15 yr old son: post decompression w/ C1 laminectomy

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

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15 yr old son: post decompression w/ C1 laminectomy

Postby arnajett » Tue Mar 15, 2011 9:42 pm

Hello. I am very new to this but need some guidance and some help. My 15 yr old is 4 months post decompression and c1 and partial c2 laminectomy. Did well after surgery. Is back to activities with some residual headaches but now more dizziness and lower back pain. Just had our 4 mo f/u MRI and it shows that his Chiari flow is good even with the tonsils still distending a large amount. (He had 25 mm distended tonsils "very impressive Chiari our surgeon had said.") CSF flow in brain is good however he did have a syrinx with his Chiari, hence the need for surgery in Nov 2010. The MRI showed that NO CHANGE to syrinx. I am a little disheartened and just hurting for him. Haven't told him that there is still possible duraplasty surgery in our future. Surgeon feels like he doesn't need to completely eliminate activity (soccer and track--very good at both) that will not get the syrinx better; just will alleviate symptoms. Has anyone's child had this and had to return for surgery? Really love our ns; he's very caring, understood about me completely losing it over the phone over the results. Have an appointment in April, f/u MRI in May again to determine since his Chiari was so impressive that its just taking longer for syrinx to improve. If anyone can help, I would appreciate it. Support is what we need! Thank you
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby Kate456 » Fri Mar 18, 2011 11:36 pm

I know it is discouraging not to hear that the syrinx is smaller! I am an adult who is 5 months post surgery and for what it is worth my NS said he was not going to do my first follow up MRI until 6 months because my Chiari and degree of compression was so great that he felt it would take longer for the syrinx to shrink back. If you take a look at the articles posted on the Conquerchiari website, one of them addresses statistics regarding changes in syrinx and time does seem to make a significant difference.

Hopefully your son and I will both get good reports when our bodies have had a little more time to react to the change in pressure and increased flow. I get very worried about it some days and then have to calm myself down and try to just take things one day at a time and live more in the moment. I know that is very hard to do, especially when it involves your children. I hope your son is holding up okay. It sounds like you have a great NS who really cares about your family.

Please let us know the outcome of his next MRI and try not to get too anxious! Good luck! Feel free to send me a PM if you want talk more.
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby lcolangelo » Mon Mar 21, 2011 11:47 am

I have 2 children with chiari-- without syrinx though. Both of my children have had to have repeat surgeries--- my duaghter who is 12 has had 5 --- they are rare though-- they continue for some reason to grow back the bone that has been removed-- as well as signifigant scar tissue-- we see Dr. Menezes in Iow who sees alot of chiari patients and he says it is rare. Good luck to you and your son-- i know how difficult this is!

Lisa
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby arnajett » Mon Mar 28, 2011 7:27 am

Thank you for your responses. @Kate456: I really appreciate hearing that your ns told you that. Mine was not as positive but did say that some people, especially with his 25mm distended Chiari, that it might take a little longer. I will strive for positive thoughts though knowing that you are handling this same issue. He's coping the best he can, I believe he gets anxious a lot too about the prospects of another, more invasive, surgery. I understand totally; it definitely inhibits your life!

Good luck to you and I really pray that we both get good news at our 6 month post-op MRI.

@lcolangelo: wow, I pray that both your children do not have to have anymore surgeries. Sending you good thoughts!
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby drummergrl » Tue Mar 29, 2011 8:58 pm

Arnajett-

I had the surgery at 16, just about 5 years ago, and had the exact same thing happen- my fluid was flowing much better, but the syrinx was unchanged. The only difference was that I had a duraplasty the first time around. I was told that sometimes syrinxes remain unresolved, although my NS still tells me that mine could still shrink. At first I was completely upset, so angry that I had the surgery for what felt like nothing! Over time, though, I've come to terms that it was at least a very good step to get the fluid flowing better. My syrinx definitely still causes its share of symptoms, but I was able to continue playing sports the rest of high school (tennis, golf, soccer) with little to no problems.

Hopefully the syrinx resolves on its own- 4 months is still pretty early on. My NS told me that it takes more time for some people than it does for others. Either way, getting the surgery done as a teenager is so beneficial- I'm so thankful I didn't wait to get it done!

