable level.

Is it bad to use a heated blanket a LOT? As in, I lie down on one between every activity. I keep it on medium or low and it is not directly touching my incision.
Not sure how anyone could know this, but you should check with your surgeon's office.

Tips from cat people? How to scoop the cat box???
I had someone taking care of my cat, as I knew it would be an issue postop. There are automatic litter boxes. Some are better than others. I used to use this (http://www.litter-robot.com/) one, and really liked it. It's a bit expensive. You could also use the technique I described earlier today, for feeding pets. (Drill holes in the rim of the litter box through which you can thread and tie string.)

--Linda

Confusedmom
04-30-2012, 08:13 AM
Thanks, Linda! I am definitely going to check out that litter box. Although it will probably freak out my 17 year old cat!!! :)

naptown78
05-04-2012, 09:31 PM
More post-op questions:

--When is it "safe" and/or legal to drive? I'm still on Norco & Valium but feel level-headed. Do I need to be completely off these? (I'm fine with being able to turn my head.)

--Did any of you use a laundry service or grocery delivery service for a while? How did that work out?

--When people talk about walking a mile per day per month of recovery, they're talking about walking a mile in the course of a day, right? In other words, not going out and walking 2 miles all at once at 8 weeks?

--Is it bad to use a heated blanket a LOT? As in, I lie down on one between every activity. I keep it on medium or low and it is not directly touching my incision.

--Tips from cat people? How to scoop the cat box???

I think that's it for now. Thanks!!!

Hi Evelyn,

I hope you are feeling well...I can't believe it has been 8 weeks already!

To answer your questions...I think everyone does it differently regarding the pain medication and driving. With all three of my surgeries I started driving while still taking some pain medication. I had to go back to work in varying amounts of pain each time. But I just take pain medication infrequently and usually after a tough day at work.

I have used Pea Pod grocery delivery. But only because I HATE grocery shopping! Their prices are not bad. I have never used a laundry service.

I have never been one to set out on a "walk". At my job we have a wellness program and everyone got free pedometers. So I wear one at work every day. I work in a busy clinic. I just learned today that all the steps I take in a day just by working added up to 3 1/2 miles. Hah! So, yes , I think that should count just as much as a formal walk.

I still use a heating pad when my back wants to act up. It feels so good. And I LOVE my heated seat in my car. I don't know how it could be a bad thing.

As far as the litter box...that is hubby's job. If I ever have to do it, I just squat down. But , I try to avoid it, he he.

titaniumed
05-05-2012, 08:18 AM
Hi Evelyn

Some thoughts for a Saturday morning......

This might not be the time since you are in your recovery, but I think if I ever got another kitten again, I would put the effort in to toilet training. If one can get this to work, it saves countless hours of smelly litter box duty. The automatic litter boxes are also great ideas....
http://www.youtube.com/watch?v=p943wK0tSWQ

At 6 weeks, you are probably thinking that you need to get off meds.....which is not easy, and some pain will result.....Spacing out time between doses is a good way to do this...keep notes. You will eventually get there. When I quit, the pain went up for about 2 days and then reduced quickly....Do not cut any pills without your doctors approval. If you donít know which ones to cut, you should call to verify.

Drinking plenty of water will flush toxins and chemicals.....I was sipping on protein smoothies through the day, just jamming loads of nutrients into my system, and thinking healing thoughts constantly. Multiple walks through the day instead of the one pain producing marathon are what you want to do. Walking is so beneficial.....and not just for recovery, for everyone.

There is no way that anyone can go through a totally pain free recovery....I donít think its possible. I had discomfort with the muscles that run over the screw heads and realized that these need to be toughened up. Its almost like a karate expert who chops cinder blocks in half, he doesnít get there without a pain effort. Walking, and thinking healing thoughts, and mind distraction, are needed. When your mind is distracted, you realize that you have not thought about the pain for the last few moments....it was something I used, and in the long run, it worked. You will eventually get to the point where you will NOT think about your back. Its part of total recovery. I donít think about my back anymore now.

Meds can act as enzyme inhibitors......can I slam meds? Should I start a new thread on this? I have countless folders saved....Hmmm.......people will get mad at me. lol
Iím not a biochemist but I do read all sorts of boring material that relates to us.
From cat litter to biochemistry in one thread....LMAO
Ed

Confusedmom
05-05-2012, 08:03 PM
Thanks Kristy & Ed,

Wow, that's quite a video, Ed. Almost as tough as potty training your kids. I think I will try it with my younger cat when my 17-year-old kitty is no loner with us.

