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Mar 24, 2009 - 6 comments



tarlov cysts

I am in so much pain tonight I feel like someone is cutting through my sacrum! This pain is so unbelievable! Today I tried to stand and fold clothes in my bedroom it lasted maybe 3 minutes! I am having to sit basically everytime I fold clothes. Putting them away and hanging them up is a job Too! Doing the supper dishes which is rinsing the dishes and putting them in the dishwasher is almost too much! For most it would probably be too much!!

I cant even clean house anymore. I try to do what i can but the pain is Not worth it! Thank God My fiance is so understanding and caring and doesnt mind at all to help when he can! (Bless His Heart)! Not to mention "SEX" the decrease in intrest because of this horrible pain is about down to nothing!!

Last night I cried and cried because this pain is depressing me so bad!! My fiance just held me and let me cry! I can just barely do anything  anymore. In all seriousness A wheel chair would help me alot I think. Though sometimes sitting completely flat on my bottom causes the pain to increase so i sit forward to take pressure off my sacrum! This is just insane!

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803891 tn?1237946240
by kariered, Mar 24, 2009

I am really sorry that you are in so much pain! My fiance is in great amounts of pain as well. Honestly, I can't even imagine what it all feels like, to sit down because you hurt, then that making your bottom hurt too. It sounds scary and frightening.

Just hang in there. You're a trooper for even getting out of bed.

771990 tn?1341779376
by virtualangel, Mar 24, 2009
Thank You So much for Your message and encouragement! It truly means alot to me!


Avatar universal
by anaisanais, Mar 25, 2009
To virtualangel, please be assured you are not alone with this,  have you seen your doctor yet?  It sounds like what I suffer with, and when you try to sit down it feels like your spine wants to push its way through pressurising on your coccyx and bottom.  I suffer with my back and need for that condition to sit up realy straight and causes extreme  pain if trying to relax... this problem you describe is the opposite and needs you to relax and get slouchy and comfortable.  It's a nightmare not being able to sit down, and a wheelchair makes sistting worse.  I'm sorry but as yet I've not found an answer and I'm already on lots of medication for my other problem.  The only comfort I find is from lots of oramorph and lying down...  but then we are all different.  Just try to remember that pain is natures way of stopping us doing more damage to an already troubled area.  This said even when we find things we cannot do and learn to do things in another way we are human, and still try to push to our limits stupidly forgetting and starting the whole scenario over.  I know its hard but in time you will learn to do things in new ways or find new interests.  I find writing poetry takes my mind away, helping distract me a little, as does crafting which I now do to make cards when I can and how I can for charity.  Things do take longer and pain can control your life completely if you let it... I didn't know I could write and have only been doing these things for a couple of years, turn negatives of I can't do this that and the other to if I can do iut another way or find something new I can do instead to replace the time I would have done something else....  The I can affirmation stage helps you in accepting conditions and gives you back a little quality in life.  Make sure you see that doctor and if he /she cannot help ask to pointed down the line of pain management if you are not coping.... Good Luck, I wish you well....

771990 tn?1341779376
by virtualangel, Mar 25, 2009
Hello anaisanais

Thank You for your message! I see the Dr today actually! I have what they call Tarlov cysts and/or perineural cysts. I have one on S1 - 1.75cm and one on S2- 1.20cm. An MRI  discovered the one on S1 in 2006 and it was then a 1cm. My last MRI was the beginning of this month (Mar 2009) and it is now a 1.75cm plus the new one which like I said is 1.20.

This pain has just increased. I have been sent to a neurosurgeon finally this month but He said after doing a surgery on a Tarlov cyst He said He would NEVER do it again! It is very hard to find a surgeon who wants to work on these cysts!  But the search is on to find one. I have been given the name of a Dr.Some people do well with surgery and some it makes worse from my research on it.

Yes positive affirmations will help me I am sure. I had another friend remind this week to not say I can't and instead say I will try. But as You said knowing what your limits are and not pushing them is such an important factor!

Yes I am learning slowly it seems to do things differently! To slow down my pace...ect... It is hard to being so young and having these difficulties! (I am 48 on the 28th). I do know that there are many just like me and many even worse off than I am. (Bless their Hearts)!

I am trying so hard to find balance in doing exactly what you described in your message to me! I appreciate your feedback and hope to hear from you again soon!  My pain this morning is tolerable at the moment but I just got up about an hour ago. I can feel it creeping in already. I hope you have a good day and that your pain level is tolerable.


Avatar universal
by Marin600, Mar 25, 2009
Hi.  So sorry you're in so much pain.  Please, please check out as soon as you can.  Check every feature on their web site, to learn as much as you can about them.  It will take a long time to go through all the testimonials (with photos) of people who've gone there.  Don't permit cost to be an issue.  Borrow money if necessary to have them help you.  Your back is a whole lot more important than a car that won't last your lifetime, and you'll have your back, no matter how good or bad it is, for as long as you live.  If anything is worth borrowing for, it's your back.  (And if you count up the total cost of all the cars you'll have during your life, they'll cost far more than this surgery.)  They'll check out your MRI at no cost to you, to determine if they're able to help you.  Do it today, so you can go to sleep with hope in your heart tonight.  Please keep us informed as to what goes on with you.

Avatar universal
by wilmar2, Apr 14, 2009
hi ,donna  its marge.i havent heard from you for a long while are you any better?, i have had a bout againpain .trying to get help but daughter son in law 2 grown up sons came for 4 days from london to visit but i was ill .we hwve nice eather now i dont think i can go out on my scootermuch more the roads are so bad all bumps  jar my backi have only just bought it as welli am so lonely  i have 2 cares come twice a day but they stay half an hour i have slept most of the day its 11 pm now  i have a friend next door she helps when she cani live in abig house  but i would like to get back to london must go now love margaret green willmar2


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