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Quick question.

Postby KyliesSis » Mon Mar 10, 2008 8:45 pm

Hey guys,
I've been asking in the Pediatrics forum some questions, but I'm not getting any answers. I was just wondering if a child with Syringomyelia could have eye pain? Is that a symptom of CM or SM? Also, she's started saying that she has funny feelings in her legs. I'm not sure whether she's being honest or not. Ever since we found out, she's been getting more attention (if that's possible), and I'm wondering if she's only saying this because it gets her more attention. I'm not sure that's the case, but she has heard us talking about the symptoms.


-Ky's Sis
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 KyliesSis » Mon Mar 10, 2008 9:42 pm

Ps. She also complains about a burning in the feet. I dont know whether that is related to the SM
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 Janice » Tue Mar 11, 2008 8:50 am

Good Morning,

Both symptoms can be related to SM. How old is Kylie again?

I would listen to her complaints of all symptoms and then report them to her physician so she can be referred (if needed) for exam and/or treatment.

With this disease, attention is a good thing, especially for someone so young. Lack of attention can lead to severe depression if you feel that you're suffering alone.

Being there for her is the best gift your family can give her. Paying attention to her symptoms and advocating for her is just as important also.

Take care, you're not alone. There are other caregivers here and everyone is willing to help each other through these times. You and your family are 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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Postby KyliesSis » Tue Mar 11, 2008 12:33 pm

Hello,

Thank you for responding so quickly. It seems that you are always there when we need you. Kylie is five years old. Before we even knew about SM, she had a lot of attention. She's the youngest one, and then it's me at 18, and my brother at 21. So, she's always had ours and our parents full attention. But now, we are being even more attentive, if thats possible.

Not only that, but she has also lost control of her bladder twice. This never happened before.

Thank you for listening, and I will keep you in my prayers.

-Ky's Sis
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 Janice » Tue Mar 11, 2008 1:17 pm

I would definitely report the bladder incontinence, even if it was only twice. Some symptoms come and go, we'll pray this is one of those symptoms that isn't always there.

I have SM and have issues with bladder incontinence and I'm 44.

I also had a sister that came along later in life. She got a lot of attention from everyone (6 siblings) and she was definitely spoiled so I understand.

You'll get use to the different symptoms and whether they are permanent or come and go. Once you do get a handle on everything, you'll be able to determine times when she's just looking for attention.

This disease can be draining on everyone. I try to keep this in mind, especially because my husband tries to take on everything alone. I have to make sure to get my kids involved sometimes in order to give him a break.

It seems, for me, things change so much from day to day or minute to minute. I never know what to expect or which of the "come and go" symptoms will just appear out of nowhere and leave just as fast. I have learned that this disease is also very unforgiving. Overdoing your limitations can add on extra difficulties, mostly for me, excess fatigue/feeling of exhaustion and all I want to do is sleep or at least rest.

Whenever you have questions, I'm here, either on the forum or you can PM me.

Take care and thanks for the 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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eye pain

Postby Sara » Tue Mar 11, 2008 4:42 pm

Hi-
What is the specific diagnosis? does she have Chiari and where is the syrinx located? you can have visual disturbances and eye pain if you have involvement of cranial nerves, usually associated with Chiari. It will require a careful assessment by a neuro opthamologist. Eye pain is often associated with sinus infections and colds though also. I have twin daughters who were dx at age 2 and are now 13. It is easy to forget that they also get other issues that have nothing to do with the CM/SM.

The burning in the feel and leg pain could absolutely be a symptom, again it depends on the location and extent of the syrinx and associated disorders. Do you have a good doctor proving evaluations and neuro checks?

You always want to take the child seriously but it is important as caregivers that we balance our concern to the child. If you over react, they will sense that. The key is to maintain an interested but not overly worried response when she offers complaints- sometimes easier said than done!
Sara
www.caringbridge.org/visit/hopeandholly
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Postby KyliesSis » Tue Mar 11, 2008 5:15 pm

Janice - Thanks so much for the reply. I'm worried about the bladder problems that she had, but according to your definition it might be a come and go type of thing. We do have an appointment with a neurosurgeon tomorrow, at SickKids in Toronto, so we'll see what he has to say. Next week we have an appointment with Dr. Frim, and to be honest, that's the one I'm really looking forward to because his name has come up quite a few times.

