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Newbie with all the "fun" conditions in one. Please help me understand

AnonymousUserAAnonymousUser Posts: 49,899
edited 06/11/2012 - 8:22 AM in Chronic Pain
:''(
Hello to everyone. Glad I found this place. Maybe someone can help me learn to cope with all the problems I am experiencing. I am 50 and on disability now.
First off, my pain started 7 years ago. It has taken 21 doctors to tell me "It's all in your head" "Live with it", Try PT, try exercise, try chiropractic, try acupuncture, try changing your diet, try losing weight, try this and try that,and I did, but until 2006 I never had anyone tell me what was really wrong with me.
I have fybromialgia, spinal stenosis, a circumferential disc bulge and a 8x5x20mm perineural cyst.
I had a laminectomy on L3,L4 and L5, in April of last year, which relieved a lot of my pain...for a while. At that time my cyst was only 3mm. With my recent MRI I find I am more worried about this cyst than my pain doctor.
Here are the findings from my MRI:
1.
Large perineural cyst which appears to arise from L3 nerve on the left causing mild mass effect on the thecal sac displacing it towards the right of the spinal canal. (Doc says it starts on one side, goes thru the spinal canal and out the other side)Has anyone had these removed?
2.
Severe central canal stenosis at the L4-L5 level secondary to circumferential disc bulde and facet hypertrophic change. there is also severe neural foraminal narrowing bilaterally at this level. (ok, first part is from laminectomy, second part is greek to me)
So my question is really twofold.
One. Can a cyst that size cause more pain than I am used to and Two, is Central Canal Stenosis just another way of saying spinal stenosis?
I have been living with this pain for many years and I must say, I do pretty good. It's just that lately I feel my legs aren't working the way they should and I find I am dragging my feet. I cannot walk much without severe pain now and I fear a wheelchair is in my future.
How have you coped with your problems and am I crazy for fearing that one day I may not be able to walk? Is that normal? Have I gone over the edge?
Oh, yes, I am on meds for depression too.
Thank you in advance for all of your help.
God bless
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Comments

  • Hello & welcome to S-H.. :H

    There isn't much I can answer for you.My problems are cervicle...but have you asked your Dr. any of the questions that you have ask here or are you trying to understand it all first?

    When the Dr told me my issues I had no idea what to ask so I came home and started researching.Smart,maybe,but it can be scary too.There is so much information on the web and I had a hard time trying to sort it all out.I've read everything from-I'm just fine-to omg looks like I might be paralyzed (not here,in my research...lol)

    If you read here on the stenosis,there are other links that you can follow that may help you with some of your confusion.

    http://www.spine-health.com/conditions/spinal-stenosis

    Sorry that I couldn't be more helpful,but hopefully someone else with problems similiar to yours will be along to answer you soon.
  • :) hi! i see this is your first post and i want to welcome you to the forum! we are here to offer you support and answer what questions we can. i am sorry you are having chronic pain. you find we all have that in common. fear is very common with pain. i am 52 and now use a cane occasionally. i wonder where i will be at 62? :? please don't jump ahead of yourself. are you on a good pt program? exercise and stretching are a necessity at our age!! talk to your pm doctor about this. perhaps it will get your feet moving better. trust your pm and if you don't, find another. it is your pain so keep searching if you must! good luck! Jenny :)
  • lucan- I have a tarlov cyst that was noted as incidental on my lumbar mri. I looked it up and some of of my pain symptoms do seem to be related to that cyst. The cyst is in the sacral area.... :))) jade
  • We seem to have a few things in commen. Not exatcly our spine issues, but more down the lines of our mental issues and concerns. My problems started about 9 years ago, and I had all of my surgery's by 7 years ago. I had 2 withing 2 months and another 1 year later. I had a herniated disk, L-5/S-1, the 1st surgery was a Laminectomy, and then it went bad so my 2nd surgery was a spine fusion. My 3rd surgery was reconstructive surgery for the mess that was made from the 2nd. Except for a follow up MRI shortly after my 3rd, I haven't had any more pictures taken since so I have no idea what has gone on since. I do know that I have scar tissue impingment on a nerve root and severe nerve damage on my left side, due to the original disk herniation.

    OK, now that I've given you the rundown, I'll tell you where I can undestand your concerns. I too am scared that I'm facing a wheelchair in the near future. This has been coming for awhile now. I'm only 44 years old and have been disabled since I was 36. I can't imagine being forced to use a wheelchair to get around. The idea is just killing me emotionally. I've also been on SSD for about 7 years now. But because I spent a lot of the years with my husband, being a housewife, instead of working all of those years, my income isn't as much as I'd like it to be. My husband also works out of town for months at a time and I used to go with him. If I could have drawn my husband's it would be quite a bit different. I'm hoping that when I hit a certain age that I can in fact draw on his. We've been married for 21 years this week.

    My life has changed so drastically since this happened. For the last 4 years I haven't been able to travel with my husband, I have to stay home alone, and lonely. I realize that I've kind of bounced around on the subjects here, please excuse me for that. I keep getting interrupted, my pizza arrived, my cat is hungry, the phone has rang, etc..

    You mentioned that you have severe pain when you walk. Is this pain in your back or your legs? And have you gone over the edge? I don't think so! As I said, I have the same concerns. They are not crazy thoughts, they are valid. I just hope that both of us are wrong. And BTW, many of us have heard the same ole, same ole, it's in your head! I hate that saying! I feel doctors say that because they can't be honest enough to just say "I don't know". I would prefer I don't know. I take Lexapro for depression, depression is very commen for people who suffer with chronic pain.

    I had better go but I just wanted you to know that you are not alone. I'll check back and see how you're doing. Feel free to send me a pm anytime, I'll answer anything that I can or just let you vent.
    Take care of yourself,
    Jewels
  • That cyst sounds huge and your MRI shows more than enough reason to explain your pain. If you are not happy with your NS responses, get a new one who will take it seriously. Good Luck
  • Thank you all for your insight, suggestions, etc. I wish I could put into words the comfort it gives me(as I sit in pain LOL). I guess talking with others who know really does wonders. I hope to talk with my NS on wednesday and find out more. Just getting ahold of some of these doctors is a pain in the arse.
    Again thank you. I will keep reading the info on all of these pages and hope to learn more.
    God Bless you every one.
  • lucan - I hope the NS was able to answer questions about the large cyst and maybe have a solution..take care..jade
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