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ScoJo
03-30-2014, 04:23 PM
Hello fellow forum participants,

Tomorrow starts my journey to a life with less pain. I will be having a first time scoliosis correction surgery. The anterior portion of the surgery will be tomorrow at UCI with Dr. Bederman. It will be the XLIF method followed by a second surgery for the posterior portion on Tuesday, April 1st. No this is not an April fools day joke!

My fusion will be from the sacrum with pelvic fixation to T4. I am hoping to correct my Lumber curve of 66* and my Thoracic cure of 55* along with my kyphosis (I don't know the degree, but I lean forward a bit). For those who are interested in the clinical side, I found X-rays from 2004 where my curves were both approximately 24*. I am currently 55 years of age, so this large progression has occurred between age 44 and 55.

Many of you helped me to come to the decision to have surgery through your posts and your willingness to speak with directly. In particular, Susan and Melissa personally shared details of their journey.

While I am in the hospital / rehabilitation center, my dear friend SueAnn will be keeping all of you up to date on my progress. Of course, I am a bit nervous, but really at peace with my decision and ready to be on the other side.

Thank you again for all of the great and informative information. I look forward to posting myself in the near future!

Scojo soon to be just Jo

Pooka1
03-30-2014, 05:35 PM
Hi Soon-to-be-just-Jo. :-)

I wanted to wish you luck tomorrow and the next day.

I also wanted to point out that at twin 24* curves at age 45 and now L66* and T55* ten years later you would seem to qualify as a collapse case. That's over 4 degrees a year on your lumbar (starting from 24*!!!) which blows the 1-2 degree per year average progression for curves over 50* completely out of the water.

Also, <30* at skeletal maturity is generally considered to be protective against progression to surgical range. You blew that out of the water by a mile. I think more study is needed on what, if anything, is generally protective against progression to surgical range. I am skeptical there is enough data on this. This will have a huge impact on decisions about conservative treatments for kids.

Anyway, again good luck.

JenniferG
03-30-2014, 06:26 PM
Wishing you the very best, soon-to-be-Jo! It's incredibly exciting to be on your last day of scoliosis pain. Yes, you have the recovery to go through, but each week, it'll be easier and easier until you reach your goal. Thanks in advance goes to your friend who'll update the forum. "See" you on the other side!

Oh, and I should say, you sound "ready!"

LindaRacine
03-30-2014, 08:17 PM
Hi Soon-to-be-just-Jo. :-)

I wanted to wish you luck tomorrow and the next day.

I also wanted to point out that at twin 24* curves at age 45 and now L66* and T55* ten years later you would seem to qualify as a collapse case. That's over 4 degrees a year on your lumbar (starting from 24*!!!) which blows the 1-2 degree per year average progression for curves over 50* completely out of the water.

Also, <30* at skeletal maturity is generally considered to be protective against progression to surgical range. You blew that out of the water by a mile. I think more study is needed on what, if anything, is generally protective against progression to surgical range. I am skeptical there is enough data on this. This will have a huge impact on decisions about conservative treatments for kids.

Anyway, again good luck.
Hi Sharon...

Just a friendly reminder that we can't draw any inference from one case. We frequently see patients at UCSF with large curves that don't progress at all over the years. I don't know whether it's genetics or environment, or something else, but some people progress no matter what. That should never give the medical community license to treat small curves, as that's just not a sustainable model.

--Linda

Pooka1
03-30-2014, 08:24 PM
Hi Sharon...

Just a friendly reminder that we can't draw any inference from one case.

That what you warn me about on all these "one-off" cases. ;-)

These testimonials are by no means an accurate cross-section. But them seem to be a touch too frequent to think anyone should hang their hat on the present paradigm about <30* being protective against needing surgery for progression.



We frequently see patients at UCSF with large curves that don't progress at all over the years. I don't know whether it's genetics or environment, or something else, but some people progress no matter what. That should never give the medical community license to treat small curves, as that's just not a sustainable model.

--Linda

Yes we have several testimonials about that also. My general comment is maybe paradigms are not appropriate in scoliosis because it is just too variable.

Just curious which is more prevalent in what you have seen... large curves that don't progress or small curves that collapse?

susancook
03-30-2014, 08:43 PM
Well, twisted sister, you are almost there....at the turning point for the remainder of your life! Remember, your surgeon no doubt has spent hours preparing for YOUR surgery as he figured out exactly how he will repair your twisted back and damaged vertebrae and what hardware he needs to use.

