Thank you

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

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Thank you

Postby corynsmommie » Tue Aug 07, 2007 9:29 pm

First I would like to thank those of you who responded to what I wrote.

I would then like to answer Angie and Brianfsmom questions. When coryn was born her pediatrician found what he called a "dimple" on her lower back just above her butt. It is two fold of skin that resemble butt cheeks that when you open it has two hole that lead all the way to her spinal colum, but are still covered by skin. That is why the original ultrasound and MRI where done. The doctors have only done an MRI of her lower spine, so, no a chiari malformation has not been ruled out.

I appreciate the information you gave me about tethered cord syndrome also. It had never been mentioned to me. After doing some research on it I realize that my daughter does have some of the symptoms (including a dimple on the lower back) and I will be bringing it up at her appt. next month.

Also, I am in the St. Louis, MO area and have found a doctor named Matthew Smyth. I was wondering if you had heard of him. Please let me know and thank you
corynsmommie
 

you are welcome

Postby brianfsmom » Wed Aug 08, 2007 7:41 am

corynsmommie

you are most welcome, glad our words were helpful. We have only limited experience with this, and can only share what we know. I have not heard of that doctor, but I am in the NJ/NY area so really focused on the doctors around here. I have heard a few bigger names, such as Frim and a few others, but that doesn't mean anything one way or another about the one you mention.

Certainly see him, and listen to what he has to say. If you feel comfortable with him, that is important. Just ask how many patients he sees with ACM and tethered cord. and absolutely get at ther very least an MRI of the cervical spine, which will show chiari. A whole brain MRI and full spine series would be best.

As for tethered cord, as I said before (I think), sometimes I don't think it shows up on the MRIs at all and the diagnosis is clinical. This seems to be a relatively new development in the whole chiari treatment, based on what I have been reading for the past 2 1/2 years.

Good luck!
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you are welcome

Postby brianfsmom » Wed Aug 08, 2007 7:41 am

sorry .. i hit reply twice and double posted :P
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Postby angie7 » Wed Aug 08, 2007 12:17 pm

You are very welcome. I have never heard of the doctor you mentioned either but I wont say that he isnt any good. Like brianfsmom said, you need to find out how many ACM, SM, and TCS patients he sees or has seen. Personally, I dont think it will be very high b/c most NS never see a patient with ACM and/or SM in their life. I would really consider finding a specialist for your daughter. She is so young that right now is the best chance to get her the best help. Like I said before, Dr Frim is in Chicago, that is a way for you to go, but the closest I can think of other then Dr Oro in Colorado but I am not 100% he sees peds but it would be worth a shot.

I would definately get a brain and cervical MRI done as soon as possible to rule out ACM or another syrinx. But I will tell you that ACM 0 is something that is seen in many children and most docs (except specialists) will not dx a herniation that isnt greater then 5mm. I had ACM 0 when I was first dx at 24 years old. I was told by the #1 NS locally that I didnt have ACM and there wasnt anything they could do for me until I was unable to walk. I found a specialist (Dr Oro) who dx me with ACM 0 (I had 0mm herniation) and they did a CINE MRI (measures csf flow in real time) and found that I had minimal to no flow of csf to my brain. Bascially if I would have listened to the other doctor, I would probably be dead or had a stroke by now b/c your brain cant live without csf flow. I had surgery the following month to restore csf flow back to my brain.

This is just the very short story of why I push people to seek out a specialist. If I wouldnt have, I dont think I would be here typing this today.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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