Luli's Surgery/Recovery

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Luli's Surgery/Recovery

Postby JenandLuli » Tue Nov 10, 2009 12:50 am

Well, Luli had her surgery 1 week ago. WOW! What an incredible week we have had!
The surgery went fantastic! Dr. McComb said that they removed 2 lamina and as soon as they cut into the syrinx it collapsed and that they were able to put in the gelfilm strip to hold it open. He said that the gelfilm will dissolve in a few months. Only time will tell if the surgery was an absolute success... in the sense that we need to wait and see if it grows again or if the upper syrinx drains or if all the neuro effects stay stagnant or get better, etc. But I cannot tell you what a relief it is to be done with it!
After surgery, for a few days, She had to lay flat which was hard on her. Luli's feet and legs were REALLY painful. Especially her leftside. Burning and tingly. I was worried that nerve damage was done. But by the 3rd day it diminished and now 7 days out it is gone. The dr said that they think her leg was probably more numb than we realized and that it was the nerves coming back to life and firing off now that the pressure of the syrinx was gone.
When they removed her foley cathader she did not regain bladder control. Again, I was afraid that damage had been done. I had to learn how to cath her so she could go. But after a day and a half... she was back to normal!!! :-D
We were discharged on friday. Luli is literally bouncing off the walls. I cannot believe how well she has recovered!!! She moves much more gingerly, she can't bend over and her steps are more careful.
We have a post-op appt on Thurs. so I will get more info about when our next MRI will be, etc. But I have to say I could not be happier with the experience and with our DR!!!!
If you want to read more or see pics, etc you can go here:
http://www.caringbridge.org/visit/luli
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Luli's Surgery/Recovery

Postby GrimeyGal » Tue Nov 10, 2009 5:53 am

I am so happy for her that things have gone se well so far. I will keeep her in my prayers for a full recovery.

Patty
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Re: Luli's Surgery/Recovery

Postby GrimeyGal » Tue Nov 10, 2009 6:20 am

looked at her CaringBridge site. What a beautiful little girl and what horrific looking syringes, especially the lower one. I hope they dissapear FOREVER!

Patty
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Re: Luli's Surgery/Recovery

Postby Janice » Tue Nov 10, 2009 12:19 pm

Hi Jen,

Thanks for posting an update. I actually thought the gelfilm would remain in place forever. This is a new product so we'll all learn about it together. I pray her syringes remain collasped and that she continues to see much improvement over the next few months.

Take care, I'm thrilled to hear this is all behind you now. (((((Prayers, Love & Hugs)))))
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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Re: Luli's Surgery/Recovery

Postby JenandLuli » Wed Nov 18, 2009 10:17 pm

I wanted to post an update regarding Luli's recovery.
We are 16 days out of the surgery and she is having 0-1 pee-pee accidents a day. She was having about 5 a day before surgery.
She has not complained of tingly feet since we left the hospital.
WOW! I was hoping for these results... but I am shocked by how quickly it happened!

She is still complaining a bit about her neck. That is where the syrinx is located that was not operated on. Our hope is that the pressure that was relieved below will cause the other to drain. We will have an MRI in Jan. to check on the status of everything.

But I am LOVING that my laundry has gotten much less since we have been home. And loving that Luli is no longer in pain!!!
:D
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Luli's Surgery/Recovery

Postby youngwife » Thu Nov 19, 2009 1:49 am

Truly wonderful news!! I am so thankful that she is doing so well. I pray that this will continue, and that the syrinxes do not return.

Blessings to you and your family,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Luli's Surgery/Recovery

Postby SamuelsMom » Tue Nov 24, 2009 11:06 pm

Thanks for the update. That's wonderful. Keep us posted.
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