You have done your due diligence in interviewing surgeons and reading tons on Internet scoliosis related information. The search part is over, now just "git-er-done"!

All you need is to show up bucknaked, having brushed your teeth and gargled, with a smile on your face with your insurance card in your hand. Sounds pretty easy, huh! Just shut your eyes, take a deep breath and have trust and confidence in your highly skilled surgeon.

On Tuesday afternoon, you join a whole new club, that is those of us on the other side. We are here to support you, sympathize with you, and help you figure out pain management, constipation relief, and the adjustments that you will need to make being fused. Also, we will celebrate your new look and a progressively improving life as you gradually need less pain meds.

Remember, all you really need is to show up in your birthday suit with your insurance card.

Sending best wishes to you, you will be awesome!
Hugs, Susan

danicaf
03-30-2014, 08:47 PM
Hi Jo,

My name is Diane and I'm a new member to the forum. I am also 55 years old and possibly facing surgery to correct my curves (and not the good ones on the outside!):)

I wish you all the best as you begin your journey to better health, with less pain. You will be in my thoughts tomorrow and the upcoming days.

Diane

LindaRacine
03-30-2014, 10:22 PM
That what you warn me about on all these "one-off" cases. ;-)

These testimonials are by no means an accurate cross-section. But them seem to be a touch too frequent to think anyone should hang their hat on the present paradigm about <30* being protective against needing surgery for progression.




Yes we have several testimonials about that also. My general comment is maybe paradigms are not appropriate in scoliosis because it is just too variable.

Just curious which is more prevalent in what you have seen... large curves that don't progress or small curves that collapse?

We see a large number of degenerative scoliosis cases. In the vast majority of those cases, people were unaware of having a curve when they were younger. I honestly don't remember seeing anyone who had progression like Jo, with the exception of the camptocormia cases we see. Most of the people we see who had small to moderate curves when they were younger either don't progress or progress the 1 to 1-1/2 degrees per year.

--Linda

ScoJo
03-30-2014, 10:47 PM
Off to bed and a good sleep to prepare for tomorrow! Thanks to all of you! Ism so grateful for this forum and all of you!

kennedy
03-31-2014, 12:19 AM
Good luck tomorrow jo

rohrer01
03-31-2014, 01:42 AM
Well it's almost tomorrow where you're at. Just chiming in to wish you well and a steady recovery.

I had a curve that wasn't usually measured. I asked one time when I was at the doctor at 16 years of age how big the lower curve was. They said it was in the teens. Now, it is 37-380 less than 20 years later. Curves in the teens aren't supposed to progress and become structural. Grrrr. Nothing is normal about me. Maybe when I'm "Jo's" age, I'll be all crunched up. Who knows? I fully expect that the lower curve is going to bypass the upper one. Then they'll say I have a regular right thoracic curve. Isn't that a joke?

mabeckoff
03-31-2014, 09:11 PM
Good luck.

Melissa

leahdragonfly
04-01-2014, 07:49 AM
We see a large number of degenerative scoliosis cases. In the vast majority of those cases, people were unaware of having a curve when they were younger. I honestly don't remember seeing anyone who had progression like Jo, with the exception of the camptocormia cases we see. Most of the people we see who had small to moderate curves when they were younger either don't progress or progress the 1 to 1-1/2 degrees per year.--Linda

Linda,

not meaning to be argumentative here, but I had documented curves in the mid-20's after I was done with bracing as a young teenager (braced down from 33 thoracic and 34 degrees lumbar). My curves at age 40 were lumbar 30 and thoracic 21. At age 42 my lumbar curve had collapsed to a whopping 47 degrees. Dr Hart was very surprised. And I do not have camptocormia. I know I am just one person also, but I did have a rapid progression after many years of stability at or below 30 degrees.

Enough about me--I am sending healing thoughts to Jo as she begins her recovery journey.

LindaRacine
04-01-2014, 12:58 PM
Linda,

not meaning to be argumentative here, but I had documented curves in the mid-20's after I was done with bracing as a young teenager (braced down from 33 thoracic and 34 degrees lumbar). My curves at age 40 were lumbar 30 and thoracic 21. At age 42 my lumbar curve had collapsed to a whopping 47 degrees. Dr Hart was very surprised. And I do not have camptocormia. I know I am just one person also, but I did have a rapid progression after many years of stability at or below 30 degrees.

