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DairriensMom
09-25-2009, 10:34 AM
I am new to this Forum...My name is Misty,My son is Dairrien,
He is 13 years old..He has Sheuermanns Kyphosis,Kyphosis Scholiosis,Klippel Feil anomaly,congenital fused cervical vertebrae..

He will be going in for surgery in the next couple of months..
He is a patient of Shriners,we are in Northern California.

We go in October 14th,for his Pre-Op Testing..

The Surgery they are doing is for the Sheuermann's Kyphosis...

Has anyone had this surgery before?

What can we expect? What does the surgery consist of?

Any information would be fantastic...


Thanks so much!!

wigglesgiggles
09-25-2009, 10:53 AM
Hi Misty,

My 16 year old son had surgery on April 23rd for Scheuermanns. The hump in his back was between 70-75 degrees. The surgery took about 7 and 1/2 hours. He ended up with 25 screws, 2 rods and he grew 2 1/2 inches. His back is prefectly straight now. The first couple of weeks were hard for him. He was off all pain killers after about 2 months. He wore a back brace for almost 4 months. He is back in school fulltime.The only restrictions he has right now is no gym or sports and he can not lift anything over 20 pounds. When he comes out of surgery be prepared because he may be swollen but I guess it doesn't happen to everyone. I hope this gives you alittle information, if you have any other questions, please let me know.

Christine

laurieg6
09-25-2009, 01:14 PM
Hi Misty,

My son doesn't have kyphosis, "just" scoliosis caused by a hemivertebra in his thoracic spine. I think most if not all of the spinal surgeries done these days consist of fusion with two metal rods and many screws.

The kids usually recover pretty fast and are sometimes able to stop taking their meds within a few weeks. Many can return to school a few weeks after the surgery too, at least part-time.

The few weeks prior to the surgery are the most stressful, esp. for the parents, as far as I can tell. It's a huge relief when the surgery is over. Hang in there and keep writing in for support when you need it. We all have been there and know what you might be feeling.

All the best,

DairriensMom
09-25-2009, 02:21 PM
Thanks everyone for all your information..We are all Getting nervous...and I had no idea where to turn to get answers or suppoprt,I know No one who has been through this,and I want to stay strong for my son..
I am a single Parent and this has been rough..

I am trying to figure out how we are going to do all this since we are 2 1/2 hours from Shriners..

Can anyone tell me how long their child was in the Hospital? and did they do Rehab or anything there...

From what I was told her would be in the Hospital at leaset a week and then be moved to the Rehab unit for another week or so for Rehab....

Can anyone tell me their experiences with Hospital Stays and times?

Sherie
09-25-2009, 04:16 PM
Hi Misty

My dd was in the hospital for 8 days, a week give or take a few days is typical. We flew home the day after she was discharged. It's not common for kids to go into rehab after scoliosis surgery but could be due to your son having other conditions or because of the kyphosis, maybe someone else can comment.

My dd is almost 2 years out and she's doing very well, I don't have any regrets. The waiting prior to surgery was very difficult but the time has gone by quickly.

Wishing you and your son the best.

DairriensMom
09-25-2009, 04:51 PM
Thanks so much for responding Sherie..I am wondering if the Lady I spoke too didnt know what she was talking about..LOL..we see the Surgeon in 2 weeks so we will see exactly what he says...
I still would like to hear other peoples experiences so if you have any experiences to share,please do so..

Thank you :)

Hannamom
09-25-2009, 05:25 PM
My daughter had surgery on July 13th, 2009. She is just 10 weeks post op. The surgeon feels it was Schuermann's kyphosis. She is 13 and her curve was 81 degrees. We spent 7 days in the hospital. Her surgery was 9 hours. The recovery is definitely hard, but you get through it one day at a time. She grew 3 inches in height.

She started in home physical therapy at 2 1/2 weeks. She is now going to outpatient physical therapy. She has a problem with a nerve in her leg and her leg is very week. She is walking with a cane. The doctor said it will heal with time. She looks like a new person. So tall and straight!

