Syrinx entire length of spine

[Catrine]

Hello all,

I am a newbie to the forum. I really wish I had known about it years ago! The support I see here is amazing.

I was hoping to hear from members who have a syrinx that runs the entire length of their spinal cord. I've had mine 30+ years - although didn't find that out until this spring -, had CM decompression surgey in '96 and over the past 2 years have had 3 VP shunt ops. I am now heading toward op #24 (I was born with spina bifida) which is a syringopleural shunt. My syrinx is, to quote my surgeon, "huge" in the lumbar region but it's also widening in the thorasic and cervical regions as well.

I thought that my decompression surgery had "fixed" the SM - but my dr's failed to mention that you can't completely fix SM and it can re-awaken so to speak.

I just wondered if there were people here who have a syrinx which is expanding along the entire spinal cord. And if anyone has encountered a segmented syrinx - I'm still trying to ascertain whether mine is as none of the surgeons have yet given me an answer.

Finally, I wanted to thank all those who are sharing their thoughts and experiences. It is so very valuable!

Thanks
Catrine

[gunflint]

catrine,

I do not have a syrinx anywhere near that large but I just wanted to welcome you and to let you know that there are many here that understand what you're going through.
I've just had my symptoms for a couple of years now. I just can't imagine 30 years of pain. And just when I was starting to feel sorry for myself again. Please stay in touch.

[MichelleW]

I know you've read my story, but I want to wish you all the best with your upcoming shunt procedure! Update us when you can

[texassyrinx2]

I have a segmented Syrinx going from c3-4 junction to T1 and then from t7- L1. Had been diagnosed since 1991 so I have lived with it a long time. It is widest in the c spine at about 5 to 6mm the rest are 3 to 4 mm tapering at the ends of course. It has grown in length and width over time.

I am having my first spinal surgery tomorrow so I am very lucky. I am having spinal fusions in my neck. I have seen Dr. Oro in Co in the past but he suggested I could have this done here in Texas. I am going with the flow! Prayed up and hoping for some relief from some of the pain caused by a giant bone spur and a blown disc.

I wish you well.

Mary

[Cyborg Ninja]

My syrinx runs from about C5 all the way down the length of the spinal cord, to the conus medullaris. It may start higher up in the spinal cord, however. The widest width was just 5mm, which isn't that wide compared to other syrinxes. It has parts where it widens, and then narrows and widens again. So far there is no known cause for my syringomyelia.

[toport20]

Hi Catrine!

Nice to meet you- not under these circumstances. Mine goes just about the entire length of the spine. I had tethered cord surgery and they thought that was what was causing it, possibly pulling down from the lumbar area. However, my followup MRI's are not good, and I have to go back possibly for a PFD or fusion of some kind.

I know my syrinx is now 9mm up in the cervical area, I really don't know what is going on. Have you watched any of the videos available about SM? I wish I had an easy answer for all this, it seems like it gets more confusing the longer I go with it. Keep in touch!!

Tracy

[Catrine]

Hello - Thanks to you all for your replies and well wishes! It does help to know that I am not alone in this.

Just an update on my situation. My surgery has been post-poned into the new year as my surgeon is not well - which is not good news. I guess these supermen/women are humans after all. I'm hoping he improves (selfishly for myself which makes me feel guilty) becasuse I would never wish serious illness on anyone. I've tracked down a back-up solution and am trying to get that in place but it seems one step forward, two steps back.

Should know more in the next few weeks.

Keep well everyone
C

[jjames]

Hi there and welcome!
I have a syrinx that runs from C1 to T10, and was wide enough to press out against the vertebrae on either side (I want to say 13mm but I am honestly not sure). I have had two decompression surgeries, and after the second it seems to be shrinking in diameter. If you have specific questions, please feel free to pm me.

[nanapbetts]

Having been very recently diagnosed I have found that treatment and information both very limited. Surgery appears to be about the only treatment option.
I am 72 years old and would like to know if anyone out there has tried alternate treatments such as acupuncture, herbs, physical therapy etc.? Also, is chronic fatigue a symptom of this condition? Fatigue and lower limb pain seem to be my biggest challenges, at least for now. Symptoms have been wierd and varied over the past few years.
I am confused and frustrated even when trying to find out more about this.
God bless you in your journey and give us all wisdom and peace as we cope with this.

