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Old 02-10-2016, 11:25 PM   #1
Sydnimarion
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Shocked Tarlov Cyst

Hi,
I'm 16 years old and for the past 6 months I have been suffering from chronic pain. It began in my lower spine, then moved to my hips, butt and right leg. Doctors ran every blood test known to man and couldn't figure out what was wrong, they said I was just very anemic and to take iron and I would be fine, it seemed to get worse and worse rather than better. I had an MRI, they found a 4 by 7 centimeter Tarlov cyst I believe near my s1 and s2. The doctor said Tarlov cysts are asymptimatic, I thought REALLY? Then why am I in so much pain? I saw a Tarlov cyst specialist and he told me if he were to try to do the surgery, because of the location, I would most likely become paralyzed. I've tried every kind of drug to calm the the pain except narcotics, because like I said before, I'm 16 and in high school so I can't be doped up while trying to learn. I have been going to physical therapy and trying everything and nothing seems to help. Now, I've been diagnosed with clinical depression because of my chronic pain. I want, no I need, this pain to go away or atleast have a smaller amount of pain? Please anyone have any suggestions, I'm too young to be feeling like this and being in this much pain. Someone help please
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Old 02-11-2016, 09:45 AM   #2
EnglishDave
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Hi Sydnimarion,

Sorry you are suffering so much pain. It can be difficult to persuade a Dr that a cyst is symptomatic and causing great pain against what is 'normal'.

I have had a quick search for treatments that do not involve narcotic pain meds, or surgery, and found that corticosteroid injections and epidural steroid injections can bring relief. The latter may work for up to 6 months, depending on severity. This is a path I would consider exploring. NSAIDS can also be somewhat effective at reducing inflammation and reducing pain that way.

If, and I am sure you are right, the cyst is causing your problems, them things may get worse if the cyst grows. Be prepared to consider surgery in the future.

It is common for those of us with Chronic Pain to suffer Depression, and this must be addressed. At your age I would suggest asking your GP to refer you for Talk Therapy with a Psychologist/Counsellor conversant with Pain patients. A Specialist in that Field would know whether your Depression justifies an AD rx.

Hope this helps.

Dave.
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Old 02-15-2016, 08:16 PM   #3
Telvaker
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My problem started with sitting pain. Just couldn't get comfortable in my office chair. Then it turned to burning in rectum uretha had to stop wearing underwear. I think my problems started with exercising with kettle bells. Numerous squats with weights are not a good combination. I did everything from physical therapy acupuncture chiropractor nothing helped. In fact people with Tarlov cysts should not do pt or have chiro adjustments. I doctored for 3 years and had numerous MRIs before I was told I had cysts and that came from a second opinion.
I had surgery with dr f in Dallas on November 11, 2015 so I am 3 months post op. I am not any better, in fact I feel worse. Maybe I'll turn a corner maybe I won't. As of today I would not do the surgery again if I could go back. I had 7 cysts s1-s4. 2 months prior to surgery I started taking Wellbutrin and I was noticeable improved. I could do everything I could do before except exercise and have an orgasm. But, I wanted more of my old life back and it's such a big ordeal to get scheduled with dr f and the surgery date was already set so I went thru with it.
Recovery has been extremely difficult and at times I thought I would not live to see another day. The surgical experience in Dallas was not good.
i think people with cysts s1-2 have a better outcome than those of us with them lower. I didn't know that going in and that would have affected my decision. I think the lower the cysts are on your sacrum the chances of a good recovery are less.
So, surgery might be ok for you if you've exhausted your other options.
Ask me any questions
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