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Arachnoid Cyst on Spine
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Karen29706 posted:
Hello, I am new at this message board and wanting to know if anyone here has ever heard of this before ? I have has this Arachnoid Cyst on my spine for 3 years now. I applied for SSD and i don't have any health insurance. I have not been able to work for the past 3 years. Thanks so much for any info .. Karen in South Carolina
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Dot40324 responded:
Hi Karen. Welcome to the board. I did a little reading on this but don't know of anyone who has it. Sometimes it takes awhile for all to see a post so you might still get more info.

Where on your spine is the cyst? I know it's hard when you don't have insurance but have you seen a spine specialist?

Please feel free to stay with us even if no one else has this. It's a great place for support when we are in pain or just need to talk. I look forward to learning more about you.....Dot
 
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Karen29706 responded:
Hello, Thanks so much for your reply. I have been to several specialist and they done several MRI'S and they said its on my Thorasic spine. I have read so much about this and alot of it does not make any sence to me. I just need to know what i can do for the pain. I am on Muscle relaxers but thats it. I have a doctor's appointment today at 10:00 am for the pain which is getting so much worst. Karen
 
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Dot40324 responded:
Oh Karen, I do hope the Dr. will give you something for your pain. I'm sorry I don't know more to tell you. Could you let me know what the Dr. says today? .......Dot
 
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caroldp responded:
Hello Karen, and welcome to the board. I think you will like it here as these folks are very caring and helpful. Even if no one else has the exact diagnosis you will find tons of support for what you are going through.

What little I've read says that most people are born with these cysts and that they are fairly uncommon (lucky you, huh?). There are things that can be done surgically to help if it is pressing on your spinal cord and causing symptoms. Do you have any weakness, tingling, burning? Do you have any other spinal problems such as bad discs?

Being without health insurance sure makes it hard on people like us who need expensive health care.....and there are way too many of us.

I am hoping you will return after your dr. visit and let us know what he had to say, as well as to answer some of the questions about symptoms and/or other problems. Hopefully this dr. will give you some medications that will at least help with the pain.

Carol
 
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Karen29706 responded:
Hello, Well i seen the doctor this morning and he wrote me something for the pain but i cannot get it till tuesday. This doctor is in our area for the poor people out there with no income and no health insurance.He could not write a perscription for a narcodic. He really felt bad because i could tell he wanted to help me and he said he wished there was something else he could do for me. I was in tears the whole time i was in there. He will send my info to the SSD people and they will look over it. I know they will turn me down the fist time. So i need to start looking for a lawyer soon for SSD. Social Security Disability. Yes i have all those symptoms as above, The tingling, feels like pins and needles in my legs. And alot of weakness in both legs too. I have read this is a very rare thing to have.And lucky me i have to have it. Hope to talk to soon. I will keep a lookout oh here and see what you guys say. Thanks so much !! Karen
 
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Dot40324 responded:
Thanks for the update. Oh I wish I had more suggestions for you to try. I'm sorry though I don't. Yes, most people are turned down their 1st time trying for SSD. I and my hubby were 2 of the lucky ones. Both of us got it the 1st try.

Don't give up on the SSD though. There are very good attorneys out there who will be able to help you.

Post anytime you feel like it. There are a lot of us here who cannot work and are on and off the computer most days. Sometimes it helps to talk to others who really DO know what chronic pain is like even if our problems aren't in the same area...........Dot
 
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grampaphil responded:
Hi Karen,

Sorry to hear of your dilemma. I don't know much about this. I would not assume you will be turned down by SSA. My wife went on disability some years ago without the need of a lawyer. But, I would not discourage you getting one if you think you will need one.

I am not trying to be nosey, but, as far as no insurance, have you tried to get aid from the state health dept. or county office on aging and disability or a teaching hospital with a clinic near you? Some states like ours in New Jersey have these programs for people with limited income and no insurance. Your state may have similar programs.

Wishing the best for you....Phil
 
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Karen29706 responded:
Phil, We don't have anything like that here in South Carolina. Just a free clinic that i go to for my free meds and to see a doctor when i need to. Karen
 
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slappy17 responded:
Hello I am new here but am suffering from similar problems. Only difference is that I am in Canada and my injury happened at work so workers comp is taking care of all meds and everything. I have been to a neurosurgeon twice (same one) the first time I saw him he did not even comment on my cysts and then two months later I got called back in out of the blue and then he said don't worry about it we will do another mri in Nov. The pain is getting worse...well maybe not the pain but the numbness and weakness in my leg mostly the right but sometimes the left...I can't sit, walk, stand for more than 5 minutes...laying down isn't too bad but i have to change positions often. I have been doing physio since january with no response and the pain meds I have tried have done nothing...celebrex, tramadol, naproxin, hydromorph contin, now taking amitritpyline daily and percocet as needed but it only numbs the rest of me doesn't really take the pain away...Not sure when any of this is going to end...I know physio and my family doc said they thought that surgery would be a go but the surgeon said there was no reason to operate. My MRI results are as follows Results of first MRI - Facet joint osteoarthritis from L3-L4 to L5-S1 bilaterally - At L5-S1 there is loss of intervertebral disc height and desiccation of the disc. There is a disc extrusion into the right neural foramen and this is in direct contact with the exiting nerve root. There is generalized bulging of the L5-S1 disc as well. - There is a cystic lesion seen in association with the right S1 nerve root in keeping with a perineural cyst. It measures 1.1 X 1.6 cm. There is another lesion which measures 1 X 1.8 cm within the left neural foramen at L1-L2. It extends posterior to the conus. There is discontinuity of the ligamentum flavum at this level. Lsion demonstrates low signal intensity on T1 and high signal intensity on T2 - Impression: L5-S1 DDD with a foraminal disc extrusion which is in direct contact with the exiting right L5 nerve root - Cystic lesion in the left neural foramen extending into the spinal canal at L1-L2 query perineural cyst??.

