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Spinal Arachnoid Cyst - You Are Not Alone

Charlottes WebCCharlottes Web Posts: 44
edited 06/11/2012 - 7:55 AM in Upper Back Pain, Thoracic
Just wanted to post this and introduce myself, and my spinal arachnoid cyst. My name is Tina and I named my cyst, Charlotte, after Charlotte, in Charlotte's Web, hence my user name. Charlotte and I are new members to Spine Health and loving it!

Charlotte accrued after an auto accident, hit from the rear, June 13, 2008. This was 2 weeks after a second right shoulder surgery, 4 screws to anchor my shoulder, and the first day I was allowed to drive. My upper body was compromised and weak from surgery, and although I didn't know it at the time, the impact caused a tear to my spinal cord. I noticed my legs were very weak, but assumed this was the stress of the accident. Boy was I wrong! As time went on, I would wake up with my knees numb, how strange, but thought I was sleeping with my legs drawn too tight, and really didn't give it much thought. However, as it continued and my legs grew weaker, I decided it was time to tell the doc. I was sent immediately for an MRI of the cervical. Afterwards, I was told to wait, the radiologist was calling my Dr. I was then scheduled for an CT Milligram, which clearly showed an arachnoid cyst in the T3 - T4 spine. I have had follow-up MRI's every 6 months since. No surgery has been preformed to date, however, Charlotte showed changes last November, and now occupies T3 - T6, explaining why the symptoms had worsened even more. Surgery was discussed at that time, but offered only 50/50 odds of stopping future damage, and no chance of improving the damage done. Since then, I've been on a steady decline, the pain is much worse, and I can barely stand on my own. My balance was so bad and because I was falling more frequently, I was prescribed a walker and cane. I'm schedule with my NS September 1 to revisit the need for surgery, however it may not be an option considering my weight. 5' 10", 103 lbs... skin and bones scary!

I've been on an endless search for 3 years to find any information about my injury or another person with the same injury and thought I was the only one. But, my last search landed me here, to a member recently diagnosed with the same cyst. She has not posted since I joined, and may be away due to surgery, but I'm hopefully she is doing well and will return.

I was shocked this morning to find a post to my introduction from a new member that was on the same endless search I had been on. She too has an Arachnoid Cyst and thought she was the only one! I was so happy she found me and my post had given her hope!

With that said, my main objective with this post, is to let others suffering with a Spinal Arachnoid Cyst know, you are NOT alone!!! I felt like a specifically titled post may make the next searchers task a little quicker and easier! So if you have found this post in a search, I can assure you this, you have opened a new door as I have. You will find more care, help and support within the Members of this forum than you every imagined!

To the SH Vets, please feel free to add or reply to this post regardless of your condition, as I'm sure I left out a lot of information where Spine-Health can be helpful to a new member.

Lastly, many thanks to my new friend, Truck Tire, Brenda... if you see this, I got the idea from your post in the new members forum regarding titles! That's one smart truck tire you have on your head!

Best wishes to all!



  • Howdy Tina, "and" Charlotte!! :)

    Glad to see my post helped one help another! The closest thing I have (and not even close really) is my fatty tumor whose medical name is Spinal Epidural Lipomastosis (SEL)! Apparently it isn't big enough to do anything with "right now." Personally I think part of that is true, the other is my truck tire as you so fondly call it, it is about to get a flat bed with spikes! (G)

    As you have seen yourself, you like my SEL is not common either. I'm happy to see that you are sharing what is going on with yours (err sorry, Charlotte) with others. I am sure others will pop in here with varied levels to help pool knowledge.

    Have you asked your surgeon(s) how much more damage they are going to let happen before they do something? Nerve damage is the pits, so I'm a bit concerned.

    By the way Charlotte's Web is one of my all time favorites!! Sending a buddy request. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda, you have helped me more than you know! I've learned so much from you and realize how dense I've been regarding my health. I now know, thanks again to you, I have more control than I thought, yep!

