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Do syrinx hurt?
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Do syrinx hurt?

Do syrinx hurt? When they are just little tiny baby infant syrinx, can they be mistaken as other things, like disc etc on MRI? Even before being diagnosed with chiari, I have had back issues. A little less than a year after surgery on my lumbar spine, I started having thoracic pain. MRI showed 2 tiny disc bulges that all the docs said could not be the problem because "everyone my age has those". After months of trying to convince them of how bad the pain was and them trying to convince me that there was nothing there to explain the pain, I gave up. I have been living with the pain ever since and have never brought it up again. I have seen a local NS for the chiari but don't trust that he knows enough to even bring it up to him. He will likely just blow it off as he is the same one who says chiari doesn't affect vision or cause drop attacks.

I guess I'm just in one of those frustrated places again, or still. Have sent my stuff to UVA and have been in contact with NIH, but as with lots of specialists, it takes time for them to review things and set up appt. etc. in the mean time, I feel like I'm in purgatory with no one I can trust to run concerns or questions by. I'm used to my back issues and chronic pain, but fear that if something was missed, the more time that goes by before I see someone knowledgable, the more complications will develop.

On a side note, just had Hashimotos diagnosis confirmed (after a huge battle with docs) but meds were making me so nauseas I have to take a break from them so doc can decide what to do next.

Still trying to figure out who I pissed off in a past life :{

8 Comments Post a Comment
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620923_tn?1405964489

  Hi...I do not have a syrinx, so I can not say from experience but a syrinx can cause pain, and  neuro issues....but, since u have bulging disks I would look into Ehlers-Danlos....

A syrinx should show on a MRI, so if none were seen it could be 1- u did not have a MRI of ur entire spine, a syrinx can form in the cervial spine and this is the one place most Drs look for them, but they can also form in the thoracic and lumbar spine.

I also have Hashimoto's it is a auto immune condition and we r prone to those as well as connective tissue disorders like Ehlers-Danlos...bcuz the tissues that hold us together are lax, all our joints shift out of place as a result our muscles tighten trying to hold things in place causing spasms and pain all over.....

So the bulging disks could be from lax tissues...a fall, whip lash....but since u have Chiari, EDS should be ruled out.

I felt like u do b4 I found my Chiari Dr....it takes time until u find that right Dr...but once u do u will see just how much better things can b....and I do not mean just a NS that will offer surgery...u need one that will rule out all the related conditions and not rush into surgery  without checking these.
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Avatar_f_tn
So my understanding, and I could be wrong, s that syrinx starts as a cyst or something nt then grows into the "tunnel". Could it be mistaken for something else on MRI when it is just tarting to develop?

I have had MRI of my entire spine but never all at once. The Mose recent were brain and cervical. Thoracic and lumbar werein the last year or two. I'm just wondering if the radiologist might not have recognized the start of a syrinx because at the time, he was looking for back problems as I had not yet been diagnosed with Chiari. Don't have a ton of faith in anyone these days lol. I have been trying to getEDS ruled out but no one will test me. I will likely have to wait til I find THAT doctor to get that answer.

I had disc surgery in lumbar spine,but it's the mid back pain that is worrying me now. I have tons if symptoms, as u may remember. I just know that once a syrinx develops u open a hole new ball of wax and I feel like all this time everyone is wasting is just making that more of a possibility. I know I will not definitely get one, but since my CSF is blocked, there is a chance.
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620923_tn?1405964489

  I really don't know if they can be over looked or not seen in the first stages...wish I did.

Ray (rod44) may know a little more on this as he also has a syrinx....I do not, so I only know some basics on them....

I will ask for him to put his 2 cents worth in : )
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999891_tn?1407279676
A well developed Syrinx is hard to miss on an MRI even a small one. Unfortunately Syringomyelia is not very well understood, most experts believe a Syrinx develops due to an obstruction to the flow of CSF (Spinal fluid) the CSF takes the path of least resistance witch inevetabley is into the center of the spinal cord where it forms a cyst,
Pain from a Syrinx is contestant with nerve pain, everyone experiences it differently. This is why it is important to have a doctor who deals with Syringomyelia regularly. A chiari expert will have good knowledge of SM.


I suffer burning pain and loss of sensation on my skin that I feel is due to my Syrinx

Ray
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Avatar_f_tn
Thanks. I guess with everything else I just have to wait to see the specialists. Hopefully a syrinx is not developing or worsening as we speak (while I wait in purgatory) lol I know the CSF is blocked, I know my back hurts (then again, so does everything else), I know I have tons of symptoms and I KNOW I'm getting antsy waiting to find/see a specialist!

Ok, I'm done now :)
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Avatar_f_tn
Hi there, from what I understand you can have a small syrinx and be in a lot of pain or a large syrinx and no pain. Or the other way round. It varies greatly from person to person. My own syrinx is c2 to t8 and I have days where the pain is really bad and I have to just be in bed because I can't do anything and days where it's absolutely fine.
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Avatar_f_tn
So like with anything else it's an adventure lol guess we will have to see if the NS wants to repeat my back MRIs since its been awhile. FINALLY got my appt with Dr Oldfield atUVA 5/15. So we will see if he is THE doc or if I need to keep looking lol  when asked if I've gotten my surgery yet, my answer has become "nope, still shopping"!
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620923_tn?1405964489

  So glad u got in with this Dr and I hope u get answers and a course of action.
\
\ Do keep us posted on how this goes.....Good Luck : )
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