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New member, diagnosed with HUGE subarachnoid spinal cyst

Hello all, my name is Kevin. I came upon this forum after my diagnosis and subsequent research. I'm 28yrs old and please pardon me as I'm frightened, angry and feeling helpless all at once! Plus very confused. Also please excuse spelling errors as I cannot feel my hands!
To make a whole story, I was involved in an automobile accident, where I was rear ended by a girl texting on her phone at 50mph when I was at a dead stop. I looked in my mirror to see the car flying towards me, and out of sheer instinct I pulled myself forward, trying to get away from it I guess. The car struck, I flew back and slammed into my seat than managed to regain control of my car. My back and neck hurt, and was diagnosed with whiplash after a couple of xrays.
Within a few days I noticed some unusual bathroom problems, along with a piercing pain throughout my back. I've always suffered migraines too however it stayed constant and no relief has occurred except with morphine. Plus my hands and feet became numb as if they were asleep, my left leg began losing strength and I began seeing and hearing things that are not really there. I've been nauseous and my moods were extremely unstable, especially being irritable.
I brought this up to the doctors who continually blamed the narcotics I'm on. I'm a 100% disabled veteran from the USMC and suffered numerous injuries during my duty. Needless to say, I've become keenly aware of the side effects of narcotics and I've had none of these!
Fast forward a couple of weeks and I finally found a doctor who was compassionate, as she was in a car accident and didn't treat me like a plague. She became quite alarmed and sent me to an ER outside of town. After many tests and a few MRIs I finally had a verdict - a very large (no specifics were given) subarachnoid cyst spanning from the base of my brain to the small of my back that is pressing on my nerves and brain. When I asked for details none were given, so I'm still trying to figure that out!
I'm due for a consult on Dec. 17th with neurosurgery, and no one will answer me over the phone.
If anyone can please help despite my lack of details, should most of my symptoms improve when it's drained? What are the most typical routes to taking care of such a thing? And are there risks involved with the surgery?
One doctor claimed to see cysts in my brain too (aside from the aforementioned base pressing one) however I never got a straight answer on that. Would that cause sight and hearing abnormalities, like the things I'm seeing and hearing? So far that looks unconfirmed.


  • Sorry, forgot to post the big dirty question no one wants to answer. I just want to know for my own knowledge too. Before this accident I was a little banged up but still could work. I was an auto mechanic so it was tough, dirty work too! I had headaches, some general desensitization due to being a metalsmith / blacksmith and suffered from bipolar type 2 disorder. But everything was manageable. After this accident my wife has to help me get dressed, I spend most of my days laying around due to pain and feeling sick and the everyday things I used to do on a daily basis typically require help.
    But I never had that weakness, numbness, any of that until this accident. I understand that these cysts typically occur at birth and are genetic however no one in my family has had such a thing, not once has any of these occurred in my life before, and now my symptoms and progressively getting worse. I have this raging suspicion that this auto accident either caused this or aggravated a pre existing condition. The doctors I asked this to either went to see if another doctor could answer it, or just told me it was an incidental find. Somehow...this occurred right as the accident occurred!
    I would like to know if my suspicion is right. I'm not going to use the answer in my claim, or use it maliciously...I just want to know. I want to know to make peace with my own mind.
  • Hi Metal, I too had an arachnoid cyst on my spine. It wasn't as big as yours by any means but I do have some input. Mine was from T-3 to T-5. I was told by my surgeon that it was probably there from birth but until Oct. of 2012 it was not symptomatic, I didn't even know it was there. I bent over one day and it felt like a rip through my left breast. After ruling out the big C I had an MRI that showed the cyst and showed that it was compressing the nerves running to the breast but I had no back pain at all at that point. Doctor recommended removing it since the symptoms lined up with the cyst. He said full recovery was likely. Well, Jan. 31st of 2013 I had surgery to remove it and now not only still have that pain but am now stuck with horrendous pains in my back, not even where the surgery was. I also suffer emotional troubles, urinating issues when I become stressed or am in big pain. I never imagined this would happen. Doc said it was a big surgery and came with risks but I guess I didn't think this would happen. Now I have issues with docs helping me. I see a new one at the end of the month but I think I'm stuck with it. Look up central pain syndrome, sounds like you may have that to some degree already. That's what I have now and it's indescribable. I don't know how they would treat yours since it's so big, I would like to hear how you're making out, these cysts are rare and it's hard finding someone who can relate!
  • Deborah1957DDeborah1957 Posts: 2
    edited 09/16/2014 - 9:40 AM
    Hi, I just found this site and feel some relief that I am not alone. I had a subarachnoid hemmorhage back in 1990 and was paralyzed from the waist down when I went to the ER. After 31 days in the hospital with no surgery done or anything, I was told "Pray it doesn't happen again". I walked out of the hospital. Well here I am for the past 12 months trying to find out what is going on since I had a problem with a muscle in my back and they found the cyst again on the MRI. I had the report from when it happened in 1990.I have been told that it's been so long that it wouldn't be an issue but finding that is not true since I am having trouble with my legs feeling weird so they put my on gabapentin. I have the report for this last MRI saying that the cyst is pressing on my spinal cord and displacing it. I go to the Neurologist on October 3rd and I think he will tell me that I will be paralyzed again which I'm okay with but if I would be paralyzed from the neck down-I won't let that happen. This waiting for Oct 3rd feels like it is so far away that I have a hard time sleeping and being worried about what they will tell me. I have my 89 year old Father that lives with me along with my 27 yr old daughter who has some health issues but they are not too serious.My issue is with T1-T6 which I read controls from the waist down. I am so glad I found other people that know what it feels like to be diagnosed with this problem. I can tell everyone this-If you don't feel your Doctor cares about you or knows about your condition or you don't like them, you need to find a new Doctor and don't feel bad. I have been thru Nine Doctors for my muscle issue in my back and thank goodness I kept up because I would not have found the cyst was active again. I can totally relate. I am almost 57 now and I was 33 when it originally happened.
  • I am glad you found this forum because here we have a lot of members with all kinds of problems who can relate to you and provide support. You are absolutely right to encourage people to find a doctor whom they trust and who is able to help them. I am glad you found one. October 3 seems like too far away, but try not to worry too much about it, rather think how good it will be to find some answers and hopefully help. I know it is easier said than done, but maybe some meditation, or smoothing music will let you relax. Good luck,

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