Health Organization for Pudendal Education

Hi all, Tiny Dancer sent me a PM about Tarlov Cysts, and I asked & got her permission to post the exchange up on a thread because there was valuable info on the old board which was lost, about the role of tarlov cysts in PN. So below I am just going to post her initial inquiry and my reply, just to start a discussion about the topic which anyone can add to when they have information or questions.

TINY DANCER:
Hi,
I'm the one that just saw Dr. Hibner and he put in a pain pump. He also had one more MRI done and this time they said that I had a couple of Tarlov's Cysts on S2. I noticed that you too said that you had a couple of them and so I thought that I would write to you.

I've never thought that my symtoms were exactly like the PN pain that everyone else had. In some ways and others no. No one else has severe pain in their hip and then the leg collapses after a long time of laying down, like when I wake up. I have been tested and tested for something wrong with my hip and nothing. I've been to three PTs including Loretta and they can't find a reason for it. Then I looked up symtoms of Tarlov's Cysts and I had every one of them. The one that bothers me the most is the fact that my symptpms can disappear for a couple of months and then come back for 8 months but the problem with my leg never goes away.

Do you know how large do they have to be to cause problems? I wish PNE surgery would just fix my problem but I'm afraid that I would have surgery and it wouldn't fix anything. And it even more of a gamble to have the cysts worked on!

What are your symtoms and do you know what you're going to do? I'm afraid that I'll loose complete control of that leg and my bladder if I don't do something.


HER MAJESTY (ME):
Hi, There was a big thread on tarlov's cysts on the old board with lots of info which is now lost but one thing I noticed was that EVERYONE on that thrread who had PNE AND tarlov's cysts, had them in the S2 distribution. My remaining symptoms correlate beautifully (if you want to call it that) with S2 distribution issues - if you can find a dermatome map you will see where that is at - S2 feeds directly into the anal area and also upper pubic, that is, not vagina or vulva but up where the hair is. These two areas are exactly where my symptoms are. Also I have painless residual urine after a void which predisposes me to frquent bladder infections, and urinary residual is I am told common for tarlov cyst syndromes.
I have no idea how large they have to be to be a problem - just that several Docs have told me that mine are VERY large, and mine measure 1.1 cm on the right (which is where I have greater symptoms and according to the MRN, greater pudendal nerve inflammation), and 7.0mm on the left (where i do have inflammation and symptoms but less so).
I found this site:
http://www.tarlovcystfoundation.org/Home.asp
and when I used the "contact us" form to get info, I got a personal phone call from the Foundation President the next day. She is an RN and she had lots of info for me and answered all my questions. There is a "find a Doctor" section of the site - she said the game plan if you want your issue addressed is to get a full sacral MRI - none of the Docs want to bother with you unless you have one - get 3 copies, keep one, and send out one each along with your records to 2 Docs on the list to get opinions. She recommended for my geographic area (NV), that I should send one to Dr Schrot at UC Davis in Sacramento, and one to a Doc in Kansas City which I have not done yet. I have spoken personally to Dr. Schrot's assistant on several occasions and have sent my info to them > 2 months ago, but so far no luck...he gives free phone consults to tarlov cyst patients and then will work with your insurance if you decide on treatment, but apparently this has led to him being inundated with tarlov cyst patient records so they are NOT prompt about setting up phone consults. And so it drags on.
My understanding is that the least invasive tarlov intervention is fenestration (removal of the spinal fluid from the cyst via needle), followed immediately by fibrin gluing to keep it from re-filling; however this has fallen out of favor for some reason (not sure but I think they might eventually be coming back bigger?), and only 1 Doc on the East Coast is doing it now, or so I heard from Dr. Schrot's Assistant. The other treatments I will have to discuss with the Doc when I get my consult but last I heard from the old Board - they are very invasive - like opening the cyst and packing it with fat, which requires sawing through the sacrum...not sure if this is true but if so, no way! So there is the issue of the cure possibly being worse than the disease. I have also heard a rumor that Schrot is kind of like Filler in inflating his successes and publishing "success" case studies on patients that are not really doing all that well...so I don't know if I will elect to do anythig since I am fully functional at the moment and it might not be worth the risk of getting worse. Sorry I don't have real solid treatment info, but the way to get that is definitely to get the sacral MRI and start setting up phone consults.
Another thing, regarding the hip: I think when you talk about having "all the symptoms": the things people believe about tarlov cysts are very vague and mixed up because they are confused about cause and effect. I had a severe, complicated pattern of pelvic joint dysfunction for 25 years, which in my opinion, probably CAUSED the tarlov cysts through pressure on the base of the spinal cord. I became 75% better when that was corrected, and then found out about the cysts...by no means do I think I was just unlucky enough to have to coincidental conditions! I strongly believed one caused the other, and for a cyst to cause a joint injury makes NO sense. They are mixed up about this a bit on the site I linked you to, because they list symptoms people with symptomatic tarlov cysts have, and some are OBVIOUS joint dysfunction symptoms, like "feeling like you are sitting on a rock" - I used to have this, it is due to a taught sacrotuberous ligament secondary to downslip ilium. So, while no one officially knows what causes tarlov cysts, I strongly believe one cause can be joint dysfunction in the region. I suspect the issue with your hip is in some way a CAUSE, not an EFFECT, of the tarlov cysts and must be treated separately...does this make sense? All my current symptoms are logical to be caused by a conduction disturbance at S2, but all yours really are not. Are you the one that was just told you have edematous bone marrow or something? Keep in mind the list of "tarlov cyst symptoms" are generated by people who have both pelvic pain and tarlov cysts, and some probably have the cysts as only 1 component of a more complex pelvic dysfunction syndrome, as I did.

