Tarlov's Cysts

[yoland]

Wow, getting in here was quite the ordeal.

Regardless, i am still doing well. Great News , after 8 months of me bugging the National Vulvodynia Association to add Tarlov/menigeal/perineal/ sacral cysts as a differential diagnosis. They just released a front page article on" Vulvar Pain and Tarlov Cysts" some of the parts she is talking about are my case, , It is to hard to copy here as they NVA use page breaks however if someone emails ( violet or chelste you have my email) me on how to download files here you can have it. Other wise you can go to their website;
www.nva.org
National
Vulvodynia Association
Volume XV Issue III
Chronic Vulvar Pain and Tarlov Cysts
Questions and Answers with Anne Louise Oaklander, MD, PhD
Winter 2010
Dr. Oaklander is associate professor of neurology at Harvard Medical School and assistant in neuropathology at the Massachusetts General Hospital. She is a senior attending physician in the hospital’s neurology service and the director of the neurodiagnostic skin biopsy service. This past August, Dr. Oaklander presented a poster at the International Association for the Study of Pain’s World Congress summarizing the results of the first study investigating the relationship between Tarlov cysts and chronic vulvar or pelvic pain.

the rest won't copy because of the way the layout is. However it is worth joining to get it , or finding me if you don't have the $35 to join. I think you can by the article for cheaper but it is a cause worth joining, lots of good self care info there, OR you can join the tarlov cyst forum I post on. It is a yahoo forum, tarlovcystdiseasesurvival ( one word) it is in their file section. I post under Joy there.

Also a very hard article to find , that sums it up.
"Sacral cyst may be the aeti-ology of chronic perineal pain in many instances. Sensory deficits are less prominent. Bowel or bladder dysfunction may also occur in individuals with sacral cysts [11,12]." Oxford Press University Hospital of Spain Madrid. link is: http://ndtplus.oxfordjournals.org/conte ... 60.full.pd

Hope this helps someone. It certainly helped me.

Yoland-Joy

[Violet M]

Yoland, I could be wrong but I think you would have to download the images onto your computer and then when you are posting a message on this forum look down below where you are typing your message and click on "upload attachment". Then you browse your computer and add the attachment to your message.

[HerMajesty]

Yoland, if you happen to stop back and see this (and if so tell me how you are!), or anyone else who knows, are there any good message boards specifically for tarlov cyst disease? My papers are in to Dr. Feigenbaum which puts me on the waiting list for a phone consult.
Yoland I was really encouraged by your surgical experience and it lit a fire under my butt to get on with pursuing a resolution to my chronic issues. But I would like to hear more voices of experience.
All I found so far was the Yahoo group Tarlov Talk, and I really do not understand the yahoo groups, I find them confusing and hard to navigate. I want to see prior posts listed by topic, especially various surgical outcomes.
If anyone knows of an organized, user friendly message board like this one for tarlov cysts, please post up a link.
Thanks!

[yoland]

sorry here is what I consider the best most friendly Tarlov cyst forum
http://health.groups.yahoo.com/group/ta ... tsurvival/
no agenda, no moderator/censorship just support, expereince and a great files section

yoland-joy

[yoland]

Her majesty

yeah, sorry tarlov talk is too big, has huge agenda and all posts go through one women who, will rarely post anyone's posts unless it is to her liking , short and
ect it's bull**** a few nice people but they go elsewhere for support. Just my experience .....and a lot of negativity ie people living "in " the disease as opposed to "with " the disease.

there is one facebook tarlov that is okay, but no info just chats.....and frankly I don't want my 400 FB friends to know that my ass hurt last week. But that is just my personal stuff. avoid some of the facebook TC forums , if you decide to go that way the one I would trust are: Tarlovcyst@groups.facebook.com


please do try the above posted link to survival..... just follow the link and ask to join, the owner will get back to you and ask a couple question to make sure you are real and not someone trying to sell a cure ...... this or that supplement ect
then the easiest way is to set up your preferances to get weekly, daily or just ( like I have it) under my groups so I can go on when i feel like it and not have a huge glut of stuff in my inbox.

