Hi Annette,

I do have more than one but not as many as some folks have, or so it seems. I do have some other problems with my back but will just mention the Tarlov Cyst findings, unless you want more, which is ok too. Here is the quote from the last MRI. “1 cm Tarlov cyst along the right S2 nerve root.. A 1.7-cm tubular nonenhancing lesion along the right S3 nerve root may represent a nerve root diverticulum or a perineural cyst. A 1 cm enhancing lesion at S2 is minimally hyperintense on the T1 weighted images and may represent an atypical hemangioma.”

That covers the number and locations. My symptoms are severe tail bone pain and rectum pain. I also have pain in my right butt cheek. I cannot sit for long without the pain increasing and my legs (both) go numb but it is a painful numb. The cysts have caused me to have to urinate more often, or so it seems. I cannot feel when I need to have a bowel movement and have had a couple of mild accidents and many close calls. I can give more details on that if you need them but it doesn’t sound like what you are experiencing. I do not have arm/hand problems at all but others, on the sites I mentioned previously, have stated they do. When that is the case, I believe their cysts are located more in the thoracic area of the spine. My pain is a hot burning pain and I walk around with an ice pack on my tail bone/lower back most of the day. I start the day on a heating pad to get the muscles loose but w/in a few hours after moving around, I have to get the ice pack. I find relief throughout the day by switching from moving/walking around the house to sitting, then to laying down and repeating the routine. I too get relief from laying down. Some on the sites can only lay in certain positions to find relief and some cannot even stay in bed for more than a few hours due to the pain it causes. I have been practically housebound since this all started because if I do much of anything, it causes the pain to increase to the point of making me sick at my stomach. I cannot do any exercises as it brings on the incontinence and I just cannot handle that. When I cannot handle the pain, I take the Rx, Norco but only at night as I cannot stand the foggy brain it gives me. It also constipates me, which makes the pain worse, so it is a balancing act in all areas. When I am constipated and have to bare down hard, my legs go to sleep/numb and the room swirls and I feel like I am going to pass out. I have the burning pain 24/7 that I try to ignore and it is exhausting and taking a toll on my nerves I believe. IF I do go anywhere, where I will have to sit, I take my pillows, one for the lower back and one to sit on. There are some folks on the sites that have a "gel cushion" and I am going to look into that but for now, the pillows allow me to sit a little longer without having really nasty pain develop about two hours later.

There are some people on the sites who have had to go on Workman’s Comp or SSDI due to the Tarlov Cysts. I can’t recall your age but some of them were way too young to have to give up their jobs but they eventually had no choice. I notice you are from ILL, there are a few other folks on the sites from ILL too.

I hope some of this has helped. Feel free to ask more questions but, again, I am still new at this in many ways. I remain frustrated because doctors do not believe these cysts cause pain, they are wrong. I do recall saying I thought surgery was the only solution, in a prior posting but I am not sure I would say that now. There is aspiration of the cysts that have given some folks relief, some for only 3 days and some for many months and counting. There are doctors who try to fill the cysts with a glue of sorts but that doesn't have a good track record and if surgery is needed later on, it makes the surgery more complicated and the results less promising.

I am watching both the talk forums and the TC Foundation sites to see how people are progressing after their treatment, before I move forward to seek help. I say that now because I have a very high pain threshold and have been able to hang on while I watch for results. There are those who do not have a choice it seems and go for treatment asap so I don't want to wait too long - hard to know what to do or when to do it.

Barb-CA

Hi Barb,

I am 42 & this started 5 mo. ago. I do know that I had the cyst 3 years ago, but at that time, the physical therapist didn't make any big deal about it. Plus I didn't have any complications except for chronic lower back pain at that time.

Here's my point..........I don't want to get to the point to where it is disabling for me. I am too young for that. I still work & enjoy my job. I love working in my yard in the summer, taking vacations, etc. I'm trying to be optimistic about it. I do pray a lot & always seek God for guideance/direction/healing. I'm not giving up hope. I want to continue to enjoy life, travel, & enjoy my grandsons.

I am so sorry that the disease has confined you to your home. I will keep you in my prayers as well. I do know God is BIGGER than all things. If it's His will, He can heal each of us. God never promised us a good life here on earth. He did promise that each of us would go through trials. And with trials, it builds strength, our character & helps us to perservere another day and helps us to help others going through similar situations. Just like us.

All the information you have provided has been helpful. Thank you. In the meantime, until we both find the right Drs. who are experienced with these cysts, I will keep praying for healing for both of us. You'll be amazed of what the power of prayer can do.

Again, thanks for all your info. & support.

Annette - IL

Barb,

I do apologize. I re-read your note, it looks like you are able to get out & do some things & you are not totally confined to your home. Sorry about that.
I do know how frustrating it is not having complete quality of life back.

Again, I am thinking of you & will continue to pray for healing.

Annette - Illinois

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

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.

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

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.

Hello Gabrielle,

Your post has good surgeon information. Thanks for posting.

I have been just diagnosed with TC and I am trying to get as much information as I can. I have not seem the neurologist to check my treatment options as I just got an MRI yesterday. He emailed the results at my request. My symptoms are the common ones of the disease but only flare up when I exercise. I am pretty scared this disease will get worse and disable me. I wonder if your symptoms were consistent and daily from the start? and if you got surgery and what are the results? I guess I am curious what is the progression of this disease but I want to hear it from people not literature (as it seems very general).

Yuliana
Portland, OR

Hello Gabrielle,

I have been just diagnosed with TC and I am pretty scared about this disease.I have not seen my neurologist yet as I just got the MRI done and I asked him to email the results. Thank you for posting surgeon info. It's helpful. Were your symptoms constant? Did they progress/get worse? I have many of the common symptoms of the disease but they only flare up when I exercise. I believe I have had this for at least 3 years and I am curious to know if people's symptoms got worse over the years. Also, did you get surgery?

Did you end up surgery? What have you done?