Hi,

I was one of the one's who posted a lot on the thread that got lost? Long story short. It was thought I had maybe had PN (well I did, from the TC compression on my S2-4 nerve roots) and vulvadynia, after a years search, someone who knew what they were doing at Hopkins did a sacral MRI. I had 4 Tarlov cysts, some quite large, over my S2 to S4 nerve roots. Of note, size doesn't matter with the severity of symptoms. You are either symptomatic or you are not. For diagnosis I had a pudendal and a S2 nerve root block done by Dr Kathuria at Hopkins. Both had a positive but very short lived pain relief. I also had full flex extension xrays of spine. I had no other spinal abnormalities. It was decided the cysts were causing my PN pain.

At Hopkins I was advised to see NS Dr. Feigenbaum in Kansas City, so I sent my MRI to the most experienced of the 5 neurosurgeons in the US that will touch these buggers. Currently that is Dr. Feigenbaum. The wait was long as you can imagine. I was Dxed at the end of Feb and had the surgery the end of Aug.
Two days out of the hospital I was at KC clubs laying down listening to music. ten days after the surgery I was cleared to fly home. The surgery itself is invasive but well tolerated, pain management was good. I was in the hospital for 5 days. They gave me a suite, with an attached room for my husband to sleep. It was very big and private. He stayed the whole time. The surgery is not the butchering the poster before me imagined. I had 2 sacral laminectomies over S2 and S3, it was a 3-4 hour operation. Basically he carefully cut 2 small boxes in my sacrum, the nerve roots were freed from the cysts, the cysts space was packed with my own fat, then the dura was wrapped so they can never return. My own sacral bone (lamina) was re covered over the small boxes. Then my severely eroded sacrum had a resorpable plate placed over it, to strengthen the area. That is my understanding of the operation after reading my surgery report and talking with Dr. F. My scar is 6 inches long, very thin, like a cat scratch, and healed in weeks. The recovery period is 9 months to a full two years for complete healing. Many can start back working at around 3 months, some wait till 6 month. I was walking 40mins a day by week 3. The only drag is you have to rest (lay down) when ever you feel the pain increasing, this careful paying attention to your body keeps you from going into an extended flare. The added bonus is when I lay down I can often get to a pain level of 0!!! Unbeleivable, I'm still me! I forgot what it felt like to not be in pain. I learned what not to do based on the tarlov forums and others mistakes. This month I started PT for my pelvic floor dysfunction. we will work on my sitting, and getting me ready to be able to have sex. She is doing the same stuff as if I had the PNE surgery and adding scar mobilization and low back rehab.

I can sit for 15 mins a few times a day and getting better and longer each week. I have no bladder and bowel pain, since week 5. I have one spot right side buttocks into perenium (lower vulva) that is numb and still has nerve pain. At three months I am very early in my recovery but I am full of hope for a full recovery. Most days my pain levels vary from 0-5. I am wearing pants and underwear (loose) but still huge after a year in skirts!!! PT and time will address this. I can do all my housework, except vacuuming or heavy lifting. I have not returned to work yet as my profession involves sitting and playing a large wind instrument. I am waiting till spring to start back after I strengthen my pelvic floor with PT. Until then thankfully my husband has a steady job in the Army. The military insurance paid completely for the surgery, including, transportation, food , car rental and food for both of us. I did have to write a letter of necessity for out of network, out of state benefits. It went through without any appeal.

