what is the developement of a syrinx?

[lisaob1]

my daughter had an mri scan almost three years ago which found she had a 9mm syrinx,she should of by now had another one but we are still waiting for an appointment, but can anybody tell me how a syrinx developes and what are the chances there will be no change,she also has a muscle disease so its hard to determine what is causing her problems. how much more can a syrinx grow and what complications can they cause?

[selmaS]

  Hi and welcome to the Chiari forum.

Since this is an older thread the members that originally posted may not longer be active. For that reason you may want to look at more current threads or create a new one.

A syrinx or the condition of having a syrinx is known as Syringomyelia....it often  goes hand in hand with Chiari Malformation...do you know if you also have Chiari? Or if your syrinx is congeital or due to an injury?

Have they checked the rest of your spine for more syrinx's? You can have more then one and they can be anywhere in the spine.

Depending on the size of the syrinx and it's location will depend on what symptoms you have.

[Thumper0365]

I have just been told I have a cirvicel syrinx was going for physio for pain in my hip which we thought was giving me numbness and pins & needles in my feet. I have always been a very active women and it was quite a blow to me to be told this have know been referred to the southern general as my symptoms have got worse I have face numbness my right side it effected bad .

[rod44]

Hi, a Syrinx can elongate over time to involve the whole spine and the brain stem (syringobulbia) As Pam said if left untreated it can destroy the Spinal Cord.
It is very frustrating when Doctors dont communicate with each other and treat the patent and not just the disease. I have a rare congenital malformation at my Cervical/thoracic junction as well as CM/SM. I have a Neurosurgeon, a Neurologist, a urologist & an ENT Doctor, they all look at the symptoms that comes under their specialty and admit that they could be due to one of the problems I have in my spine however the only treatment is Surgery, the NS feels surgery is much too risky so I am left in limbo. I like Jackie live in Ireland and our health system is like the NHS, it all comes down to money.
I agree with Jackie, get copy's of your Daughters medical Records and MRI's and research her Illnesses, then you can talk with her Doctors and understand what they are telling you, you will know when they are talking Bull, from my experience they do that a lot lol.  

Ray

[jacmurphy]

HI
I can understand a little of what you are going through. I'm in Ireland and we have a similar health system. My son's symptoms are also ignored. It's so frustrating always trying to find out more about his condition and them telling me there's nothing wrong when I can see there is. The reason they gave me for not doing anymore MRI's (They've said there won't be anymore done) is because of the cost. I've taken that problem away from them and just requested a letter for an MRI that I will have done privately. I can't afford to do this... but I feel I have no choice as most of his symptoms started after his one and only MRI and before we found out he had Chiari (and a prominence on his spine). I've also requested his records from the hospital. I know from the experience we've had over the last 14 months that they do not tell us everything.
I would advice that you request your daughter's Medical records. Educate yourself and keep fighting. No one knows your child like you do.
God Bless.

[lisaob1]

hi thankyou so much for your reply,my daughter has been under the care of alderhey childrens hospital since basically she was born.as she has a rare muscle disease which they have never come across so they have told me they believe this to be the cause of her problems,but a 9mm syrinx cant be ignored and i feel they are doing just that. its not chiari,but i worry about how this syrinx may develope,they seem to concerned about her muscle problems and i feel her syringomyelia is being ignored because of this,she is under that many consultants i feel she is getting passed from pillar to post without anybody stepping up and taking responsibility. mr.buxton who specialises in syringomyelia,mr.spinty,neurology,dr,murphy and dr kneen,genetics and also dr ian fryer,all top specialists of whom my daughter is under and i ever met the leading world expert alice brooks from amsterdam.if all these people cant or dont understand i dont know where else to turn

[pamk5]

Hello,  Well a Syrinx if not treated can cause paralysis and destruction of the spinal cord.  I am not sure how big they can get I would imagine as big as the spinal cord since it is a cavity inside the  cord.  The most common cause is blockage of CSF fluid.  Does your daughter have Chiari also?  Is the doctor she is seeing a specialist?  I would think it would be important to gather her scans and get her to someone who specializes in SM/CM.  There is a list here in the forum of docs other members have used and liked.  I saw you are in the UK there is also a list for the UK.  Please do get her seen by someone who understands.  

Pam