Tarlov Cysts - Causing IC Symptoms

[suzziy]

I hope that this may help others. I was diagnosed with IC in '07. I have been to several urologists and finally found a uro-gynecologist who examined me and then ordered an MRI of my lumbar and sacral spine. The MRI showed that I have Tarlov cysts on my sacral spine; I contacted the Tarlov Cyst institute and spoke to them for over an hour. Tarlov cysts can cause the same symptoms that are common with IC - frequency, urgency, vaginal pain, painful intercourse, rectal discomfort, incontinence, etc., etc. I most recently spoke to one of the few surgeons (only a handful in the United States) that are knowledgable of Tarlov cysts and after his review of my MRI he also felt that my Tarlov cysts were causing my symptoms.

The surgery for Tarlov cysts is very risky, but perhaps those that have not responded to IC therapy may want to have an MRI done. Unfortunately there are many doctors, who still do NOT recognize that Tarlov cysts can be symptomatic and usually dismiss them.

[KarenAnne]

I googled this after reading your post, amazing! It states that this is taken care of by neurosurgeons. So were you misdiagnosed with IC, or do you have these Tarlov cysts AND IC? I hope they can treat this condition for you & you make a complete recovery!

[sailawaygrl]

I wish I could find my problems to be something that is "curable" but I had an MRI and two CT scans before my final diagnosis, so I think they would have found them if that were the case for me.

I hope that with your new found knowledge you can get help and live a pain free life again.

Sandra

[Mothergoose]

Kinda ironic I had never heard of these cyst till yesterday when I went to my neuro to get the results from my MRI and he specifically said he didn't find any of these cysts. so it is not my problem, I just found it odd that I hear this name yesterday and today I look on the site and there it is. I think even if they are not too comman people should be checked for them, if they can cause all these problems we get then we should be checked, instead of tring to go through all the trail and error of treating IC.

[suzziy]

The Tarlov cysts are causing IC symptoms. Yes, the neurosurgeon can operate but it is a very risky, tricky surgery and no guarantee of the outcome (symptoms could become worse after surgery. While not everyone with IC has Tarlov cysts, many Tarlov cyst patients have symptoms of IC.

Because of the risk I'm not so sure at this point in time that I will have the surgery.

[Mothergoose]

I don't blame you I wouldn't want to do things that my make IC symptoms worse. I guess it depend on how bad your symptoms get verses the risk of surgery.

MG

[sully02]

Suzziy,

I just read your post on tarlov cysts. I recently had an MRI because of tailbone pain and they found a tarlov cyst. I have a referral to a neurosurgeon for a consult about it. I was wondering what has happened to you? Did you ever have the surgery? If so what were the results? Of course I have been DX with IC, PFD, Vulvodynia, IBS and now coxydinia or tailbone pain. I had a nerve block done at a pain clinic and it has helped the IC but the tailbone pain is still there. I would apprecaite any info you care to share.

Thanks.

Sully

[suzziy]

Sully,

Dr. Long a few years back had suggested that I undergo neurography which would help to indicate if indeed the TC's were causing my bladder and bowel problems. There is a neurography institute in Florida; however my insurance company would not pay for it, so I was unable to have the neurography done. Also, due to the risk involved with the TC surgery, I decided not to have surgery at this time. Tarlov cysts cannot be removed, they can only be treated. As a side note, there is an interesting article in the Spring, 2011 issue of ICA Update, entitled, "Is IC Really on Your Nerves?". The article mentions an IC patient who had surgery to treat her Tarlov Cyst and was still in pain and had further tests which indicated entrapment of the pudendal nerve, which is another reason I wanted to have the neurography, before surgery. Unfortunately insurance companies don't understand the predicament or the pain that we are in.

[sully02]

Thank you so much for your advice. It seems so many family practice Drs do not even know what a tarlov cyst is along with IC, etc. Why do we get all the rare illness's. Well, really I don't think IC is that rare but still most people, including myself had never heard of it before I got it. Anyway, So sorry about the insurance companies..............I know your pain. You pretty much told me what I expected to hear. My Physical therapist told me that any surgery in that area usually affects bowel and bladder function too. Thank God so far I don't have any incontinent issues. I will look up the article in the ICA and neurograpy. So how are you doing now? What treatments are you using for you pain? Do you have been in your tailbone area? Does it hurt to sit? I see your join date was very close to mine. When were you DX? I live in Michigan, do you live in Florida?

