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txmarinemom
11-18-2007, 10:54 AM
My right thoracic curve (T5-L1 - dx at age 10) last measured 53 Oct 11, 2007. It's been stable since adulthood but since the AIS dx, has always always hurt on that right side.

QUESTION #1:

When standing (even in a bikini), my curve is barely noticeable unless someone knows what to look for (so I'm told - I should probably get a picture, eh? - LOL ... maybe my friends are just being nice ;-), and my rib hump is -this I DO know - is visible only on bending. Most people go *OMG - I would have never known!* when I bend over and it becomes VERY obvious.

I've always made a conscious effort to keep my chest wall stretched and hold my right shoulder back, so maybe this has helped appearance, if not the pain.

My right ribcage IS visibly higher when lying on my back. This I can see for myself.

It is common to be able to hide it well enough via posture that people are shocked when they see the relaxed curve?

QUESTION #2:

I've been doing yoga, core strengthening, (and for lack of a better description) torso shifts (you know, holding shoulders straight and pushing my torso as far as possible to each side), walking backbends down the wall and lying down (on a raised beam) shoulder extensions to stretch my chest wall (for my right dropped shoulder).

I know these muscles will be seriously adjusted after correction, and my main goal is gaining as much pre-op flexibility as possible. Is there anything else y'all can suggest to lessen the shock post op?

QUESTION #3:

I've been SO amazed at the post ops pics (thanks to all you ladies for sharing!). Although a scar is FAR down my list or concerns, and I know we all scar differently, is there anything you did to prep the skin pre-op that will help? What is the most common method of closure (steri strips, staples, stitches, etc.)? How soon after surgery can you start with Mederma or a siimiliar product?

QUESTION #4:

How aware of the pedicle screws are you after surgery, and how much pain do they cause in the immediate post surgery time frame?

QUESTION #5:

I'm not yet sure whether I'll need grafting. For those who did not require grafting, how intense was the pain where fused?

QUESTION #6:

Overall - and yes I know we're all different, what was the most painful thing for you immediately after surgery?

(and the kicker) ... QUESTION #6:

Is there anyone who hurt so badly before surgery (I'm still SO amazed to read on so many sites that scoli doesn't cause pain ...) that you got even one *whit* of relief very soon post op?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'd never even considered what I've read here lately on learning to adjust to a new center of balance ... interesting!

From the bottom of my heart I thank you all for the encouragement, information and support I've found here. I hate that any of us were dealt this card, but you've all been *such* a Godsend to someone seeking facts.

Hugs to all.

Regards,
Pam

Houston Curves
11-18-2007, 12:24 PM
I can only answer some of your questions as I haven't had my surgery yet. First of all, when you have compensating curves (even if not completely compensating), yes you can hide your scoliosis at the cost of more pain...I have. Most people are shocked to learn about my scoliosis too, but those same people gasp if I bend over or show them a scanned copy of one of my x-rays.

I have been in pain as long as I can remember, and I see only the possibility of more pain in the future. I do hold myself in a more "proper" posture (and have since I was a teen) in order to hide my scoliosis, and that does make it even more painful, but I obviously weighed those alternatives when I was younger and made a choise to hide my condition as much as possible. In my younger days, I even had people comment about how good my posture was...you gotta love it! :D Even so, I could never carry my purse on my right shoulder as the left is higher.

As for the pedicle screws, though I don;t have them yet, I've read a lot on the subject and their noticability seems to depend on your weight...smaller people seem to feel them more and heavier people feel them less. This seems to have to do with the "padding" around them. Also, it seems to be a "crap shoot" as to whether you end up with nerve irritation in the area of a pedicle screw. However, I am sure the others on this site who have actually had their surgery can enlighten us both on this topic much better. So, I will defer to their wisdom. Good luck and God bless.

Ann

txmarinemom
11-18-2007, 12:33 PM
"Even so, I could never carry my purse on my right shoulder as the left is higher."

