[kori1701]

i am very glad to have found this site, what appears to be a great forum to find answers to the unanswerable...

i've had a host of neurological conditions but i am currently focused on my recent diagnosis of tarlov's cysts in L2 & L3, above the area i'd thought i would have gotten them (L4/L5/S1) since i ruptured those disks in 1986. a bit confused how they could have occured above the site of severe trauma.

i have had only the basic diagnosis thru the university of washington medical center in seattle. my internal medicine practioner has referred me to neurosurgery, but i have since lost my insurance.

this issue, which has developed with extreme severity in the last 2 years, with the worst of it within the last year. i am doing my best to keep it from interfering with my life, but it has since become nearly impossible; affecting everything from sleep to intimacy.

the worst pain is from twisting or lowering my legs onto a flat surface while trying to lay down.

where i live, there are almost no options except surgical and even the neurologists that i've seen have expressed the same disenchantment that i have found in my own research -- as great a chance to make it worse than to have any improvement whatsoever.

my neurologists have not realized that headaches are a big side effect of these cysts, which i get often enough to be an irritant if i take opiates for pain, (which is actually gives the only effective relief) and the practitioners are back to the old fall-back position of going to a "pain clinic" (sheesh!) rather than actually seeing the headaches as a symptom involved from the cyst and making it a stand-alone symptom.

i am currently in europe and i have discovered an over the counter pain killer which is not legal in the states. it has 500 mg of tylenol and just 12.5 mg of codeine. i find it far more effective than larger doses of opioids, just 1 tab 3 times a day takes a great deal of the edge off, but as usual, in the states, they are reticent to prescribe them at all, even in the mildest doses. naturally, it has upset my bowel routine.

i have also tried alternative healing measures such as shiatsu and alphabiotics but have been advised not to ever pursue chiropractic (and i quite agree!)

having had a genius for a osteopath in the early 90's, i am utterly averse to back surgery, and feel that i would have to be very close to being in a wheelchair before i let anyone cut into my spine.

however, i'm a firm believer in the mind's ability to heal the body and i am looking for people of like "mind" to discuss non-surgical interventions.

i'm looking for cameraderie rather than people to exchange complaints with.

i would also like to hear if anyone has more information than i have gotten.

thanks for reading!!
Kori
Seattle/UK

[AdamsGrammy]

I just found this site today and already am finding it a comfort just to know there are people who know how I feel because they feel it too. It gets lonely always trying to be strong and "soldier on" as my efforts were once described. And it's difficult when people expect you to be the same when a disease, or condition, or syndrome, especially one that doesn't show is wreaking havock on your body. My boss once told me in a performance eval.
"I just want the old D. back!" not understanding how often I had prayed for that myself before I came to acceptance.

Thak you all just for being here today. I've had a particularly rough week and you have helped me more than you know. By the way, I'm not real technologically gifted so I may not know my way around but I'll do my best.

[Doody]

Hi ((Kori)). Welcome to NeuroTalk. You'll find these forums very caring and supportive.

I'm so sorry for all of your problems. Boy, I hear you about the pain clinic routine. When all else fails...send 'em to the pain clinic! However at the pain clinic I go to, the doctors don't even consider any kind of opioid or narcotic pain relief. Drives me nuts.

I take vicodin, only after I get home from work. It takes the edge off. Sometimes I have to take one during the day. I take so little because if I take more, my doctor gets leary of prescribing it.

If you haven't already found it, we do have a place here for people with Tarlov cysts. You can find it at this link. http://neurotalk.psychcentral.com/forumdisplay.php?f=73

It's great that you have been doing your own searching on the internet. I remember being told by a doctor I shouldn't look stuff up on the internet because I might be misinformed. Well....you can't beat a forum like this for personal testaments. Who knows better than the people who suffer the same thing as you? Well, at least we can share what works and doesn't work for whatever ails us personally.

I hope you find comfort and help here. If you need any kind of assistance, just let us know!

[Doody]

Hi ((Grammy)). Welcome to NeuroTalk!

I don't know how to help you without knowing a little bit about what's going on. But I can direct you to the main page of this forum where you can see the different forums that we have. Also, up above there in the blue bar is a Search option. You can use that to search for specifics.

Here is a link to the main site. http://neurotalk.psychcentral.com/index.php

Again welcome. I'm very glad you found this site!

[Darlene]

Kori & Grammy,

Hello and welcome to NeuroTalk. Great to see you two have come to be with us. You will find a great number of caring members here willing to help each other as they are able. Again welcome, looking forward to seeing you both around.

Darlene