Thanks again, I so appreciate you info.

Sully

[sully02]

Duh, I meant to say do you have PAIN in your tailbone?

[suzziy]

Hi Sully,

Yes I still have pain in the tailbone area -- I sit on one "cheek" or the other and I take no medication for pain...I just live with it. I have not had ANY doctor prescribe pain as I have not found an neurologist locally that will acknowledge TC's cause pain or any symptoms.

My primary complaint is that of IC, pain, pressure, frequency and urgency. I take Prelief with meals and snacks, CystaQ and 2 probiotics -- they help! I have tried probably six or seven prescribed meds and I didn't like how they made me feel, nor did they help much.

I also have been dxd with microscopic colitis and am taking Asacol -- we'll see if that helps.

I underwent over a year of physical therapy for pelvic floor dysfunction -- it has helped -- and do my "routine" when I start to have problems.

I am very frustrated with the medical community and am currently trying hypnotherapy (have done this for several months -- still hoping it will work).

I want my life back, so I simply told myself I will just go on...pain or not ... I am currently enrolled to go back to school and hopefully will be working as a PCA/CNA and eventually would like to become an LPN -- God willing!

Sully, I live in Florida, but I moved here from Michigan about 20 years ago.

Hope you get to feeling better -- best of luck to you.

[sully02]

Suzziy,

I admire your strength to "go on with living".............I can't seem to get there. I have had 4 nerve blocks since April and they have helped with the IC but I just had one this past Monday and they also put it in the tailbone area and yesterday I had some pretty bad bladder pain which was the first in a long time, plus it has not seemed to do anything for the tailbone pain. I know I have a tarlov cyst from the MRI but I guess that does not help much. I am still waiting to get into a neuro to see what he says. I do not have a life, at least not much of one. I seem to be in bed more than up and around. I am getting PT for PFD and it is helping also. I get instillations when the IC is bad. They help, short term. Good luck with school and I pray you find an answer to all this. My gut is telling me that all my symptoms could be TC related.......but that doesen't do much good when the options for surgery are so serious. I find probiotics to be very helpful also. I have tried so many different drugs also and they all make me feel worse. Just give me a pain pill and let me deal I sometimes think. I am lucky to have a great nurse who really knows about IC. She has been a God send.

Where did you live in Michigan? Did you have IC when you lived here?

Thanks.

sully

[sully02]

One more question for you Suzzly, do you get headaches from the tarlov cyst?

[suz z]

I am at the point of making my appt for spinal laminectomy at S2 for a perineural cyst, usually called tarlov cyst if the nerves communicate with the cerebral spinal fluid (CFS) or meningocele if they don't. The NS won't know exactly which it is until he is in there.

Just FYI - what I have learned: Radiologists routinely report that cysts are usually asymptomatic.

Two NS in the US with whom I have consulted with my imaging and thorough neuro examination say they believe my cysts are symptomatic - therefore my pain generators.

In an MRI they can see that the cyst / meningocele is taking space that pushes on a nerve - what else can it be but symptomatic until the pressure is taken away? Whether or not the surgery is successful is questionable - some people get better, at least partially but 10-20% get worse. I am going to take the chance to get better because I can't live on pain management any more, and it doesn't take away the pain enough to allow me to sit through a dinner or go out to a movie or lie down without pain.

I have had bladder problems and been on this site, diagnosed as IC in 1997. The bladder symptoms have been pretty much under control with Elmiron. However, after a hard fall directly on my sacrum in 2002 I have had unrelenting sitting /standing / lying down pain. Walking is ok as long as I am in motion but when I stop it hurts to sit or lie down.

Now the opinion of one of the NS is that the cyst / meningocele, perhaps complicated with tethered cord (he'll see when he gets in there and clip it if he needs to) is the root of the bladder symptoms, as IC is a name for a cluster of pelvic pain symptoms but has no specific pathophysiology (he said). The cyst does. Tethered cord does. Also, I have Ehlers Danlos and people with that genetic disorder are more likely to have bladder symptoms, spinal cysts and tethered cord - not necessarily, and not necessarily all of these problems.

I wonder if there is anyone else who is / has problems like mine and if yes, what did you do?

