Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Hi, our son Bexon also had an MRI where they discovered a syrinx (a fluid filled cyst in his spinal column). It was also 2mm. We were told it could be an incidental finding and unrelated to the scoliosis, or it could be related...but that it was probably too small to CAUSE the scoliosis, and that it is definitely too small for it to be a reason to operate (at this size and time). If a syrinx grows, and it can grow rapidly, according to what I read online- it can cause permanent nerve damage. It may also never grow, but it can grow much later- say, in the teenage years or adulthood. We were told to come back in 1 year for a follow up MRI. It is very scary to read about online, but I feel that we just need to be aware it's there and watch for any signs that it is growing- any numbness or tingling in his hands/arms, etc...we may choose to do MRIs every so often, to keep tabs on it, but we will see what the neuro says. We decided to cast in the meantime, our son's curve was progressive and dangerous. We feel we did the right thing, very much so. Does your child haver any sacral dimples? Bexon does on the top of his "butt crack", just curious... Stay in touch about the syrinx! Best- Heidi (Bexon's Mom, 22 months old, in first cast from SLC) Subject: SyrinxTo: infantile_scoliosis Date: Thursday, April 23, 2009, 11:37 AM Sorry if this is a double post..I posted this earlier but couldn't find it anywhere on the board so I am assuming it didn't go through.Shriner's called this morning (we go to Erie) w/ Logan's MRI results. They are telling us he has a Syrinx that is 2ml long and that their Neorosurgeon wants to see him on June 9 in Erie. Has anyone gone through this that could tell me exactly what this means and what to expect at this visit?I've looked up a few things online this afternoon which is only adding to my confusion.Thank you!!Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Sherry Did they do a full brain MRI as well? If not this would be the next step to see if he has a Chiari Malformation that is causing the syrinx. On the Infantilescoliosis.org site under links you will find a link to the chiari and syringomyelia site where you can learn more about a syrinx. It is a fluid filled area on the spine that sometimes requires surgery and a shunt if there is no CSF flow through the spine and brain. Please let me know if you would like more info and i will email you privatly. Rochelle > > Shriner's just called w/ Logan's MRI results. They are saying he has something called a Syrinx on his spine that is 2ml in length at this time. They have scheduled us to see the Shriner's Nero. on June 9 in Erie. > Does anyone have any experience with this and do you know what it is and if it is dangerous?? I've just read a bit online and it's all so confusing. > Thanks! > Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Yes, Rochelle..that would be great if you could email me privately about it. They did do a full brain MRI as well but didn't mention over the phone anything wrong with that. My husband wants me to call them back tomorrow and see if I can get more info. but I did spend quite a while on the phone w/ them today and it seemed they told me what they could until Logan has seen the Nero. They said the nero. only comes once a month to the Erie Shriner's so we won't see him until June 9. Waiting is always so hard. I wonder if they did see anything further like you mentioned that they withheld telling me until we go for our appt. in June?? Thanks so much for all of your help! Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Heidi Devyn has Chiari and no syrinx. But in my readings the two are almost always linked. If you check out the chiari syringomyelia link I posted about in the first post they have a listing of other disorders and malformations that syrinx's are linked to. All the research I did said that a syrinx doesn't just happen, that there is always something that causes it and because it is such a rare diagnosis most doctors don't know much about it and just say it is a syrinx and it just appeared with no cause. There is a lot of very helpful information on that site for both conditions. Rochelle > > > > Shriner's just called w/ Logan's MRI results. They are saying he has something called a Syrinx on his spine that is 2ml in length at this time. They have scheduled us to see the Shriner's Nero. on June 9 in Erie. > > Does anyone have any experience with this and do you know what it is and if it is dangerous?? I've just read a bit online and it's all so confusing. > > Thanks! > > Sherry > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Thank you, Rochelle, we will definitely check it out. -h Subject: Re: SyrinxTo: infantile_scoliosis Date: Thursday, April 23, 2009, 8:13 PM HeidiDevyn has Chiari and no syrinx. But in my readings the two are almost always linked. If you check out the chiari syringomyelia link I posted about in the first post they have a listing of other disorders and malformations that syrinx's are linked to. All the research I did said that a syrinx doesn't just happen, that there is always something that causes it and because it is such a rare diagnosis most doctors don't know much about it and just say it is a syrinx and it just appeared with no cause. There is a lot of very helpful information on that site for both conditions.Rochelle> >> > Shriner's just called w/ Logan's MRI results. They are saying he has something called a Syrinx on his spine that is 2ml in length at this time. They have scheduled us to see the Shriner's Nero. on June 9 in Erie. > > Does anyone have any experience with this and do you know what it is and if it is dangerous?? I've just read a bit online and it's all so confusing.