Tarlov cysts

By Tam
Posted December 14, 2006 at 12:10 am · 20 replies
In Getting a diagnosis

I have had back pain, leg pain, and headaches. If I walk for more than 15 minutes I'm in pain, same with sitting. I wake up during the night 2 to 4 times because of the pain. This has been happening now for some time , approx 1 year. The Dr's at first thought it was arthrisitis in my spin, as I do have this in my hands. Any way, I went for an MRI scan it showed a tarlov cyst in my S2. I did go to see my local GP, and he stated that this doesn't cause any pain. After researching the internet I believe it can. So my question is, would anyone say that the pain I get is from the Tarvol cyst?. I do have other medical conditions like Blood clots on the lungs. I am now on tablets for this. I also have abdonmal pain, and on tests it shows blood in my urine. For this I am waiting for surgery.
Right now I am at a loss. Can anyone help me?.

20 replies

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By JanetS
Posted January 27, 2007 at 11:17 am

Tam,

Tarlov cysts can and do cause pain. Go to this site and read up: http://www.tarlovcyst.net

My orthodopedic surgeon is the only one who is helping me. The neurologist I went to see was a total zero and offered no help at all, telling me that Tarlov Cysts were unsymtomatic. Also Google Tarlov cysts; there is much good information out there. I have about 7 Tarlov Cysts and suffer daily, but with the right pain meds, I am learning to cope. Let me know how your search goes.
Janet

By Maggie2300
Posted July 18, 2008 at 3:35 am

Hi Tam

Just noticed you also have TC and live in Australia. I also have bad problems from the disease. Just wondered how you are and if you have found a good Dr in Australia to treat them

Margaret

By JRD
Posted July 20, 2008 at 12:59 am

Do you believe in alternative medicine? I know of herbal products which did wonders to patients who already lost hope. Many testimonies have been made by people who have recovered from dreaded diseases like this. You have nothing to lose by trying this.

By Maggie2300
Posted July 20, 2008 at 5:01 am

Hi

I really believe in natural therapies. What have you tried and how has it helped.

Maggie

By ShastaBelle
Posted July 22, 2008 at 11:35 am

Hi everyone. I am new here, looking to meet and share experiences with tarlov cyst. I have just received my diagnosis through MRI, 4 bulging disc in lumbare region, and a tarlov cyst on s2. The pain is excruciating. Relief only comes with sitting or laying, which becomes worse when I start moving around. The pain is radiating into my buttocks and into my thighs. In addition, I have Rheumatoid Arthritis. I would love to meet someone that i can share experiences with.

By JRD
Posted July 23, 2008 at 8:00 am

I took this drink called "First VitaPlus." I even asked my friends to try it. My friends' ailments vary from asthma, pneumonia, and diabetes. Surprisingly, all of them recovered from their ailments only after a few days. My friend with the asthma recovered only after a few days. His asthma disappeared without taking any medicine!!!

By Maggie2300
Posted July 23, 2008 at 7:50 pm

OK so how about your cysts, how has it helped with them?

Magie

By darklaw
Posted July 26, 2008 at 12:43 pm

Hi I was recently told I have "a cystic collection at the lumbosacral junction" My physical rehab Dr. has told me this is called Tarlov cyst. My concern is I ad no symptoms up until I tweeked my back at work and now I am having to fight with the insurance company to get my workmans comp to get treatment are there any medical studies I can present to my Dr. and to the insurance company to show them that trauma can cause the cyst to go from asymptomatic to symptomatic?

By diabolik74
Posted August 2, 2008 at 5:19 pm

hi i am new here and it is believed that i may have a tarlov cyst in my mid lumbar. i still need one more test to confirm this. my problem is, that i am in severe pain that came on out of the blue. its in my right lower back and butt area extends down to my right leg top and side and back of the thigh and down to my toes. also pain in my lower back. i can hardly move. the pain is horrific! it hurts to urinate and flex my muscles to make a bowl movement. i cant sit, walk etc. i need some help bigtime. i want to know what pain (narcotic) meds have helped others? i currently have a 50mcg fentanyl patch and 10 mg percocets for breakthru pain. this isnt working and my neurologist acts as though i am exaggarating my symptoms. if anyone can help with advice to pain control i would appreciate it more than u know. thank you.