Best of luck to you. These boards are a wonderful source of information. I don't post often but read the new posts every day. Many of the things my daughter went through are written about here on the boards.

Hannamom

DairriensMom
09-25-2009, 05:42 PM
Thank you so much Hannamom...Its funny cause my son can stand up straight for about 3-4 seconds and is so tall when he does this :) he says man I am gonna be a tall guy now,I wont have to look at the ground when I walk I can actually look at people instead of my feet :) and Girls will not think I am talking to their chest :( I can actually look at them..LoL..Out of the mouth of Teenage boys..LoL..He is excited that he will be straight..He is having difficulty catching his breath sometimes because of all the pressure ,from the spine compressing everything forward ...basically everything is getting smooshed in there...

I am so GLad that someone referred me to this Forum..I would still be lost.

I keep reading past posts,and everyones post surgery posts,it is awesome to see how everyone is recovering..

Thanks for all the info...I will continue to check back for more posts,so keep them coming if you have them,LoL..I am enjoying hearing about everyones possitive experiences...

Hannamom
09-25-2009, 09:31 PM
DairriensMom

My daughter looks like a different person after her surgery. When she got home from the hospital she would do a double take in the mirror. She just didn't look like herself because she was so tall and straight. Tomorrow I am going to work on posting her before and after pictures. (I am a little computer challenged that way!). Hopefully, I'll be able to do that. The pictures are just amazing. Make sure you take pre op pictures of your son.

Hannamom

Snoopy
09-26-2009, 08:22 AM
Dairriensmom,

Welcome!

My daughter will be 5 years post-op in December and if you didn't know she had a spinal fusion, you'd simply just complement her on her perfect posture!Jamie is fused from T3-L2. Jamie too has both Scoliosis and Kyphosis. Jamie's recovery was very quick compared to most. She was in the hospital for 6 days (told she could go home on day 5, but we requested to stay another day to make sure her pain was completely controlled); she was given permission to return to school 1/2 days at 2 1/2 weeks, but returned at 3 1/2 weeks because she was on Christmas break; she returned to school full-time at about 6 weeks; and she was off all pain meds within about two weeks after surgery.

Some of my best advice for now would be to 1) write a list of questions for the doctor and be sure to put the most important ones on the top as you might not have enough time to ask them all; 2) take someone with you to the doctor appt. if possible so you are sure to hear all the information; 3) do you have a male family member or close friend who could help take care of your son after surgery? He will need help in the shower for a little while after surgery and he might not want mom being the one to help; 4) I would personally want to know how long the fusion will be; and 5) ask your son if he has any questions for the doctor and make sure those questions get answered.

Hang in there. Please remember to take care of yourself. The time before surgery can be very stressful and you need to be in the best health possible because Dairrien will need your help and support. You might also want to ask your doctor about flu shots for both of you.

Mary Lou

DairriensMom
09-26-2009, 10:32 AM
Snoopy that is some wonderful advice..thank you...I will make sure to do all oif the above..I get a flu shot every year because I have type 1 Diabetes (since I was a kid) and I have Gastroparesis(my stomach doesnt work anymore) So every year I get them...Should we get one before he has surgery? as that the Norm? He is Home schooled right nw because the pain of walking around school is just too much...I am most definatley taking Pre and Post Operative Pictures so Dairrien can see the difference..I am thinking after a while he may forget how slumped he was...lol..He is looking forward to not leaning like a willow tree as he puts it..
Has any of your kids had their surgery done through Shriners? I will have to stay at the Ronald Mcdonald House because I will have my youngest son with me...Which is going to be hard to leave Dairrien for a while.. But its only 3 blocks away,and I will be close to him....Thanks for all the information it is so much help!!!

WNCmom
09-26-2009, 01:13 PM
Misty--

My then 13 yo son had a very long fusion (T2-L4) on November 13 2008 at Shriners in Philadelphia. The care he got there was excellent, as was the correction to his very large curve. He actually had a lack of kyphosis (which some think can be a cause of scoliosis), and during the surgery, near-normal kyphosis was built back into his thoracic spine, along with some lumbar lordosis, which he also did not have before.

