After trying to convince my primary care doc that the pain is not in my head, the MRI results show large Tarlov cysts. I'm getting ready to go back to see my doc (who graduated med school about 20yrs ago) and am ready to hear from him the standard reply about Tarlov cysts being asymptomatic and how they couldn't possibly be the cause of my pain.
I've already printed out lots of updated info & studies that will hopefully point out the fact that Tarlov cysts can cause a lot of pain. Even if I can convince him to refer me to a neurosurgeon, I can't seem to find a single reference online to any neurosurgeons in Oregon that has any expertise in this field.
I don't have the resources to fly to Kansas or Dallas to see the doctors who operate on Tarlov cysts, and the original injury that may have caused them to form was a fall at home-so I cannot go the workers comp route.
I'm guessing there may be other people who were once in my shoes and perhaps they can guide me on where I go from here.
While it's great to finally know what is causing my back pain as I read story after story from people sharing that same pain/problems, it's also a double edged sword if I can't get treatment to correct the problem.
Any help would be greatly appreciated, especially before I return to my primary doctor.
Thanks
Cathy

Hello Cathy,

I just wanted to welcome you to the NeuroTalk Support Groups.

I'm sorry the forum is so quiet right now, but hopefully someone familiar with tarlov cysts will see your message and offer some advice and information.

I'm also sorry that you're having difficulty finding a doctor in your area.

If you check some of the older posts you may find some more info..

There's also a full forum search feature where you can search for specific keywords.
http://neurotalk.psychcentral.com/search.php

Hi Cathy,
When you do see your primary care physician, ask him to send you to a neurologist in your area and hopefully the neurologists will have some experience with Tarlov cysts and help you regarding further testing such as nerve conduction studies, muscle conduction studies, etc. Then, maybe, he can refer you to a neurosurgeon that is knowledgeable in Tarlov cysts. Ask your family and friends if they can help you financially to fly to Texas when it becomes necessary to do this. First, I would have the studies of nerve and muscle and also determine what size the Tarlov cyst. The Tarlov Cyst Foundation can also direct you for more information.
Good luck.
Kathryn1

Our neurosurgeon says it CAN and does cause pain. My DAUGHTER HAS BEEN IN PAIN FOR 5 YEARS AND NO ONE COULD FIND OUT WHY. Now we know and she is scheduled for her operation in Dec. There are risks and we are worried. There must be a Dr there who does this. Call the hospitals and ask for a for their neurosurgeon and start there. Get a new primary Dr. and also be more forceful...we had to be.
J for Timy

I see you are in Oregon! I too am in Oregon and have no clue if there is a doctor here that really knows what they are talking about when it comes to this. My first "specialist" basically quit on me because I didn't just want to take pain meds so I got a second opinion and wala, just found the cyst. I am honestly scared to death. Im only 34 and have a busy life, full time job and an 8 yr old daughter. It is affecting every aspect of my life. The pain is awful. I try to cope and push through but I am getting to the point I don't want to get up in the mornings. I have to make myself get up and fight to live a normal life. I don't see anyone posting the size of their cysts. Mine is 1.2 cm which seems to be small compared to others that I have seen on sites.
Any helpful info for me? I just found out Friday and haven't even talked to my doctor yet. I got the MRI results and decided to google doctor myself. lol so now I'm in full panic mode. lol

Danni,
First: Calm down...no need to panic. Besides, that is wasted energy. The size of your cyst is not the issue, it is where it is located. Take some time and review my posts here, then the website of the Tarlov Cyst Disease Foundation, and if (when) you have further questions feel free to contact me.
"Bridges"

Did you ever find someone in Oregon to talk to about your Tarlov Cyst? I am here in Oregon too.

Cathy

Were you able to find care for your Tarlov cysts? I do hope so.

In case you are still looking, Dr. Feigenbaum does do phone consults free of charge to patients (I'm not sure if he charges insurance for them.) I was offered this option before deciding to travel to Dallas for an office visit. I'm now post-op surgery on 8 cysts of varying size, only 5 were clearly visible on MRI. The cysts were definitely symptomatic for me. I woke from surgery being able to feel my toes after losing sensation in them for a long time,

If you are still suffering, I encourage you to reach out, pm me if you like. Hope your silence means you found good care.

Cathy,

I am so sorry about the pain you are in, I have dealt with cysts before, I would love to talk with you more about this and get you on the right track to get you feeling good again! Feel free to private message me on here



rying to convince my primary care doc that the pain is not in my head, the MRI results show large Tarlov cysts. I'm getting ready to go back to see my doc (who graduated med school about 20yrs ago) and am ready to hear from him the standard reply about Tarlov cysts being asymptomatic and how they couldn't possibly be the cause of my pain.
I've already printed out lots of updated info & studies that will hopefully point out the fact that Tarlov cysts can cause a lot of pain. Even if I can convince him to refer me to a neurosurgeon, I can't seem to find a single reference online to any neurosurgeons in Oregon that has any expertise in this field.
I don't have the resources to fly to Kansas or Dallas to see the doctors who operate on Tarlov cysts, and the original injury that may have caused them to form was a fall at home-so I cannot go the workers comp route.
I'm guessing there may be other people who were once in my shoes and perhaps they can guide me on where I go from here.
While it's great to finally know what is causing my back pain as I read story after story from people sharing that same pain/problems, it's also a double edged sword if I can't get treatment to correct the problem.
Any help would be greatly appreciated, especially before I return to my primary doctor.
Thanks
Cathy[/QUOTE]

Cathy is guest/N/A..