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View Full Version : New here, Mandy is 11 and has surgery Jan 14,2010



ArabianFancy
12-07-2009, 10:04 AM
I am Gina, Mandy's Mom. She is 11 and was just diagnosed on 11/17, due to a PE teacher being VERY aware, with a 51 degree curvature in the thoracic and a 63 degree curvature in the lumbar. I am a 'retired' X-Ray Tech and did not catch it. Her's is very hard to see on physical exam. I am still beating myself up for not seeing it:mad:
She has surgery at the University of Mississippi Medical Center, Blair E Batson Children's hospital on Jan. 14, 2010. Dr. John Purvis is her Doctor.
ANY suggestions, words of advice you can give up , GREATLY appreciated!!!
Her x-ray is here .
I drew the line so that those who don't read x-rays could see the curvature better.
https://www.caringbridge.org/tres/images/photos/1/5/6/7/156711/l.nJFjDIAbfypdtQsy.jpg
She also has a caringbridge site set up , in her own words,so that our many friends worldwide can keep up with her.She loves to read posts to her guest book.
https://www.caringbridge.org/visit/mandydupree
PLEASE give me any words of advice you have to help her deal with this and prepare. She is doing great so far, just very stressed about having to donate her own blood.
Thank you,
Gina

txmarinemom
12-07-2009, 10:47 AM
Hi, Gina and Mandy ... you've come to the right place!

Firstly, Mom, don't beat yourself up for not seeing her curve ... it happens, even to Moms who have scoliosis themselves. Curves can hide - and they can hide even easier, I'd think, in a pre-teen girl who probably doesn't show her body much.

My own curve was discovered at age 10 when a friend questioned the hump on my back with forward bending. My Mom beat herself up about not feeling it when she hugged me, etc., etc. - although when I was upright, there was no hump. I was braced, to no avail whatsoever, and at age 39 (when I finally had surgery to combat increasing pain), my 53 thoracic curve was STILL virtually invisible. Even in a bikini.

It's doubtful earlier intervention would have been beneficial for Mandy given her stats at age 11. This isn't your fault - and certainly not from negligence of neglect. Even you say her curvature isn't apparent on physical exam ... so, short of x-raying her (and diplaying psychic talents to boot ;-) you did all you could. Go a little easier on yourself, hon, yes? :)

How much blood are they asking her to bank? The #1 suggestion on that is make sure she's well hydrated at donation ... it's easily the thing that makes the most difference.

What levels does her surgeon plan to fuse?

I know both you and Mandy will find tons of support and tips for pre-op preparation (practical things and emotional matters), advice on what to expect before and after, and ways to make life easier in recovery. You're both going to do fine - even though right now you may feel you're wandering a strange land without a clue. It *will* come together for you.

Hang in there, Gina. I look forward to hearing more about Mandy!

Best regards,
Pam

ArabianFancy
12-07-2009, 06:34 PM
Hi, Gina and Mandy ... you've come to the right place!

Firstly, Mom, don't beat yourself up for not seeing her curve ... it happens, even to Moms who have scoliosis themselves. Curves can hide - and they can hide even easier, I'd think, in a pre-teen girl who probably doesn't show her body much.

My own curve was discovered at age 10 when a friend questioned the hump on my back with forward bending. My Mom beat herself up about not feeling it when she hugged me, etc., etc. - although when I was upright, there was no hump. I was braced, to no avail whatsoever, and at age 39 (when I finally had surgery to combat increasing pain), my 53 thoracic curve was STILL virtually invisible. Even in a bikini.

It's doubtful earlier intervention would have been beneficial for Mandy given her stats at age 11. This isn't your fault - and certainly not from negligence of neglect. Even you say her curvature isn't apparent on physical exam ... so, short of x-raying her (and diplaying psychic talents to boot ;-) you did all you could. Go a little easier on yourself, hon, yes? :)

How much blood are they asking her to bank? The #1 suggestion on that is make sure she's well hydrated at donation ... it's easily the thing that makes the most difference.

