looking for some info/advise on Syringomyelia UPDATED!!

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

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looking for some info/advise on Syringomyelia UPDATED!!

Postby DanielleC » Sat Jan 30, 2010 3:53 pm

UPDATE-----We now have some more answers. After having the MRI w/ contrast and the flow study, they found an absence of CSF pulsation at the cervicomedullary junction/ foramen magnum. My NS is recommending that we remove the "web" that is blocking this flow. He is sending my son for an EMG next week and a urodynamic test. We are going to see another NS next week to see what they think.

Has anyone had this surgery done to remove the web and restore the CSF flow? How was your outcome? Has anyone heard of the web growing back?

THNAKS AGAIN!!!





Hi....My 23 month old son was just diagnosed with Syringomyelia WITHOUT chiari malformation. I am finding it difficult to find information dealing with just syringomyelia without chiari,tethered cord or injury. We do not know why he has this... our neurologist is sending us to a ped neurosurgeon-- he believes that he will need a shunt.
I am trying to get a few opinions from different ped neurosurgeons in the NY metro area.

I am hoping that other parents in the area might have some advise or recommendation on surgeons that they have seen or used who are familiar with this.

I appreciate any info!!!
Thanks!
Danielle
Last edited by DanielleC on Wed Mar 03, 2010 4:42 pm, edited 1 time in total.
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Re: looking for some info/advise on Syringomyelia

Postby Mayzoo » Sat Jan 30, 2010 9:03 pm

My daughter has both and more, but there are parents on here whose children have just the SM. Hope you find all the information you need.
My Sweetie DOB Feb 2002, DXs: ACM1, AC, SM, Autism, SID, Torticollis, Bi-lateral strabismus. More than the sum of her diagnosis'. Reminds me of Elmo :D
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Re: looking for some info/advise on Syringomyelia

Postby Lipper5 » Sat Jan 30, 2010 9:52 pm

My son had decompression surgery just shy of his 2nd birthday. That was suppose to help with the syrinx. Now 2 years later we are going back to the OR to do a shunt. He is actually going on Wednesday. But I can tell you that one Dr in Philadelphia did not think my son had a chiari. He said he did agree there was a syringomyelia but said to wait for more symptoms. Then 2 more said they saw the chiaris and one said it was a chiari 0 and said some doctors do not believe in this. But the final Dr believed that there was a type 1 Chiari and wanted to try the decompression first.
So if I were you I would just maybe get a 2nd and 3rd and even a 4th opinion on this matter. Good luck and God bless. We have been dealing with this for many years and it is not easy at all.


Krista
Mom of 2 boys with Chiari 1 malformation and one with Syringomyelia
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Re: looking for some info/advise on Syringomyelia

Postby DanielleC » Sun Jan 31, 2010 12:54 am

Thank you--Mayzoo and Krista.
I am trying to see as many surgeons as I can. We already have an appointment on Monday with Dr. Goodrich @ Montefiore and Tuesday with Dr. Tobias at Maria Ferrari. Also DR. Wisoff @ NYU was also recommended. I will try to get in to see him as well. I am also planning on sending all of his information to the Chiari institute. I guess I will try all the places in the NY area--see what they have to say.
I am curious to see what they think the cause is. According to his neurologist-- he was just born with it.

Thanks again for getting back to me-- I am so glad there are sites like this for parents!

Krista-- good luck on Wednesday- your son will be in my prayers.

Danielle
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Re: looking for some info/advise on Syringomyelia

Postby Lipper5 » Sun Jan 31, 2010 8:06 am

What area are you from? Maybe I can give some names if you live close. We travel to Penn State Hershey Medical to see Dr. Iantosca. Good luck with all of your appointments. We were also told he was just born with it. Until we found Dr. Iantosca,who explained his Chiari was the reason for this.

Krista
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Re: looking for some info/advise on Syringomyelia

Postby DanielleC » Sun Jan 31, 2010 1:49 pm

We are in the NYC city area- in Westchester county. We will travel to see doctors who specialize in SM. I would love any names you could provide me with.
THANKS!!!
Danielle
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Re: looking for some info/advise on Syringomyelia

Postby razzle » Sun Jan 31, 2010 2:48 pm

here is a list of patient recommned drs in NY .
. Guy M. McKhann
Columbia-Presbyterian Medical Center
710 West 168 Street
New York, New York 10032
(212) 305-0052
gm317@columbia.edu

Dr. Neil A. Feldstein
Pediatric Neurosurgeon
Columbia-Presbyterian
Medical Center
New York City

*****THE CHIARI INSTITUTE*****

*Dr. Paolo Bolognese
865 Northern Boulevard
Great Neck, NY 11021
Phone: (516) 570-4400



Dr. Vallo Benjamin
NYU Medical Center
530 First Avenue, Neurosurgery,
New York, NY, 10016
(212) 263-5013

Dr. Deborah Friedman
Neuro-opthalmologist
475 Irving Avenue
Syracuse
(ph) 315.464.3937

Dr. Charles Hodge
University Hospital,
Syracuse, NY 13204

Scialabba, Fred P MD
North Country Neurosurgical (518) 793-8160 454 Glen St # 2
Glens Falls, NY 12801
Dr. Nancy Havernick
Pediatric Neurologist
5850 Heritage Landing Dr.
East Syracuse
(ph) 315.446.2985

Dr. Jeffrey Wisoff
Neurosurgeon
New York University Medical Center
New York City

Dr. Neil A. Feldstein HAS BEEN USED ALOT
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: looking for some info/advise on Syringomyelia

Postby DanielleC » Sun Jan 31, 2010 4:11 pm

Thanks for this list!!! Wisoff and Feldstein were actually on my list to call monday morning. They come recommended from people I know in the city. I am glad to see them on your list. The Chiari institute is another place I would like to get into. It does seem like a bit of a process to get in there, so I am guessing it will be a while before he can get an appointment there.