Sidney's surgery lasted 8 hours. He was in the hospital 6 days. He was off all pain meds at 2 weeks and back in school in four weeks (just before Christmas break started, so he actually had a pretty long break). He did a lot of walking for 6 months post-op, and this last July joined us on a family backpacking trip with some pretty strenuous days--he did fine. He gained ~2.5 inches (at least) and is now taller than his father. My husband stayed in a nearby Ronald McDonald house during and we all stayed there after the surgery, although I was in the hospital with Sidney every night. We weren't able to walk to the hospital, but the RMDH was a godsend--it felt like a real haven. Because we live 14 hours from Philly, we stayed there a few days after Sidney was discharged to make sure everything was okay before heading home.

Surgery day will be a long one. When you see Dairrien immediately afterward, please do not be alarmed if there is swelling, which can include facial, abdominal, ankle, and in boys, genital swelling. It is all common. My son swelled a lot--and it does subside pretty quickly. I remember asking the surgeon whether S. would have a breathing tube or respirator when he got out of surgery--I didn't want to be alarmed about something that was typical--I really wanted to know what to expect. He did have a breathing tube, but no respirator, as the surgeon had said. Dairrien will be hooked up to a lot of things but they will be removed pretty soon after surgery.

It also helped me to ask about the pain management plan beforehand, so I had some idea what to expect. Because the oral meds knocked S. for a loop (they made him so groggy they were keeping him from walking), I was aware and understood when they reduced them drastically. It did the trick.

For children, PT or rehab is not typically prescribed, but walking post-op is a requirement. So be prepared to encourage/nag your son to get up and walk around several times a day after he gets home. In the early days, he may not feel much like it, but it will speed the healing process and help ease any stiffness.

Can't comment on the flu shot question--that would be one for your surgeon or his nurse. Usually the anesthesiology nurses are the ones most concerned with what's going into your child's body in the month before surgery.

At Philly Shriners they have rooms on the top floor of the hospital where parents of teenagers can stay. I never slept nights there, but I took naps showers and kept my things there. Your local Shriners may have that, also.

One thing we acquired before surgery that was helpful afterward is a recliner. Sidney spent a lot of time in it once we got home.

Whew--this has turned into a long post--I just kept thinking of things...

Your nervous worries are completely normal. I think you and Dairrien will both do fine! Just don't be afraid to ask questions, either on this board or of your surgeon. And keep us posted!

Mary Ellen

Pooka1
09-26-2009, 01:31 PM
Can anyone tell me how long their child was in the Hospital? and did they do Rehab or anything there...

From what I was told her would be in the Hospital at least a week and then be moved to the Rehab unit for another week or so for Rehab....

Can anyone tell me their experiences with Hospital Stays and times?

My kid's experience was similar to those already posted except she needed pain meds a bit longer.

I can't recall another testimonial about a kid needing rehab after they are discharged but there may be something in the archive on it. There is plenty for adults... I just can't recall any with a kid.

Good luck.

DairriensMom
09-26-2009, 02:37 PM
Mary Ellen,what a wonderful post thank you..I didnt think it was long,I think it was full of alot of answers I had questions about..it is so nice to talk to others about their childrens surgeries and recoveries....I do have one question,did your child..or anyone child for that matter,have to have any physical therappy after returning home? And staying at the RMH a few days after Surgery is actually quite a good idea,just in case we need the doctors for anything...I think we may do that :) gives him a few more days healing without traveling aswell...

Snoopy
09-26-2009, 02:50 PM
Should we get one before he has surgery? as that the Norm?

I am most definatley taking Pre and Post Operative Pictures so Dairrien can see the difference

Has any of your kids had their surgery done through Shriners? I will have to stay at the Ronald Mcdonald House because I will have my youngest son with me...Which is going to be hard to leave Dairrien for a while.. But its only 3 blocks away,and I will be close to him....Thanks for all the information it is so much help!!!


