Is it time for Surgery? Need opinions

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

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Is it time for Surgery? Need opinions

Postby sydney'smom » Thu Jul 22, 2010 11:11 am

My 10yr old DD was dx with 19mm Chiari in November 2009. At the time she was suffering from headaches and dizzy spells. Recently our NS did a full back MRI and found a Syrinx. Right now she is pretty much symptom free but both Docs that she has seen (local Ped NS and Dr Di at Cleveland Clinic) think it may be time for surgery. Just would like some of your thoughts. This decision is weighing very heavy on my heart and I just want to make sure we do the right thing. I would think with the development of the Syrinx more symptoms will come and I feel like it is better to fix the Chiari and prevent the Syrinx from getting any worse. We do not want to see any further damage. Please let me know what you think.
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
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Re: Is it time for Surgery? Need opinions

Postby julieplus3 » Fri Jul 23, 2010 7:15 pm

Has your child had a full MRI before? Here are my thoughts... if an MRI was done before and there was no syrinx and then now there is, that would clearly indicate progression, even though symptoms have not arisen. However, if they hadn't done the MRI before and found the syrinx on this first one, it probably was there the whole time. So if surgery wasn't recommended before, that really shouldn't change.
You could either do the surgery now, or keep monitoring the syrinx and do the surgery if there is any change in the syrinx or in symptoms (prob. what I would do).
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Re: Is it time for Surgery? Need opinions

Postby julieplus3 » Fri Jul 23, 2010 7:16 pm

PS - second opinion is always recommended, and Dr. Frimm is a great doctor! :-)
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Re: Is it time for Surgery? Need opinions

Postby Becky1219 » Mon Aug 02, 2010 7:54 pm

I agree with Julie. We went to Cleveland to get a second opinion from Dr. Di and I sent a copy of Jack's MRI to Dr. Frim for a third opinion. Dr. Di recommended surgery since Jack has a syrinx and hydrocephalus, but said it wasn't emergent though shouldn't be postponed too long. Dr. Frim said that while Jack has a syrinx it is a "long-thin" syrinx and likely unrelated to the chiari and since Jack isn't having drop attacks, aspiration, or apnea he wouldn't recommend surgery at this time. His nsg here also doesn't recommend surgery at this time. This is such a difficult decision, we've decided to hold off on surgery for now since Jack is mostly symptom free and the healthiest he's ever been. Good luck with your decision.
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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Re: Is it time for Surgery? Need opinions

Postby razzle » Wed Aug 04, 2010 4:43 am

Have yall seen this Dr .

Dr. Alan R. Cohen
Pediatric Neurosurgeon
Childrens Hospital
11100 Euclid Ave.
Cleveland 44106
(ph) 216-844-5741
(fax)216-844-3014
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Is it time for Surgery? Need opinions

Postby lttutrow » Wed Aug 04, 2010 9:23 am

All I can do is speak from what we've experienced. My son has both CM/SM, and my daughter has CM. Between the time we found out my son had SM and had surgery scheduled, and the actual surgery date, he had a rapid decline in his arm strength. He has been very athletic, but he needed help to even pull open the doors at a store or open a bottle. He had this weird sensation in his hands that they were *cold*, and I found him in the bathroom, soaking them in SCALDING hot water trying to warm them. When I pulled them out, they were hot and red, definately warm to my touch, but he was almost in tears upset because they felt so uncomfortably cold still to him. Our nsg. said that most will get a numb feeling, but for whatever reason, he was registering this as cold. It took us several months after his surgery, and some physical therapy, for him to get his strength back. He still doesn't have as much arm or hand strength as his peers, not to the point it gets in the way of his daily activities, but to the point that he notices a difference when doing specific skills with athletics. I know that for some, the SM is more of a persistent central canal and not causing symptoms, but my son's certainly was. His SM was only 5mm wide at its widest, which by no means is as large as many others here, but was definately effecting the nerves in the area. On a side note, our first opinion nsg. who is very well known either did not observe the SM (which I find hard to believe), or thought it was incidental. Had we known it was there sooner, I know we would have been more insistent on having the surgery sooner to reduce the damage to his spinal cord.
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