MRI show syrinx!! Info please

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

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MRI show syrinx!! Info please

Postby samsmom » Mon May 19, 2008 9:48 am

Hi Everybody, Let me start by saying how thankful I am to have found your site. About two weeks ago I took my 12 yr old son to the ped because he was having pain in the back of his head everytime he would bend over to pick something up and stand up again. He would also have occasional spells of blurred vision. She ordered an MRI. We had the MRI and she called us with the results saying that he has a syrinx at his T1-T5. I had never heard of this so it meant nothing but I could hear in her voice she was concerned and this might be a bit serious. We are scheduled to see a ped NS but they couldn't get us in until June 11th!!!! This seems so far away. So, I went and got a copy of his MRI and I have a few questions for those of you who have been here before.

The MRI report says that the syrinx measures 3mm max in anterior to posterior in diameter. Is this length or width? Also it says that multiple dilated veins are noted inferior to this level and adjacent to the syrinx that are only partially visualized. What is the significance of this? It also states that there may be a small component of non-distended syrinx in the c-spine. What does that mean? I should also mention that CM was not mentioned anywhere in the report. I can not remember a trauma to the back. It would take a big one right?

Also, I think his symptoms are getting worse. He gets dizzy all of a sudden and has to grab something or sit down. His back has been hurting and yesterday at church he could not lean back on the pew because it hurt his back and neck too much. Today he is home from school saying his stomach hurts, he feels like he is going to throw up and his body is sore all over. His aunts family is passing around the flu so I don't know if he could have gotten that or this is related to the syrinx. I would love some advice and information, encouragement! Sam is a very active kid who has won a state wrestling title and loves football. His dad coaches varsity football and he moved down to the middle school to coach Sam's team. I know sports are not everything but it is his passion. So I would love to hear how you handled this also. What are some other sports allowed? Thank you so much for being here! You have helped me pass the last few days with some sanity. Kimberly
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Re: MRI show syrinx!! Info please

Postby Karen Phillips » Mon May 19, 2008 10:49 am

Hi,
My 7 year old has a syrinx .I also was caught off guard by this .Zach also had no trauma ,but he did have cm .He had all of the symptoms your son has .I don't know much about the mri measurements but if you have them on a cd you can upload them on photobucket and post links here there are alot of people here who have lots of info.Zach had surgery on March 12th and is doing fine now.If i were you I would limit the sports for now so he does not hurt his spine.Plus maybe he needs something for his headaches just until he can get to the NS.I feel your pain I know how hard this is the not knowing.The one thing I can say is the surgery was not as bad as i thought and Zach bounced right back and Iam glad we done it.Please send me a pm if you have anymore questions .
Karen
Last edited by Karen Phillips on Tue May 27, 2008 10:37 pm, edited 1 time in total.
"I don't know what I have but it hurts"
7 yr old cm with syrinx
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Re: MRI show syrinx!! Info please

Postby Janice » Mon May 19, 2008 11:55 am

Hi Kimberly and Welcome! :)

I'm very sorry to hear that your young one has been dx'd with a syrinx (aka: SM/Syringomyelia). Did he have an MRI of brain in order to determine if he has CM? It sounds like he might have a very small syrinx in the cerival area but it wasn't significant or they couldn't really see enough to determine any measurements on it. It is possible that a different view would be easier to read and either give a definite dx or rule out a syrinx. It may have been fuzzy and harder to read. It's really hard to know from the wording used on the report.

I was dx'd 2 years ago (in August) and have experienced some of the same symptoms as Sam. I'll be 45 next month, however I do understand what you're going through. My syrinx is from T3 - T10. There are techniques, therapy or medications that can be used to help either relieve and decrease some of his symptoms. You need to speak with his doctor about what treatment he would suggest. Most doctors aren't really convinced that a small syrinx (1-5mm) truly causes symptoms. However, there are many here, including myself, that know different. Pain is one of the most debilitating symptoms of all.