I would get the flu shot before surgery, in fact as soon as possible. Jamie's surgery was in December and our family doctor wanted us both to have a flu shot before surgery.

Pre-surgery and post-op pictures are amazing to look at! Jamie and I look at them every once in awhile and we are both still amazed at her great correction.

Jamie's surgery was not done at a Shriner's but there are people on this forum who had surgery done at different Shriner's hospitals. They are great with the kids as well as the parents. Can you have someone come and stay with you at the Ronald McDonald House to be with your younger son, or better yet, let him stay with a grandparent or a trusted friend while you are at the hospital? It depends on the child--some kids have to be close to mom and their sibling and others do better staying home and having school, sports, etc. as a great distraction.

I know, there is a lot to think about, but the more planning you can do ahead of time, the better and then you have less to worry about once the surgery date arrives.

Mary Lou

DairriensMom
09-27-2009, 01:23 AM
We go in the 14th so I will make sure to get him a flu shot..I am going to get mine next week,so I will get his at the same time.. we do plan on taking a lot of pictures..we have family and friends who are going to get pictures via email of him in the Hospital..He broke down crying today cause he is very scared..although he has had surgeries before,he has never had back surgery and he is very scared..Reality is setting in..and I am trying to comfort him to the best that I can..I feel so bad for him :( I hug him and tell him I love him and tell him everything is ok.. But then I am scared out of my mind too...*Heavy Sigh* :(

WNCmom
09-27-2009, 09:06 PM
did your child..or anyone child for that matter,have to have any physical therappy after returning home?

No physical therapy after returning home. It's my understanding that except in unusual circumstances, walking is the only PT prescribed.

This time of waiting is the hardest.

Mary Ellen

Hannamom
09-27-2009, 09:42 PM
My daughter is in PT right now. A nerve in her thigh (lateral femoral cutaneous nerve) was compressed during surgery. Her thigh, leg, has numbness and weakness. The surgeon feels that it will heal in time. She's walking with a cane and will be 11 weeks post op tomorrow. She can't walk without the cane. I know nerve damage/problems are slow to heal. I'm hopeful in time she'll regain her strength and won't need the cane any more.

Her surgery was 9 hours long. When she came out there was a red area on her thigh. Almost looked like a bit of a burn. She is fused T2 to L4 for kyphosis.

Hannamom

Pooka1
09-27-2009, 09:45 PM
My daughter is in PT right now. A nerve in her thigh (lateral femoral cutaneous nerve) was compressed during surgery. Her thigh, leg, has numbness and weakness. The surgeon feels that it will heal in time. She's walking with a cane and will be 11 weeks post op tomorrow. She can't walk without the cane. I know nerve damage/problems are slow to heal. I'm hopeful in time she'll regain her strength and won't need the cane any more.

Her surgery was 9 hours long. When she came out there was a red area on her thigh. Almost looked like a bit of a burn. She is fused T2 to L4 for kyphosis.

Hannamom

Very sorry to hear it but it sounds like it will heal.

Can I ask if they had the monitoring wires attacked to her scalp during the operation? That is supposed to alert the surgeon immediately if there is a nerve issue.

Good luck.

Pooka1
09-27-2009, 09:47 PM
I just wanted to add that nerves are really quite amazing sometimes as to healing.

In horses, if they have certain chronic pain conditions, a vet will actually cut the nerve to give the horse relief from pain. As I understand it, the nerves almost always grow back and you have to do the procedure again.

It's quite amazing.

DairriensMom
09-27-2009, 11:59 PM
It sounds like just worst part is the waiting for the surgery ??? I am glad to hear there is no PT involved..As I was really worried about being away from home for so dang long..I guess the lady I spoke to on the phone at shriners was had her wires crossed...she was from the department that makes the arrangements for the parents for their stays.IE RMH or in house stay while the child has surgery..she told me that dairrien will probably have some sort of PT and plan on staying 2 weeks for in house recovery and 2 weeks for PT..But as I listen toall your experiences this is not the case at all...I am glad to hear this,as I am a single parent and didnt know how I was going to spend that much time away from home...Glad I dont have too...LoL!!

