Rehabilitation after decompression surgery

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Rehabilitation after decompression surgery

Postby Mama G » Sun Mar 23, 2008 8:42 pm

My 4 yr old son was recently diagnosed with CM/SM and is scheduled for decompression surgery on April 3rd. What type of rehabilitation has been successful/needed for post-op care?
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Postby brianfsmom » Mon Mar 24, 2008 6:40 am

Hi Mama

Rehab for me consisted of lots of sleep and many bottles of wine.

Oh, wait, you meant for your son. :lol:

A four year old should not need much rehab. The first couple of days will be a little tough, but he should have pain meds. By the time you leave the hospital, the issue should be limited to a stiff neck and maybe some minor headaches. Within a week, the biggest challenge should be keeping him still so he will heal well.

Of course there are the usual things to watch for, which they will tell you: fever, swelling, redness of the incision, nausea and vomiting. Mainly just focus on comfort, such as propping him up with lots of pillows and make sure he has his favorite movies and games to keep him occupied.

Good luck, and let us know how he does!
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Postby dtyree » Mon Mar 24, 2008 7:51 am

Ditto, Ditto!!!! (not the wine, please)
And just a little word to God that your son has a wonderful, quick healing so that he can get back to his life, but without all of that Chiari stuff, he needs to be a boy.

Peace,
David
Been called a "walking medical dictionary".
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Postby Mama G » Mon Mar 24, 2008 12:46 pm

Thank you for the prayers and insight into what to expect after surgery.

The reason I am asking the question is because my son is already receiving OT and speech services. His fine motor delay is significant already, so obviously we will need to continue this care. But I'm wondering about PT. I noticed in my research that adults are needing PT to get up and moving, but the little ones are "bouncing back" without the benefits of a PT. However, in some cases approx 3 years after surgery many children find themselves having agility concerns. I am trying to keep this from becoming another...I should have, kind of moment(I have plenty of those already). Any ideas on where to get some more information?
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Postby Janice » Mon Mar 24, 2008 1:01 pm

Once he has surgery, if you feel there is a need for PT, speak to the doctor about him receiving those services.

Generally, if you feel PT is needed the doctor doesn't refuse the request.

I had brain surgery at 4 1/2 years old for a different reason and required rehab services for re-learning/training on eating, walking, potty training and other things. My mom saw the need and we received the service, unfortunately mine was in-patient.

Observe his functioning level after surgery for several weeks and then speak to the doctor about any concerns you may have regarding services going forward. I'm sure your concerns will be put to rest.

Take care and you're all in my thoughts and prayers.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby brianfsmom » Mon Mar 24, 2008 2:00 pm

Excellent advice from Janice.

Don't worry about post-op services just yet, as any services he might require would be a continuation of services he already receives (or may require, as PT, even if he isn't in it yet), and not a result of the surgery. And you will have to give him some time to heal in order to determine if any of those issues have resolved.

My son did go for PT just to try to loosen up his legs a bit. His legs were very tight and spastic before the surgery. The thinking was that the PT would speed up a loosening, but what happened to us was that the PT couldn't even understand why we were there, so she'd stretch him out, and we'd go home. In our case, it was fun for him, but somewhat of a waste of our time.

Also, I believe any agility concerns (my son does have these as well, but within a normal range, I would say) would be a result of the underlying condition, and again, not a result of the surgery, and not anything you can predict or proactively prevent with PT right after surgery.

As Janice, says, let him heal, and take it from there. Good luck!
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Postby Mama G » Mon Mar 24, 2008 7:55 pm

I appreciate all the words of wisdom...you all seem so calm, maybe it's because I'm frantically trying to absorb as much information as I can before his surgery so I can be "ready." I am a little frustrated with how little information is available on children and their recovery from this procedure. And I can't help but wonder if the reason children don't need as much rehab as adults is because we have the ability to verbalize our pain, and they do not.

Don't mind my rant...my son has been in pain for about a year, and I'm trying to make it all go away.

Thanks for listening.
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Postby Beverley » Mon Mar 24, 2008 8:27 pm

I think that most kids get their point across for pain, nausea, etc. One of the reasons they bounce back so quickly is for most of they they still feel they can do things, they don't have the fear that an adult feels when they cannot coordinate movements properly especilly in front of others.

For me the need for PT after surgery comes from years of not knowing what what wrong with me. Virtually going from a normal functioning person at the age of 35 in 2000 and fast forward to the year 2008 before surgery I could only walk holding onto something, couldn't carry a cup of coffee, could not walk up/down stairs, cannot even step up a 2" curb without help, etc...

