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Old 04-07-2008, 08:27 PM
barbhelm barbhelm is offline
Junior Member
 
Join Date: Jan 2008
Posts: 6
15 yr Member
barbhelm barbhelm is offline
Junior Member
 
Join Date: Jan 2008
Posts: 6
15 yr Member
Default Tarlov Cysts - Annette

Hi Annette,

I do have more than one but not as many as some folks have, or so it seems. I do have some other problems with my back but will just mention the Tarlov Cyst findings, unless you want more, which is ok too. Here is the quote from the last MRI. “1 cm Tarlov cyst along the right S2 nerve root.. A 1.7-cm tubular nonenhancing lesion along the right S3 nerve root may represent a nerve root diverticulum or a perineural cyst. A 1 cm enhancing lesion at S2 is minimally hyperintense on the T1 weighted images and may represent an atypical hemangioma.”

That covers the number and locations. My symptoms are severe tail bone pain and rectum pain. I also have pain in my right butt cheek. I cannot sit for long without the pain increasing and my legs (both) go numb but it is a painful numb. The cysts have caused me to have to urinate more often, or so it seems. I cannot feel when I need to have a bowel movement and have had a couple of mild accidents and many close calls. I can give more details on that if you need them but it doesn’t sound like what you are experiencing. I do not have arm/hand problems at all but others, on the sites I mentioned previously, have stated they do. When that is the case, I believe their cysts are located more in the thoracic area of the spine. My pain is a hot burning pain and I walk around with an ice pack on my tail bone/lower back most of the day. I start the day on a heating pad to get the muscles loose but w/in a few hours after moving around, I have to get the ice pack. I find relief throughout the day by switching from moving/walking around the house to sitting, then to laying down and repeating the routine. I too get relief from laying down. Some on the sites can only lay in certain positions to find relief and some cannot even stay in bed for more than a few hours due to the pain it causes. I have been practically housebound since this all started because if I do much of anything, it causes the pain to increase to the point of making me sick at my stomach. I cannot do any exercises as it brings on the incontinence and I just cannot handle that. When I cannot handle the pain, I take the Rx, Norco but only at night as I cannot stand the foggy brain it gives me. It also constipates me, which makes the pain worse, so it is a balancing act in all areas. When I am constipated and have to bare down hard, my legs go to sleep/numb and the room swirls and I feel like I am going to pass out. I have the burning pain 24/7 that I try to ignore and it is exhausting and taking a toll on my nerves I believe. IF I do go anywhere, where I will have to sit, I take my pillows, one for the lower back and one to sit on. There are some folks on the sites that have a "gel cushion" and I am going to look into that but for now, the pillows allow me to sit a little longer without having really nasty pain develop about two hours later.

There are some people on the sites who have had to go on Workman’s Comp or SSDI due to the Tarlov Cysts. I can’t recall your age but some of them were way too young to have to give up their jobs but they eventually had no choice. I notice you are from ILL, there are a few other folks on the sites from ILL too.

I hope some of this has helped. Feel free to ask more questions but, again, I am still new at this in many ways. I remain frustrated because doctors do not believe these cysts cause pain, they are wrong. I do recall saying I thought surgery was the only solution, in a prior posting but I am not sure I would say that now. There is aspiration of the cysts that have given some folks relief, some for only 3 days and some for many months and counting. There are doctors who try to fill the cysts with a glue of sorts but that doesn't have a good track record and if surgery is needed later on, it makes the surgery more complicated and the results less promising.

I am watching both the talk forums and the TC Foundation sites to see how people are progressing after their treatment, before I move forward to seek help. I say that now because I have a very high pain threshold and have been able to hang on while I watch for results. There are those who do not have a choice it seems and go for treatment asap so I don't want to wait too long - hard to know what to do or when to do it.

Barb-CA


Quote:
Originally Posted by barbhelm View Post
I posted this yesterday but I think I did it as a reply instead of as a post to everyone on the site, so I am posting it again to be sure everyone sees it. Thanks for allowing me a learning curve for the site.

I have been diagnosed with Tarlov Cysts and I have been researching the subject for 8 months. It appears surgery is the most effective treatment (NINDS Tarlov Cysts info page).

Does anyone know how a layperson can find out the inside scoop on the few doctors who are doing this surgery?

What the doctor's reputation is among other doctors and in the hospitals?
What the nurses that work in and around the doctors have to say about them? For example, if another doctor's wife had a Tarlov Cyst, who would he send her to?!

I would also like to know if there is anyone out there who has had surgery and is now pain free, i.e., is the surgery a success or do they still have pain but just a different kind of pain.

Thanks so much for any help or insight you have...I just don't know where to turn at this point.

barb
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