tarlov cyst...help! what do I do?

• By dibar
• Posted May 29, 2007 at 10:53 am
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You need to see a neurologist. Bring the actual MRI with you not just the report so he can look at it to see if it is invasive. Unfortunately, even most neurosurgeons won't operate and will just send you to the pain clinic. Also, he can check to see if anything else is going on such as vasculitis or neuropathy which might be adding to your pain.

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• By Jane5
• Posted June 1, 2007 at 12:55 pm
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Hey Jackie...I hear you. I have all the same symptoms and becoming progressively worse. The toes on my left foot have been numb for a couple of weeks now. My legs feel like they could give out on me at any time. I have burning "pin prick" pains down inner and outer thighs, and (oh joy)...bladder and bowel symptoms). I have been referred to a neurosurgeon, but have no idea when I will get the appointment, or what the outcome of the consultation will be. This is a very frustrating and disabling condition and I want it GONE!

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• By Pauline
• Posted June 8, 2007 at 1:06 pm
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Jane,

My symptoms are exactly like youra and until a recent MRI the cyst was not found at the right of S3 nerve roots. For years I have been treated for sciatica (misdiagnosed). The MRI - true to other comments simply states there is a cyst but does not elaborate on follow up as it does for other issues discovered.

I have been on Oxy.IR 10 mg (a short term medication for pain) and Oxycodone 40 mg (long term relief). Last summer I lost mobility for two months then with pushing on my part regained it. I am very active and wanted to maintain that level.

Most recently an appointment with my neurologist and an MRI resulted in being perscribed Lyrica 75 mg twice daily taken at even intervals. It has eliminated some of the pain and definitely the burning. Neuropathy is what they call it when the pain radiates out like this.

My burning felt like some scalded me with hot water - all on my thighs and forhead including eyelids. My left leg was numb from the knee down. Checking reflexes was one of the first things that he did. Excellent knee reflect in the right leg and none in the left.

It all started a few years ago with a sensation in my left hip that was a dull nagging pain.

Hope this helps you.

Pauline

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• By Marvin
• Posted June 9, 2007 at 10:18 am
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I am 52 years old and have just been diagnosed with a Tarlov Cyst. I am not sure of size or location, but all of my symptoms match everything I have read on this site. I feel for all of you. I am unable to do most of the things I used to do. I have been on pain meds for about 18 months and have had all of the insinuations and accusations thrown at me (you are just looking for pain meds, you don't want to work, you are crazy there is nothing wrong with you, etc.). I also have a subluxation of C2 on C3, multiple mid-thoracic compression fractures, arthritis and facet disease. I still had to fight with my last Dr. just to get a bare minimum of meds and no compassion or understanding. He told me treating my pain went against everything he believed in! I thought Drs were supposed to relieve suffering, but just going to see him was distressing. Fortunately I have a new P. A. (Physicians Assistant) who is very compassionate and level headed but who also had no idea what the Tarlov Cyst was, but was going to research it. I was just diagnosed on Wed. 06/06/07. I went to Google and found the Tarlov Cyst Association and faxed my Dr. all info I could find. You MUST stand up for yourself and talk to your Dr. as if they are an equal, not as someone who is above you. I was in the medical field for a dozen years, 1980-1992, so it is not as difficult for me, but getting them to listen is ! Please, please hang in there and demand treatment, do not let them or anyone make you feel like an addict if you NEED pain meds to live your life. I wish all of you the best and will keep you all in my thoughts.

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• By distressed
• Posted September 7, 2007 at 2:37 pm
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Hi Jane,
I have Tarlove cyst disease and you need to go to TT. Go to this site and join TT.

http://tarlovcyst.net/

There is a fountain of information there and so many wonderful people to talk to if you have questions feel free to emai me direct ----- distressed100@yahoo.com

Good luck,

Debbie

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• By Jane5
• Posted September 7, 2007 at 2:58 pm
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Hi Debbie:
I will go look at the site, but I must say, I am fed up with physicians and specialists after my appointment a couple of weeks ago with the neurosurgeon. He said he was sure I had pain and discomfort, but he would not touch it. His comment to the Medical Student with him was "a lot of people have these, they are very common and don't cause any trouble". So, it seems that most physicians think we are just moaners or cry-babies....yes, we all just sit around and dream this stuff up! To summarize, the docs just want us to "shut-up and put up". I certainly got that impression, and I was very angry when I left the appointment. I will NEVER discuss this with a physician again until I get to the point that I can no longer bear the pain and symptoms, and drag myself to an emergency room. I am sick of them all!
One glimmer of hope came out of my appointment...he did say that it may never get any worse..so that is my goal now... not to let this monster get any more of me!

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• By Jane5
• Posted September 7, 2007 at 3:04 pm
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Hi there! Me again: I just went to the site you forwarded. Yes, I have been to that site before. I am empathetic with the other sufferers there.....but, I just don't want to talk about it any more. I have had it with docs, alternative treatments etc....and it hurts too much to sit that long at my computer! lol....we might as well laugh at ourselves....everyone else is!

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• By sciaticarghhhh
• Posted October 3, 2007 at 5:07 pm
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I'm 56 & have dealt with the pain for years. They finally did the MRI & found the cyst but everyone says it's "insignificant".....I don't know how you do it with kids. An hour with my grandkids & i'm hitting the pain pills. There is a gel you can have injected. I can send you the article if you are interested.

SK from Arkansas

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• By reneea
• Posted November 28, 2007 at 8:40 am
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Jane, I hear and feel your anger. The one guy is right.... you can't just lay back and take this from the doctors. You do have to fight every inch of the way. I've been told nothing was wrong with me, I've been told that that little cyst can't cause problems, that I'm just addicted to pain meds. My primary doctor told me he didn't want to be my doctor anymore, one of the emergency rooms here thinks I'm crazy although I took MRI films in there with me (which they refused to look at). It is a battle but you have to be your own advocate. Don't give up. I actually printed stuff off the internet and shoved it in doctors faces and asked them " Don't you want to learn about this, what if someone else comes in with the same thing". These doctors are so damned arrogant and think they know it all when in reality they are lazy and don't want to put the time in to do their jobs. I did finally, after 4 or 5 doctors find someone who would listen and started searching the web and found a sugeon. I'm scheduled for surgery either Dec.6th or the 18th. I'm waiting for the call. Do NOT let these doctors make you feel like you're crazy. Keep fighting, stand up for yourself. This is YOUR life and it's worth it

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• By chelle68
• Posted October 1, 2008 at 11:58 am
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Try the Tarlov Cyst Foundation there is alot of great information there. there are only 4 main hospitals that have neurosurgeon that specialize in taking care of a Tarlov cyst. They are in Baltimore, California, Washington and Kansas. the foundation just got a grant from congress to try and educate more doctors and people in general.
when I had my Sacral MRI, that i had to push to get, the radiologist wrote that the Tarlov Cyst was incidental. well that incidental cyst is 1.5 cm which is causing immense pressure on the nerves in the S2 area and it is also eroding my bone. my advice is push, push, push cuz' its worth it in the end. Don't give up, you know your body more than those damn doctors. if you want a little more information you could email me at chell6868@aol.com

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