I am starting online classes towards my Masters in January, Joining a choir (to do something musical) and starting a Chronic Pain Support group in our area to give back, and have a place where people can share, get support and keep a positive attitude.

For over a full year I prayed each night to die. Now I pray for all in pain to find their way out and to have the strength to hang on and keep searching. I am grateful to all who reached out to me, esp. Celeste and BBC and the guy from Louisiana ... Gary I think? I have a gratitude that knows no bounds, for forums like this and Tarlov Cyst Disease Survival, and Straight_Talk_Tarlov_Cysts, as well as to Rita at the Tarlov cyst disease Foundation. A great resource for info on the latest treatments. Anyone who has not had a full sacral MRI looking at the nerve roots should do this, but please make sure to ask!!! "Do you see any Tarlov or Meningeal Cysts..." some radiologists have not read the recent medical journals and dismiss them (based on very old information) and don't bother to note them on the report. This happened to me, causing my diagnosis to be delayed a whole 11 months. A quote from a Tarlov specialist in 2006 " in general it takes a man 8 months to get diagnosised with symptomatic Tarlov cysts and it takes a women 2 1/2 years as she goes through various obgyns, urologists, etc. a typical women with TC comes with a misdiagnosis of Pudendal Neuralgia." The symptoms are virtually the same, if you have low back, sacral, hip and leg pain as well as the PN , the chances are even more suspect that TCs are the root cause. Of course not every one with PN pain has Tarlov Cysts, but I'm betting the numbers are greater than we think. In my area alone, I have 2 friends and one brother of a friend that now are on their way through the TC surgery waiting list. My urogyn has 2 other patients that were like me, she sent them for the sacral MRI and sure enough they have them. That is the cause of their bowel and bladder, vulvar pain.

So sorry for the long winded post, I haven't been on this forum for a long time. I hope my experience can be of benefit to others. Feel free to email me if you have any other questions.
My heart goes out to you all. there is hope!

yoland!!!!!!!!!!!!!!!!

I'm THRILLED to read your update! I've thought of you so many times since we tallked and wondered how you were doing, what with concern about the surgery, the wait time, your husband being deployed, insurance coverage, what to expect, the uncertainty, and finding a patient advocate.

I'm so happy for you and wish I was local so I could give you a big hug. Greg doesn't post on this forum but next time I talk to him I'll let him know how you're doing; I know he'll be happy for you, too.

You made it through a really difficult year; I hope 2011 holds nothing but goodness for you!!!!

HM - great thread! thanks for sharing.

And Yoland thanks so much for sharing your story. You sound like you are on then road to recovery after the usual frustration with finding a diagnosis. Good luck to you in becoming totally pain-free!

Does anyone happen to know if Dr Potter can spot Tarlov cysts with her MRI?

Hi Griff 522,

Almost anyone can see the cysts on a regular MRI ( always on a sacral MRI) if the scan goes low enough. As most cysts are on S2, you would be looking at the S1 to S5 area, right where the spine curves inward. Tarlov Cysts with look like little dark or light ( with contrast) balloons obscuring parts of the vertebrae. Easier to see on MRIs with contrast. You can google Tarlov Cyst pictures to see and then compare your own MRI. Once I read a post on the IC forum that sounded so much like my story I went to the Tarlov Cyst Disease Sites, read the "Physician in Pain " story and knew I had something. The road was straightforward from then on. Hope this helps. The answer is yes, if they go low enough. You might want to call your ordering GP and ask if they can go lower or add on a Scaral MRI: attn to the S1-5 newve roots to your scans. Tell you you have reason to believe you might have symptomatic cyst and you want to rule that in or out of the overall picture. Good luck and let us know what you find.

Thanks Celeste! I think I used to post under my legal name. Yoland is my birth name as was until I was adopted at age 4.
joy

The area to look for on the MRI , I meant was at the bottom of your spine to L5 there the spine curves ( outward then back in, then the tailbone) That's the place. You can google sacrum to get an idea. Cysts are usually on the sacrum the curving out part.

So in order to see these cysts the MRI must be done with contrast? I don't believe Potter uses contrast does she?

