echo
New Member
Posts: 4
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Post by echo on Sept 24, 2015 5:38:01 GMT -6
HI Diane, Yes, mine is extradural, so it sounds like there is a stem. I have had a cinematic mri which showed no pulsation at t4-t5, but the cyst extends down 6 vertebrae. this means about a 4 level laminectomy (I don't know if they will do more) which then creates spinal instability and would require another surgery to stabilize with plates and screws, at least this was from my GW consultation. Johns Hopkins wouldn't comment on his surgical strategy until I get a Myelegram cat scan.
I called Mark Shaffrey's office and they require a "referral" from my doctors with all their notes/records before I get an appointment, I meet with my team at GW the first week of October so I hope to start connecting with Dr. Shaffrey after that . Did you have Hyper active reflexes? I do - just wondering if this is because of my compressed spinal cord.
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Post by diane on Sept 24, 2015 9:03:03 GMT -6
Yes, I do have hyperactive reflexes - if your spinal cord is compressed your reflexes "take over" to make up for the diminished connection between your brain and the part of your body below the compression. Getting a myelegram cat scan isn't a bad idea - it could provide a little more information as to what's going on - and it's no big deal, really. Surgery for an extradural cyst is different than an intradural cyst because it doesn't involve a dural incision, just a laminectomy, so your spinal cord won't have to be exposed during surgery, which is a good thing. In the mean time, avoid strenuous activity. Anything that involves straining (such as lifting weights) forces more CSF into the cyst and will enlarge it.
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echo
New Member
Posts: 4
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Post by echo on Sept 26, 2015 19:29:12 GMT -6
it's nice to hear some good news (extradural) Diane. What was your experience - was it ok for you to ride a stationary bike without making things worse? I haven't discussed do's and don't's my doctor because I have been more focused on how to remove it. Have you heard of anyone who has had heart rate affected by the pressure from the cyst? specifically tachycardia? How about other secondary symptoms such as easily dehydrated, sleepiness, easily exhausted, heat sensitivity....
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Post by diane on Sept 26, 2015 21:01:27 GMT -6
My experience was (and still is) that any real exercise made things worse. If I were you I'd take it easy at this point - do things you enjoy with the people you love. If it makes you feel any better, I haven't been able to work out for 20 years and I never gained weight because of it. Symptomatic spinal cord arachnoid cysts are pretty rare. You're only the second person I've come across in all these years who's had one. I never had a problem with tachycardia but it's conceivable that it could be caused by the compression of your spinal cord at the T4 level. I did however, have a terrible problem with fatigue and sleepiness. In fact, I suffered from profound, debilitating exhaustion. Fortunately, it went away after my surgery and hasn't come back (fingers crossed) although I still tire more easily than other people. I am also very sensitive to heat. I don't know about the dehydration - I hadn't given it any thought - but I do drink a lot of water and always have a bottle of it with me.
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Post by diane on Oct 4, 2015 17:36:55 GMT -6
Hi Chrissy,
Just to let you know (in case you're looking at the website without being logged in) - I saw your message and left you a reply.
Diane
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