    To answer your question requires my confession... :D When Charlotte was discovered, my NS said "sometimes these things heal themselves." Guess what I latched onto? Yep, I'll be healed in a few days, maybe months, but Charlotte will heal. Queen of denial here! Unfortunately, that has not been the case. I poo pooed surgery last year because of the 50/50 odds. However, my NS's, NP has warned me a dozen or more times to consider the surgery. She has told me on EVERY visit that I'm worse! I would tell my family she was overreacting... }:) My last visit with the NP, she said to me, "I'm afraid you are going to wait until it's too late!" I did not ask her, too late for what? My bad! I sit here, at 100 lbs, kicking my own butt, and hoping I didn't wait too late. But, in my own defense, I was better just a few weeks ago. I've noticed that stress is my worst enemy, and when Charlotte makes changes, she does it fast! So, the ball is in my court! I will know more after my NS appointment Thursday, or maybe sooner if I end up in the hospital before then.

    I give up, what is an SEL? :B

    You know, Charlotte dies in the book! ;)

    Got a post here, but don't see it. :O Guessing it was removed?

    In any event, I'll continue to check back for posts here, but not wishing a Charlotte on anyone!


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  • Again, glad to be able to help. My first two fusions - I didn't know of this site, and so was in "freak" mode for both. Even though its been a number of years now, those "freak" feelings are not easily forgotten, so when I see similar on here, I try to help. :)

    SEL is "Spinal Epidural Lipomastosis". Basically we have a small amount of floating fat in our epidural space, and a few of us lucky (NOT) ones, the fat solidifies and compresses around nerves bundles. From what I could find, most occurs in the lumbar spine, a very small amount in the thoracic, and none recorded for the cervical.

    As for Charlotte's "ending" in the book (G), she died of old age, and with a smile all curled up!! :)

    Nerve damage is the big time pits!! To be fair, mine was instant when that next level went, so not the surgeon's "bad" as they say. Now I may have more do to my being lead by the nose for a bit that "I was over reacting" to what my body knew was wrong!! I won't know if I have more damage for some time to come, but as I told my new surgeon:

    "I know you can't Fix me, but my goal is to STOP progression of this mess." (Doc) "It looks like you have very realistic views of what's going on, and the likely gains, as most likely you will not benefit neurologically at this stage - but yes, we can stop further progression and stabilize your unstable neck!" The key is that you fully understand what is going on, and what the goals and options are woman!!

    I see you as a strong type. Not easily intimidated etc. You really need to listen to them as to your status. If surgery is on the table, then you go from there. If conservative treatments can help, even better, but listen to them. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You are so right, Brenda, freak mode is not easy to forget. I had a good dose today when the ER Doc said, only two thing cause this kind of weight loss, cancer or thyroid, ugg, did he really say cancer?...it was good to know it's Charlotte. He told us as we were leaving, my NS had told him, the surgery is a must now, and I will be in the hospital for a while post op. My guess is Charlotte has made another change. We'll see Thursday.

    SEL does not sound good! I have lots of prayers and good vibes going out for you, and you getting great results from your next surgery. You have been to he!! and back with your issues, and at a young age too! Your body and soul deserves a break. But, you know what I know, what doesn't kill us only makes us stronger...I see you nodding at this! :)

    Yep, you have me pegged...I'm the strong type, like you, I'm sure, the giver, not the taker. I was a single Gal, raising a disabled child most of my life. Met a wonderful man 8 years ago, and had been married 2 months when the shoulder surgeries, gone bad, started. Since then I've had 1 year without surgery, 2010. I'm blessed with 2 amazing stepsons, 12 and 16 now. They are with us half the time, so still getting kids off to school and taking care of my daughter. But now it's time for them to take care of me until I am strong again. This isn't shoulder surgery, I won't be home the night of surgery putting dinner on the table, this time.

    I look forward to when I have this whipped and can float around this board and help others! I read a lot of the stories here in tears.

    Spine-Health is so lucky to have you here, Brenda! You have a way of waking peeps up, and getting our heads out of sand! I know YOU have done that for me, and I am forever grateful!