It is real easy if you do not have a yahoo email to manage groups that way, ie get a free yahoo email account that is just TC ( or medical ) related . very handy cause everything is in one place ......no hunting back emails for info

Hope to see you there, plus you will make friends that have surgery around the same time and have you own little cheering "posie"
Hope to see you there

Hugs yoland-joy

[HerMajesty]

Hey guess what? I finally got a call for telephone consult from Dr. Frank Feigenbaum after...what...only 6 months? Of course, inevitably, he caught me shopping in Target and I got to discuss my private parts within earshot of a whole bunch of strangers, as usual.
Anyway from my imaging studies and symptoms he believes I am a good candidate for surgery. He said I actually have numerous tarlov cysts but the ones that are really compressing the nerve roots are at S2. I am going to do it! I'm waiting for his nurse to call to schedule and then I will know how long I have to wait. Their policy for out of town clients is to schedule an office visit for one day prior to surgery, to go over all the images together and discuss the surgery, and then if I change my mind about the surgery they cancel.
A couple of interesting tidbits:
1. I mentioned to him that while waiting for surgery I do intend to have my piriformis botoxed to rule out piriformis entrapment, and his answer to that was that the nerves coming off the S2 nerve root actually enervate the piriformis, so even if I am entrapped there it might be due to spasticity secondary to the tarlov cysts.
2. He mentioned that he was quite confident about his surgical outcomes because he does collect stats and is happy with his. I looked and on his website, the following are listed as possible tarlov cyst disease symptoms: http://frankfeigenbaum.com/tarlov-cyst/faqs.php However although pelvic pain is prominent on his symptoms list, the stats he has posted at this time seem to focus most on leg pain and sacral pain aspects: http://frankfeigenbaum.com/tarlov-cyst/statistics.php . I would love to see some pelvic pain outcome stats, as they are hard to come by for any Doctor or treatment. I hope to find out more about this when I go if not sooner. Let ya know when I find out anything new.
I am just excited to be finally getting somewhere! This guy is in-network with my new insurance and I am semi-confident that his office might actually be able to get this paid for.

[Celeste]

Outstanding news, HM!!!!!!!!!!!!!!!!! I'm SO happy for you, chica!!!!!!!

[HerMajesty]

Thank you! Just hoping it works...after awhile feeling "normal" seems like such an abstraction...but I gotta try

[donstore]

HM.
This doctor says he can help you, is confident of his surgical outcomes, and is covered by your new insurance. Is this great news or what. I would be happy to talk about my private parts over the PA at Target for a story like that. Really tremendous. Keep us posted.

Best Wishes,

Don

[HerMajesty]

I would be happy to talk about my private parts over the PA at Target for a story like that. Don

yeah well look we are all posting stuff about our private parts on the worldwide web, so who really cares that I had my last such phone consult with that UC Davis Doc while sitting next to the deli counter at Smith's, and this one at Target ??
I hope anyone with pudendal issues looks over the list of tarlov cyst disease symptoms and gives consideration to this as a possible cause, here is the list from Dr. Feigenbaum's website:


What symptoms do Tarlov or meningeal cyst patients have?
Symptoms can vary depending on the location of the cysts.

Sacral or tail bone pain or pressure
Pain with sitting. May feel like you are sitting on a rock or an object
Avoidance of sitting type activity
Pain with standing
Pain in the legs and feet especially in the back of the thighs
Leg weakness or numbness
Bowel or bladder or sexual disfunction
Vaginal, rectal, pelvic and/or abdominal pain
Pain with sexual intercourse
Pain or numbness in the buttocks or between the legs
Headaches
Symptoms made better by lying down


As you can see there is much overlap with pudendal nerve entrapment, but the most common symptoms for tarlov cyst patients are actually leg pain or numbness, and sacral pain.

Tarlov cysts often will not be noted by a radiologist on the report unless this specific information is requested, so I would urge any pudendal patient who also has sacral or lower extremity issues to ask specifically that any tarlov cysts seen on imaging are noted in the report.

As to keeping you posted, I will...but I think I am supposed to hurry up and wait some more now. I should have a surgical date set within a week or two but this guy has a waiting list worthy of Hibner