What levels does her surgeon plan to fuse?

I know both you and Mandy will find tons of support and tips for pre-op preparation (practical things and emotional matters), advice on what to expect before and after, and ways to make life easier in recovery. You're both going to do fine - even though right now you may feel you're wandering a strange land without a clue. It *will* come together for you.

Hang in there, Gina. I look forward to hearing more about Mandy!

Best regards,
Pam

Thank you so much Pam for the kind words and for posting on Mandy's Caringbridge site!! It means a lot to her.
At this point he is hoping to fuse at L-3 or higher. I have a great friend who's husband is an Orthopaedic Spine Specialist ( Adult)in another state and he has grilled me to no end about what they are going to do!:D He wants to make sure they are going to do everything just the way HE would . It's quite a weight off my shoulders to have him consulting.
They are wanting her to donate 2 pints before hand. I am waiting on the paperwork to come in now to get that started as we are 1 1/2 hours from the Doctors office and blood drawing locations .She will also take Iron supplements. Mandy is a very healthy girl in good weight so hopefully it won't be too hard on her. Thanks for the hydration tip!!
I will keep you all posted as things progress and PLEASE keep the advice coming. This has FLOORED me to put it mildly!

Gina
"With God All Things Are Possible!"

jrnyc
12-07-2009, 08:49 PM
Hi Gina
i think all your daughter really needs now is your calm & loving support...please do not beat yourself up...try to concentrate on the present...& what you will need to do to prepare for the surgery & the homecoming...

is dr purvis a scoliosis specialist? i read your daughter's story with interest...it is good that she is having this done so young...young people heal faster & go thru this easier than those who are older...

i have not had surgery...yet...i am old...old-er :rolleyes:
by now i have degenerative disc disease, which necessitates a fusion to the pelvis! it is good that your daughter does not need that!! i have a 40 degree thoracic curve & a 61 degree lumbar curve...

best of luck to you...i am sure mandy will be fine & that a few months down the road she will be back to her old self...but a new & improved version!

jess

txmarinemom
12-07-2009, 08:59 PM
Oh! Jnryc's post reminded me of a very important thing I wanted to ask in my previous post to you, Arabian ...

What's your daughter's current Risser, and is she pre or post menarche? If post, by how long?

With as young as she is, what type of fusion/instrumentation is planned? Growth rods, some type of expandable (like VEPTR) or full on fusion (with grafting) for skeletally mature spines?,

Regards,
Pam

ArabianFancy
12-07-2009, 09:42 PM
Mandy's Dr.'s Bio.
" John M. Purvis, M.D., Associate Professor
Pediatric Orthopaedics
Dr. Purvis attended K-12 schools within walking distance of the UMMC campus, received his B.A. degree from Rhodes College in Memphis, and then returned to complete medical school at UMMC. His orthopaedic residency was completed at the Georgia Baptist Medical Center in Atlanta with further training as a Harrington fellow in pediatric orthopaedics and spine deformities at Texas Scottish Rite Hospital in Dallas. He practiced for 14 years in Jackson with Central Orthopaedic Clinic then established Pediatric Orthopaedic Specialists of Mississippi and limited his practice to pediatric orthopaedics for the next 15 years.

Dr. Purvis has co-authored many peer reviewed publications and presented at numerous scientific meetings. He has been active in leadership roles with regional and national orthopaedic societies, particularly in the areas of public and media relations with the American Academy of Orthopaedic Surgeons, and in pediatric communication skills with the Pediatric Orthopaedic Society of North America. His practice includes general pediatric orthopaedics as well as pediatric spinal deformities. Dr. Purvis will see pediatric patients both at Batson Children's hospital and our outpatient clinics."

