NeuroTalk Support Groups - Question others with Tarlov Cysts

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- Tarlov Cyst (https://www.neurotalk.org/tarlov-cyst/)

- - Question others with Tarlov Cysts (https://www.neurotalk.org/tarlov-cyst/40433-question-tarlov-cysts.html)

I'm brand new to this and seeking some answers. Although the diagnosis is not yet complete (I've had all the radiological stuff done but not been to the back specialist yet), after reading through all the Tarlov info, I can certainly see that as a very real posibility for me. MRI and CT indicate that is a likely diagnosis.

And you're all saying that doctors don't believe these things cause pain?!? Are you kidding?

I've got strong, burning pain in my back just below the waist (officially cysts located at L3). Some sciatic pain in left butt cheek, but not consistent. I'm 53 years old, female. 40-50 pounds overweight (and didn't every practitioner love to tell me I just needed to lose weight!). If losing 50 pounds meant that my pain would go away, I'd do it in a heartbeat!

I, too, feel better when moving. I walk three days/week with friends - I know I'm not moving the way I used to and can feel that, but at least moving helps. Can't sit for long. Standing still is a serious problem. Nights are miserable. I don't sleep for more than 3-4 hours at a time, as I wake every time I turn over. Mornings are worst for me - I need to take some Motrin and get the body moving, although how much Motrin helps is questionable. I am not currently on other pain meds - how can one work on meds strong enough to quell the pain? Perhaps I just need to learn about possible options.

I am a bit frustrated by reading the postings. It is my hope to be able to get down on the floor and play with the grandchildren I expect to have in the next few years. I cried when my family physician originally told me the pain was most likely arthritis - I cannot imagine living with this intensity of pain for the next 30 years! Luckily the MRI indicated something other than arthritis. But I still can't imagine this much pain for more than the 15 months I've been dealing with it. I really feel for those of you who have gone on so much longer already!

You have given me hope and provided some other avenues. I look forward to learning more about you and hoping for your well-being.

Quote:

Originally Posted by barbhelm (Post 229062)

I posted this yesterday but I think I did it as a reply instead of as a post to everyone on the site, so I am posting it again to be sure everyone sees it. Thanks for allowing me a learning curve for the site.

I have been diagnosed with Tarlov Cysts and I have been researching the subject for 8 months. It appears surgery is the most effective treatment (NINDS Tarlov Cysts info page).

Does anyone know how a layperson can find out the inside scoop on the few doctors who are doing this surgery?

What the doctor's reputation is among other doctors and in the hospitals?
What the nurses that work in and around the doctors have to say about them? For example, if another doctor's wife had a Tarlov Cyst, who would he send her to?!

I would also like to know if there is anyone out there who has had surgery and is now pain free, i.e., is the surgery a success or do they still have pain but just a different kind of pain.

Thanks so much for any help or insight you have...I just don't know where to turn at this point.

barb

Barb

I to was diagnosed with a Tarlov Cyst 3 years ago. My search has lead to Dr. Long at John Hopkins University. I have been able to manage till now and I am ready make contact with him.

Jay

How are you doing with your Tarlov Cyst treatment options?

Dear Gabrielle,
I am new to this Neuortalk site. I read your entry and am wondering how you are doing with your Tarlov Cyst treatment now? I 55 years old and normally a very active person. I live North of Bellingham, Washington. I too have recently been diagnosed with probable symptomatic Tarlov Cysts at the S1 & L4 & 5 levels...which explains my severe (often debilatating) bi-lateral leg pain. I have been to Neurologists & Neurosurgeons in my area, and am waiting for yet another appointment. I am in the beginning stages of forwarding medical records for aphone consultation with Dr. Feigenbaum in Kansas City to see what he thinks about my condition and possible surgery. I would love to share information with you, if you are willing.
Sincerely,
Donna

Quote:

Originally Posted by gyasenchak (Post 345180)

Hi Annette and Barb,

I am 40 years old and was diagnosed in April with a large Tarlov Cyst that starts at my tailbone and has grown through the Sacral bone. I have been to 2 surgeons that will not touch this but both have instructed me to seek a surgeon that will. I went to a surgeon in Seattle last week and was told it was between 3 and 4cm in size (the biggest one they have seen yet). I was also told that I was a candidate for surgery but the risks involved are very scary. Basically, the decision is up to me and there are no guarantees. The surgeon's name is John K. Hsiang, MD, PhD and was recommended by another surgeon at Stanford. He's done 10 surgeries in 2 years and has a pretty good success rate but was very honest and told me that I could be that one that doesn't work out too well. Appreciated the honesty but not really what I wanted to hear. I am still going to check out Dr. Donlin Long at Johns Hopkins who is supposed to be the best. There is also another doctor in Kansas City named Dr. Frank Feigenbaum...both of them are my next step.