I am sure I will have lots more questions too come....Thanks everyone for all the great advice,and if there is more,please feel free to share...:D

Snoopy
09-28-2009, 07:04 AM
I do have one question,did your child..or anyone child for that matter,have to have any physical therappy after returning home?


Jamie had physical therapy, but not until she was about 2 months post-op. Although we live only 20 minutes away from the hospital where her surgery was done, we chose to take her for p.t. somewhere other than the hospital. She started with aqua therapy and them moved to having both aqua and regular p.t. It was very good for her.

Please remember that what we say here is just a guide. Every child's surgery and recovery is different and so are the doctors. Ask your surgeon if he thinks Dairrien will need p.t. and ask if he could do it at another location.

Mary Lou

Snoopy
09-28-2009, 07:15 AM
It sounds like just worst part is the waiting for the surgery ???


I try to describe this surgery as "phases". Phase I is the "scared out of my mind". You are deciding whether or not to have surgery, gathering details of the surgery, etc. Phase II is the waiting for surgery. This one you already understand. Phase III Day of surgery. Yes, this is a phase all its own. The waiting before surgery is tough, but the day of surgery is even tougher. Sorry to tell you this, but I would rather have someone prepared rather than spare their feelings. However, once you see your child in recovery, all the worry and fears tend to disappear. Phase IV Hospital say and first week or two after surgery. This phase is just plain tiring! It sometimes feels like having a new born baby in your house. Phase IV This is the hardest one sometimes. This is where your child starts to feel much better and now you feel like you have a two year old in your house! You have to watch them constantly! The kids start to feel better, their doctor tells them they can start to resume "some" activities which the kids hear as "I can do anything I want to do" which is not the case. Depending on the doctor's recommendations, some restrictions last for a full year after surgery (this was the case for Jamie) so this tends to be the longest phase. Phase V You reach the one year mark and then things tend to fully return to normal and before you know it, you're looking back at the pictures before and after surgery and can't believe you survived it all.

Sorry this is so long. I hope it helps. I found that it helps to break things done into phases, whether the phase last a day or weeks, it seems to be less overwhelming.

Mary Lou

Hannamom
09-28-2009, 08:08 AM
Sharon


I don't believe they had monitoring on her head for a nerve problem. In PT they have just started electrical stimulation of the area. So I'm hoping that will speed it along. I have to be patient. Our surgeon said it would heal, just take some time. He hasn't let us down yet!

Ann

WNCmom
09-28-2009, 08:37 AM
I want to echo Mary Lou. Each case is different, and it is possible there are plans for PT for your son. Your surgeon is the one who will decide; s/he will have the final word, so don't consider it settled until you talk to the surgeon post-op.

Mary Lou--was Jamie's PT something you decided to do on your own, or was it prescribed by the doc?

Mary Ellen

Snoopy
09-28-2009, 02:36 PM
Mary Lou--was Jamie's PT something you decided to do on your own, or was it prescribed by the doc?

Mary Ellen

It was prescribed by the doctor.

Mary Lou

DairriensMom
09-29-2009, 03:47 PM
I try to describe this surgery as "phases". Phase I is the "scared out of my mind". You are deciding whether or not to have surgery, gathering details of the surgery, etc. Phase II is the waiting for surgery. This one you already understand. Phase III Day of surgery. Yes, this is a phase all its own. The waiting before surgery is tough, but the day of surgery is even tougher. Sorry to tell you this, but I would rather have someone prepared rather than spare their feelings. However, once you see your child in recovery, all the worry and fears tend to disappear. Phase IV Hospital say and first week or two after surgery. This phase is just plain tiring! It sometimes feels like having a new born baby in your house. Phase IV This is the hardest one sometimes. This is where your child starts to feel much better and now you feel like you have a two year old in your house! You have to watch them constantly! The kids start to feel better, their doctor tells them they can start to resume "some" activities which the kids hear as "I can do anything I want to do" which is not the case. Depending on the doctor's recommendations, some restrictions last for a full year after surgery (this was the case for Jamie) so this tends to be the longest phase. Phase V You reach the one year mark and then things tend to fully return to normal and before you know it, you're looking back at the pictures before and after surgery and can't believe you survived it all.

