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Madison104 · 04-15-2012, 06:58 AM

Hi everyone. I hope you are having a great Sunday. Positive thinking right? Which by the way I am about plum out of.

I have numerous health issues. I have Lupus and a gazillion other things that go with that. Then there is my back. Besides the 5 bulging discs, I have spinal stenosis, degenerative disc disease and a bone that has moved forward.
After being taken out by ambulance 3 times this past Nov. my burning/pain when sitting and standing has been terrible. When I saw the doctor on Thurs. he told me this could be my Tarlov cyst???????????????????? This showed on the MRI in Nov. and no-one mentioned it. Now I am waiting for the neurosurgeon to call me for an appt.

Anyone else have this?
ANY suggestions for relief? It hurts to sit, or to stand or to really walk for that matter.
Short of giving up, what CAN I do?

I am already a chronic pain patient so I have pain meds on board daily.
My rheumy got terribly sick so my GP took over untl the new doctor comes on board in August. And thank GOD he was willing to keep prescribing for me.

Thanks so much. I am sad, cry much of the time and feeling quite disgusted!
I am only 56....so what lies ahead.
I really would take antidepressants but I am allergic to them all.
I don't have clinical depression but I do get situational depression. I am worn the hec down

teteri66 · 04-15-2012, 10:50 AM

Tarlov cysts are generally suspected to not cause symptoms of pain, but when other things have been ruled out, and the person is still in pain, the doctor will then acknowledge that the pain "could" be coming from the cyst.

These cysts are almost always located in the spinal canal in the vicinity of the S1 to S4 region. They differ from other cysts that can form in the spine in that the walls of these cysts are made up of nerve fibers...this is why I am assuming these can be so painful. They form within the nerve-root sheath at the dorsal root ganglian.

What makes them form is not well understood. For this reason, there is no known successful way to treat them. Sometimes they are aspirated. Sometimes they are surgically removed but often grown back and multiply. There is some new procedure being done at Johns Hopkins where the researcher is using some sort of plastic to fill them. But none of these methods have proven to be completely successful, so most doctors try to "manage" the pain caused by the cysts rather than trying to remove them.

Do you know where yours is located?

Madison104 · 04-15-2012, 02:21 PM

Hi teter, first of all THANK YOU! I have been reading some, and you are right...this does not feel very hopeful. Before I forget, mine is located at S2.

I fell a year ago, landed right on my butt under the clothesline. I hit the one and ONLY patch of ice, left before our spring thaw

I don't know if that had anything to do with this, but then again, I have to think about my "today" right?

I really, REALLY appreciate your feedback. I am very worried about this. I just have so many problems and lately I am down in the dumps. USUALLY I feel.... WHY should I be spared when so many suffer. I am no better than the next person suffering from some affliction. What I mean, is we all have our cross to bear. I only hope to help others when I can as well. I was just telling a friend of mine, if we come to know our purpose, I do think mine is helping those that need help. I never keep anything to myself...be it an "inhome hairdresser" for us that cannot get out. I found one for me, so I found one for some sweet lady that wants her set as well. AND I love that! It is not for money, or notoriety....but just because it is the right thing to do.
Sorry to ramble.
Thanks again...

I hope the neurosurgeon can offer me some hope. I tried SO hard to do some things around the house and my lower back is burning like someone has a match to it!

teteri66 · 04-15-2012, 03:18 PM

Yes, I understand they can be extremely painful. Do you ice the area? I've found that icing 15-20 minutes per hour is sometimes more helpful than any narcotics.

I hope the neurosurgeon will be able to help you.

Bear in mind that many people have them and are unaware that they do because they cause no symptoms. Hopefully your pain will go down and not return.

Madison104 · 04-15-2012, 05:47 PM

Thanks again teter...I do find for some reason heat feels better.
Ice is okay....but heat seems to help more

I will keep you posted.

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