Sara - Kylie was diagnosed with Syringomyelia. Her lab results say this:
'There is mild increased signal in the central aspect of the cord extending between C3-4 level to about the C6-7. Furthermore, in the thoracic spine, there is a similar signal intensity in the central aspect of the cord extending between the T3-4 level throught the T12 level. However, the signal is noted to be most prominent at the T10-11 level wherein it measures between 2 to 3 mm transversely.'

The first neurosurgeon that we saw, told us that she was okay, and that they would see her in six months, and scheduled an appointment. She said that they wouldn't do another MRI for at least six months. So basically we would get one MRI done a year, and see her twice a year until she displays symptoms. My problem is that she is displaying symptoms, and that's how we found out she had SM. But, what if the SM is already increasing in size? What do we do?

Thanks for listening.
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 angie7 » Tue Mar 11, 2008 5:45 pm

ITA with everything Janice has said!

And you need to seek a specialist for her. If she is showing symptoms and no cause for her syrinx has been found, someone with more knowledge in SM needs to examine her. The best ped SM experts are Dr Frim in Chicago and Dr Menezes in Iowa. I would place a call ASAP.
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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Postby Janice » Tue Mar 11, 2008 7:57 pm

Dr. Frim is a very good choice. The outcome may be to monitor the syrinx and treat any current symptoms but, for my child, I would want to hear that from a subject matter expert like Dr. Frim.

My suggestion would be to create a journal (if you haven't already), chart her symptoms and include the date of occurence. This way, whenever you visit any doctor you already have the information documented.

Take care and keep us posted. Good luck with seeing Dr. Frim.
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 » Thu Mar 13, 2008 10:43 pm

Hey guys,

We had our appointment at SickKids hospital yesterday, and from what they see, they say that she's very healthy, and really well. The Neurosurgeon said that he wished the pediatrician had not done an MRI, just because it sometimes scares the parents too much. He said he had seen hundreds of SM cases, where children show no symptoms and live with SM all their lives.

The part that worries me is when I asked him when we should bring her in, he said in two years or when she starts displaying symptoms. I asked him to define symptoms, and he said when she can't walk. I rephrased my question, and said, 'So I should bring her in if she's paralysed?' And, he said, pretty much yes. So I'm little uncomfortable with that answer.

The good news is that he seemed positive that this was a birth 'difference' (he said he didn't want to call it a defect). From what my mom has read, a syrinx that has been there since birth, progresses at a much slower pace.

I'm not sure if I am comfortable with what he said. It seems to me that he downplayed her disease, like what she has is so common, and will not affect her in any way. When we told him about her symptoms of burning in her legs, and funny feelings, he said that they were nothing. To be fair, the neurosurgeon who checked her out did many tests and deemed her perfectly fine. (The head of division then came in and confirmed what the Dr. said)

If anyone has been in a similar situation, please let me know. The front page of our newspaper is of a woman who kept telling Dr's that she was sick, and they told her she was perfectly fine(I live in Canada). When she went to the US, they diagnosed her with ovarian cancer. This worries me.

God Bless
-Ky's Sis
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 lainiek » Fri Mar 14, 2008 11:54 am

Hi Kylie's sis,

Gosh, I would not go back to that NS. I'm glad you're going to see Dr. Frim. From what I've heard, I would trust his opinion a lot more. Also, it's good that you're seeing Dr. Frim to rule out a Chiari malformation.

Also, after reading your posts, I wonder if Kylie could have an occult tight filum terminale (tethered cord). The filum terminale is a band of tissue that attaches the spinal cord to the tailbone. The filum is supposed to act like a rubber band that allows the spinal cord to move freely with bending and stretching, but if it's too tight, it will restrict movement in the cord, causing it to be "tethered" in place.

Traditionally, if the filum terminale is tight, it will pull the cord down lower than it's supposed to be -- like around the L3 to L4 vertebrae. But new studies have shown that patients can have a tight filum terminale with the cord ending in the normal position of around L1 to L2. This is why it's called "occult" (or hidden) because it looks normal on an MRI.

