Can a syrinx refill?

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Can a syrinx refill?

Postby jinglebells » Thu Dec 08, 2011 11:00 am

Hi
I am just looking for a bit of advice on wether a syrinx can refill or another syrinx can crop up elsewhere in the spine. I had decompression surgery two years ago and my cervical syrinx although still there, is much smaller,for the past four months i have had pain in my thoracic spine.My gp sent me for xrays but they wont show up the spinal cord.I am due to see him again tommorrow ,hence the question.
Many thanks,
Jinglebells
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Re: Can a syrinx refill?

Postby gunflint » Thu Dec 08, 2011 3:35 pm

A couple of things. I'm no NS but like most of us I've done a lot of studying. Yes you can get another syrinx in fact as a member of the SM club from what i understand it's about a 50/50 chance. The second thing is I'm surprised that you got an xray instead of an MRI. I don't see where you're from. But that sounds like something from Canada or Great Briton. Does your GP know about your SM?
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Re: Can a syrinx refill?

Postby jinglebells » Thu Dec 08, 2011 3:56 pm

Hi Gunflint,
many thanks for your reply,I am from the UK, I was quite dismayed that my gp sent me for an xray and not an mri.Tommorrow i will request an mri,not too hopeful though,My gp is new to me, Not sure wether he is familiar with chiari/syringomyelia, seems rude to ask.I have my suspicions that he is not too aware of the long term effects of being undiagnosed for so many years.Gunflint, do you mind if i ask if you also have chiari? or have had decompresssion surgery?
Thank you so much for your reply,
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Re: Can a syrinx refill?

Postby razzle » Thu Dec 08, 2011 5:05 pm

yes they can come back ... some stay the same size , some get bigger , some smaller... R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: Can a syrinx refill?

Postby Catrine » Wed Jan 18, 2012 1:12 pm

Hi JingleBells,

Oh yes they can refill!! The best signals you'll have are the return of any "old" symptoms or the worsening of any symptoms. Then there may be new ones as well. For me, it was the return of hand clawing which I had before my decompression surgery.

You need to get good at reading your body - you are the best expert you have.

And don't worry about being rude to your new GP. I actually printed off a wiki article on CM and SM and gave it to my GP. It's just you trying to help! And given your history, you should be on the books of an NS consultant. I would re-establish that connection if possible as it makes getting MRIs a lot easier.

I thought the decompression surgery was going to permanently fix things. For some it does...but don't ignore your body...for others, the syrinx does refill.

Good luck
C
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Re: Can a syrinx refill?

Postby AKShel » Wed Jan 18, 2012 2:32 pm

Yes, they can refill. My decompression surgury was in June and post surgery, the syrinx did shrink (C4-T8) Unfortunately, it is refilling at C5 and T8....NS consult forthcoming.....
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Re: Can a syrinx refill?

Postby MichelleW » Wed Jan 18, 2012 6:42 pm

Yes, a syrinx can refill. My initial shunt failed and my syrinx refilled almost immediately. The refilling would generally happen because something is blocked up again, forcing the fluid inside the spinal cord.
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
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Re: Can a syrinx refill?

Postby jinglebells » Thu Jan 19, 2012 10:28 am

Hi Catrine, AKShel and Michelle,
Thank you for taking the time to reply,I dont know if mine has refilled but i have at least managed to persuade my GP to refer me back to my neurosurgeon,who I will be seeing next wednesday! Now I know that syrinxes can refill i will not be so wary of mentioning this concern.
Thanks again ,
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Re: Can a syrinx refill?

Postby passmass » Thu Jan 19, 2012 9:19 pm

Yes. A Syrinx can get larger. This just happened to me. I had disc at C5-6 ruptured into spinal cord in 2004
Last Spring I started having a flair up of pain. Especially PAIN. Had my yearly MRI and was amazed how much my Disc had moved. SAw NS and He said disc C4-5 had ruptured into spinal cord. My syrinx had grown in size. All this explained symptons. Right after surgery I could tell a difference in pain.
NS said syrinx should go down over time.
Sorry for mess I'm on cell phone.
Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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Re: Can a syrinx refill?

Postby Cyborg Ninja » Fri Feb 10, 2012 1:10 am

Neuropathic symptoms caused by a syrinx often stay with the patient for life. Surgery is largely aimed to stop progression, not take away damage that is already permanent.
DX: SM (idiopathic), Crohn's disease, Graves' disease, gallstones, scoliosis, anemia
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Re: Can a syrinx refill?

Postby whiteangel » Thu Mar 01, 2012 8:19 pm

Yes the can re-fill and if you're had SCI you can get other syrinx's...you doctor should of sent you for MRI........but it's probably best that you see NS 8)
WhiteAngel, Low Grade Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately. http://whiteangel0.blogspot.com.au/p/my-story_06.html
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Re: Can a syrinx refill?

Postby jinglebells » Fri Mar 02, 2012 5:21 am

Hello,
I just want to thank you all for taking out your time to reply.
Unfortunately I am still non the wiser after a very disappointing visit with my neuro.I got to see a different man who was with a student neuro,both of whom laughed at me because I dont take any meds.{Too scared of side effects} Then was seen by my normal neuro and someone else who was not introduced to me.He ordered more Xrays ,no MRI,and told me that it is just likely to be disc degeneration,at this point the first neuro decided to lay flat out on a consulting chair and burst out laughing when my neuro talked about tns machines.Needless to say I found this quite humiliating.I have also found that my neuro has since told another patient that their chiari symptoms are due to stomatization disorder!!!!!
So I am beginning to wonder about him now.Anyway the diagnosis is Lumber/thoracal vertebral pain syndrome secondary to degenerative changes.Looks like I am back to square one again.

Whiteangel sorry for being a bit dim but what does SCI stand for?
Kind regards and many thanks to you all, Jinglebells
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Re: Can a syrinx refill?

Postby whiteangel » Fri Mar 02, 2012 9:50 pm

hi jinglebells,

Hi again....SCI, is Spinal cord injury....

if in your passed medical history you have had a syrinx, it's strange to me why they won't give you a full spinal MRI...if you had one, you can get other's or have the same one come back...can't you find another NS....i wish you luck...
WhiteAngel, Low Grade Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately. http://whiteangel0.blogspot.com.au/p/my-story_06.html
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Re: Can a syrinx refill?

Postby reedy » Sat Mar 03, 2012 12:31 pm

Hi Jinglebells,

I'm in London and have seen a fair number of neurosurgeons here in my search for answers and have been corresponding with few others on the list about their opinions. I can give you some opinions and suggestions on who you might want to try to see. PM me if you want, or if you can, just do a search on my old posts as I've written a lot of it here before. Better yet, you should also check out the Chiari UK forum - a VERY friendly, chatty place ( http://www.chiari.co.uk/chat/index.php ). I got the advice to go to the excellent Walton Centre in Liverpool through that forum.

I've found it useful to make private appointments for starters if you can afford it (but you should try to have your MRIs done first). You will then have a longer appointment time. If you have a syrinx, an Xray isn't going to inform much. Xrays show up only hard tissue (bone).
cheers,
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