Since my surgery in March 2008, I am getting some of my mobility back but it is going to take time and PT to do it. I feel like a toddler learing how to do things like stairs, inclines etc. I am looking for a PT that has some knowledge of neuro disorders. I have check out one so far he has referred me to another. I am hoping to find someone that really is able to help and not just guessing what they are doing

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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Postby Janice » Mon Mar 24, 2008 9:35 pm

Hi Mama G,

As far as pain goes, you're right. Children don't verbalize pain as well as adults. However, from my experience with the little ones in my home, when they are really hurting, they scream or they're really quiet. One extreme or the other lets us know that something is wrong.

As far as needing rehab from loss of movement or functioning, you will be able to determine any loss so many weeks after surgery (as estimated by the NS). By this time you should also have a post-op appointment and be able to discuss your observations with his doctor. If further treatment is required, your son will receive it.

There has been many success stories on children on this forum. If you have a NS who is an expert in CM and/or SM, you really should consider him in capable hands.

I'm only relaying what I would be thinking if it were me and my child going through this.

You really won't know the true outcome until he's had a chance to recover.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby brianfsmom » Tue Mar 25, 2008 7:44 am

<<<you all seem so calm, maybe it's because I'm frantically trying to absorb as much information as I can before his surgery so I can be "ready." >>>

Speaking only for myself, I am calm because it's been three years since I was in your shoes (more, really) and I am not talking about my own child, so I'm not the one who has to sit in the waiting room during surgery, and endure the suspense of awaiting post-op MRI results.

In retrospect, none of it was that bad. But if I were back at the beginning, I would be just as worried as you are now! This is why I think it's going to be harder on you than it is on him. Try to focus on the positive: he's been in pain for a year? Hopefull he won't be in pain anymore now!!

My point is that although it's very scary while you go through it, the reality is that most kids do bounce back quickly - they're young, they heal faster, and their muscles are still developing so they can still develop normally despite having this surgery. Have faith in your decision and your surgeon, and hang in there!
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Postby dtyree » Tue Mar 25, 2008 7:48 am

Just a thought.

Children are very resilliant, they can bounce back from surgery, injury a lot quicker than an adult.

Peace,
David
Been called a "walking medical dictionary".
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Postby KyliesSis » Tue Mar 25, 2008 2:35 pm

I agree with what everyone is saying.

I'm just posting to say good luck, and hopefully, everything will be alright! Be positive, and I'll keep you and your family in my prayers. Let us know how it goes.
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Re: Rehabilitation after decompression surgery

Postby baabaablksheep04 » Wed Mar 26, 2008 3:39 pm

Mama G wrote:My 4 yr old son was recently diagnosed with CM/SM and is scheduled for decompression surgery on April 3rd. What type of rehabilitation has been successful/needed for post-op care?


Mama,
I have never done this so I hope I clicked on the right button to reply to you. My son is 11 1/2 years old and just had the surgery on January 10th of this year. He was in the hospital for only 4 days. The first two days are the worst for the kids. BUT, the nurses will keep your child comfortable with pain meds. It is a VERY painful surgery but they do keep up on the medications. Please stay on top of what times the medications are given to your child also. Don't let it get behind or your child will hurt ALOT!. After the 4 days in the hospital all my son had to do was to lay and relax and he got up on his own. Don't let your child push themself. It is a very serious surgery and your child will need rest. My son stopped taking the medications about three days after he returned home. The only post op that will be needed is hugs and kiss's from you and whomever else will be helping you. The surgery takes about 3 to 4 hours. God Bless you and your child. Becky
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Postby Lipper5 » Wed Mar 26, 2008 9:34 pm

My little pumpkin had his Decompression surgery Feb 20 and he is bouncing back really quick. He was 22 months at the time. The stay in the hospital was a little rough but it all worked out. Aiden has speech and PT now but if he did not have it before this I really dont think this was the reason to need it. Stiff neck but it is really coming along. The Dr said at his 2 week check that he was doing great. Most older children (because they understand pain) come in still with a really stiff neck and he said that does not need to be. We did a lot of yes/no exercises. He goes in 2 weeks to see if it worked...Good Luck and our family sends prayers to yours for a speedy recovery! :)
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Postby Kristine » Sat Apr 05, 2008 7:35 am

It is April 5th now and I am assuming that you are still in the hospital with your son and right in the middle of the worst part. I wish I had seen your post earlier so I could have given you some information about what we went through. If you are interested in reading my blog about it, go to www.caringbridge.org/visit/ebbert and go to the older journal entries. Emily's surgery was Feb 4.

It sounds like you really got some great advice already. Regarding the surgery, the recovery for that actually went really well after that initial hospital stay. My daughter also has other issues. She has Cerebral Palsy and Hydrocephalus. She is unbalanced anyway so I was concerned about her getting up to start walking after surgery. I was paranoid that she'd fall and hit her head on something. She was only shaky for a few days and then did well. Within just a few weeks post-op, she was 100% back to normal. I hope that your son's recovery goes just as well. Please update us on how he is doing as soon as you can.
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