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Postby KyliesSis » Tue Apr 01, 2008 4:25 pm

We went to my sister's pediatrician, and he told us today that based on what the radiologist said, she doesn't have tethered cord syndrome. The thing is, that Dr. Frim already told us that she did, and she also has spina bifida. I believe Dr. Frim, of course, but how can the doctors deny her tethered cord? Is it possible that they didn't see it?

I'm sure some of you have seen your MRIs, what can I look for in it? I've tried online, but I can't get a clear description. If you could let me know, that would be great. I feel so confused right now.

Dr. Frim only saw the Thoracic and Cervical MRI, and asked for the Lumbar Sacral, and as a result said she had Tethered Cord. Is it possible that she doesn't? Or, are the doctors in Canada just denying it so they don't look bad?

Thanks for the help guys!
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby georgiagal » Tue Apr 01, 2008 4:51 pm

Hi there! As soon as we hear something from Dr. Oro, I might be able to help. I suspect he has tc, but since we're not sure, I'm very hesitant to share MRI pics.

Surely, someone that has been dx with tc can post a copy of their mri for us to compare.

GG
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Postby cash71 » Tue Apr 01, 2008 7:34 pm

Are you talking Occult tethered cord or tethered cord?

thanks,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby lainiek » Tue Apr 01, 2008 8:10 pm

Hi Kyliesis,

I'm guessing as Carline just mentioned above that Dr., Frim diagnosed Kylie with occult tethered cord syndrome.

I mentioned I thought maybe Kylie could have this in your previous post:

http://www.asap.org/forum/viewtopic.php?t=3691

Do you remember if Dr. Frim called it an occult tethered cord or occult tight filum terminale? Outside of a few the CM/SM experts in the US (especially the Chairi Institute in New York) and one in Spain -- there are not many surgeons that believe in this occult tethered cord theory -- it's still a very new theory, and there is not a lot of published research out there about it -- but there is some -- especially with children.

Here is an abstract to one paper:
http://content.karger.com/ProdukteDB/pr ... ?Doi=78908

Hang in there,
Lainiek
SM T11 to L1, tethered cord surgery on 1/29/08, Ehlers Danlos Syndrome
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Postby KyliesSis » Tue Apr 01, 2008 10:17 pm

Thanks for responding so quickly guys.

Dr. Frim never told me what exactly it was. He wrote it on the back of his business card. He wrote Tethered Cord Syndrome. I don't know if that narrows it down, but that's all I know.

I sent him the MRI today, along with an email. He responded that he was going to have a look at it, and let me know.

Right now, I just want to know if there is something specific that will let me know right away if she has it or not. I'm really confused because the Canadian doctor made it seem as if it was a for sure thing, but then again, that's what they said last time too.

Thanks for your time
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby cash71 » Wed Apr 02, 2008 11:08 am

If the radiologist is saying no tethered cord then it is probably OTC. This means Kylies spinal cord ends at the "right" place L1 or L2 but she has symptoms of TC. OTC is a tough sell in Canada. I know for sure no NS will acknowledge it in adults but I think there might be more leeway in children.

http://clinicaltrials.gov/ct/show/NCT00 ... 9EC4031E3B This is the study that Dr. Steinbok is doing at UBC regarding OTC in children. You may want to contact him. I know for sure that he is open to the idea of OTC in children.

HTH,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Janice » Wed Apr 02, 2008 11:10 am

Well, I have read that some are diagnosed based on the length of the spinal cord. If the spinal extends pass L1, then there could be a dx of Tethered Cord.

That said, I guess you can look at the MRI of the lumbar spine to see how far the spinal cord extends.

Also, there are doctors who have a specific list of symptoms and if the patient presents with these symptoms then the result would be Tethered Cord Syndrome.

I believe that there are other ways but I have also read that there are many doctors who do not believe in this dx. Even in the states, there are many who have only been dx'd with TCS after a consult with a true CM/SM specialist.

Prehaps Dr. Oro suspected TCS based on Kylie's symptoms and wanted the lumbar MRI in order to get a conclusive finding. Now, after reading the film you recently sent, he can determine if this is an actual diagnosis.

Take care and I would go with Dr. Oro's diagnosis also.
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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Postby KyliesSis » Wed Apr 02, 2008 9:11 pm

Hey guys,

Again, thank you for the replies. I went on the link above, and checked it out. It explains what Dr. Frim said. From his explanation, and the explanation on the website, it seems that it was occult tethered cord. He did mention the spinal cord was attached to the filum. I'm not sure exactly how he described it, but I can assure you it was OTCS he was talking about.

She had bladder incontinence for about 2 weeks (daily) but it's been 8 days since she did it last. Now she complains frequently that she is tired, and falls asleep very easily. (Usually, we have to fight with her to put her to bed) Now, we are more confused than ever. If the doctor's in Canada don't know about this tethered cord, how will they treat it?

Now, I'm just waiting on Dr. Frim. He told me that he would reply soon. She's short for her age, and my brother is 6'2 and I'm 5'9. We've always been the tall kids in our classes. Maybe, this is why she is shorter than the rest.
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby ke4uzj » Wed Apr 02, 2008 9:39 pm

Sis ,
I am so happy to hear you are taking such great care and concern for your little sister. I hope she gets taken care of real soon, and I will keep her in my prayers . I am so very sorry this little Angel is going through this . I hope she knows how much her big sis loves her!!!!
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
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Postby Janice » Thu Apr 03, 2008 8:56 am

Have you checked with any of the ped NS's in your area to see if any are open to the dx of OTCS?

It may be that they aren't open to the dx in adults but not necessarily children. You hear a lot of this dx in children. When you speak with Dr. Frim, see if he is aware of a surgeon you can take Kylie to.

It does seem that the first step would be the OTCS surgery. If she gets relief and recovery of any dysfunction and pain, she can begin therapy and see what remains and if the syrinx shrinks.

You all are still in my thoughts and prayers. Let Kylie know there are so many here who are praying for her and we know she will have a positive outcome.

You are such a strong and loving advocate for your sister. The level of your compassion and strength is truly amazing.

Take care and hang in there,
Last edited by Janice on Thu Apr 03, 2008 9:54 am, edited 1 time in total.
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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Postby kiminfla » Thu Apr 03, 2008 9:12 am

Sis, Kylie is blessed indeed to have such caring family advocating for her! Dr. Frim has an excellent reputation and I'm sure he'll have a treatment plan that can hopefully bring Kylie much symptom relief. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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