perineural cyst sacrum

Hey Cat, so true... the Foundation is definitively the best way to start your Journey through this nightmare diagnosis. I hope you've all taken the time to contact Reta at the Foundation. Her wesbite is great, but the in person support she offers is even more amazing.... You've developed another cyst since your diagnosis? Where did the find the new cyst?

Hi, I'm sorry to hear what you're going through, but I and many others know the feeling.... almost everyone goes through the same thing when we're first diagnosed........Where do you live?

Gem wrote:

Catarczyna wrote:

I too was also diagnosed with Tarlov's Disease, about 2 yrs ago.  I have since developed another, I don't know if there are treatments for them, I so know that mine are symptomatic.  They cause me a great deal of pain, at times, even numbness and weakness too.  You can google Tarlov Cyst, there is a foundation for them.  It was very informative.  Just know that, yes they are rare, but, you are not alone.

Hey Cat, so true... the Foundation is definitively the best way to start your Journey through this nightmare diagnosis. I hope you've all taken the time to contact Reta at the Foundation. Her wesbite is great, but the in person support she offers is even more amazing.... You've developed another cyst since your diagnosis? Where did the find the new cyst?

Hi all. Online support is important but where in Canada can ppl with our sometimes debilitating cyst be treated??
I live in Fred'n NB and am already past frustrated....
Thx,
Maggie

I have a similar story. When I was 21 I was picking of something at work when I had the pain. I was in practise fired from my work after my injury. Since then I cannot stand on my feet for more than 60 min without strong pain. My workers compensation only included 20 visits to the physiotherapy and a visit to a neuro surgeon. That’s all... I was too sacred to get into fight with my employers. I went to uni and became a (non-medical) doctor. I am 32 years old now. I sit most of the day and my pain is manageable in that way. I suggest you change your type of job too!



The cyst was seen in my S1-S2 area MRI since 2008. I need to check the name of the cyst with my doctor. But I was told it was the bodily fluids and nothing dangerous. No specialist had until recently associated the cyst with my chronic lower back pain. They had advised me to do exercise. I am quite flexible and my weight is perfect for my height. I do yoga 3 times a week and play badminton but I always have pain. My pain goes from my bottom to my heels and toes and the forth digit, along the sciatica nerve path. I sometimes have funny sensations in my big toe and my legs. Over the last 2 years my pain has gotten worst, despite all of the exercises. So far, I have refused to take pain killers.



Recently my pain specialist has prescribed me with Dulexetine hydrochloride. He thought it will help me to repair the neurons communications and thus relive my pain. The pain specialist is pondering that the cyst could be pinging on my nerves. I am very hesitant to take this as if the cause is physical I doubt that his is going to help me. Do you have any suggestions?

All the specialists that I have seen believe that my spinal chord and discs are normal and cannot point out what is causing my pain. But I am not imagining the pain. The 3rd pain specialist that I saw at the Royal Prince Alfred hospital in Sydney, thought it is because of the cyst that is seating between S1 and S2 and stenches into L5 on the right as well. Is taking Dulexetine hydrochloride a cure for my pain or shall I endure my pain as I have been so far?

I've left a message on the foundation website. No reply :(
Despondent in NB Canada....

Visit www.canadiancitzendailybattles.blogspot.com

I have cysts as well and all of the info you need is there. Including support groups, surgeon contacts, Disease info relating to Canada... NB? St. John? Is this Tammy? If not then you have a similar friend in NB. Just curious. Email me at _[removed]_

Gem wrote:

Maggie wrote:

I've left a message on the foundation website. No reply :(
Despondent in NB Canada....

Visit www.canadiancitzendailybattles.blogspot.com
I have cysts as well and all of the info you need is there. Including support groups, surgeon contacts, Disease info relating to Canada... NB? St. John? Is this Tammy? If not then you have a similar friend in NB. Just curious. Email me at _[removed]_

Hi my name is Sherri.
visit www.canadiancitizendailybattles.blogspot.com for Tarlov Cyst Disease info, contacts, support groups and stories. The site is international, but also very Canadian specific.
email me, _[removed]_
Is this Tam? If so, talk soon when you email me, if not then you have another Tarlov Friend in St. John.
Talk soon.... you'll get this figured out.