I never thought about it, but I'm a "left purse holder" as well. Maybe just because I'm right handed ...

That said, I really only notice the drop of my right shoulder with silly regular style bra straps ... bless whoever invented the racerback type ;-).

Regards,
Pam

geo
11-18-2007, 01:21 PM
My curve was measured at 52',and then 55' pre-surgery. A majority of my pain had always been to the right of my curve also.

1 - There is only one person in my life who has been able to see my scoliosis, and know it exists without me telling them, and she is a nurse who has worked with a scoliosis doctor before! She said she could tell because one shoulder blade protruded more than the other. Otherwise, I have also been told what good posture I have, and people were surprised to hear about me also. I had compensating curves in my C and L areas, so that made me look balanced.

2 - I don't know what is recommended for increasing flexibility pre-op. My main exercise was walking a LOT, and my physical therapist in the hospital said she was glad to see someone prepared for surgery, because I was able to walk and climb stairs without any problems, and able to walk multiple times a day, which your doc will want you to do to help the fusion process along. Your leg strength will also be important post-op for bending to reach and pick up things - no bending from the torso anymore!

3 - I tried to keep my skin clean and moist pre-op, trying to avoid acne and things like that. My incision was sewn shut with internal dissolving stitches, and then "glued" on the surface with dermaglue. The nurses all said that keeps the incision very thin/fine, and they were right. I've been using vitamin E lotion for the last few weeks, mostly to keep the incision from drying out too much.

4 - I've got a small frame, and I still don't feel anything I'd attribute to the screws themselves. I am feeling an overall "stiffness" in the area of the fusion, which I think may just be the fusion itself. It just feels very solid and I am conscious of being "held up" by something.

5 - I didn't have grafting. The pain in the area of fusion was non-existent; what I could feel was the incision, which was sore in the way any cut would feel sore. I had pain to the left of my curve for weeks, which I think was muscle pain from the de-rotation of my spine (almost 100 degrees!)

6 - the muscle pain I mentioned above was the most painful thing. The area around the incision was numb, and still is to a lesser degree. The pain was controllable, once I figured out the dosage and timing of my meds. I'd say my biggest challenge, bigger than any pain, was getting sleep!

The pain I experienced pre-op has not made a comeback. In fact, a huge benefit of all this has been the disappearance of headaches! I work at a computer daily, and so always attributed my almost-daily headaches to that. But, I still have the same job, and have only had one headache in all this post-op time! The muscle pain to the right of my curve is gone.

txmarinemom
11-18-2007, 02:29 PM
We sound very similar in curvature, levels and pre-op pain areas, Geo.

I'm curious about the "no bending from the torso" post op. I can certainly see that as the fusion heals, but I'm set for one level lower than your fusion, and Hanson told me it would have very little effect on mobiility/flexibility as little bending is actually done in the thoracic area.

In fact, he actually told me I could be back playing softball at 4 months post op - and released to jog at TWO (as IF ... I do NOT run for fun *now* - LOL!). I haven't gotten the impression anyone here has felt like they CAN, anyway - and instead are more focused on brushing their hair.

I'm due to see him again Dec. 4th, and all this feedback from people actually *living* with a fusion has me filling up a notebook of questions ;-).

You mentioned dissolving stitches: They simply aren't an option for me. My body won't dissolve them, and after a week or so spits them out ... literally. I've been glued, externally sewn, stapled and steri-stripped multiple times with no issues (why, yes ... I *am* a case study in repeat ortho trauma - laff ... the only benefit of which I can determine is I get GREAT appt scheduling ;-) . I'll reluctantly agree *no one* should bang themselves up so many times they know any of this!

You wrote:

"I've got a small frame, and I still don't feel anything I'd attribute to the screws themselves. I am feeling an overall "stiffness" in the area of the fusion, which I think may just be the fusion itself. It just feels very solid and I am conscious of being "held up" by something."