Was called back in for MRI with contrast because of cysts and these were the results

There is a dumbbell shaped lesion of fluid signal intensity in the extradural space at L1-L2. It is located along the left lateral and posterior aspect of the spinal canal and conforms to the shape of the canal measuring 2.3 cm tranverse X 2.3 cm craniocaudal X 1.0 cm anteroposterior. It extends towards the proximal aspect of the left neural foramen but not into the neural foramen. It is not clearly associated with the nerve root. There is no enhancement following the administration of IV gadolinium.

This lesion does cause some mild mass effect on the conus medullaris and nerve roots forming the cauda equine, although overall there is no significant central stenosis. There is potential for some encroachment of the left L1 nerve root in the proximal foramen.

At T9-T10 there is a right paracentral disc protrusion mildly deforming the right anterior thecal sac and right anterior cord, but without causing central stenosis.

The remainder of the exam was unchanged from the previos.

Opinion ? Extradural simple cystic lesion in the left posterior canal L1-L2. This is most likely an arachnoid cyst. An epidermoid cyst could also be considered in the differential but would be rare.

Not sure but to me 2.3 cm X 2.3 X 1.0 cm is pretty big maybe I am wrong what do I know except it hurts or something does...Not sure if pain meds will help you. And the good stuff is addictive so thats no good either...Hope you will find answers soon....Good luck! Brenda
 
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Karen29706 responded:
Slappy, Hello, I have not been here in a while and just read your post. So you have the same thing i have ? You are the first person that i have run across that has this ? Did they tell you how you got this Cyst ? I have read online that its very rare and most people are born with it. I got turned done for my DDSI so i found a good lawyer that has been dealing with SSDI for 25 years. We are gonna appeal this and see what happens. I will probably get denied again. SO you are saying your cyst happend witha injury at work ? Have you had your surgery ? Please tell me more about this. Its very interesting !! Thanks so much.. Karen
 
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slappy17 responded:
Hi Karen,

My cysts were discovered when I injured my back at work and was sent for an MRI. I apparently have two of them and was really told nothing except that the doctor (surgeon) didn't feel that it was the cause of my pain and we would do another MRI in Nov to see how they are doing. Great!....I have herniated disc in both L and T area. Most of my pain is in the lower region going down both legs and causing alot of numbness etccc...Not sure if it is from the cysts but I don't think they are helping. It is strange to me that the doc is not too concerned about it...considering the difference in size from one MRI to another. They were only a month or so apart and it seems that they grew in this time...alost double...Scary. I am trying to cope with it and will see in Nov I guess..I am heading to another specialist at the end of Sept...a physiatris apprently she isn't very nice but neither am I at this point. I have been off work since Dec 07 and have an extremely unsupportive husband who cares about nothing less than me going back to work asap....News to him I have just returned from doc and am off until at least Oct 31...I will not be returning to my old job as a Personal Support Worker since they have no modified work....I will be retrained to do something else at WSIB's expense I guess..Sucks to be me since I just finished college (for the second time...career change) in May of 07 and now have a hefty student loan..... Oh well...That's about all I can tell you about my cysts...Doctor never even mentioned them the first time...But it does scare me since my mom just passed away of cancer..(nothing related to this but who knows). Take care ...chin up Brenda
 
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cp82107 responded:
I understand what you are going through. I had arachnoid cysts removed off of my spine about 2 years ago after months of suffering. Cysts were removed from T5 all the way to L5 which is basically, the entire spine. It was one long hell and close to over a year of recovery and therapy, but I am better now and am glad I had that surgery. I know it says you are in north carolina, but if you are willing to take the risk for your health, Yale New Haven Hospital in New Haven CT has an amazing spine surgeon who saved my life from the arachnoid cysts. And about insurance, they will work out a plan with you. I hope everything turns out good for you, and good luck.
 
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mander5 replied to cp82107's response:
hi cp82107...I have an arachnoid cyst from T2-T6. Who was your dr. Also what symptoms were you having? Is that all they did was remove the cyst and did symptoms go away for you? Thank you
 
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cys_32 responded:
Hello, I was diagnosed with it after my car incident and was told I was born with it. But I dissagree. I have experienced pain like never before so if that was the case,, why after my accident is when Im starting to feel it more. However they said it's always been there and the accident just irratated it but i still don't think that's true...how did you get yours....let me know what you think???


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