[Catrine]

Hi all,

Many of you asked me to keep in touch. Just an update - my surgery has finally been scheduled. I will be having a syringopleural shunt op on Jan 31st. Keep your fingers crossed for me.

Cheers
C

[gunflint]

Godspeed and remember that you are not alone. And please do keep in touch. Sometimes after surgery you don't feel like talking to anybody, particularly about CM/SM but often that is the best time to check in. Good Luck.

[Catrine]

Thought I'd let the Forum know an update...

I'd hoped at this point I'd be recovering 3-days post-surgery. Unfortuntely my surgery has been delayed/cancelled due to a lack of beds in my hospital. So surgeon was ready to go, plans made, etc but hospital logistics have ruined my plans...

Trying hard not to scream...I was added to an urgent surgical list 6 months ago...but I seem to have one piece of bad luck after another. Surgeons going off ill for 3 months, no beds...the emotional ups and downs are horrible. This is a difficult enough surgery to gear yourself up for without the all the added complications.

Still trying to learn when I will be re-scheduled but early indications are it won't be until end-March now as my surgeon has vacation booked for two weeks in Feb.

Ever get the feeling that someone up there is trying to tell you something?

C

[andij]

Hi Catrine

So sorry to hear about your surgery cancellation. Its so frustrating when that happens. I really hope you hear something soon and that when you finally have the surgery everything is successful. I to am waiting for shunt surgery in my syrinx which almost covers the entire length of the spinal cord, fills the width of the spinal cord and is segmented. My surgery has also been postponed (though not as often as yours from the sound of things) so I understand how you feel. It's the sitting around waiting for news that gets to me. Running (I wish) to the door each time the postman arrives hoping he has a letter with some news i it

Good luck, hope you hear something soon.

Andi

[karenb]

Hi Catrine,

I'm so sorry to hear that you've been delayed yet again... I can't even imagine how frustrating it must be for you. Your attitude is quite amazing, all things considered.

I hope you get a new date soon (and I mean that both ways!).

Karen

[Catrine]

Hello all,

Thanks for all the positive thoughts. I wanted to share my recent update on my recent syringopleural shunt and post op.

• Surgery went ahead on the second go-round (15th Feb), went up the night before
• The op itself went well. A syringopleural shunt at T11. My surgeon said that my spinal cord was already so distended in that area that he really didn’t have to cut through much actual spinal cord to get to the syrinx.
• That’s bad in one way as it means much of the damage had already been done but good in another as most of the possible outcomes he mentioned re: bowel, bladder, sensory have been static. I have had some loss in sensation in my right leg but I can deal with that. On a positive note I have gotten some function back in my right arm which tends to lead me to think my syrinx is communicating.
• The syrinx collapsed immediately when he cut into the cord and he said that the syrinx had really been under high pressure (read: very advanced and full of CSF)
• As for the upper shunt pain in the lungs that others have complained about here, I have been lucky: not really a problem for me, just minor incision pain. I also did not need to lie flat and had no mobility restrictions. There were pressure headaches for about 4-5 days and funnily enough, I had distorted hearing for about a week but it did go away. My surgeon said all of these things were down to the change in CSF pressure.
• My main issue during the whole experience was with the anaesthetic. I was nauseous for 1.5 days and it really did a number on me for some reason

My surgeon was very supportive throughout and I have to say that I think I was in very good hands. So I guess the delays were "worth it" in the end.

As opposed to many people here, I already was quite disabled due to my spina bifida. My main aim was to save my arm movement so that I maintain some independence. So the surgery was exactly what I needed. I know these shunts can block (50/50 - as Michelle W can attest to) and we are still not completely sure if my syrinx is commmunicating but I'm choosing to be positive right now.

Now I'm fighting to get into a specialist spinal injuries unit as these unit sometimes don't view syringomyelia as a "proper" SCI. I will eventually get in hopefully and then expect a lot of hard work. But I'm up for it if it helps.

I'll post this update in a few threads but wanted you all to know.
Catrine