Keep us updated on how it goes!
CM, SM, Scoliosis
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby arnajett » Sat Apr 09, 2011 8:55 pm

I feel so helpless for my sons pain.he is suffering from continuous pain.ns is still waiting for MRI in may to decide whether to do duraplasty. Does Anyone know what he can take for pain? Aleve is not working,not ibuprofen,trying excedrin with muscle relaxers. This is so tough. Thanks to everyone.@drummergirl-I told my son what all u said. Hope this can reassure him and his fears of more surgery. U r an inspiration for us!
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby arnajett » Sat Apr 09, 2011 8:57 pm

I did not state what pain . It's upper & low back pain.
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby Kate456 » Sat Apr 09, 2011 11:51 pm

I"m so sorry to hear that your son is having so much trouble with back pain. I know it is AWFUL for you as his Mom to feel so helpless when he is suffering. Is your NS sure that the back pain is related to his syrinx? Any possibility it could have another source? Is there any chance that his upper back is still weak and inflamed from the laminectomies and that his sports are aggravating this and causing the pain? I say this because I had a c1 laminectomy in early fall and still have quite a bit of tenderness and weakness in my upper back and neck. If I run or jar my spine in any way i really pay for it in discomfort and neck pain. it gets better every day though and I am just trying hard not to aggravate it so it can finish healing from the surgery. Does it feel to him like muscle pain or more like burning nerve pain?

Do you know where in his spine the syrinx is and how big it is? I had my follow up MRIs and CINE MRI and my syrinx is collapsing. You might remember that my NS waited for 6 months to do the first follow up because he didn't think there would be any change before that time. My NS says that my new symptoms are from the spinal cord nerves reacting to the change in pressure and the increased flow through the cord as the syrinx gets smaller and that they should get better as things settle down. Maybe that it happening with your son too!

You might think about your next steps if it isn't smaller in May. I would be very hesitant to go back for a duraplasty
without getting another opinion or two. If the flow is good and pressure is normal then what would the duraplasty achieve? Check out that research study on outcomes on the Conquerchiari website that I mentioned before. It might be helpful to show your doctor. I know you don't want any more surgery for him and I wouldn't go down that path unless several NS's tell you it is necessary.

But, try to hang in there and stay hopeful that all is well. As I said, I am clearly worse in terms of the pain and symptoms from my syrinx than I was before surgery but the surgery was successful. It will just take time for things to settle down and adjust. I pray that your son is in the same position. Please let us know what happens with his follow up. Have you thought about trying some gentle massage therapy for the pain? Ask your NS if it is okay but it might help determine if his pain is muscular in nature.

Kate
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby arnajett » Sun Apr 10, 2011 9:01 pm

Kate, I really appreciate all information you have given me. I believe his syrinx goes from t6-t12 but I could be mistaken. I just remember his Chiari amount... But, the NS isn't certain that it's syrinx b/c it isn't a nerve feeling pain. More straight along his spine. I am looking into massage therapy through my work (I work for a hospital) and tryikng to get that done for him. Just feeling so helpless. And, he wants to continue doing his track meets and soccer games. Its just so tough. The NS said Wednesday that he doesn't know if the answer will be opening up the dura in May after another MRI. We just have to see what the syrinx looks like and maybe continue another two months down (if it still is unchanged) for another MRI and just keep an eye on it. But, he is obviously concerned about the amount of pain he is in, so that might also be our deciding factor. I am hoping I can also get in touch with someone his age so he can talk to them. Someone who has experience and maybe also had duraplasty that way in case we do end up going that route. He needs to communicate with someone who understands. Sometimes I am just as frustrated and come across as angry about it. I am more angry about the whole thing and that I can't fix it.
Did you take anything specific that helped with the back pain? Can't seem to get anything that will at least reduce the pain to dull?

THanks again for all your words of wisdom!

Arnajett
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Re: 15 yr old son: post decompression w/ C1 laminectomy

Postby texasmom » Wed May 18, 2011 1:55 pm

Sorry that your son's syrinx has not gotten smaller! My son had surgery when he was 4. He is almost 13 now. His syrinx never resolved. It has not gotten bigger, but I really don't know how it could--it runs almost the entire cord. He is asymptomatic. We have seen several NS including Dr. George, Dr. Frim, and Dr. Menezes. All say that there are some syringes that do not resolve even though the CSF flow is good. Dr. Menezes leaned toward another surgery (although he said it could wait as long as we were watching for symptoms), Dr. Frim said he would not do another surgery since he was asymptomatic, and Dr. George was on the fence but was also comfortable not doing surgery. The original NS in Houston also says did not recommend another surgery without symptoms. We decided to continue to monitor with yearly MRIs--there is no guarantee that the syrinx will resolve with another surgery (his dura was opened during the first surgery) and, while the risks are relatively low for another surgery, we were afraid of opening pandora's box (possibility of headaches, infections, etc) when he is asymptomatic.

I hope that your son's next MRI shows that the syrinx is smaller!
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