Hi again, I'm Maggie. I'm just outside Fredericton NB, an hr from SJ :)
I'll email you. And Ty

what is the "foundation website", please?
Thanks

I found it it is http://login.npwebsiteservices.com/Tarlov_Cyst_Disease_FoundaAYSCXT/TarlovCystInformation.asp

I have two cycts underneath my sacrum. I fell and hit a chair when I was age 14 and had to have surgery to grind down the sacrum bone, so the doctor said. Years later, as an adult, I had to have a cyst taken out of my spinal column. I was having really bad sciatica pain in my left BUTT and down my left leg. I went to another doctor and my legs were stiff- could not life them. He sent me to a bigger hospital and had the cyst removed from my spinal column- no more pain, BUT- my feet are somewhat numb and really cold at night.

NOW, I have two cysts underneath my sacrum and they will not do anything for them because I may loose my spinal fluid-all of it. SO , it is somehting I have lived with for years- thru having 4 kids, etc. I guess this is as good as it gets. Faye

I was diagnosed 2 years ago by 2 Neurosurgeons in 2 different states. I wanted to get a second opinion. I am frightened by this rare disease and it's prognosis. I am a 64 year old female who cannot have the surgery or any procedure due to other health problems. The pain is getting worse. Sometimes the spasms in my leg are excruciating. Pain meds make me sick, but sometimes I have no choice. My primary care physician has been on board with me to try to help me. He was not familiar with this disease until I did the research because all my ct scans and MRI 's kept saying incidental findings Tarlov Cysts. After I researched he helped me with getting my diagnosis. I am grateful I have a diagnoses after so many years of strange symptoms, but I am not happy with this diagnoses and the fact that I am limited as to what I can do for relief. Good luck to you. I hope you are able to get treatment.

i have just found myself in this situation with workers comp i was wondering how you case ended up please let me know _[removed]_m

Maggie wrote:

Gem wrote:

Catarczyna wrote:

I too was also diagnosed with Tarlov's Disease, about 2 yrs ago.  I have since developed another, I don't know if there are treatments for them, I so know that mine are symptomatic.  They cause me a great deal of pain, at times, even numbness and weakness too.  You can google Tarlov Cyst, there is a foundation for them.  It was very informative.  Just know that, yes they are rare, but, you are not alone.

Hey Cat, so true... the Foundation is definitively the best way to start your Journey through this nightmare diagnosis. I hope you've all taken the time to contact Reta at the Foundation. Her wesbite is great, but the in person support she offers is even more amazing.... You've developed another cyst since your diagnosis? Where did the find the new cyst?

Hi all. Online support is important but where in Canada can ppl with our sometimes debilitating cyst be treated??
I live in Fred'n NB and am already past frustrated....
Thx,
Maggie

Maggie, I am age 69 and I had an accident when I was 14 yrs of age. I had constant pain in one leg and foot. They found a cyst in my spinal column. They finally took it out and the pain went away from that. They also found 2 cysts under my sacrum and I have been living with them since age 14. I got married- had 4 children also. I just have to be careful how I sit, etc. It does bother me almost constantly- but I guess I have gotten use to it. I take it one day ast a time and do what I can- when I can- and if I am not able- I don't do it. I certainly do NOT climb to get upon something. It is not so painful now because it is in my mind everything I do. I try to take care of myself as far as this is concerned. The doctors say they cannot remove the cysts beneath my sacrum because I would lose spinal fluid. SO, it is something I have to live with whether I like it or not. Hope this helps you some. The pain in my right leg was sciatica nerve pain and I am so glad they could take the cyst out of my spinal column -which completely got rid of that.