I'd be interested to hear more about your theory of pain meds, Ed. Sounds like you think they interfere with healing?

Kristy, that's awesome that you walk 3.5 miles at work! Is that now, post-revision?!
I need to get a pedometer.

In other news, I sneezed for the first time post-op today. (How I went 7 weeks without sneezing, I'm not sure.) Anyway, OUCH!!! Fortunately it seems to have been a fluke, rather than the start of a cold.

I saw a picture of myself seated watching my daughter, and I must say I have some kickin' posture!!! That's another one to add to Ed's fusion benefits.

Cheers,
Evelyn

golfnut
05-05-2012, 08:24 PM
Sneezes are still painful for me at 16 months post-op. I hope that is normal for a fused spine.

naptown78
05-06-2012, 10:30 AM
Thanks Kristy & Ed,

Wow, that's quite a video, Ed. Almost as tough as potty training your kids. I think I will try it with my younger cat when my 17-year-old kitty is no loner with us.

I'd be interested to hear more about your theory of pain meds, Ed. Sounds like you think they interfere with healing?

Kristy, that's awesome that you walk 3.5 miles at work! Is that now, post-revision?!
I need to get a pedometer.

In other news, I sneezed for the first time post-op today. (How I went 7 weeks without sneezing, I'm not sure.) Anyway, OUCH!!! Fortunately it seems to have been a fluke, rather than the start of a cold.

I saw a picture of myself seated watching my daughter, and I must say I have some kickin' posture!!! That's another one to add to Ed's fusion benefits.

Cheers,
Evelyn

Seven weeks without a sneeze? Wow! And in the springtime too...
Yes, it is a little tender to sneeze, even a couple years out.

I was surprised how my steps added up to miles too. My job involves lots and lots of walking so that is an advantage for me. I agree with Ed that distraction helps. My back has gotten much much better since I returned to work and have something else to think about, more activity and friends to talk to, and in my case there are patients that come in with problems far worse than mine.

Lol, I have had so many comments on my posture too! I have tried to slouch and can't. You don't know how much I love that. I use to have to remind myself not to be so slouchy and tippy (to the left in my case). Enjoy it ;-)

LindaRacine
05-06-2012, 10:51 AM
The sneezing thing was very strange for me as well. I typically sneeze at least 2-3 times a day. I was scared to death, after my first surgeries, of what would happen. Strangely, I didn't sneeze until I was 4-5 months postop. The body is truly strange at times.

Doodles
05-06-2012, 02:04 PM
Isn't that crazy? I remember not sneezing for weeks. Then when I did it was quite memorable. I started counting my sneezes--had had something like 7 by 4 months. My sneeze still sounds different than it used to pre-surgery since I still sort of brace for it I guess. Janet

Confusedmom
06-07-2012, 06:07 PM
Hi all,

I'm freaking out a bit. For the past week, any time I sit for any length of time (like 30 min.) I get this dull pain in my hip and kind of sharp pain on the outside left of my lower left leg. Feels a lot like what I would call "sciatica," although I used to get that in my upper right leg, pre-op. Today I noticed that if I lean at all on that leg, I get this kind of "hit the funny bone" twinge in my hip. This happens with just the slightest lean, like reaching for a dish in the sink to load in the dishwasher. I'm concerned because this is new pain. I guess it's technically possible that it was here all along and I am only now down far enough on the pain meds to feel it, but I don't think so. My fear is that somehow the fusion process is pinching a nerve and it's not going to go away. Alternatively, I'm worried I somehow messed up my alignment already. My mom did break pretty hard in the car recently with me riding along, but I didn't start to feel this pain until a week later. Thoughts? Can this type of thing come & go? Hope so! I'm probably going to call Dr. Lenke's nurse tomorrow and see what she has to say.

Thanks!
Evelyn

jrnyc
06-07-2012, 06:14 PM
Ev, just a question....
did you ever have any pain related to sacroiliac joints...?
i had sciatica that went down left leg, from hip...
i know sciatica is supposedly nerve related....
nothing helped mine besides time...and SI joint injections...
i have no idea what is causing your pain...just
wondering if you ever had anything connected to
the SI joints bother you...

hope the pain goes away soon...

jess...& Sparky

Confusedmom
06-07-2012, 09:20 PM
Hi Jess,
After both my pregnancies, I had to have physical therapy for lower back pain. The second time the PT said my SI joint wasn't aligned correctly and she gave me exercises that helped get it back in place. She also had me wear a "SI belt," which helped hold the joint in place once it was aligned. Do you think this could have something to do with my hip pain? And how would fusion to the sacrum factor in? I wish I knew more about the mechanics. Thanks!