By Maggie2300
Posted August 3, 2008 at 3:40 am

Hi
I feel for you, as it really sounds like you have all the symtoms for tarlov cysts. With regard to the pain management, I was told by my pain specialist that fentanyl does not work on nerve pain, which is what we have. Have you tried Lyrica, which is fairly new and seems to help me. But I know how hard it is to deal with, I have had this since '92

Magie

By ljpowell
Posted August 6, 2008 at 2:33 pm

what is your cocktail made from?

By Maggie2300
Posted August 7, 2008 at 8:37 pm

Dear Darklaw
I just noticed your query about anything in writing about something setting off the cysts. I think you would probably find quite a lot on the tarlovfoundation.org site, but you might have to search around the site a bit. They are really good and up to date with info. Good luck

Maggie

By ljpowell
Posted August 8, 2008 at 9:39 am

Any successful "cure" stories out there? Any particular doctor recommended?

By Maggie2300
Posted August 9, 2008 at 5:44 am

Hi
Yes there are stories on this web site, but they have all moved around since the change over. I suggest you go to the NORD support group and type in tarlov cysts and have a look at these. The dr that seems to have the most success if Dr Feigenbaum in Kansas City. I live in Australia so I can't really tell you anymore, but there are people on that site that I am sure can. Good Luck

Magaret

By gaiah
Posted August 11, 2008 at 4:23 pm

I stumbled upon these posts just searching some things for my patient, and thought a comment. I am currently an allopathic practitioner who also practices acupuncture. I have a a patient that has a Tarlov cyst on s2 confirmed my MRI. The needle treatment along with physical therapy (which includes a lot of manual/massage therapy) her pain is improving significantly, she doesn not take any OTC anti-inflammatories. I understand for most this would require out of pocket expense (although some insurances pay for acupuncture) but that is my recommendation from an alternative point of view. Good Day.

By Maggie2300
Posted August 12, 2008 at 4:21 am

Hi there

Unfortunaley I have tried acupuncture, with needles and laser and know some pain patients do really get help from it, but it just flares my pain to double. Thanks for the info

Margaret

By ljpowell
Posted August 12, 2008 at 11:12 am

Thanks. I'll look up the doctor in Kansas City

By morticia
Posted August 14, 2008 at 5:35 pm

hi there, im new to this so my apologies if i make some mistakes! I had an mri scan last october and was told it was only small and 'we leave them alone' however i went for another mri in april this year and was told it had grown considerably and has completely eroded the inside of my sacrem bone in the base of my spine and filled with spinal fluid. I am seeing a neurosurgeon next month. I have been told that the cyst IS adding to my back pain, I have been told to sit when I need to sit, walk when I need to walk and lie down when I need to lie down!! I try to go for a walk each evening weather permitting and I have discovered that after only 10 minutes of walking my thighs are numb and feel like they are not there!! i also get pins and needles in my arms and legs. And I too frequently get headaches. I roll of the side of the bed each morning like an arthritic duck and im only 38!! i hope this helps you, and i will keep you posted on the surgeons report next month.

Morticia

By NDWick
Posted August 15, 2008 at 9:32 am

As far as the severe pain you are having, I had the same problems. You need surgery! Your pain is likely from herniated disc/s that are pushing into/on a nerve. This is very severe pain and no pain meds will help because it is the nerve being irritated. When I finally had the surgery, I was not able to walk without a walker and had the pain regardless of any position.
I also have Tarloc and Synovial cysts along with spinal stenosis, 2 degenerative discs, bone spurring on vertebras, herniated discs, arthritis, and osteopenia.
My pain management doctor said I have soup for a back and all I need is a new back.
The last comment: At least you are still alive - to me from a doctor.
NDWick in WV

By NDWick
Posted August 15, 2008 at 9:34 am

You may also have a herniated disc causing the pain.
Very severe pain from a disc pushing on a spinal nerve.
Only thing that will help is surgery.
I had a micro discectomy in April to shave off the herniated part of the disc.

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