13yr old -Kyphosis -Having Surgery

[DairriensMom]

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]

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]

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]

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]

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]

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...

[Snoopy]

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]

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]

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]

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]

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]

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]

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]

Those phases describe the process to a "T"! That's really great Mary Lou.

[Snoopy]

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.


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