How harmful is the syrinx itself?

[GemUK2016]

Hello.
I recently had an MRI scan which has found an "extensive syrinx" and "moderate tonsillar herniation". I have not had what I would call horrendous symptoms, although have had some pain issues with my neck and back for a number of years - just assumed to be normal life aches and pains! The report states that no underlying tumour is seen, but it is the "extensive" part of the syrinx that is worrying me.
I am awaiting a consultation with a specialist and so as yet have not been Dxd with Chiari, although it is all sounding like this is the way it is going.
Also, we are currently trying for our first baby and I have seen how Chiari has caused problems with infertility.
........I know it might seem like I'm jumping the gun discussing things before Dx, but I'm wanting to make sure that I go into my consultation armed with all the right questions to ask!
If anyone has any comments they would be greatly appreciated.

[selmaS]

  Just saw this article and thought of you...check it out -

http://www.stltoday.com/lifestyles/health-med-fit/health/st-louis-docs-among-in-u-s-treating-hydrocephalus-without/article_3b97469b-3a28-5c98-b5c7-e63b39cec2ef.html?utm_medium=social&utm_source=facebook&utm_campaign=user-share

[selmaS]

  No worries, keep us posted on your progress on research and what you find out. Good luck.

[selmaS]

  It is very possible that your syrinx formed due to the disk when it was out of place....it is not easy to say....

To monitor it and  wait to see if you have more symptoms develop would be the right way to  go....BUT  a shunt is something I would avoid if possible....they tend to be problematic....get clogged, or need to be reprogrammed. Decompression surgery may help if CSF is obstructed.....

If you are over producing CSF you may want to look into possible reasons for it....Mast Cell disease, Ehlers-Danlos.....

Chiari is not the herniation but the malformation of the skull since this Dr is only looking at the herniation it may be the wrong Dr to be asking.
Since Chiari itself is mainly a congenital condition and we have had it since birth many do not recognize symptoms until they worsen since they tend to cycle  and flare and we see them as a result of other things. Some with really long herniation's can have no symptoms and no blockage of CSF while those with minimal herniation's have really horrendous symptoms....so there is more to look at here.

B4 I would have surgery for the syrinx I would want to know for sure why it formed congenital or some other possible reason and do you have congenital Chiari or is it due to some other possible issue.......

A shunt can lead to a long line of surgeries and I say that from watching others go thru it and I really feel there is something being missed.....JMHO

Thanks....I am so ready for this baby to come <3

[GemUK2016]

Thanks for your comments Selma. I must admit that I thought that the chiari was the herniation so I have learned something here and know that I need to go away and do some more research on this. I also do not want to have any kind of shunt operation unless I really need to, and ideally want more of an explanation as to where the syrinx has come from than what I have at the moment. There is now a long wait before my next MRIs, I think I may be needing to get more answers before then.
Thank you again :)

[selmaS]

  Oh I see, so the syrinx could have been formed due to lack of CSF around a slipped disk?

Have you had a MRI since your surgery to see if the syrinx's have shrunk?

I also agree a brain and cervical spine MRI should be done to rule out anything going on up there.....and since you have family history .

Good Luck

[GemUK2016]

Hi Selma.
So I have had my consultation, and overall I think it was good news. The syrinx is a significant size, although there is no sign of a brain tumour which is something I was very concerned about as it runs in my family. He also noted that although there is some herniation of the lower brain it is approx 1-2mm only and the top of the opening to my spinal canal is relatively wide so no real blockage type problems there.
The specialist has suggested that we MRI again in a few months to see if either the hernation or the syrinx are active and changing in size, and he also explained that surgery for either of these would probably only be suggested if I started to get the syptoms to go with it. In my case probably in the form of a shunt to relieve excess fluid from the area.
He tested me on things like loss of sensation, loss of reaction to heat / cold / sharp / soft etc in my arms and legs and they were all fine. I also have not had any headaches or dizzy issues......in fact this was only identified during a scan I had after a slipped disc in my back. I do have slight tinnitus especially when I lay down, plus I do suffer from dull back aches on and off, but overall not really any of the signs that there are problems coming.
He feels that it may not have been the herniation that caused the syrinx but some other reason (like either a damaged valve in the sinal canal or a result of a trauma long ago which started things off), and that it has been there for a long time, although seemingly not causing any real fuss.
So for now I am just to continue to heal from the slipped disc (which seems to be going well albeit slowly) and keep an eye on if any of the above symptoms start to occur.
Overall I feel this was a positive result, although obviously until we get the next set of scans we dont know whether either the hernation or the syrinx are "dormant" or whether they are on the move.
I was wondering what your thoughts were? I know that this is a CM forum and my specialist said that really the 1-2mm that I am showing plus lack of symptoms means I dont really qualify as CM. Would you agree?
I have read on here about people with 3mm CM that causes all sorts of issues, and also I have read that many people are glad that there is no syrinx, as though this denotes something bad.
What would your opinion be on leaving the syrinx where it is? My opinion from what I've read is that although surgery is the only hope when the syptoms are bad it is not something that you would want to do unless you had to.
Again, thank you for your time and any comments you can offer would be great.
p.s. Congratulations on your news of becoming a future grandparent :)

[selmaS]

  Hi Gem and welcome to the Chiari forum.

I do not think you are jumping the gun at all....and in fact think it you are asking and looking at questions you and your Drs should be. This all should be taken care of b4 you get pregnant if possible as it will help you in the long run. You can heal b4 having a child that needs you and not being able to lift after this surgery is more difficult with a little one around.

Decompression surgery is one of the main ways to help shrink a syrinx...and even tho you may not be aware of symptoms you have does not mean the syrinx is not having an effect on your health.In fact a syrinx can block some pain signals as can just having Chiari....it can numb some areas and cause pains in others.....

A CINE MRI should be done to see just how and where the CSF obstruction is located and the cause if it is not the cerebral tonsils causing it.

Then testing to rule out ALL related and non related conditions with similar symptoms to know what all is going on.

Make sure the Dr you see is a true Chiari specialist and is well informed and experienced with Chiari and ALL related conditions.

[GemUK2016]

Hi Selma, thank you so much for your message. My appointment is tomorrow (15th) so thankfully the long wait is nearly over.
Re. the MRI my results do state that I have 2 syrinxes - one is very small and the other is 7mm wide at its greatest point. What I dont know is if the MRI included my head (I know that might sound odd, but at the time of the MRI I was being treated for a slipped disc in my back so at the time they had no reason to scan my head, the syrinxes were found by accident!). I know that they can also be linked to brain tumours which are not uncommon in my family line and so that is something I want to look into straight away.
The report does state that there is no evidence of either cord compression or canal stenosis, and my slipped disc seems to be healing nicely a few weeks on, so I am trying to be positive about tomorrow - although this is all very new to me so is pretty daunting :(
Will share with you the outcome of tomorrow as again would love to hear your thoughts.
Thanks again for your time x