I also have a small frame. Currently 5'2", and 105 lbs (usually on the lesser side). That's good to know it's not a guarantee I'll feel the screws, and much I've read has referred to that probability. I hope this doesn't sound ignorant (and certainly not meant to be insensitive), but as I sit here right now (with the right side of my curve killing me) being "held up" sounds like heaven. I'm in no way minimizing point A to point C - and the hell point B probably holds.

Fully, I realize how much worse off MANY here were/are than me. The spinal fatigue - and the feeling of a weight pushing down on my spine - is SO frustrating. I probably spend more time these days hanging upside down (inversion bed) than a bat ... temporary relief, yes ... but it's the only time I get any relief.

I don't yet know where my rotation measurement falls, but I'd suspect it's fairly severe (and I'll get a guess-timate from the pedicle visibility on Dec 4th ... at initial consult, I'd not yet read Wolpert's book to even know how that was calculated). 5 years ago, my pain mgmt doctor attempted a right side medial branch thoracic rhizotomy (via flouroscopic guided ablation). My spine is rotated enough he couldn't REACH the right medial branch nerves from the right side: He had to go *under* the left side, and only achieved a partial burn.

You mentioned numbness at the incision: I'm not surprised. I have numbness at my my first (of 3) knee surgery - and at my ankle reconstruction site. I also have numbness near the site of 3 cervical rhizotomies ... and the worst part about that one is (for lack of a better description) an occasional itch I can't scratch.

It's so encouraging to read you were able to again sit at the computer daily: As a programmer, that's been a huge concern for me - and I've wondered if I shouldn't start working towards another career. I guess I'll know in time, eh?

How odd to think it's possible this right side curve pain could no longer be there every single minute of every single day. It *has* been for almost 30 years.

Thanks and regards,
Pam

rosie1108
11-18-2007, 02:44 PM
One thing I do that helps me increase my flexibility, and usually relieves pain is: fold a towel in half, roll it up, and put it on the floor. lay down on your side with the towel under the apex of your curve, and relax into it. use a small pillow or another towel to support your head. For maximal results, I try to breathe into the area and stay there for at least 20 mins, just turn on the tv or something.

I also used to do some traction through a chiropractor in my area, and last week my surgeon was actually surprised by how flexible I was on my bending films.

The rolled up towel trick also feels really wonderful if you put it under your low back, and lay on your back. you can even do this when you are in bed if you are having trouble falling asleep due to low back pain.

Hope this helps!

geo
11-18-2007, 03:09 PM
What I meant by no bending at the torso, is that you'll be told that any bending or twisting of your torso is "dangerous", and I took that seriously and stayed stiff as a board! Anytime I dropped anything, etc., I bent with my knees right over the object so that I didn't have to use my back or lean or anything. They also teach you how to log roll out of bed so that you don't bend or twist.

I don't move nearly as stiffly as I did immediately post-op, but I am still careful with how I move because I don't want to do this all over again! I have done little mini-jogs, like to get across a street before a car comes, and it didn't hurt at all. I can't imagine going for a run yet, but I'm not even 4 months post-op. I haven't run comfortably in years, so it's not something on my list of things to do anytime soon :)

Being held up does feel like heaven, compared to how I felt before. I think I am just hyper-conscious of feeling straight instead of crooked! I feel quite regal, actually. Ha ha.

As for the job, I have a desk that raises and lowers, and I use that feature throughout the day. But if you are able to get up and move around, that is a good equivalent, especially if you don't have to go back full time right away.

As for exercises, I forgot about doing the one Rosie mentions - it IS a good one, and really helps stretch where it's needed.

txmarinemom
11-18-2007, 04:43 PM
Rosie, thanks ... it *does* help. I've been bending sideways opposite the curve -touching fingertips and toes - over a 55" diameter ball for months.

I never lost much flexibility - even in adulthood - with my curve, but I also have been very active.

