Syrnix goes from 7mm to 1mm back to 3mm

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

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Syrnix goes from 7mm to 1mm back to 3mm

Postby Dustin » Tue Mar 04, 2008 3:19 pm

Dax had a follow up MRI yesterday and it showed the syrnix growing in size. It was 7mm at it's widest point right after the injury/accidental CM finding and before the surgery. Two months later it had gone down the 1mm but has since gotten bigger and is now at 3mm.

We are currently at Cook's in Ft Worth, and our the doctor that runs the therapy unit Dax is on told my wife the MRI results, but we are waiting for the neuro-surgeon to come and talk to us more about what treatment Dax will get for the syrnix.

We have no idea what our options are yet and are just wondering if the increasing in size AFTER it decreased is common????
Dustin
 
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Postby Janice » Tue Mar 04, 2008 4:01 pm

Hi Dustin,

I honestly can't answer your question. However, I would be concerned about my syrinx growing after shrinking so much. I would think that it means more tests need to be done in order to determine why it's growing again.

I pray that Dax has no additional problems and that the doctors do all they can to ensure this.

Take care and you and your family are 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 Dustin » Tue Mar 04, 2008 4:58 pm

The weirdest thing is everything about him is improving. He has regained movement in his arms, has weak movement in his legs, and his personality is definatly back. He throws his normal tantrums, but doesn't seem to have any pain or discomfort. With PT and OT we hope he is able to walk again and be independant as he grows older. He does have a trache to assist him with breathing, but is off the vent untill he naps or sleeps.

Anyone know any CM/SM experts in TX?
Dustin
 
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Postby brianfsmom » Wed Mar 05, 2008 6:38 am

Hi Dustin

First of all, I am glad to hear that Dax is improving clinically. Hopefully that will be a sign of things to come.

Second, as for the syrinx, unfortunately, they just do what they want. I'd be a little worried, of course, because I always worry. How is the chiari site looking, as far as CSF flow?

I would think of a few things to try to allay fears: maybe the measurements are not exact, and the syrinx really hasn't increased that much, or at all. Or perhaps there was initial improvement, and as things settle in after surgery, the syrinx has found a new 'normal'. Either way, in light of his improvements, I would think they would only want to monitor it.

Logically, since the syrinx shrunk after decompression surgery, the chiari must have caused it to form. So if it is growing, the chiari could be considered a suspect in its return. My son's chiari site, for example, showed initial improvement which amazed some of his doctors, because of how high up the brain went. A year later, it had moved down a bit again; low enough to be considered low-lying by the radiologist, but now low enough to obstruct the flow enough to cause symptoms or a change in his syrinx.

They remained there for the following year, without causing any change in symptoms or syrinx size. (this was last year)

I hope this all makes sense. I'm still so sorry that this all happened to your son, but it sounds like he's handling it well. Sorry I can't help with an expert in TX, but I know I have seen many mentioned on this board and others, so I'm sure you will get some names.

Hang in there!
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Postby Dustin » Wed Mar 05, 2008 5:38 pm

We had it explained a little better today by the neuro-surgeon. He gave my wife the specifics, but the last measurments we got for the syrnix was incorrect. It was at a 3mm 6 weeks ago, and is still the same (not from 7 to 1 to 3) It was 7mm to 3mm and steady at 3mm. He said it just takes time to go down, and will not do another MRI for 6 months unless his condition gets worse.

Everyday Dax gets stronger and is even flexing his hips. His improvement is chalked up as being a "miracle" from what the neuro docs say. He gave a statistic of 1 out of every 1000 improve like this. I don't know how they know this, but it makes us feel better.
Dustin
 
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Postby brianfsmom » Thu Mar 06, 2008 1:04 pm

Great to hear that Dustin, I was hoping that was all it was. Moral of the story: don't listen to anyone, or read anything, until you have spoken to your doctor. I have learned that lesson myself, many times.

Wishing for more miracles for Dax!
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Hello from Texa

Postby jonesjam » Thu Mar 06, 2008 5:16 pm

Great news about Dax! Congratualtions! It sounds like he is doing wonderful. A quick question.. do you like Cook Childrens and who is your doctor? My daughter has an appointment there next week for her Chiari and Syrinx. We might be going to Cook Childrens for surgery. Just curious how they have taken care of your son and family. I think we are seeing Dr. Honeycutt.
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Postby joeysmom » Thu Mar 06, 2008 8:00 pm

I would like to say that my son who is 9 now had PFD with Dr. Honeycutt 12/06. He is a great, caring man who even prayed with us before the surgery! Cooks couldn't have been better. They have a wonderful child life team that really made sure all my children understood all that was going on. They came in the room the first time my then 6 year old daughter saw her brother. She was very aprrehensive and it was such a comfort to have someone explain all the tubes and such that she saw attatched to Joey. During the nearly 4 hours that Joey was out of our sight, they called frequently to update us on how things were going. They also never complained about the 20+ people that were waiting with us in the waiting room.

The one thing I would say though is depending on the age of your child, they want the child to say they want the pain medication. The only issue we had during our stay was after my son vomitted his liquid pain medication. It hurt him so much to vomit that he refused the pain meds thinking they were giving him more liquid. When I made it clear to Joey that they could give him the medicine in his IV then he told the nurse how bad he was hurting. I guess they really want to be careful with the narcotics which I understand.

I pray that Dax continues to heal! I have been keeping you all in our prayers since I read the first post before Christmas. Jonesjam, if I can answer any other questions please PM me.
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Postby Dustin » Mon Mar 10, 2008 10:59 am

Cook's is great. Dr Honeycutt has seen Dax, but Dr. Roberts will be the one following up on him. He didn't have his decompression surgery @ Cook’s; he had it as an emergency surgery @ Scott and White in Temple TX. His recovery has been "miraculous" so says most of the doc's he has seen.

We have loved Cook's but are so tired of hospitals in general. We are ready to come home. He is no longer a medical patient, just a rehab patient right now because of the paralysis.

The Transitional Care Unit (Rehab Unit) is great and has been so nice and caring the 3 months we have been there. Sure there have been a couple "pool nurses" we would rather not have up there, but the day to day nurses are awesome.

Almost all the doctors have been awesome too. Coming from a "regular hospital" to a "children's only hospital" is a huge difference. They really make you feel like you’re the only patient/parent there even though they are so busy. All the doctors have even remembered my name and I am only there 3 days a week. They of course know Dax's and spend time with him every time they come to see him. They find out what he is like and the things he likes and talks to him about them. The proof is in the pudding because Dax has gotten to know them by name and he is only 2.
Dustin
 
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