Sorry this is so long. I hope it helps. I found that it helps to break things done into phases, whether the phase last a day or weeks, it seems to be less overwhelming.

Mary Lou



Thank you..I really like the whole "stages" look on this...as the time is creeping up on us,it is good to see other peoples take on this,and to see how others have delt with it...so thank you :)

Pooka1
09-29-2009, 04:31 PM
I try to describe this surgery as "phases". Phase I is the "scared out of my mind". You are deciding whether or not to have surgery, gathering details of the surgery, etc. Phase II is the waiting for surgery. This one you already understand. Phase III Day of surgery. Yes, this is a phase all its own. The waiting before surgery is tough, but the day of surgery is even tougher. Sorry to tell you this, but I would rather have someone prepared rather than spare their feelings. However, once you see your child in recovery, all the worry and fears tend to disappear. Phase IV Hospital say and first week or two after surgery. This phase is just plain tiring! It sometimes feels like having a new born baby in your house. Phase IV This is the hardest one sometimes. This is where your child starts to feel much better and now you feel like you have a two year old in your house! You have to watch them constantly! The kids start to feel better, their doctor tells them they can start to resume "some" activities which the kids hear as "I can do anything I want to do" which is not the case. Depending on the doctor's recommendations, some restrictions last for a full year after surgery (this was the case for Jamie) so this tends to be the longest phase. Phase V You reach the one year mark and then things tend to fully return to normal and before you know it, you're looking back at the pictures before and after surgery and can't believe you survived it all.

Sorry this is so long. I hope it helps. I found that it helps to break things done into phases, whether the phase last a day or weeks, it seems to be less overwhelming.

Mary Lou

Post of the Month nomination. :)

laurieg6
09-29-2009, 08:44 PM
Those phases describe the process to a "T"! That's really great Mary Lou.

Snoopy
09-30-2009, 07:21 AM
Dairriensmom,

You're welcome. This whole process is so scary and overwhelming that you need to focus on little chunks at a time or you'll drive yourself crazy. You will get through this and you'll find that Dairrien will be a much more mature and stronger young man for having gone through this.


:o I would like to thank the academy and my dear friend Sharon for nominating me for this great honor.........;)

Thanks Laurie. I've posted this several times as it really does seem to sum up the whole process pretty well. People tend to focus only on the pre-surgery and surgery phase and they don't realize that there are challenges throughout the whole recovery process.

Mary Lou

DairriensMom
10-08-2009, 11:02 AM
we leave next week for Dairriens Pre-Op appointment.. The nervousness is setting in...and all dare can say is ..I hope we can get the surgery done and over with SOON!!! I am just wondering how long after the Pre-op will he have the surgery....Can anyone shed some light on that? I know for everyone it is different,but I wads curious on the time frame others have had...again he is having it done at Shriners.. Thank All !!

WNCmom
10-08-2009, 01:25 PM
Sidney had surgery 2 days after the pre-op, but we live 14 hours away from Philadelphia where the surgery was done and had had all the preop tests (PFT, ECHO, EKG, etc.) done several months earlier close to home in NC. His preop at Shriners consisted of new x-rays, lab work, meeting with the anesthesiology nurse, and updating an MRI to make sure a very small syrinx had not changed (it had disappeared!).

It doesn't sound as if you have been given a surgery date yet. We had Sidney's before we traveled to Philly, of course, so your case is different. When you go in, be sure to ask about the date.

DairriensMom
10-09-2009, 10:29 AM
Yea thats the bad part as Shriners does take a while....I hate waiting..LOL...