It's a kind of a controversial diagnosis, but there has been more published about it appearing in children with urinary incontinence problems -- you mentioned that this has happened a couple of times with her recently. Also, the fact that there is a syrinx so low, and that she has this burning feeling in her feet ...

I'm not sure how open Dr. Frim is to the occult tight filum theory -- but I'm sure he knows about it.

The Chiari Institute in New York is doing the most with occult tethered cord. They've done over 400 TC surgeries in the past two years. They have a great video that discusses the topic, but unfortunately, they only have it available at their clinic right now. They are supposed to be publishing research soon.

There is an NS in Vancouver that is doing a study on occult tethered cord and urinary incontinence in children -- his name is Dr. Paul Steinbok. Since, you're Canadian, maybe he can be of more help than your present NS.

Here is a paper he published:

http://www.aans.org/education/journal/n ... 5-1214.pdf

And here is Dr. Steinbok's contact info:
http://www.surgery.ubc.ca/faculty/psteinbok.html

By the way, I found Dr. Steinbok's info from Caroline's (cash71 on the ASAP board) blog:

http://chiariandsyringomyeliaincanada.blogspot.com

It's very informative. :)

Best wishes to you and Kylie.

Lainiek
SM T11 to L1, tethered cord surgery on 1/29/08, Ehlers Danlos Syndrome
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Postby KyliesSis » Thu Mar 20, 2008 7:27 pm

Just a quick update for you guys.

First, I just want to thank you for recommending Dr. Frim. He is amazing. And, if you have a child with SM, I HIGHLY recommend him. Our appointment with him was at 2:00 p.m. He had an emergency surgery, and his secretary gave us some options. We could either reschedule, see another doctor, or we could wait around and see him. Seeing as we are from Canada, and it takes us about six hours to get there, we decided to wait it out. We were afraid that he wouldn't see us, because he had about six other patients before us. He came back around 4 o'clock, and saw every single patient. Not only that, but he gave us his undivided attention, there wasn't a rush, and answered all of our questions. While we were waiting, there was another doctor looking at her, and he told us what he thought was wrong. He was right. Not only was his staff welcoming, and extremely caring, but they took their time, and listened to every word. They were very patient, and very knowledgable. Again, I highly recommend seeing him. It is worth every penny, and every second.


After seeing Dr. Frim, it turns out that Kylie has Spina Bifida, and Tethered Cord Syndrome, as well as SM, Scoliosis and Kyphosis. He told us that we should do a surgery in the next couple of months.


Thanks for listening, and for the advice. You have been extremely helpful.

God Bless,
Ky's Sis
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 specialmomx2 » Thu Mar 20, 2008 8:00 pm

I am so so glad to read your update. I could not believe how that first NS downplayed the child's symptoms. If he could only know what SM feels like, he would never do that.

Good luck to You and Kylie for the surgery. She is in very good hands now.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby Janice » Fri Mar 21, 2008 9:09 am

Good Morning,

That is *terrific* news!!! :D It's amazing how different opinions are when you choose to go to an expert. The other NS's were so sure nothing was wrong, this was normal and all she needed was follow-up MRI's, or wait until she was paralyzed.

I'm very happy that your family persued this issue and with good reason. There are many of us who put our trust in doctors and after receiving input from the second doctor, that was pretty much consistent with the first, you could have stopped there. However, you didn't and now you have a thorough diagnosis and Kylie can get the help she needs to get better.

She is blessed to have such a wonderful, supportive and caring family. :)

Thanks for the update.

Take care and you all are 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

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby Vagreeneys » Sun Mar 23, 2008 11:22 pm

Hi,
Here is a sympthom that i have a vibration in my legs and on my side. if you have a cell phone that vibrates it up to kylie's legs and ask her if that is what she feels. Not sure what to tell you to do after that I am having the same problems with my NS but I did get a name of a NS that specializes in sm that is a partner with mine so will have to switch to him. Good luck and try the cell phone thing might be what she is feeling is freaky thing to feel on your legs
SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
Rhuematoid Arthiritis
Neck Fusion C-3 to C-6
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