FAQ/Help |
Calendar |
Search |
Today's Posts |
06-08-2012, 06:43 PM | #1 | ||
|
|||
New Member
|
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.
|
||
Reply With Quote |
10-08-2012, 07:56 AM | #2 | ||
|
|||
New Member
|
I understand your fears just got the news myself....... It like what now??
|
||
Reply With Quote |
10-08-2012, 09:09 AM | #3 | ||
|
|||
Junior Member
|
|
||
Reply With Quote |
10-08-2012, 09:19 AM | #4 | ||
|
|||
New Member
|
Quote:
I sent my films to a NS at Penn and he agreed that I have these problems but declined to do the surgery. I have not found anyone in FL. I am moving to FL in Nov due to my husband's health problems - will be near Mt Dora. Shands doesn't have a NS who would do this. Nor does Mayo in Jax. U of Miami is a possibility but I think the NS there doesn't do laminectomy - only fibrin "glue" procedure which I have read does not really work. I am really worried that I will be stuck with pain management the rest of my life if there are no new discoveries about how to treat this problem. I don't know if I should name the docs here or if you should PM me. Suz |
||
Reply With Quote |
02-12-2013, 01:33 PM | #5 | ||
|
|||
New Member
|
I believe that I may have a similar problem and would like to get more info from you regarding steps that you have taken to get a diagnosis. I sent a "friend request" because I don't see where the private message option is.
This forum has been so helpful in finding information! Thank you everyone. Quote:
|
||
Reply With Quote |
02-13-2013, 07:04 PM | #6 | ||
|
|||
New Member
|
Quote:
|
||
Reply With Quote |
03-03-2013, 03:53 AM | #7 | ||
|
|||
New Member
|
Quote:
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. |
||
Reply With Quote |
05-27-2013, 06:34 AM | #8 | ||
|
|||
Junior Member
|
I am in the same boat as the rest of you, what I would like to know is how to they know what permanet damage is. Right now both my feet and half way up my legs is numb and tingling and both my thighs have extreme pain to the point that when I walking I just can't go any further and have to stop. All I want to know is if this is caused by the tarlov but doctors around here won't recognise it. I don't have the money to travel around the country to see doctors. Does anyone know if there are any doctors who actually belive in tarlov cyst that will be willing to look at someones MRI before seeing them in person? I would be willing to go to a doctor here and have one done if I knew someone would look at it for me and diagnos me or at least tell me that it could be caused by the cyst.
Katt17 |
||
Reply With Quote |
11-13-2014, 04:58 AM | #9 | ||
|
|||
Junior Member
|
Quote:
J for Timy |
||
Reply With Quote |
01-11-2015, 03:31 PM | #10 | ||
|
|||
Newly Joined
|
By now Timy should have had her surgery and I am wondering how she is doing? I am a 59 year old female with bi-lateral Tarlov cysts at S1. I will be having an MR Neurograhy in a week and will find out if there are more than just the two the MRI found. Can you tell me who her doctor was and if things have improved for her.
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Newly Diagnosed | Hydrocephalus | |||
newly diagnosed | Myasthenia Gravis | |||
To the newly diagnosed | Parkinson's Disease | |||
Newly Diagnosed | New Member Introductions | |||
Newly diagnosed | New Member Introductions |