I have a 3mm-11mm shrinx, 2 bulging discs in mid/lower spine, and 1 in my neck. I was diagnosed with fibromyalgia 3 years ago, and just recently been diagnosed with severe migraines I have been dealing with the worst pains. One of my daughter's has just been diagnosed with bordering Chari 1/2,we both have scoliosis, but they haven't found Chari in me ? I haven't had d/c MRI,so not sure if that makes a difference... In the last 2 years my shrinx has gone from 10mm to 11mm, so I'm guessing it's active I have to wait another 3 mths for my next neurologist appointment, so over the pains and now I'm finding it differcult to walk ... Everything I'm reading about it online doesn't look good, not sure whether to be scared, worried or cry ???
this is kinda late but im researching burning chest pain with a syrinx, because i have the same thing. I also, have been diagnosed and treated for chairi/syrinx in the c-spine it was fairly large but since surgery has reduced down to about your size and this is when the chest pain started at about this size so i believe it could be coming from the syrinx, but God has been more than Good to me, so be blessed and dont forgrt to Pray
Hi,
I am really interested in knowing more about your personal experiences and if you have more severe symptoms having a syrinx AND fibromyalgia? How long have you been living with Fibromyalgia and what kind of symptoms were you having prior to finding the syrinx? Have the symptoms changed or worsened since the syrinx diagnosis? I too have Fibromyalgia, syrinx @T1-T10, issues with discs in my neck and Hypothyroidism. I have severe migraines about 5 times a week and luckily have medication that works for me. I have a list of issues/symptoms a mile long and try my best just to make it through each day. I can't work at this point and the quality of my life is very frustrating to deal with. I'm learning to live life in a completely different way...with more time, energy and finances going towards anything that can make my life easier and me feel healthier day to day. I have always wanted to be a mom. I feel that with all my health issues that I have to give up on that dream for many reasons. How do you cope day to day?
Hi I was diag. With syring. Last spring by a neurosurgen and I have a syrnix from top to bottom, with back and shoulder pain, anyway I had seen a chiro. Before diag. And my doc said not to anymore dangerous. Also I have had back epidural since now not sure if that is safe either?! also see rheumatoligist for fibromialgia.
HI and welcome to the chiari forum.
I see u have a syrinx and u mention it is blocking or compressing nerves....most times a syrinx can form 1 of 2 ways...the first is congenital....as it is from a congenital issue like chiari which causes a CSF blockage and then a syrinx forms....or, it can be acquired from a soft tissue injury...
Drs most times will watch these as they tend to be too small for a shunt or a stent...releasing the CSF blockage... doing a PFD for the chiari ,sometimes this was allow the syrinx to shrink....
Ray is right that it is important to get to a dr that deals with these everyday...a chiari dr would be the best to start with.
"selma"
In my mri my syrinx is about two inchs long and my doctor said it was blocking nerves to my arm. what ways are there to grt rid of them and what is the pro and cons. Im going to winston salem nc. to the baptist hospital on the 21st of june. im haveing back pain and my left arm goes numb some times.
With a Syrinx it is important to find the cause, It can be due to a CSF blockage due to Chiari or other spinal cord problems.
It is also important to find a Neurosurgeon with experience of Syringomyelia.
Ray
i tore my rotator cuf and in the proses of the mri of my shoulder and neck they found a syrinx. I have not had pain untill lately my left arm wold go num and i could not move it for about 3 to 5 min. Im going to see a spinal specialist tuesday, from what i was told he will be removeing it or repairing the problem that causeing it.
Hi Thomas, as I mentioned b4 U must have a syrinx due to injury....since the rest of ur spine is clear....U do not have the other issues I mentioned.
Thomas, I do hope that if u have ne further issues u might consider seeing a NS that specializes in syrinx's.....
Good luck
"selma"
Hey, just wanted to keep everyone up dated. Got alot of good news from the doctors. The syrinx i have is considered to be extremely common, and he said its possible he has the exact same thing in his back, so basically everyone and there brothers sisters friend could have the type of syrinx i have.