Has Sam been playing football for a while? It's possible he could have sustained a hit with enough force to cause trauma to the spine. A true expert will be able to help determine the cause of his syrinx. CM is the cause of approximately 80% of all syrinxes, with approximately 1% being idiopathic or no known cause. I agree that maybe he should not participate in sports (particularly contact) until you speak with a NeuroSurgeon (NS) or Neurologist (NL) and get an ok.

I can't remember if your location was mentioned, however, if you do provide the state you live in, there are others here that can provide a list of experts in your area. You can also visit the main ASAP page at http://www.asap.org and find a section with a list of doctors. If you haven't already, there is also a wealth of information on both the asap main site and the chiari institute (which also has a selection of videos you can watch) that are extremely helpful. Researching to obtain as much information as you can will help you, as a caregiver, along your journey with Sam. Knowledge is power!!

I pray you get the best team of doctors for Sam, with a treatment plan that will provide him with the best possible outcome.

You are both in my thoughts and prayers. (((((hugs)))))

Take care,
Last edited by Janice on Tue May 20, 2008 9:13 pm, 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

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: MRI show syrinx!! Info please

Postby amr » Mon May 19, 2008 1:06 pm

Hi

My daughter (now aged 15) was diagnosed in January with SM and was operated on soon after (decompression). WE were told prior to surgery that all contact sports were out - we are in the UK and she is doing sport for one of her GCSE's so this caused a few headaches as she needs to do practical assessments in various sports!!!!. However at her follow up in April we asked about sports for the future and were told that once she has passed the six month mark following surgery she can participate in some sports (one of them being trampolining) as long as they are properly supervised The only ones she cannot do are Judo and Rugby (similar to American Football) and that is because she had to have a VP shunt inserted for Hydrocephalus a month after her original surgery.

I hope this helps I trust her neurosurgeon as he is a specialist in CM/SM and other related conditions and carries out surgery for these (and related conditions) on a weekly basis.

It IS a frightening path you are treading but keep strong and you will get the help you need

AM
Mum to Natalie diagnosed Jan 2008 (aged 14), ACM, Syringomyelia, Hydrocephalus. Decompression Jan 2008, VP shunt Feb 2008. Perfectly normal teenager and don't we know it!
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Re: MRI show syrinx!! Info please

Postby lttutrow » Mon May 19, 2008 9:24 pm

I have a 9 year old son, who much like your Sam, loves all kinds of sports...including football. However, we were told at our last appointment that it and wrestling should be avoided. Obviously, he was upset about this, but we immediately started talking about other choices like tennis or cross country. We also encouraged him that he can still be a part of the team by being a manager or trainer later in school. My son's syrinx is from c3-t5, or this is what the radiology report says. I can't wait to sit with his NS again for her to show me this because when I look at the MRI, it looks like c2-t9. I wish I could figure out the process for putting it here....but I'm not very computer savy. He also has a 10mm Chiari, and are waiting for his decompression surgery on June 27th. I know it seems like it takes FOREVER to actually get in to see the specialists, but the time is important too so that you have time to gather the questions you'll want to ask. In the meantime, I will be praying for he and your family that his symptoms improve!!
Lori
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Re: MRI show syrinx!! Info please

Postby brianfsmom » Tue May 20, 2008 7:08 pm

Hello

and I am sorry you had to find us.

First of all, I had the same thought as Janice - is it possible that a blow in football or wrestling could have injured the spine at that level? If this is the case, there is a hope that it might resolve with time.

On the other hand, alas, I would say at least for now, both sports should really be out.Oh, and 3mm is the width of the syrinx, they have described the length in terms of the vertebrae between which they saw the syrinx. It sounds to me like they will order MRIs in more detail, and of course, you should rule out chiari. 3mm is not terribly huge, but it is often said that it's not the size but the symptoms that determine the treatment. My son's was 4 or 5, and this was after decompression surgery. We don't get measurements any more, I just go by symptoms and the doctor's recommendations; otherwise I will lose my mind. Most of the time I just try to pretend he doesn't have it at all; and that the whole experience was just a bad dream.