LindaRacine
06-07-2012, 09:35 PM
Hi all,

I'm freaking out a bit. For the past week, any time I sit for any length of time (like 30 min.) I get this dull pain in my hip and kind of sharp pain on the outside left of my lower left leg. Feels a lot like what I would call "sciatica," although I used to get that in my upper right leg, pre-op. Today I noticed that if I lean at all on that leg, I get this kind of "hit the funny bone" twinge in my hip. This happens with just the slightest lean, like reaching for a dish in the sink to load in the dishwasher. I'm concerned because this is new pain. I guess it's technically possible that it was here all along and I am only now down far enough on the pain meds to feel it, but I don't think so. My fear is that somehow the fusion process is pinching a nerve and it's not going to go away. Alternatively, I'm worried I somehow messed up my alignment already. My mom did break pretty hard in the car recently with me riding along, but I didn't start to feel this pain until a week later. Thoughts? Can this type of thing come & go? Hope so! I'm probably going to call Dr. Lenke's nurse tomorrow and see what she has to say.

Thanks!
Evelyn

Hi Evelyn...

First, you should know that I think most of us believe we've done something to hurt our fusions at some point in the first year or so. With that said, I think it's a good idea to call the nurse. No matter what it is, it's unlikely to be an emergency. I hope whatever it is, goes away as mysteriously as it came on.

Regards,
Linda

jrnyc
06-08-2012, 12:00 AM
hi Ev
i wish i knew the answer of what, if anything,
the fusion did or didn't do in connection to the SI joint...
i think it is a question for your surgeon...
i only know that SI joints can be responsible for
more pain than anyone ever suspects...pre and post
surgery...
hope you can speak to your surgeon's office...
and hope the pain goes away soon...

jess

TwinmomTN
06-08-2012, 06:48 PM
Please let us know what the nurse says about the leg pain. Hopefully it goes away soon. It is frightening when these "new" pains crop up and we don't know if it is "normal" recovery pains or not.

Confusedmom
06-10-2012, 04:49 PM
Hi all,

Thanks so much for your feedback about the leg pain. Linda, I always appreciate your calming advice. I haven't called Dr. Lenke's nurse yet, but I'll let you all know what she says when I do.

In the meantime, I started driving again today! It is such a feeling of freedom after having depended on others for three months!! I really didn't have anywhere to go--just wanted to see if I could tolerate it--so I drove down to the gas station and brought home a half gallon of Oreo ice cream. (Had to celebrate a little!)

Here's some info for those facing surgery: It is not illegal to drive while taking prescription pain killers (at least not in Indiana). However, it IS illegal to drive while "impaired." So, basically, it's a judgement call. I am down to three, 5 mg tablets of Hydrocodone in 24 hours. Plus, I've been taking it for three months, so I know how I react to it. So I felt comfortable driving again today.

Only problem is, I am still extremely uncomfortable sitting up in the car. Sitting is the worst for me, anyway, and the car just magnifies that. I assume I will get used to it over time, though.

In other news, I also went to my first evening out post-op last night. It was a nice dinner party at a friend's house. I got to wear a dress for the first time with a straight back!!! I swear it makes me look 10 lbs lighter, even though my weight is actually the same as pre-op. It was so nice to zip up a dress without having to maneuver it around a rib hump! I stayed at the party for four hours (alternating sitting & standing)!!! So, life is very gradually returning to normal.

Hope everyone had a great weekend!

Best,
Evelyn

JenniferG
06-10-2012, 06:00 PM
Hi all,

Thanks so much for your feedback about the leg pain. Linda, I always appreciate your calming advice. I haven't called Dr. Lenke's nurse yet, but I'll let you all know what she says when I do.

In the meantime, I started driving again today! It is such a feeling of freedom after having depended on others for three months!! I really didn't have anywhere to go--just wanted to see if I could tolerate it--so I drove down to the gas station and brought home a half gallon of Oreo ice cream. (Had to celebrate a little!)

Here's some info for those facing surgery: It is not illegal to drive while taking prescription pain killers (at least not in Indiana). However, it IS illegal to drive while "impaired." So, basically, it's a judgement call. I am down to three, 5 mg tablets of Hydrocodone in 24 hours. Plus, I've been taking it for three months, so I know how I react to it. So I felt comfortable driving again today.

Only problem is, I am still extremely uncomfortable sitting up in the car. Sitting is the worst for me, anyway, and the car just magnifies that. I assume I will get used to it over time, though.