I just got injections in my back from T12 down to t7 to see if the pain would subside a little bit. Which it did, proving that my pain is coming from the nerves that sit in between the facets on the sides of your vertebre (little round pointed edges on the sides of your vertebre). So my next step is to actually have them burned and hopefully ill be up and back to normal once that is done. Thanks to everyone that has posted on here i really appricate it.
regards
-thomas.
ive had constrast. Everything that i could be born with such as chiari/ and any other spinal dissorder has been ruled out. They did every possible view from the top of my head down to my lower back so they could check for everything. This was the only thing that came up. Like i noted in my first post i have been living a very normal life without any issues until i took a serious fall skim boarding (boy do i wish i didnt fall that day) the funny thing is ive taken worse falls snowboarding and racing motocross but guess it all matters on how you land. I can still manage every day living without pain killers but it is a process. Somedays are worse than others and the easiest way to explain the pain i have is a burning sensation.
Also Ohnoma i was getting the impression you had something similar to me, im sry to here how much pain your in and i wish you the best. I think what i have is very different, but like you noted i definitly think i have some really angry nerves that for some reason the MRIs didnt pick them up.
Thank you all so much for your quick responses it is very nice to know there are so many people that are out there willing to discuss things like this.
heres the link, that really hit it on the money on explaining the type of syrinx i have. But like i posted here doesnt explain the burning/pain that i experience every day.
http://www.conquerchiari.org/subs%20only/volume%203/issue%203(2)/Slit-like%20Syrinx%203(2).asp
Sorry the suggestion wasn't a good one. My syrinx does not run down my cord. It is more or less a lump on the side of my spine near c7. I have scoliosis and through checking that out, they found it. It has not gotten any bigger that I have noticed. I haven't had it checked in quite some time. But you sound like you have some serious problems going on. I would dare to say you have some cord compression. That pain in your arm and the side of your face, that sounds very serious. I would say pinched nerve first, yet, I have cauda equina, and I know the pain that comes with compression. I take morphine and vicodin every day for the pain. Otherwise, I don't move much. I hope you find some good help and find it soon. Be persistent. If not, I am afraid damage could occur that would leave you with a permanent disability. We don't want that for anyone. Take care and get going on finding a specialist.
A syrinx can cause your symptoms (Syringomyelia can cause paralysis if not treated, so, make sure you get regular MRI's), but I doubt that it's causing all of your problems. I'd think it more likely that you have some nerve damage or spinal injuries that they haven't found yet.
Syringomyelia is often a by-product of Chiari, that's why your web searches brought you here, but it sounds like your injuries caused yours. Chiari is something you're born with, so most likely you don't have it.
HI.....have u had a brain MRI w/wo contrast?......u may have syringomyelia due to a trauma....I will PM a link to a org that has info on this...however u should make sure u do not have chiari or tethered cord.
ur symptoms can b related to where ur syrinx is and the nerves it is affecting.
U need to find a dr that is chiari /syringomyellia specialist.Let us know where u live, we can help locate one , hopfully close, but be advised u may need to travel.
keep us posted on how u r doing.
Godspeed
"selma"
thanks for the imput about the chiro. I went for 6 weeks hoping that would of solved the problem back in the beginning of september. At first i thought or felt like it was helping, and then it took a turn for the worse and pain went from being tolerable to me staying home not working/going to school or doing any of the activities i enjoy doing. Maybe i was at the make it or break it point and instead of stopping should of kept on going? I ended up getting numbness and tingleing on my left side of my face and left arm. Thats when i stopped going and went to the ER.
The syrinx you have is it related to any abnormalities or it is something similar to a very thin slit like syrinx? I ask because mine was found more or less by mistake when i was getting my MRIs and through further research if hospital pump enough People through MRIs they will have similar cases as i do with a very small syrinx. what i have is very thin but runs through most of my spinal cord. Over the past 30 years has yours gotten any bigger or its basically dorment?
Thanks for the quick reply and happy holidays.
I personally do not think the syrinx is causing all your pain. I have had one for over 30 years and I only know it's there if it gets touched or bumped.
As for your back and chest. Have you been to a chiropractor for this? I have had similar pain for several years, threw my back out from blunt force. I got instant relief from a chiropractor. The doctors and hospitals think nothing of your spine being out of alignment. It hurts like....Point at hand: My son fell off of a 40 ft. cliff and was having severe pain in his back. X-rays and CT's did not show anything broken. I said to the ER doc that his spine was malaligned and they said that was no big deal. It was not broken anywhere and there was nothing to worry about. I took him to the chiro and instantly, he could take a deep breath and the crushing pain was gone. They don't see things like chiros do. So if you haven't seen one, I would suggest giving it a shot. If it's been 3 years, you have nothing to lose but the pain. Hope this helped some. Good Luck.