daughter 13 several opinions

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

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daughter 13 several opinions

Postby Janet Davis » Mon May 26, 2008 1:04 am

Hi, my daughter had been having symptoms which I thought were growing pains, skating muscle soreness etc. Pediatric MD thought restless legs syndrome. Children's in Boston diagnosed via MRI with synringomyelitis 2 wks ago...put her on Neurontin. Dtr. cannot take NSAID's! Spinal inflammation on MRI, syrinx, 2 "cracked" disks...and yet pedineurosurg at UMMC told her 2 days ago that he could not help. Said "find a neuro". We had only seen pediatrics and neuro who does headaches - nowhere to go now! No MD will take a new patient in Mass. - overbooked. Yet, my daughter was told - needs to follow with neuro and "OK TO DO ANYTHING SHE WANTS" when other MD's have said NO - too much risk - Neurontin helps leg symptoms, nothing else. Raising the dosage produced very harsh side effects. Now, we have no neuro who deals with pedi spines, daughter is planning to skate this week and yet, she is still having sudden twitches, restless and tingling legs, numbness on sides of legs, low back pain and also, will reach out with arms and arms shake and twitch! Yet, neurosurg said there is nothing he can do, gave us no referral to anyone, gave child OK to activities:

Need help! Does anyone know who might help in Boston? We live far outside of Boston, but I will take her anywhere. Is it possible to have this spinal fluid/cyst/pain/symptoms and neurosurg telling us he is not sure she has syringomyelositis, when everyone else in her care knows? I must find a pedi neurologist to follow her and do another MRI in 6 months. She believes she is fine! I, mom, have a bad feeling about last advice.

Please help - anyone who may know! Thank you!
Janet Davis
 
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Re: daughter 13 several opinions

Postby Amy Joe » Mon May 26, 2008 7:15 am

My recommendation would be to get in to see Dr Mike Huirsh @ Umass in Worcester. He is the Chief Pedi Surgeon. He is not a NS but he would consult and be involved in ALL aspects of your daughters care. He directs ALL surgery aspects inregards to children. 508-344-1000.............

He saved my daughters life and has a huge staff with EVERY specialist working under him. I can not speak high enough of his staff and his bedside manners.

My prayers are with you and your daughter.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Re: daughter 13 several opinions

Postby brianfsmom » Tue May 27, 2008 8:22 am

Hm. That makes no sense to me. Why diagnose her with something and then tell you that she is fine to go about activities? I don't understand noone wanting to treat her, I've not heard of that in pediatrics with a first time diagnosis. Maybe because SM in the absence of chiari can be tricky and little understood? Has she had a fall where she might have injured her back, while skating?

In any event, don't let it go. You don't say who the doctor is in Mass, but have you tried Dr. Scott? I know he is in Boston.

Other big names are Frim in Chicago, Carson in Maryland, and there are several in NYC, and also the Chiari Institute on LI. You need to be sure you find someone with experience with syringomyelia, if that's what it is. If you can't get her in with a neurologist, bypass that step and go straight to neurosurgeon. This sounds more like you'd need a surgeon's opinion anyway. Anyone can order MRIs, even a pediatrician, and then you would have films to take to a doctor.

Good luck! I hope your daughter does well.
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Re: daughter 13 several opinions

Postby Janice » Tue May 27, 2008 8:54 am

Hi Janet and Welcome! :)

I agree, you need to get your daughter to an expert in Syringomyelia. Also, as Brianfsmom stated, most surgeons won't operate on a syrinx because it is tricky and little is understood. This especially applies to a syrinx in the Thoracic spine.

Where, in the spine, is her syrinx located? Even if there is no treatment, other than a conservative method, for the syrinx, I would think she would need a treatment plan for the cracked discs (maybe surgery). The inflammation might be due to the cracked discs. Regardless, these are both significant diagnoses' that require some type of medical intervention.

The inflammation sounds like it could be from a fall or heavy strain to the muscles. Skating can be a very strenuos activity. I use to skate competitively and in performances, there can be major risk for injury. In this event, I would agree that the skating should be limited or removed until you receive further direction for an expert. Being seen by a NS does not mean the same as taking your daughter to a NS with expert knowledge and training in syringomyelia.

An expert would look for the cause of her syrinx. It's hard to say if the cracked discs caused the syrinx to form but it can definitely be a possibility. An expert would know for sure. Certainty is required due to numerous underlying conditions that could cause a syrinx (un-related to cracked discs).

I pray you are able to get your daughter to an expert in syringomyelia so you can be sure she is recieving the best care.

Take care, you and your daughter are both 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

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