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Spinal arachnoid cyst
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maggieslooking posted:
I have been diagnosed with a spinal arachnoid cyst. I am confused by my symptoms because I also have a L4 and L5 S1 disc injury from a fall. My cyst is large from L5-T11 and there is some compression of the spinal cord. I have numbness in my lower left leg and tingling, hot flashes in my left foot. My right leg gets tingling sometimes. I lose balance on a rare occasion but never fall. This whole thing started when I fell down some stairs and landed on my butt. I am faced with the decision to have surgery or to wait and monitor the cyst. I have decided to wait and monitor the cyst and let my back heal from the fall and see if everything clears up. Anyone have any advice?
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bj1208 responded:
Hi Maggieslooking - welcome to the support group -

You post does not state if this was a work related injury - if it is then did you follow through and file a worker's comp claim?

You didn't say what type of doctor(s) you have seen - I would suggest that you get a couple of opinions - from either an Orthopedic Spine Specialist or a Neurosurgeon Spine Specialist - be sure to take all your films/reports - these types of doctors are the best at reading the results (Neurologist too but they are not spine specialist).

Once you see the Spine Specialist you can get a better idea of what you are dealing with and they will also let you know what the best treatment plan is which may include Pain Management / Physical Therapy / Chiropractic treatments. You will have a couple of opinions to go by which I believe is what you need.

Please let us know what happens - take care - Joy~~
 
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maggieslooking replied to bj1208's response:
Hello, I did see a neurosurgeon. I took my 4 MRI's with all the reports. This was not work related, I was on vacation. I have an orthopedic problem and I am going to physical therapy (injured L4, L5 and S1 discs.) As an incidental finding, they found the cyst pressing on my spinal cord.(unrelated to the disc problem) The neurosurgeon says he leans toward surgery. I am wondering if there is anyone out there that has had an arachnoid cyst with spinal compression that they just decided to watch and treat conservatively and if so, did id grow? and did they eventually have to have surgery?
 
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bj1208 replied to maggieslooking's response:
Hi Maggie -

Neurosurgeon's tend to suggest surgery to fix just about everything - don't get me wrong - they are great physicians/surgeons but they do tend to suggest it more than Orthopedic Spine Specialist -

You indicate you say a Neurosurgeon - was he/she a Neurosurgeon Spine Specialist? There is a difference so you do need to be aware of this.

I would still get a couple of opinions to see what your options are -

Here lately, there have been a couple of postings about arachnoid cyst or some type of cyst on the spine - there is a spot at the top of this page that says: Search This Community - you may want to put that in and see what posts come up.

Here is a link that may help you understand the condition:

http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm

Hope this helps - take care - Joy~~
 
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EWoods45 responded:
Hi agieslooking,
I to was diagnosed with an arachnoid cyst on my T-10 to L-1. In my attempts to research a picture of the cyst you really can't find one. It was only after talking to others did I learn about questions I should have asked prior to my surgery. I should have asked being that it is an arachnoid cyst just like a spider it has tintickles or legs were they intertwined in with any nerves or tissues if so what could be done ? Being that my spinal cord was not closed completely could I have permanent nerve damage already ? What was the weight and growing rate of the cyst ?. I had my cyst removed in March 2010 and til this day I have not regained any of the feelings back in my leg
 
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maggieslooking replied to EWoods45's response:
Dear EWoods45 Please tell me more. Did you have numbness before the surgery? How did you come about finding that you had the cyst? what kind of surgery did they do? laminectomy? or endoscopic?
 
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icanwalk replied to maggieslooking's response:
Hi maggieslooking, I just happened on this page and saw that you have responded recently. Hopefully you will see this message.

I recently had surgery to remove an arachnoid cyst, 3 to 4 inches long, along T11, T12, and L1. It had grown over time (5 to 10 years) and compressed my spinal cord all the way to the right.

My symptoms showed more severely a year prior to my surgery. Much of what I experienced prior to that I wrote off as just not feeling well and fatigued. I also attributed much to getting older. Unfortunately my legs were losing motor ability, I was in incredible pain in my spine and legs at times. Much weakness in my legs, much spasming (contracting) which restricted movement which only worsened. Overall I just felt sick as well. Just before surgery I was reduced to lying on my side for most of my day, too painful to stand or sit. And generally didn't have the strength. Needless to say it altered my life and my children and husband's lives completely.

For nearly 7 months (after blood tests showed nothing) my GP summed it all up as fibromyalgia.I finally saw a neurologist, which I pushed for, who did an MRI and found the cyst. It wasn't until after the successful surgery that I realized how sick I really had been. I had so much pain below my waist because of heightened pain sensitivity. My walking was very difficult. My legs just couldn't do what I needed them to do. It was exhausting. I was sick to my stomach and had much pressure in my head. If I lay on my back I felt like I was being sat on and my head began to hurt. Same when I sat up for more than 10 minutes. My legs were very heavy. I had pain in my bladder and in my intestines, everything was sensitive. I also napped almost everyday, for an hour or two even.