Personally, I am still able to work but the pain is getting increasing difficult to deal with. I have burning in my tailbone and sciatic nerve pain down both legs as my cysts is located in the middle of the sacram. I have been seeing a pain management specialist here in Portland, OR at OHSU. I am on 200mg of Tramadol daily and so far it has allowed me to keep working but that's about it. I am unable to exercise or really do anything other than sit or lay down.

I am continuing my search for the right surgeon as letting this grow any larger could cause permanent nerve damage to the bowl and/or bladder. As I find more information I will post the outcome.

If anyone out there has had the surgery, I would really like to hear what procedure was done and if it worked. According to the surgeon I saw last week, there is not much info and they are just now collecting data. Long term results of surgery are not available.

My thoughts are with you both and know you're not alone. From what I've been reading there are alot of us out there seeking answers.

Gabrielle
Portland, OR

Tarlov Cyst Disease

Hello,

My name is Jason. I am a 33 year old male and I have Tarlov Cyst Disease. I had to do my own research on this like most others. After seeing two neurosurgeons that quickly dismissed the fact that it was the Tarlov cyst causing my problems. I found the best place to get my research from was the This is a very good site, it has most of the information you will need to explain this disease to yourself and to others. I have had two MRI's done now, one of the Sacrum and one of the lower back. I had my MRI sent to Dr. Faegenbaum in Kansas City, MO. It takes awhile for him to get back with you, but it is well worth it. I was very impressed, his R.N. actually called me on a Saturday afternoon. This is such a rare disease that only 5% of the U.S. population deals with. He received my MRI on December the 1st and I just received a phone call from the Dr. today (December the 17th). I have a 2.2 cm (golf ball size) cyst on my spine in the Sacrum area on the center to right side. I am going to have a procedure done sometime in February. This was actually the fastest time I could get in, due to his busy schedule. He only does surgery on Tuesdays and Thursdays. I have been off of work now since the 17th of October. I have been told that I may never be able to return to work. If anyone has any insite on this, let me know.

in trouble for a closer friend

I am really in a great trouble for a friend of mine.
She's only 39 and she has an office job, so sitting or walking is impossible right now.
So, now she's at home and she doesn't want to give her job up.
She can only work by laying down.
:(

Quote:

Originally Posted by Annette (Post 235164)

Did you get any information on Doctors for surgery with Tarlov cysts? Where is yours located?

Hi,
I have just joined and I did have the surgery aprox 7 months ago. Please let me know if you are still interested in any more info. Thanks.... kittycatdoglover

Quote:

Originally Posted by barbhelm (Post 229062)

Hi I just joined and had the surgery aprox 7 months ago. Please let me know if you are still interested in any info. Thanks...kittycatdoglover

Do any of you know of a doctor who treats tarlov cyst in Maine??

I just had an MRI done. I got the results and found out that I have a 1.2 cm Tarlov Cyst located in the S2 portion of my back. I have been to a specialist that did radiofrequency procedure and cortozone inj. The radio procedure worked a lot but the corotzone did nothing. When I went back telling her I still had pain she wanted me to up my Lyrica which I refused to do. At that point she was done with me. So, I got a second opinion and that is how he found the cyst. Anyways, I have brutal pain in my right buttox that wraps around to my hip and down my leg. It feels like someone is putting my leg and foot in a vice and squeezing. I started doing research and it looks like the only "good" possibility is surgery. Seems like it will only get worse with time and I dont like that option. I am working full time and am still very active but I just push myself through the excruciating pain. It causes me to be overly exhausted at the end of the day and I get very grumpy at work when the pain kicks in. I sit for the majority of the day so you can imagine how my pain level is. After my radiofrequency procedure to kill the nerves I was on Tramadol and it helped a lot. But she would not give me more saying it was for muscle pain and I didn't need it. I am only on Lyrica 50mg 2x daily. I hate pills and pain meds and don't want to have to take them all the time. What can I do? P.s. I'm only 34.
Dannielle

Danni,
Research, research, and research. Review the website of the Tarlov Cyst Disease Foundation, and ask more questions. There is hope, and now fortunately relief for many Tarlov Cysts patients.