In other news, I also went to my first evening out post-op last night. It was a nice dinner party at a friend's house. I got to wear a dress for the first time with a straight back!!! I swear it makes me look 10 lbs lighter, even though my weight is actually the same as pre-op. It was so nice to zip up a dress without having to maneuver it around a rib hump! I stayed at the party for four hours (alternating sitting & standing)!!! So, life is very gradually returning to normal.

Hope everyone had a great weekend!

Best,
Evelyn

Congrats on your latest mile-stone. It's such a wonderful feeling getting back to normal. Wearing the dress would have been such a thrill and yes, I can relate to the feeling of freedom, driving that first few times.

Sitting in the car is still uncomfortable for me. No pain, just uncomfortable. The seat back curves backwards and I'm solidly curved forwards in the lumbar area. Simply fixed by a small cushion to fill that gap.

Susie*Bee
06-10-2012, 06:11 PM
Singer (Chris) had leg pain for quite awhile after her surgery with Dr. Boachie. You might want to send her a PM and ask her about it. Or you can try doing a search. Best wishes!

golfnut
06-11-2012, 01:24 PM
Evelyn,
Did you find out anything about your leg pain? I still use a pillow behind my back in the car. Isn't it great to be driving again?

Confusedmom
04-10-2013, 10:12 PM
Hi Everyone,

I dredged up this thread again because I'm now officially one-year post-op! Actually, I'm a little past that.

I am still undecided ("confused," you might say), whether surgery was right for me when I did it. I went from nearly pain-free but with a very large progressive curve to a small but consistent degree of discomfort/pain. The pain is in my left hip and is most noticeable when I try to exercise vigorously. I will say, though, that I am very glad the surgery is behind me, not in front of me. And I am thankful my outcome is as good as it is. My back is nearly straight, and I rarely have leg pain anymore. (I had a bout of sciatica pre-op and some leg pain post-op.)

I sent this message to a friend, and thought I would re-post it here:

I had my appointment with Dr. Lenke a few weeks ago. I told him I thought my pelvic screw was moving, and he looked at my X-rays closely. He said he didn't see anything wrong, but suggested getting a CT of the L5-S/I joint. I asked his fellow if a CT would change the treatment, and he said "no." So, I decided not to get a CT because of the radiation. (Why can't I get an MRI if I have cobalt-chromium rods?) Dr. Lenke said I should do physical therapy, get an injection, and if the pain still bothers me at two years, he will remove the screw.

He said he can see signs of fusion, but it's not possible to tell from an X-ray whether I'm fully fused. Still, he said I have no restrictions at this point. He also said my rib hump appears to be within the normal range of "settling" you get in the first year. It appears bigger to me than it did immediately post-op, but I guess that could partly be muscle atrophy. (My height has gone back down a bit from just over 5ft 3 to just under, as well.)

I got to meet with Janet (the physical therapist), and she gave me some new exercises to stretch my hamstrings and calves, etc. Contrary to Dr. Lenke, she doesn't recommend bending, lifting or twisting. Also, she said logrolling "is forever."

Dr. Lenke said the general soreness/fatigue in my back is normal, and that I still need to rebuild muscle. He said an older person, like 75, might not notice a difference, but younger people with long fusions need to work harder to rebuild the muscle they were used to having.

Also, for the pelvic screw, he said it's possible that I have a "fracture." His fellow said that meant the screw, not my hip. Apparently a broken screw can cause irritation. Alternatively, he said the pain could be from movement in the unfused S/I joint, which would take all the stress of a long fusion. In fact he said pain there could be an indication the rest of the spine is fusing well because it puts more pressure on that joint when the rest doesn't move. I don't completely buy this explanation, as I have had this pain since at least 10 weeks post-op. I am still afraid I somehow screwed up the hardware.

The bottom line of all of this for me is exactly what I expected: do some physical therapy and hope the pain goes away in the next year. I am not sure I'm going to get an injection. I'm not sure the potential benefit outweighs the risk. My pain is tolerable most of the time, and I rarely take even Advil or Tylenol (1-2 times per month, maybe).

I am pleased that I feel like I am very slowly moving off the assistive devices. I can put my socks on now (thanks, Heidi for the inspiration!). I can shave without a long-handled razor. I can squat to pick things up off the floor and load the dishwasher. I still use a grabber when I am cleaning up, but it's more for convenience and to not irritate my hip. The car and sitting in general are getting much better, too. Though I still wouldn't go as far as calling them "comfortable." Plus, I like the shape of my back and the fact that I have a waist again.