As for sports, my son was just told no contact sports such as wrestling or tackle football. He is allowed to play baseball and basketball. I think ice hockey is generally not advised; but these things are all individual at times. I have read of many kids who do go on to play - of course, I guess it is a balance of risk vs. bubble wrap.

Sorry not to be more help. June does sound far, but it is really just around the corner. Hopefully these new symptoms are just the flu, and they will pass. Also, the nature of SM is that often periods of being symptomatic are followed by periods without any symptoms. Please just be sure you find a doctor who is very familiar with the condition, to ensure that your son received the proper treatment from the start.

Good luck! Please let us know how he is doing.
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Re: MRI show syrinx!! Info please

Postby lljacskon » Tue May 27, 2008 10:09 am

I am so sorry for your recent diagnosis. My daughter was diagnosed in October of last year and she was 18 at the time. She has always been extremely active in soccer, cheerleading, and tumbling. She was hit in the face July of 06 and we think whiplach may have caused her SM. However, since we do not have a MRI for comparison prior to the softball accisdent, her SM was dubbed idiopathic. She was told she could continue cheerleading, but she could not be a flyer anymore. Not realizing how bad it could be, she tried out as a base and was one of three that lifted another student. Not realizing how bad that could have been, her lifting another person, I am afraid that she has done more damage. So just be really careful and find out all you can!!! I am a nurse, and I did oodles of research, but it was this message board that has opened my eyes tremendoulsy to everything. Best of luck and my prayers are with you!!!
Much love to all,
Lisa (
Kaylie's Mom)
My beautiful daughter who has Chiari 0 Malformation and SM
Decompressed 6-16-09
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Re: MRI show syrinx!! Info please

Postby samsmom » Mon Jun 16, 2008 11:49 am

Hi Everybody,

First let me just say thank you for your information and encouragement. We finally had our apt with the ns and got our diagnosis of Chiari and syringomyelia. We were ready for it but still sad. Sam asked him if he could play football and wrestle again and the NS said no. That broke Sam's heart but we are already looking toward other outlets for his competitive spirit.

He said that Sam has a moderate syrinx with moderate chiari. He does not want to rush into surgery but he said Sam's symptoms have his attention and I am to call him if they get worse or if he develops more. He is seeing Dr. Lenwood Smith from USC in Columbia, SC. I am concerned about this because I don't think Sam is telling me about his headaches and backaches anymore. He will if I ask him how he felt that day. He says, My hand got tingly a couple of times. How often do you push? or should I just let him be and trust that if it gets bad enough he will tell me? He has another MRI on June 26th to view the L spine and the S spine.

I am kind of feeling like now what. What do we do next? Just help him cope with the symptoms and keep his spirits up. Thank you again for all your help and I will let you all know how the next MRIs turn out. Thank you Kimberly
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Re: MRI show syrinx!! Info please

Postby brianfsmom » Mon Jun 16, 2008 1:32 pm

Hi Kimberly

I think your doctor sounds sensible. On the other hand, I would still want a second opinion and then if that's the same, you can feel even better about it. As I mentioned previously, your son's syrinx before surgery is smaller than my son's was after surgery; and we are pleased with his status right now. You are right that he is probably not telling you the symptoms, but that's really OK. If they were bad enough, he would let you know. I have the same thoughts about my son. He told us once, and look where it got him - brain surgery! So he won't be quick to make THAT mistake again! :)

Most important I think would be to follow up with MRIs in a short period or time to check for change, and also make sure that they stay on top of neurological signs such as abnormal reflexes, sensations or changes in muscle tone or strength. If all of these signs are normal, then you are probably safe to rely on his self-reported symptoms, assuming the syrinx doesn't enlarge on MRI.

So that is what I would do. It is unfortunate, of course, about the football and wrestling. I hope you can find something else to keep him busy.

Good luck, let us know how you do with the next MRIs.
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