Griff, no contrast was needed to see my cysts, they were caught on my MRN and then on the routine non-contrast sacral MRI. The most significant problem is that they were for so long thought by the medical community to be asymptomatic in everyone, many radiologists do not bother to report them. You must insist when getting your MRI that it be communicated to the radiologist to note any tarlov cysts in the report.
Yoland, thanks so much you have motivated me to check out the KC guy and/ or Johns hopkins. I waited 3 1/2 months for the phone consult at UC Davis and then that Doc was very uninterested in my tarlov cysts for some reason (he has seen larger it seems), and wanted me to come to UC Davis to see a urogynecologist who does pelvic floor (been there, done that), and for him to drain some cerebrospinal fluid, not from the cysts but just the spinal cord to reduce overall CSF pressure (????) Then put in a shunt if that makes me feel better (???) Never heard of that helping symptoms like mine, has anybody?
So looks like I need to look elsewhere; thanks for the tips / success story.
From your experience, do you think it would be realistic for me to drive about 2 - 3 months after such a surgery? My kids go to school a half hour away and so I am thinking about if I had a tarlov surgery done at the beginning of the summer, could I make what is essentially an hour commute twice a day, 5 days a week commencing at the end of summer? If not unfortunately I don't see how it could be an option for me. But I am certainly interested in the diagnostics so that I could see if it is worth trying to work something out about the school. It doesn't seem I got any tarlov answers from UC Davis at all, would like to get the care and information that you got. Do you think Johns Hopkins is a necessary step in that, or considering I am closer to KC do you think I should just go straight there? Thanks!

Hi,
Personally . If you are interested in the surgery I would go straight to KC. Get on the waiting list for a consult. You have the MRI, He will want it to be a Sacral MRI. With and without contrast , although if you can't do contrast for whatever reason thats okay. the only other things to get done in order to speed up the process is he wants a full flex extention spinal xray, and he ( Dr F) might ask for a Dx nerve block ( CT guided is best) around the area of the cysts. If you have relief ( about 8 hrs) from that lidocaine block he will consider your cyst( s) syptomatic. Size doesn't matter, he will be able to tell if they are a problem by the MRI.

So steps are: Call debbie West , his assistant, download and fill out the paper work and send a copy of the MRI you have, that puts you in line.
As you can get and send on : 1) A Sacral MRI attn to S1-S5 Nerve roots, with and without contrast, contrast optional if you already did a sacral MRI without or can't do contrast for whatever reason
2) Flex/ext xray of spine
3)Nerve block around cyst to give more Dx weight to cause of symptoms
Call every once and a while to see where you are in line, As it gets close have your cell will you at all times, he calls at odd time
He will give a free consult on what he thinks and if he can help you. His office will send a report to you and your doctor. At that time if you are a surgical candidate they will book a date and work with your insurance company. He accepts all insurances. If you have no insurance they will still try and work with you. Approx time is 3-5 months for the whole process. My insurance which is not great paid for everything.

The shunt process is an older way of dealing with this, it isn't done anymore because of very poor results.
Most people can drive by 6 weeks, It isn't comfortable but doable and gets better each month. I am driving about an hour total a day. most days its fine. Just a little sore in the tailbone area. But very doable. ( Im at 3 months)

Get good pain relief while you wait, I tried it all, for me, methadone, with morphine for breakthrough worked best. Off and on I still use Lyrica. I used atarax for bladder pain. And lots of heat and Ice. In my experience I did 18 weeks of pelvic floor PT it did nothing but flare me up until I got the TC surgery. Now I'm back at it and it's helping. Hope to have sex soon. Can wear underwear and pants, can sit on cushion for a couple hours a day total. Stand for 3 hrs at a time. This surgery takes 1-2 years for full recovery so I have a lot to hope for. So far all rectal and bladder pain and dysfunction is gone, leg pain gone, vulvar pain gone except one small spot, vaginal atrophy gone, weird swelling in vaginal/vulvar and sacral area gone, internal pelvic pain gone, evening headaches gone. Just have sitting issues and lower right butt area of discomfort, sex will come with pelvic floor rehab, I just started 2 weeks ago.

About the headaches , talk to Eric on yahoo group tarlovcystdiseasesurvival that was his main issues, he took some meds that helped while he waited for surgery. lay down as much as you can, that helps the most for now.

join the tarlov forums ( but maybe not the europe one, its really negative and scary, mostly off topic fear mongering it is basically run by one women and everyone else is censored to her agenda) just my experience, I think her heart is in the right place but I question the rest of it's usefullness. My humble opinion oh also join the tarlov cyst foundation, they do great work and the nurse would helps run it has a lot of advice and info as to what is and isn't helping us.

Beat of luck

Best of luck to you, feel free to email me is you have any questions

Thank you very much, I will get on the process. I have spoken to the nurse who runs the Tarlov Cyst Disease Foundation on a couple of occasions and she was very helpful. My mistake was she told me to get the full sacral MRI and send it to Sacramento and KC but I just did Sacramento because it is closer. So now I am back to square one obviously!
I am glad you are doing so much better and your report is very encouraging. Again thanks so much.