- Thanks again.
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Re: looking for some info/advise on Syringomyelia

Postby Lipper5 » Sun Jan 31, 2010 6:33 pm

Well Dr. Mark Iantossca is really familiar as well. But he is in Hershey PA. So if you have no luck with them you can let me know and I can give you the information. Good Luck this week as well!

Krista
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Re: looking for some info/advise on Syringomyelia

Postby DanielleC » Tue Feb 02, 2010 9:43 pm

We saw a nuerosurgeon yesterday and another one today. The both want to do another MRI but this time with contrat... R/O mass.
The one I saw today also wants to do a CSF flow test??? I thought I understood it when he was telling me about it, but now when I try to recall it-- I am a little confussed...
We have other appointments scheduled @ NYU and COLUMBIA next week-- but I am going to move it back until we get the results of the MRI with contrast. Once I have a copy of the new MRI-- then I will send it to the Chiari Institute.
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Re: looking for some info/advise on Syringomyelia

Postby lsobczak » Wed Feb 03, 2010 6:31 am

hello, both my daughters, ages 4 and 6 have syringomyelia without chiari. they were both diagnosed when they were 2 years old. we see Dr. Frim in Chicago at University of Chicago. He is great and all the families really like him. one daughter has not had any surgery and my other daughter did have a syringosubaracnoid shunt placed in her spinal cord to collapse the large syrinx. there is no cause for their syrinx either. there is not as much info out there on just syringomyelia but ASAp is a great website and the other parents. When you find a doctor you will meet other families then you will feel more connected and have those parents to talk with as well. keep us posted on your journey.
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Re: looking for some info/advise on Syringomyelia

Postby jupes » Wed Feb 03, 2010 12:33 pm

Hi Danielle,

My DD has SM too. Her syrinx is small and symptoms mild so is just being monitored. Her SM was first thought to have no cause but after getting another opinion from an expert she was found to have posterior fossa crowding (chiari 0). Great that you are seeking other opinions. You will have peace and will "know" when you have found the right Doctor. Trust your instincts and keep educating yourself! A CSF flow test or CINE MRI is recommended by chiari experts and is a way to help diagnose the "borderline" chiari cases! Make sure they do the CINE MRI too so the MRI doesn't have to be repeated again! Good luck! (((HUGS)))

Hi Isobczak!

We are Frim patients too! He is Great! I see you have 2 children with SM. I have met others who have multiple children with chiari but not siblings diagnoses with just SM! I was thinking the chiari related SM had more of a genetic connection than the idiopathic SM. How were your kids diagnosed and what symptoms did they have? Besides my 14 yr old with SM, I have a 7 yr old with HA's and some other mild intermittent symptoms and may have her checked for this too! I think they will only do a brain MRI at this point but now I wonder if we should do a spinal too to check for a syrinx? It is stressful having one child with this and can't imagine having to deal with 2 or more children! It is so hard to see our kids suffer! Hope your children are doing better!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: looking for some info/advise on Syringomyelia

Postby DanielleC » Wed Feb 03, 2010 9:47 pm

Thank you both for getting back to me.
I have a question for Isobczak--- what sysmptons did your children have that they were diagnoised at 2 years old?
-Danielle
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Re: looking for some info/advise on Syringomyelia

Postby lsobczak » Sun Feb 07, 2010 7:50 pm

Hi Danielle and Julie,

My girls both had pain as their first symptom. my 6 year old had back pain and my 4 year old had leg and foot pain. they were both age two when this started. they still have pain but my older daughter did have a syringosubaracnoid shunt placed around T11 to collapse the syrinx so it stopped the progression but she still has back pain and headaches almost every day, however, i am sure that it would be much worse if she did not have the surgery so we are grateful. my 4 year old has not had surgery and her syrinx is T7-L1. she takes neurontin for the pain and that helps. however, because they are young and growing every time they have a growth spurt the spinal cord grows or streches and they have symptoms. we figured this out because every 3-5 months they were getting increased pain and we would do mri and the syrinx would have grown a bit and they were measured and had grown almost 1 inch during those months. although it is hard to know that they will have many more growth spurts it gives me some relief to know this so i don't panic every time they start wetting their pants during the day and night and having more pain. it usually does pass within a few weeks and they feel better again. so you will get to know your child and their bodies. you will most definately know when something is really wrong. all these parents do.

You are right Julie, there are not many syblings with just syringomyelia. Dr Frim has never had any and neither has the other specialst i met at other hospitals. we have no history on either side of our families for this so it is a mystery. it does leave alot of questions but i am at the point that i think some tings just are and they can't be explained but it took my awhile to get to that point.

keep me posted
lisa
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Re: looking for some info/advise on Syringomyelia

Postby sara b » Mon Feb 08, 2010 12:06 pm

We were just at a dinner dance where Dr. Vez from Philadelphia was a guest speaker. He said " If anyone wants to put a shunt in for syringomyelia Run Like HELL". I just thought I would share this with you since I also have a 10 yr old daughter with syringomyelia.

She started with back pain. Been to 4 neurosurgeons one said it was nothing, one said it was syringo only, one said she also had chiari 1 and the syringo was secondary to Tethered cord syndrome the forth agrees with the third. We have had her watched for changes and for 1 years no changes. This last check up nothing changed other than her having pain behind her eyes. Syrinx the same size chiari 3mm. They sent her to an opthamologist and they say she has glaucoma. Off to Wills Eye this Wednesday.

If we had had surgery 2 years ago would she now have the problems with her eyes. We do not know, there are no answers and all doctors have different opioions. Just to let you know she is currently a patient on The Chiari Institute, and has been for almost 2 years.

Sara
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