I have not heard the terms
"menarche and Risser" mentioned. I am thinking it's something to do with bone age/ maturity? Her bone age is 12 ( she will be 12 on Feb 9) and she is quite "developed" for her age.(MUCH more so than I was at that age, she does NOT look 11 at all) Dr Purvis said they would do rods and spinal fusion and grafting and her spine would not grow any more .
Does this make sense.
THIS is why I am here. To learn all I can!! Thanks!!
Gina
You can call me Gina
Arabian Fancy is my business, I always use that as my log in to keep the confusion down!

Sherie
12-07-2009, 10:12 PM
Hi Gina

I wrote in Mandy's guestbook this morning to give her some words of encouragement. I'll try to get my dd to write in it as well. I wanted to tell you that feeling guilty seems to be par for the course, I too felt guilty over my daughter's progression and my feelings of helplessness, but I decided it wasn't going to help us get through this and you just have to get over it and move on.

My daughter had surgery 2 years ago, almost identical curves/cobbs to your daughter's except my dd's lumbar curve appears to be lower, she was fused from T4-L4 and she was 15 at the time. She's doing good now. She can't bend from the waist, but she's compensated well.

Sheena had trouble donating blood and only managed a partial unit, which she received after surgery. She could have used at least another one, but at our request, she did not receive off the shelf blood and eventually recovered from the anemia. It was our personal choice and we would definitely have used available blood if it became critical. I'm not advocating one way or the other, just telling you what we did. It's not uncommon for kids to have trouble donating, hopefully your dd will do just fine and if she doesn't, it will still be ok.

There's loads of information on here of what to expect after surgery. It's really good to be prepared for the hospital experience and going home. I would be happy to answer any questions you have. You can email me too.

Take care

ddb
12-08-2009, 03:50 PM
Hi Gina - This is a great place to come... the support and knowledge is incredible! I'm kinda new here too. My daughter has been watched for about 2 years now and is awaiting surgery begining of Feb. I'm a wreck and when it get overwhelming I come here and read. The comfort almost immediatly takes over. There are so many who have been there done it and stay to tell us it will be OK.

My daughter will have T-11 -L-3 fused. Her Dr didn't want her to donate blood - funny, but that seemed to be the thing she was most afraid of. He did say we could donate for her so this is something we will talk about at our next meeting.

PS I like your sceen name - I have two Arabian horses in my yard.

Dee

ArabianFancy
12-08-2009, 05:28 PM
Thank you all for the words of advice and encouragement!! I am sure I will have many more questions in the days to come. I am an old X-Ray Tech so do know a bit about what's going on, but most of what I know is 20 years old ;)
Dee, how old is your daughter? Mandy was only diagnosed in Nov. Can't imagine dealing with it as long as you have!!
I have 3 Arabians and design custom tack for the most beautiful Arabians in the world . My login is my business name, just add a .com Mandy hopes to be recovered enough to travel with me to the World Cup Show in Vegas in April.
Gina

momof2girls
12-09-2009, 10:55 AM
Hi Gina,

My daughter had surgery her surgery at Blair E. Batson Hospital on November 4th but her surgeon was Dr. Lawrence Haber. She was fused from T5 to L2. Her curves were 33 and 53. At her 3 week check up they were 20 and 11. The doctors and the hopsital staff are great.

Charlene

ArabianFancy
12-09-2009, 12:29 PM
Thank you Charlene!! Any info you can give me greatly appreciated. Were you in the ICU waiting area while your daughter had surgery and was in ICU or put in a room ? How old is your daughter? I have so many questions I don't even know where to start!
Thanks,
Gina

momof2girls
12-09-2009, 01:38 PM
Gina,

You're welcome and glad I can help. I understand about all the questions, everyone here is so great at answering your questions. They have helped me so much.

Lauren is 14 years old. The hopsital staff are great as I have already said.