> > Thanks!> > Sherry> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Rochelle, thanks again- Want to add that I looked at the syrinx link and we have read it before. We had 2 MRIs, with and without dye contast, looked at by 3 different radiologists, including two in L.A. and one at Shriners SLC, where we did casting. They all said there was no chiari and no tethered cord. Bexon definitely didn't have evidence of tumors, he has had no major trauma (as in, car accident), etc. One Doc did say he had some fatty tissue at the base of his spine, but this was a neuro Doc who barely looked at the MRI and did not read a radiologist report. He wanted his own hospital team to take films, with full anesthesia again on our baby, as I've been told happens often when you go to a doc at a new hospial-- we also have excellent health insurance, and he knew it would cost us almost nothing out of pocket. What it would have cost us was precious time-- our casting date being moved later, and our child was at 64 degrees by that day (we did not know that until we got to SLC, he had been at 34 degrees just 6 weeks prior). We had to make a judgement call as parents which was painful, but had we not gone for casting when we did, he could have been at 80-90 degrees or more, with permanent organ damage by the time we got to SLC. I post this for other parents to have the info that we did not. Best, Heidi From: Rochelle West /Devyn West <coolesttwinkie@ yahoo.com>Subject: [infantile_scoliosi s] Re: SyrinxTo: infantile_scoliosis @yahoogroups. comDate: Thursday, April 23, 2009, 8:13 PM HeidiDevyn has Chiari and no syrinx. But in my readings the two are almost always linked. If you check out the chiari syringomyelia link I posted about in the first post they have a listing of other disorders and malformations that syrinx's are linked to. All the research I did said that a syrinx doesn't just happen, that there is always something that causes it and because it is such a rare diagnosis most doctors don't know much about it and just say it is a syrinx and it just appeared with no cause. There is a lot of very helpful information on that site for both conditions.Rochelle> >> > Shriner's just called w/ Logan's MRI results. They are saying he has something called a Syrinx on his spine that is 2ml in length at this time. They have scheduled us to see the Shriner's Nero. on June 9 in Erie. > > Does anyone have any experience with this and do you know what it is and if it is dangerous?? I've just read a bit online and it's all so confusing.> > Thanks!> > Sherry> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Heidi In your case the doctors said that it is safe to cast because it is so small and they are monitoring it closely. I think this is great because the doctors are communicating with each other to give the go ahead. I just was stating that it is not really a new diagnosis but that it is not widely known about and most doctors that research only syrinx's that there is always something that causes it. We got lucky that at this time Devyn does not have a syrinx but he does have Chiari and did have brain surgery at 18months. Rochelle > > > > > > Shriner's just called w/ Logan's MRI results. They are saying he has something called a Syrinx on his spine that is 2ml in length at this time. They have scheduled us to see the Shriner's Nero. on June 9 in Erie. > > > Does anyone have any experience with this and do you know what it is and if it is dangerous?? I've just read a bit online and it's all so confusing. > > > Thanks! > > > Sherry > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Rochelle, I appreciate it, because I know you're making sure everyone has the best info out there, which- as we all know (unfortunately) does not always come from our doctors! We will watch the syrinx and stay on top of it. It does concern me- the question of what if they missed something in reading the MRIs (?), but that's a normal parent's worry...we are doing our best so far. Brain surgery at 18 months is a lot to go through, bless you and your family. All Best- Heidi Subject: Re: SyrinxTo: infantile_scoliosis Date: Friday, April 24, 2009, 7:34 AM HeidiIn your case the doctors said that it is safe to cast because it is so small and they are monitoring it closely. I think this is great because the doctors are communicating with each other to give the go ahead. I just was stating that it is not really a new diagnosis but that it is not widely known about and most doctors that research only syrinx's that there is always something that causes it. We got lucky that at this time Devyn does not have a syrinx but he does have Chiari and did have brain surgery at 18months. Rochelle> > >> > > Shriner's just called w/ Logan's MRI results. They are saying he has something called a Syrinx on his spine that is 2ml in length at this time. They have scheduled us to see the Shriner's Nero. on June 9 in Erie. > > > Does anyone have any experience with this and do you know what it is and if it is dangerous?? I've just read a bit online and it's all so confusing.> > > Thanks!> > > Sherry> > >> >> Quote Link to comment Share on other sites More sharing options...
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