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A cyst was just found in my spine, causing pain, problems....

blackberrybunnybblackberrybunny Posts: 157
edited 06/11/2012 - 7:48 AM in Upper Back Pain, Thoracic
Hi everybody, (I originally posted this in the lower back pain forum, because that is where I've been 'hanging out' lately, but now I have a new problem, in my thoracic region also, and wanted to share it with anyone who might benefit from hearing about it. Sorry for the double post).

Sorry it has taken me so long to get back here. Some days I am just too depressed to get online. I'm sure you all understand.
I saw a new surgeon this past week and he had me get five MRI's, from my sacrum all the way to my brain. From headbone to tailbone.
Besides my lumbar problems, they now have found I have a cyst in my spinal canal which is choking off my spinal canal. This is why I am having hyper-reflexes, they said.
I have also been having pain in my thoracic region too. If we had not imaged me entire spine, we would not have known about this. And they are saying it is SERIOUS and to get it taken care of STAT, otherwise, I could become paralyzed from the shoulders down!!
They wouldn't even talk to me about my painful lumbar region, that hurts so bad sometimes I consider killing myself. They said this cyst I have has got to be taken care of NOW!
Well, what to think of this now? I am just beside myself with worry. They cyst is quite large (long) already and is blocking my canal. We went over my MRI's slowly, carefully, the it was easy for me, mom, and my husband to see clearly what the doctor was seeing.
I kept telling my pain mgmt dr. that I was having pain higher up, and I wanted more MRI's, but for some reason they kept saying no.... I'm glad I went to a new doctor. Now we know WHY I've been hurting additionally to my lumbar. Sometimes, you've gotta take things into your own hands as much as you can; if I had not requested this consultation with a new doctor about my lumbar, we would have never known I had a cyst growing inside me.
I have cried and cried and cried since Thursday. The doctor this surgeon referred me to will call me tomorrow with an appt. I look forward to meeting him. He's yet ANOTHER doctor to try to deal wtih, but what can you do? I'll let you all know how my first appointment goes with him. Hopefully, it'll


  • I hope everything goes Ok, And something gets done ASAP. I agree, we often have to take matters in our own hands!

    I wish you well,


  • OMG >:D< you are right you have to advocate for your self.

    Please keep us posted.

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  • Blackberry,

    Sorry this has come up. I am very happy that you pushed for another doctor - it probably saved your life! Please let us know how the appointment goes. I'll keep you in my thoughts, and send you positive energy. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I sure am glad your doctor ordered those MRI's on your spine. I am also proud of you for being persistent in getting some answers.

    We will be anxious to hear how everything goes, so please keep us posted.

    I am sorry for your worry at this time, but keep in mind that you will have more answers real soon. Help is on the way for you.

    I will keep you in my thoughts and prayers and I wish you the very best outcome.

    Tammy >:D<
  • I am so glad that you went to another doctor for another opinion at got proper testing done. I hope you get this taken care of very soon. I am sending you caring thoughts and HUGS! I want you to know that I had a similar experience, but I didn't get to a new doctor as soon as you did. I ended up in the emergency room and had surgery that day. They found a tumor that was compressing on and intertwined with my spinal nerve root. I am so glad that it was taken care of, and I wish I had done what you did sooner. I know that you will be alright, and the best thing you did was listen to your body. I spent years going to the same hospital pain clinic and the doctor refused to do any more MRI's on me ,especially in another part of my spine. I finally left her in January and found out in August that the tumor had been growing there the whole time. I wrote a post to encourage people to advocate for themselves and pay attention to subtle changes or symptoms. My subtle symptom changes were tingly toes and numbness in toes. You should be proud of yourself for taking the correct action to catch this before any further damage was caused. Good Luck with your appointment and everything. Please keep us updated!! Thank you for posting this to help other people seek second or third opinions.

    Wishing you all the BEST,
    glo :)

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  • You bring up a very, very, very good point - self advocate! I too have pushed when *my* body spoke louder than me or my treating physician. I swear our bodies know more than anyone when something is wrong!

    One show I love to watch is "Mystery Diagnosis", why? I see on that show that most all of the "puzzle patients" did much of their own research, or listened to their bodies and kept looking until the found the right doctor that understood their symptoms, even if subtle. Sometimes *1* symptom reveals the clue to diagnosis. We of course never know which one that will be.

    Blackberry, from what I've seen with you, your pain was your driving force to find a new doctor. So proud of you again for sticking to your guns!! I hope this all works out well for you - and soon! The pain levels you've been at - YOU need a break!! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks everyone for the support. I am also glad I went to a new doctor. NOW I'm off to see ANOTHER one..... this new Dr. will be the fourth, and he is supposed to be good when it comes to cysts and the like....

    I am hoping his office will call today or tomorrow with an appointment time for me. All I can do is wait...
  • Triple B, fingers crossed for a positive appointment. Still shaking my head. Soooo glad that you found out what the heck is going on. Did they call it a syrinx or tumor? Syrinx's are like long skinny looking strands in the canal. Positive energy for ya BBB!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Brenda, the doctor didn't say whether it was a syrinx or not, but after researching online, I know what you are talking about. The cyst did indeed look long on my MRI, so I am thinking this is a case of syringomyelia, but I won't know until I meet up with this new surgeon. Still waiting on his office to call with my appt. time.

    Of course, I'm no doctor, so this is just my guess about it being syringomyelia.
  • Oh BBB I am VERY glad that you pushed and that they found it...how SCARY it must have been to hear that!!!

    Please let us know when you get to go to the new Dr!!
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