This next year is going to be about gradually getting more physically fit, I hope. Plus I need to lose the 15 pounds I have put on in my more sedentary post-op year. I think I can do it, as I can walk on the treadmill for 40+ minutes at a time now. Just need to avoid the Easter/Valentine's/Halloween candy!!! I have found it very easy to over-indulge in "comfort" food this past year.

Well, that's all for now. If you made it all the way through this, thanks!!

Best,
Evelyn

JuliaAnn
04-11-2013, 08:06 AM
Thank you for the update, Evelyn. It sounds like you are doing really well! That's great that you have such a straight back and very little leg pain. I was wondering about that.
I am encouraged reading your update. I can identify so much with your post, such as eating comfort foods. I haven't been doing much walking but should get back to that.
Thank you for the info about your hip. Just yesterday I got a pain in my left hip, so tender that it has caused more of a limp and hurts when I lay down. But I'll just wait some days to see if it goes away. Glad you are doing so well.

Irina
04-11-2013, 10:14 AM
Congratulations, Evelyn on your one-year anniversary! As to being unsure, try not to look back and better think that you have a nice straight back that is stable and will not get worse. You mentioned that you're glad that this surgery is behind you, not ahead of you and I totally with you on that one even though I still have a lot of healing to do.

golfnut
04-11-2013, 10:21 AM
Evelyn,
Thank you for posting of your improvements as well as some issues you are still having. I eventually noticed improvements in year 2 and even now in the beginning of my third year. At a year, I still couldn't sit very long without noticing a pain in my tailbone-it felt like it had been bruised. As soon as I stood up and walked, it felt better. At some point during the 2nd year, it dawned on me that I was not longer having the need to stand. After my two year anniversary, I quit needing a pillow behind my back in the car unless it was a long ride. I actually try to work on abdomen muscles by just sitting up straight and not leaning back. A church pew is much better now! I know that I regained a lot of muscle strength during year 2 as I was permitted to do more exercises. My flexibility has improved, too. My point of all of this is that I think you are doing well and will continue to notice improvements. Congratulations on your one year anniversary!
Your new picture on Facebook looks fantastic.

JenniferG
04-11-2013, 07:01 PM
Hi Evelyn,

Just wanted to reiterate what others have said, that the improvements continue into the second year and you may even find, the third year. I strongly believe you will be much more convinced this time next year, that you did the right thing in having the surgery.

I am fascinated how instructions can vary so much: "I got to meet with Janet (the physical therapist), and she gave me some new exercises to stretch my hamstrings and calves, etc. Contrary to Dr. Lenke, she doesn't recommend bending, lifting or twisting. Also, she said logrolling "is forever." "

I never log-rolled except for once or twice in hospital. My surgeon had a lever/handle placed onto the side of my bed and from then on, I pulled myself up, and never log-rolled again. Cross fingers it hasn't done me any harm. It doesn't seem to have.

walkingmom
04-11-2013, 07:28 PM
Hi Evelyn,

Congratulations on reaching that 1 yr post-op milestone. As I am approaching my 2 yr anniversary, I would concur with the others saying that you will continue to improve. It's just more subtle now. It hit me a month ago when I met with my family doctor and I told him that I am really the strongest that I have ever been. Prior to my surgery I wasn't able to do any upper body strengthening because it would just make my back hurt. Now I am doing weights 2-3 times/wk, and it so much easier.

Hope you will be able to find an exercise routine that will work for you as you head into your second post-op year. Thanks for sharing.
Donna

Confusedmom
04-13-2013, 11:15 PM
Thanks, everyone, for the well-wishes! I do believe I will continue to improve. I'm with Susie Bee and some others who had slower recoveries. But I AM recovering, and for that I praise God! Karen, you mentioned the car--yes, I just took my pillow out of the garage because I don't need it anymore!! Jennifer, that is strange about the different instructions, but I would say Dr. Lenke's PT is extremely conservative--even more so than Dr. Lenke himself. I have gotten up a few times without logrolling, and it seemed fine. It's just that logrolling is my habit now.

Best,
Evelyn

Confusedmom
07-07-2013, 10:28 PM
1504

Hi all,

Thought you all might enjoy this art I saw at my son's PT office. (See attachment above.) I like the rainbow colored vertebrae.

Evelyn

susancook
07-08-2013, 01:56 AM
The image is beautiful! Thanks for sharing!
Susan

mabeckoff
07-08-2013, 12:25 PM
The picture is wonderful. Thanks for sharing it with us

Melissa

tae_tap
07-08-2013, 12:48 PM
That is very pretty art work.
Tamena