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Tarlov cyst and arachnoiditis

Apr 09, 2017 10:16 PM

I do so much to try to help with the pain and it is not easing it and I am supposed to be starting the taper of percocet now. Dont get me started on pain management. I got myself kicked out due to not having a copy of a contract and being told to just sign there because it is their normal contract. I was in intense pain my first appointment and had no idea and wasn't told. I should have been given a copy especially being hard of hearing and dyslexic. Now I know better. Nothing like being accused of being an addict flat out by the dr who only met me for 2 minutes the first appointment (I had no idea who he was and why he shook my hand). Also had a nurse practitioner lie to me and press hard along my spine sending the first area into spasm now. The first nurse who took my vitals told me there was no reason to have my mom come into the room with me from the waiting room. I called her in mid appointment. No way I am having my nerves burned or an epidural with tarlov cyst disease (permanent cyst) and intense inflammation from adhesive arachnoiditis. I trust my research and knowledge much more than their off the wall and their conflicting info so they saym also the black box warning from the fda on steroid epidurals and includes possible nerve injury. Not happening. I take responsibility for making the mistake of not reading the contract that I signed. I know better from now on. I will have someone with me at an appointment unless it is with my surgeon who respects me. Crazy people and I think the dr was scared that I know so much about my diseases and my body and that I lidten to it.

Apr 09, 2017 10:29 PM

Welcome, you will figure out who this is. , lol. You go girl!

Apr 09, 2017 10:33 PM

Hello and thank you :)
Anything I can do to help take some stress off and help others learn from my mistake

Apr 10, 2017 4:48 AM

Amen Jessaurelia!
Your description could have been about me!

Apr 10, 2017 7:32 AM

Oh no! I am sorry to hear that!

My current state: just woke up and have heat on sacral area to see if that will allow me to sit up. This is like my morning routine. Wake up amd access pain and location then put heat on it before attempting to sit up for meds.

Apr 10, 2017 11:20 AM

Hi Jessaurelia. I'm new to posting here, but wanted to say welcome!

I, too, have a Tarlov cyst (at S3) as well as a benign tumour at S1/S2 and was told by my previous family doctor that neither of these were the cause of my pain. Hearing your morning routine has me identifying with you completely, though! My mornings are horrible and I have to make sure I get meds on board and do some gentle stretching to make sure my lower back doesn't completely go into spasm when I take the 10 or so steps just to get to the bathroom. I'm also a little concerned because I, too, signed a contract with my family doctor when she prescribed a narcotic for me at my last appointment. I had been taking them infrequently, only when needed to prevent/deal with pain crisis. I was taken to Emerg by ambulance last week and admitted due to a pain flare that I could not get under control on my own with the meds I have. They treated me with large amounts of narcotics and I am currently taking them regularly which I'm hoping wasn't against the terms of my contract with my PCP (I didn't get a copy, either). I asked for the Emerg reports to be sent to my family doc and called this morning to ask for a follow up appointment with her to discuss the issue and come up with a plan. They say they can't get me in until next Tuesday (an appointment I had already booked a month ago). I'm supposed to be tapering off the hydromorphone (which I definitely want to do because of the side effects), but I have trouble even turning over in bed if I spread out my doses. I feel stuck and don't know what to do. I don't want to be labeled a drug seeker, and have tried almost everything under the sun to help with the pain.
Anyway, all this to say that I feel for you and hope you're able to find a solution. I hate the "addict" stigma attributed to chronic pain patients who have to use narcotics for pain control. I'm sure you'd rather not have to deal with all the red tape that surrounds these meds - and the easiest, most obvious solution to that is not having to take them at all.
Sending big, gentle hugs your way. 💐

Apr 10, 2017 11:53 AM

Sending many hugs and spoons your way. There are support groups on facebook for tarlov cysts like tarlov cyst society of america is one of the best I have been in but that is my prerogative and you may feel differently. They can be symptomatic despite what many drs believe and that is one of the hugs struggles with it. Do you have any bone errosion from it? Are you 100% positive the one above is a tumor or is that what the radiologist listed as they are notorious for being wrong about these or leaving stuff out or even saying automatically asymptomatic!😲 kid you not, happens a lot unfortunately. Knowledge is power with these. That is the best thing you can do is arm yourself with knowledge and have a neurosurgeonor neurologist who has plenty of experience with symptomatic tarlov cysts to take a look at your case and the support group I told you about keeps a list of drs they know about as the foundation has some info but is crap with listing drs.

Apr 10, 2017 2:08 PM

Thank you! I will definitely check out the support group you mentioned. I'm in Ontario, Canada, though. Are there any other Canadians in the group? The MRI reports have not mentioned any bone erosion, and I've been told that the tumour (they think schwannoma) can only be 100% identified by biopsy. Last week's MRI was my third and the first one they've done of my lower spine with contrast (they've done my head with contrast before to rule out the tumour being a drop metastasis). Do Tarlov cysts enhance with contrast on MRI?

Apr 10, 2017 2:28 PM

Not really in my experience for the contrast. I could be wrong but the group would likely be much more help. Also they have members worldwide :) also drs worldwide

Apr 10, 2017 3:45 PM

Ah! My tumour did enhance, which I assume is how they identified it/differentiated it from my cyst.

Apr 10, 2017 4:01 PM

Ahh, some also have more access to fluid than others. It is something a specialist should look at. Hugs!

Apr 14, 2017 7:40 AM

So the pain management dr also apparently diagnosed me with chronic pain syndrome. So much conflicting info online for it.
Will do counciling if they want me to but not really sure how that will do much help when my anxiety and depression are under check unless they change any meds around and it is 2 or more. Especially if I end up having a reaction to the med.

Only thing I have yet to try is biofeedback because we can't afford to get it off of ebay or amazon.
I am going to talk to my surgeon about seeing about trying it on my next appointment or getting insurance to cover a machine for home use. That way I can use it along with the binaural beats for meditation and try to see if I can get even a tad more relief that way. Trying to do what I can naturally to help without relying on pain meds or stuff like that so that I know I gave it my full effort to help the pain wothout pain meds. I have even been forcing myself to get up and be more active at home, walki g around more often, sitting a tad longer in the glider, standing in the shower for as long as my body can tolerate. I am starting to think that may not be the way to go with the pain increasing. It is still waking me up in the morning and what not.

Apr 18, 2017 10:26 AM

New wake up time is around 4 or 5 am due to pain. -_- having a pretty bad pain day

Apr 18, 2017 10:30 AM

Same here. Was up this morning at 4!😞

Apr 18, 2017 10:33 AM

Oh no! Sending hugs 😔

Apr 20, 2017 9:48 AM

Fingers hurt so much it was hard to move them last night aand this morning. I have been having headaches I think is related to spinal fluid pressure.

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