Surgery is done on the 7th floor. Parents and family wait in the surgery waiting room on the 7th floor also. They kept us informed by telephone on how her surgery was going about every hour. When she is finished with her surgery, she will be sent to the PICU which is on the first floor. You usually stay there overnight. They have a waiting room with those sleeper chairs that you can reserve. We were allowed to stay with her in PICU for all long as we wanted. They do make you leave during the shift change hours. The usually put the orthopaedic patients on the 5th floor.

Charlene

ddb
12-09-2009, 07:19 PM
Gina - my daughter is 16. I have a 19 year old who also has scoliosis, but still watching to see if surgery will be needed. It has been a long time - there are many here who have been in the watch and wait. Time has helped her get used to the idea, but for me it it just a growing pit in my stomach.

I hope Mandy is ready by April. Read through some older posts - kids seems to get past this and move on. Katie's Dr said she should be back in school in a month.

Does Mandy ride? Katie asked me if she will ever be able to ride - she never really stayed with it, but now seems to just want to be reassured that is still an option if she chooses to in the future.

I will check out your website - Nevada is where my girl came from - she's a WN horse.

ArabianFancy
12-09-2009, 08:26 PM
Gina - my daughter is 16. I have a 19 year old who also has scoliosis, but still watching to see if surgery will be needed. It has been a long time - there are many here who have been in the watch and wait. Time has helped her get used to the idea, but for me it it just a growing pit in my stomach.

I hope Mandy is ready by April. Read through some older posts - kids seems to get past this and move on. Katie's Dr said she should be back in school in a month.

Does Mandy ride? Katie asked me if she will ever be able to ride - she never really stayed with it, but now seems to just want to be reassured that is still an option if she chooses to in the future.

I will check out your website - Nevada is where my girl came from - she's a WN horse.

Mandy's surgery is 5 weeks from tomorrow!! I wish is WAS tomorrow!
We only got her diagnosis in Nov. so I guess we are luckier than most.

She does like horses but has never had that burning desire to ride that her parents do. I don't think she has really felt comfortable on a horse these last few years and wonder if her back is the reason. Her Dr. says she can ride afterward, probably a year out though ,honestly. I am getting her Arabian mare back into shape for her and hope that when she is ready, Spirit will have the right mindset for them to click this time. ( if not we will shop for the RIGHT horse)
I actually did a set of tack for Mr. Newton, one of the highlights of my business!!!!
Thanks again. I am really enjoying this site!
Gina

spinalfusion09
12-09-2009, 09:04 PM
Hi Gina! I just wanted to wish Mandy the best of luck with her procedure in January. I'm 18 and just had fusion T4-L3 on September 30th of this year so I'm almost 3 months post opp :) I know its not easy and I can imagine it is hard on you as well. My mom was extremely nervous and concerned about me going through all of this. She's going to be great though!!!!! I had a 60 degree thoracic curve and a lower curve in my lumbar region. About donating blood I got a list of foods rich in iron and suprisingly prune juice and cream of wheat are very high in iron content. So I incorporated both of those into my diet before giving blood. If my blood count wasn't high enough they wouldn't take it. And this was wierd both times I went to give blood the first time they pricked my finger my blood count was like 1 point lower than the minimum need to take blood. They poked a different finger the second time and I was fine. I was kind of surprised so there you go. If you have any questions don't hesitate to ask :}
Maliha

Vali
12-10-2009, 07:28 AM
Hi Gina,
thought i would just pass on this little tidbit. When i was donating my blood for surgery, the nurse instructed me to take my iron tablets at night with a glass of orange juice. She said it absorbed better at night (just before bed) because there was nothing to interrupt the absorption. If you have any more questions, please don't hesitate to ask. The mums on here are great and really helpful.

ArabianFancy
12-15-2009, 07:33 AM
Thanks Vali!
Mandy had her first blood drawn yesterday. NOT a fun experience for her but she got the pint donated. She looked pretty bad afterwards. It stressed her a LOT and I know it's going to pull her down. She is doing GREAT with the iron tablets though. She is looking forward to not thinking about anything but Christmas now!
Thanks again to all of you!!:)
Gina