Hopefully, it will help come time for surgery!

vndy
11-18-2007, 06:34 PM
Hi Pam,

1 - My experience has been very similar, only my (extreemely perceptive) stem mom notices (and has actually noticed an increase recently). My boyfriend also says he can see it when I arch a particular way. When he saw my x rays he was still stunned at the severity ("thats bad... how can you stand? how can you sit? I cant believe you can walk with your back like that! oh my goodness...."). Similarly to geo, my curves balance each other out, so generally I look pretty straight, except when I do yoga (bridge pose, if you're familiar) and my rip cage points distinctly to the right. I also have the bra strap issue others have talked about.

2 - I believe yoga is WONDERFUL for us, and is a great help with flexibility. Particularly, I spend a lot of time in twists, and bridge feels really nice with a block under the small of your back (if you can get it just in the right place).

3- I spoke to my dermatologist, and she suggested following the surgeons instructions for the first few weeks, then begining to use a product like mederma after about 3 weeks. She's also going to see me and take a look at how it's healing after about 1.5-2 months, to make sure it's not forming a keloid.

4 through 7 - ask me in a month, when I'll be 2 weeks post op! (!!! yikes that's SOON!)

dajanerz
11-19-2007, 12:05 AM
#1 - My right ribcage was high too - the deformity was only noticeable if i pointed it out or by doing the bend over test, even in swimwear or a form fitting dress - i avoided these types of clothes when i could - but i do live in vegas and it gets hot out here!

#2 - I practiced tai chi for 3 years until i started getting muscle spasms during training. I quit and started doing yoga. There were some poses where I couldn't keep the stance because i would be off balance - but my yoga teacher would have never known about my scoliosis because i was very flexible. When i told her about my surgery, she suggested their restorative flow yoga class to learn poses that can help relax and awaken the body after surgery. They also offered Core Yoga classes as well. I never had the chance to go either one. I would say yoga is the best thing anyone can do prior to surgery and sounds like you have some awesome stretching techniques. The one thing a friend of mine he wished he would have done before surgery was strengthening his core muscles. I didn't do very much of it - but I think it's safe to say that if you are fit - you'll be fine.

#3 - I had a couple stitches and the rest are going to dissolve. I got whatever stitches i had out during my 2 week post op appt. The also used skin glue. My scar is still in it's healing stage and i'm waiting for the rest of the scabs to fall off - i hate being itchy. I'm going to try the Mederma everyone keeps talking about on here.

#4 - The only thing i feel right now is the uncomfortableness (is that a word?) of the incision site and the scarring still. Immediate post surgery pain would be the incision and sore muscles - stiff neck - fear of moving anything.

#5 - I got bone grafted. That was also immediate post surgery pain. They grafted in 2 areas right above my butt (they look like holes) and from that area all throughout my upper thighs, i experienced numbness and the pins and needles affect 24/7. At 4 weeks, those sensations are almost all gone.

The "one" whit of relief I got post-op in the hospital was when after they took my catheter out - after having a nurse assist me to the bathroom and showing me how to sit on the toilet properly - i was able to "clean" myself! With no assistance! haha...

Jane

txmarinemom
11-19-2007, 09:12 AM
Jane wrote:

"My right ribcage was high too - the deformity was only noticeable if i pointed it out or by doing the bend over test, even in swimwear or a form fitting dress - i avoided these types of clothes when i could - but i do live in vegas and it gets hot out here!"

Ditto for Houston, girlie ;-). "Form fitting" wasn't so bad for me, but all my life I've avoided back zip evening gowns. A few years ago I broke down and bought an Ann Taylor absolutely GORGEOUS scarlet bias cut gown. I even bought it a size larger so plenty of room to alter.

Had the tailor pin it on me (perfectly crooked - as needed), and no doubt when it got to the seamstress, she looked at it and thought "no WAY can that be right!". It ended up getting symetrically altered and ruined ...

I was SOOOOOOOOO mad! :mad:

Lesson learned.

Regards,
Pam