Enough about me--I am sending healing thoughts to Jo as she begins her recovery journey.

Hi Gayle...

I, in no way, meant that it couldn't happen. As I've said many times before, there appears to be at least some people in which progression will happen, regardless of any treatment (with the possible exception of surgery), and in some people, progression will not happen. That's why I tend to cut Sharon slack about her stand on bracing.

By the way, let's not hijack Jo's thread. If anyone wants to discuss more on this issue, please post a new thread.

--Linda

rohrer01
04-01-2014, 01:10 PM
I don't think this is really hijacking Scojo's thread. Jo mentioned the small curves progressing to large ones. That's how this all got started. I hope the surgery went well.

golfnut
04-01-2014, 04:55 PM
Jo,
I just saw your post, so by now you are Jo and not ScoJo. Best of luck a for a smooth recovery. From everything we've read from Melissa, you have an excellent and very caring surgeon. We will all be looking forward to a report from your friend.

ScoJo
04-02-2014, 04:07 PM
Hi Everyone,

This is SueAnn posting for Jo. I am sitting with her now as I write this. Forgive me for my lack of technical terminology on this subject. The bottom line is that the her surgeon proclaimed this morning that her ex ray was"superb"!

Her curve is now approximately 10-12 degrees. The physical therapist had her standing and but for a drop in her blood pressure, would of had her walking. Tomorrow is another day!

Her pain is being managed fairly well for which those of us that love her are extremely grateful, as is she.

I will continue to keep you updated on her progress.

SueAnn

kennedy
04-02-2014, 04:11 PM
Thanks for the update

mabeckoff
04-02-2014, 08:56 PM
Glad that Dr Bederman helped you

Melissa

JenniferG
04-02-2014, 10:09 PM
Thank you SueAnn, for giving us an update on Jo!

That's a great correction. I hope all goes smoothly through her recovery.

susancook
04-03-2014, 01:54 AM
Jo: I promise, it will get better! It hurts now with every time that you slightly move, and in the future, your body will adjust and the hurt gradually decreases. Drugs are good! Nancy Reagan was wrong, "Say YES :confused:to drugs!"

I thought about you at least a dozen times on Monday and Tuesday. I sent you healing thoughts!

Sounds like you are in excellent hands with SueAnn.

Take care, think positive thoughts! We all survived the first days, week, weeks, month, etc. you have an awesome attitude and you will survive and get better.

A gently hug,
Susan and her abdomenal truss

danicaf
04-03-2014, 11:30 AM
Wow!! What a great correction! I imagine you're feeling a little "rough" at the moment but hang in there. Sending you healing thoughts.

Diane

jrnyc
04-03-2014, 12:25 PM
hope you feel better every day, Jo

will say it again...
protective, pro-shmective....no such thing...
i had a "small" curve when younger....
protection my foot....my curve got bigger when i
got older...period....got protection from nothin'
i think that is a bunch of hoo-ey

jess...and Sparky

susancook
04-03-2014, 12:52 PM
Another day, Ms. Jo to do your physical therapy and get out of that bed and walk!
Find the sunshine and absorb some of it!
It's a new day and now one more day closer to being healed!
You can do it, you have the fortitude, take a deep breath....in through your nose, out through your mouth.
Good morning to you!
(Can you tell that I used to be in the military?)
Love and hugs to you for a complete recovery,
Susan

ScoJo
04-03-2014, 02:33 PM
Hi All,

SueAnn for Jo. Today is a much rougher day than yesterday as we pretty much anticipated. Medical staff is still trying to get her blood pressure stabilized so that they can get her up and walking. Her positive attitude is amazing and she keeps telling herself "I did it!"

Please keep up your positive thoughts as it boosts her spirits when I read them to her.

I will continue to post her progress.

SueAnn

mabeckoff
04-03-2014, 04:18 PM
Hope it gets better

Melissa

djkinkead
04-03-2014, 06:49 PM
Saying prayers for you as I remember the first few days of surgery.

Drugs are definitely good!

Everyday things will get a little bit better! Keep the chin up!

springchicken
04-04-2014, 07:32 AM
Very best of luck in your recovery, Jo.

I find it helps me to look at my progress every week, versus every day as the days can go up and down.

It sounds like you are in the hands of a wonderful, caring surgeon.