All of that is gone now. I walk well enough but have some constriction of muscle flexibility and quad weakness. But so much better than before. People used to ask me if I had MS, and tell me that I looked like I was marching. My neurosurgeon called it "slapping." Slap walking I guess. All of this really debilitating stuff happened within a year. I was a very active person prior. I don't nap anymore. My head pressure is gone. My spinal pain is gone. My nausea and general feeling of not being well is gone. My legs don't hurt at all. They just get tired or can't do anymore because of weakness from nerve damage and I can only walk about 1/2 to 3/4 mile before it starts getting really hard and my muscles need a break. It is still a bit difficult to lift my legs to get my pants on. But I am so happy now. I'm not sick anymore!!! I feel good.

Before the surgery I also lost my balance with my eyes closed and had to really concentrate when walking, it was sensory motor loss in my toes that caused that. I had a laminectomy. My neurosurgeon was excellent. I'd go back to him again. Another specialized neurosurgeon said she would not do the surgery because it was too risky and said she couldn't be sure my symptoms were due to the cyst. Had I listened to her I would be trying to survive a torturous existence and have lost even more abilities because of nerve damage! But my guy was confident and proved true in my recovery and the recovery of my life. I thank God for him everyday. He knew what he was talking about and had the experience and skills to handle my case. Not to say there isn't risk involved, but I didn't have a choice. Had I known sooner, I might have less damage than I do, and suffered less. But, knowing what I know now, how risky it was, how well I healed, and what an excellent surgeon I had, I feel extraordinarily fortunate, and am grateful to Jesus, who walked with me every step of the way. If you want to talk more, and I can help you in some way, please let me know.
 
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maggieslooking replied to icanwalk's response:
thanks for your reply. please tell me more about the progression of your symptoms. my symptoms are so mild it is confusing. i still hike, work out and i am not sure if i should have surgery or not.
 
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maggieslooking replied to icanwalk's response:
how old are you? i am fifty
 
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spinemouse replied to icanwalk's response:
I am looking for a surgeon that specializes in thoracic lumbar arachnoid cyst. I have one that we (my friends and family )refer to as "the big dead mouse in my back" T10-L2 arachnoid cyst that is compressing my spinal cord flat. Leg weakness, numbness, motor coordination difficulties, and the sensation of water dripping in the muscles in my legs. Who was your surgeon? I work full time with special needs kids and I am wife and mother of three great kids. Functioning is getting more and more difficult everyday. I had surgery Nov 2010 and in less than 4 months the "mouse" filled back up and increased in size where he did the laminectomy. Anybody out there have any advise.
 
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bj1208 replied to spinemouse's response:
hi and welcome to the support group -

unfortunately, per WEBMD's guidelines we cannot list any physician names, hospitals and/or personal contact information -

however, at the top of the page is a place to look for specific physicians - just put in the information and it will assist you in locating physicians/surgeons in your area -

good luck - keep us posted - take care - Joy
 
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aracnoidcystteen replied to icanwalk's response:
hi,I have a 17 year old daughter who is living in chronic pain with a aracnoid cyst that is from T4 to T9. she is 17 now and has had two surgurys to put shunts in. Her condition continues to destroy her life, she has a lot of nerve damage and lives in constant pain. Her first surgury was when she was ten. last surgury was last september. Everyone doctor i see says there isnt much more to do. Im reading on here that you have had it removed, please give me some quidance. I watch my daughter suffer daily.
 
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bj1208 replied to aracnoidcystteen's response:
Hi Aracnoidcystten - welcome to the support group -

I just wanted to say that you are responding to ICANWALK's post from 2 years ago - this was the last time we've heard from this member.

you can start a new discussion with a header of; ARACNOID CYST HELP - just click on: DISCUSSION at the beginning of the page and list the problems your daughter has and what questions you have.

I'm sure we have other members that may be able to help.

I'm really sorry your daughter is having so many problems as young as she is -

take care - Joy
 
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bj1208 replied to bj1208's response:
Hi Aracnoidcystten - that should be at top of page; POST NOW


LOL they made some changes and I didn't notice this!


Joy
 
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GRIDLEY replied to bj1208's response:
I had an arachnoid cyst for years and suffered since high school . I started at C8 to T10. I had successful surgery at age 442. Before then I was just told I was a hyperchondriac. It was found after a doctor did an MRI thinking it was a disc problem inn 1999. Surgery for me was not optional. It hurts like hell but life is a lot better now than then. All surgery is dangerous so I would not have it unless my quality of life was very very bad or I was in danger of death or paralysis. That said everybody is different.


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