Thread: newly diagnosed
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Old 03-03-2013, 03:53 AM
billde03 billde03 is offline
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Join Date: Mar 2013
Location: North East Indiana
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10 yr Member
billde03 billde03 is offline
New Member
 
Join Date: Mar 2013
Location: North East Indiana
Posts: 1
10 yr Member
Default Also living with epineural or "Tarlov" cysts.

Quote:
Originally Posted by samsonjake View Post
Hi. My name is Shelly and I was just diagnosed with Tarlov cysts. I'm feeling frustrated, mad, while at the same time ecstatic that I'M NOT CRAZY! I currently take Celebrex, Requip and Tramadol for the pain. Not sure any of it works. I started Lysine today. Was told that there really isn't anything that I can do except go to a psychologist and learn pain management mentally. Going to neurologist this Thursday and am going to present my findings on here. I have little kids, a part time job, and I'm only 37, which I was also told that I'm very young to have been diagnosed with these. Worried about how I'm going to feel when I'm 60 when I'm in this much excrutiating pain at 37. Thanks for listening.
Hi Shelly,

I've been in extreme pain for the past two years and recently found out in addition to the herniated disc and spinal canal narrowing that I also have one of the perineural cysts. Mine is located at the L5-S1 area which is the lower back right above the tailbone. I am actually newbto this forum and havnt posted anything yet but when I read your post I had to respond because my experience has been similar. Two years ago I went to see an orthopedic surgeon because of the intense pain I was in. He orderes an MRI and said I had a herniated disc that needed to be operated on so I had surgery to remove part of my herniated disc because of the intense pain I was in. Afterwards I was still in extreme pain and at my post op visit the surgwon became confrontational and told me there wasnt anything else he could do and discharged me as a patient. I spent the next six months in agonizing pain having no idea what to do until I finally went to see my family doctor and she prescribed me 30 mg oxycontin xr tablets twice a day. These held my pain back for about a year until recently the pain began to become intolerable to the point I was almost suicidal. My family doctor ordered me to see a pain management specialist who reviewed my past MRI and told me that the previous surgeon failed to tell me about the perineural cyst. So he prescribed me some Lidocain patches to be applied in the area I had the surgery at and that I need to have an expedited MRI and CT scan to see how the cyst has progressed and if any other issues have arouse from the prior surgery. This was three days ago when I saw the pain specialist and these lidocaine patches have helped. Im still in pain but its not to the point of being hopeless. I would highly reccomend asking your doctor to let you try these patches, they are non narcotic and are similar to novacaine like dentists use. I go to see the specialist again thursday and will give you and update of what he reccomends. Like a previous message states check out the foundations website to get more information abiut Tarlov cysts and possible treatments. Most doctors will not recommend surgery unless they are actually permanently damaging your nerves or other organs but if they do recommend it make sure its done by a neurospine surgeon.
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