    With that said, I don't want to take up too much of your time with so many others here in need of your help. You can chalk one up, you have me in line to behave myself, pay attention, and get it done. I will post back with updates and the news from my NS Thursday. Until then, I'll be around to cheer you on, my friend!!!

    Smiles, hugs and warm thoughts to you,
  • Tina,

    It's stuff like your cyst and my SEL that needs to end up in here somewhere for folks to find. I've found like 3 others on here with some form of SEL, but they disappear, so I have no idea what went on with them.

    The neck is first on the list *again*...lol! Like you, I'll probably be in there 3-5 days after the surgery is all goes as planned of course. I already warned the hubby the I will get my hair cut such that my pony tails will be short and not touching that scar for a while. For me, surgical scars stay sensitive for months. This one will be about an inch into my hairline down to about midway abeam my shoulder blades.

    Hopefully your NS will tell you that Charlotte has grown, and needs to be on her own away from your body! No more symbiotic relationships allowed Ms. Charlotte! (G) I know I've tried to get them to take pictures or give me parts of things they've removed, but haven't had too much luck in that area yet! (G) It's weird too, you can look on YouTube and there are tons of peoples spine surgeries on there! Grrrr.... Might try again, and since this many levels aren't common, maybe? Same for yours if your into that sort of thing. ;)

    3 more days and you should have more info woman!!! Gentle understanding support *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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  • Hi Tina,
    I never had an arachnoid cyst but I did have the symptoms you describe because my cord was trapped at t5/6.

    As I understand it, there is a correlation between the degree of impingement and the length of time the cord is trapped versus the time and quality of the recovery post surgery; i.e. once symptoms indicate a trapped cord, surgery should be performed asap to minimize any permanent damage.

    There comes a point anyhow, when doing nothing ceases to be an option as paralysis is the next stage, usually flagged by leg weakness and/or bladder/bowel incontinence.

    This is where I was when I had my surgery, which was just in time - thank God.

    Horrible decisions have to be made unfortunately, and I am glad it is not me who is having to make them this time round or ever again! (hopefully)

    Face the fear and fight it, as they say.

    I'm not young enough to know everything - Oscar Wilde
  • Thanks so much for your comment. Would love to hear more from you. Sorry I can't give a good reply tonight, and ask questions, but will tell you and others, my NS says NO surgery for now! Risks out way the odds of 50/50.

    Will post more tomorrow, hope to be feeling better and recover some thinking skills... ;) Still trying to whip an infection! Hope you'll come back too!!!

    Just wanted to drop in and say hello and thanks for your time, Mick!

    Nite all!
    T :)))
  • Wow, I'm not going to get any better and more than likely will get worse as time goes on! No fix for me, just treat the symptoms. But it could be so much worst, at least I still have some use of my legs!

    I am considered an Incomplete or partial Paraplegic, with an Incomplete SCI (Spinal Cord Injury). Now I get it... thanks Doc! Don't get me wrong, my Dr. said it after the accident, but I didn't want to hear it, and he also said I could get better. I now know, I am long past the period of seeing improvement. It's a great relief to face the facts and do the best I can to move forward and regain some quality of life! :)

    However, I'll keep a keen eye out for other members with an Arachnoid Cyst posting here! :H

  • Tina- I am sorry to hear that. Is there nothing that can be done now?

  • Nope, nothing that can be done. The odds of improvement are 50/50, and he warned, usually not that good, and the cyst almost always comes back. The tear in my spinal cord, that caused the cyst, cannot be repaired either. However, if the cyst were to get bigger, he would have to take it out due to spinal cord compression.

    He contributes the most recent decline with an auto accident I had this Feb, I hit a flying deer...LOL! AND, the stress of dealing with the PMC. Stress is a big factor and I would like to understand that aspect better. Something to do with the spinal fluid pressure. I knew I should have gone to medical school...LOL!

    In any event, my overall health is improving some, and I'm working hard to put on some weight! One day at a time. ;) Again, I thank you and the others here for making me realize how important it is to "know your injury!"

    Hoping you're doing well!

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