JuliaAnn
04-04-2014, 12:38 PM
I'm keeping you in prayer, Jo, and checking these posts to see how you are doing. I had my surgery (T1 to S1 with pelvic fixation) when I was 53. It sure wasn't easy. I am now 18 months from surgery. The first weeks are the hardest you'll ever have and it will seem like there is no progress. But the healing is taking place deep inside and your new spine is working hard for you, building cells to make you well again. Hang in there. The pain you're going through will lessen and it will be totally worth it!

rohrer01
04-04-2014, 01:06 PM
Jo, it sounds like you are doing well under the circumstances. I haven't had surgery for my scoliosis so I don't know what's normal or what to expect. But from reading other people's stories, you sound like you are doing quite well. I have trouble with my blood pressure dropping too low after surgery, too. I'm sure it will settle down. They don't want you do get dizzy and fall. So take the help of people around you when they get you walking. I hope the pain gets better soon. It seems like it always gets a little worse before it gets better. So you at least know it's not going to go on like this forever. Take care and good wishes to you. You are "Jo" now!

susancook
04-04-2014, 03:53 PM
Give Jo my love and tell her to keep trying, she can do it! Many of us had blood pressure problems after surgery, since loss of blood and replacement is a tricky business.

Jo....you are awesome! Every day is a new opportunity toward getting into shape and the NEW JO!

Keeping you in my thoughts and prayers.

Thanks Sue Ann for keeping us informed.

Susan and her abdominal truss

mabeckoff
04-04-2014, 06:53 PM
Hope life gets better

Where are you going for rehab?

ScoJo
04-06-2014, 05:06 PM
Hi all,

SueAnn again with another update on Jo. After quite a bit of trial and error the medical staff seems to have finally settled on the right path for management of Jo's pain. Her meds now allow for mitigation of some of her pain while leaving her the ability to get up and out of bed. She has been on a few walks and is now sitting in a chair to eat her crummy tasting hospital food!

She a scoliosis follow up X-ray late Friday afternoon. Results support the surgeons initial report regarding her correction to 10-12 degrees. At this time it looks as if no follow up surgery is necessary and she is greatly relieved to hear that.

She will be moving to UCI rehab on Monday or Tuesday.

I will keep you updated as she moves into he next phase of her recovery.

SueAnn

susancook
04-07-2014, 02:14 AM
May the crummy food be an incentive to heal and get out of there!

Give her my love and a hug! Susan

mabeckoff
04-07-2014, 07:12 PM
Glad that she is doing better . I have been a patient at UCI at least 10-12 times and have always found the food to be decent food.I am sorry that she does not feel that the food is good

babyboomer16
04-07-2014, 10:36 PM
Hi Jo,
I didn't get on here and see this big surgery of yours till now. Sounds like all is going as well as it should so far. You were to move to rehab as I read earlier. By now you should be feeling better, I hope.. Some people recover faster than others. So don't be hard on yourself one way or the other. We have all had huge surgeries, but just have to be careful not to be disappointed if we don't all heal alike!. Difference in our structures ! But the goal is always the same! To have a better quality of life. Good Luck and I pray you get that for sure!! Warmly, Linda

susancook
04-10-2014, 05:03 PM
Hey Jo, how are you? If everything doesn't hurt, you must be smoking something! I was wondering about all my back pain and my surgeon said, "In 10 hours I pulled all your back muscles going 2 different ways into a new direction. They are protesting." It takes months for what I call "everything to settle out".

Get as Zen as you can....relax, take your drugs, ask for more if you need, get up and walk. Try stairs, go up. Just do it! Progress happens in spurts and then you go backwards....but it is ever forward. You can do it, just have faith in yourself. Spring is here and you have summer ahead of yourself! When you go home from Rehab, get out and smell the flowers everyday....a couple of times every day. Get out for breakfast and only stay as long as you can. Take a nap. Remember to bring a pillow with you for your back, so it is soft to lean back.

Looking forward to hearing about your progress. Call me anytime!

Hugs, Susan

mabeckoff
04-11-2014, 10:36 AM
Did you move to rehab? I hope that things are going ok for you. I will be at UCI on Wednesday. Where are you going to be then?

I would love to stop in for a short visit

Melissa

Doodles
04-12-2014, 08:43 PM
Jo--
So glad to hear your surgery was successful--that's probably not the word it feels like right now though. Everyone has had such good advice on here and it all is very true! Hang in there and continue to heal. Positive thoughts heading your way. Janet