[KLee]

Just joined the forum this evening and saw your post. I too am having symptoms similar to yours. I was diagnosed with IC in 2008 and despite being sent to two different neurologists, no one seemed to catch the MRI fine print that glossed over the "incidental" perineural cysts. They didn't even bother to mention the size (over 2 cms) or the fact that the bone has been completed eroded in spots. I actually told THEM I thought I had Tarlov cysts and had to ask them to find out the size. Since this past August I've been routinely fighting nausea and/or vomiting and have had a steady string of UTIs to go with my other 'plumbing' issues. I'm thinking surgery is in my future as well. I went to Dallas and met with Dr. F, who I discovered on the Tarlov Talk Yahoo Group. Let me know how you're doing if you get this reply.

[suz z]

Just joined the forum this evening and saw your post. I too am having symptoms similar to yours. I was diagnosed with IC in 2008 and despite being sent to two different neurologists, no one seemed to catch the MRI fine print that glossed over the "incidental" perineural cysts. They didn't even bother to mention the size (over 2 cms) or the fact that the bone has been completed eroded in spots. I actually told THEM I thought I had Tarlov cysts and had to ask them to find out the size. Since this past August I've been routinely fighting nausea and/or vomiting and have had a steady string of UTIs to go with my other 'plumbing' issues. I'm thinking surgery is in my future as well. I went to Dallas and met with Dr. F, who I discovered on the Tarlov Talk Yahoo Group. Let me know how you're doing if you get this reply.

The first mention of tarlov cysts in an MRI was in 2006, then again in 2010, 2011 and last year. I was sent from one specialist to another and told that tarlov cysts were common and asymptomatic. Last summer an ortho suggested a coccygectomy because of my pain sitting and lying on my back. Yes, we did think that the pain had something to do with the sacrum, but what? I went for another opinion and that doc said not to cut off my coccyx and suggested another neurosurgeon. I had already had a total hip replacement, BTW, because they thought that might be the pain generator but it was not. So eventually I saw Dr Donlin Long in Baltimore and then Dr Fraser Henderson, also in Baltimore. Dr Henderson specializes in difficult spinal surgeries including tarlov cysts, tethered cord and chiari malformations, among other things. I am now scheduled with him for surgery Feb 11. I did fly to Dallas and consulted with Dr F as well.

Dr H doesn't believe that my symptoms are IC but rather from tethered cord. He asked me what I thought the pathophysiology of IC is and I could only answer that there are a number of theories but no one knows. Aha.

Have you had urodynamics to rule out neurogenic bladder? Seen a neurologist to rule out MS? (though it's hard to do that without a brain MRI and even then it's not a sure thing, as I have been told.)

[KLee]

Yes, I've had countless bladder tests including urodynamics. I remember the urologist mentioning the "neurogenic bladder" term, but I can't recall if they ruled it out or in. All these tests and specialists are starting to run together, unfortunately. The urologist seemed to hang his hat on IC. MS has been ruled out as there are no lesions anywhere, just the "incidental" perineural cysts that they claim are benign and asymptomatic. HA! Spoke with Dr. F today - I have 6 "large" to "giant" (whatever that means) cysts between S1-S3. They are compressing the whole sacral nerve system or whatever the "main switchboard/server" is referred to in neuro terms. Surgery will probably be in March. Let me know how your surgery goes since I'm curious as to what to expect. Good luck in the meantime.

[suz z]

Yes, I've had countless bladder tests including urodynamics. I remember the urologist mentioning the "neurogenic bladder" term, but I can't recall if they ruled it out or in. All these tests and specialists are starting to run together, unfortunately. The urologist seemed to hang his hat on IC. MS has been ruled out as there are no lesions anywhere, just the "incidental" perineural cysts that they claim are benign and asymptomatic. HA! Spoke with Dr. F today - I have 6 "large" to "giant" (whatever that means) cysts between S1-S3. They are compressing the whole sacral nerve system or whatever the "main switchboard/server" is referred to in neuro terms. Surgery will probably be in March. Let me know how your surgery goes since I'm curious as to what to expect. Good luck in the meantime.

First, please let me address specific points. Try to get copies of every doctor's notes from every visit and keep a log by date.

Second, as far as I know there is no definitive diagnosis for MS, even if you have an MRI. It's diagnosed using a combination of methods and can take years to get a final diagnosis by which time a person already has severe symptoms.

Ask Dr F specifically for his consultation notes - he told me they don't send them if not requested, He should mention in the notes the exact measured size of your cysts and their locations as well as the condition of your sacrum and the level of erosion. If you are going to get another opinion, and somehow the neurogenic bladder and MS are what everyone wants to rule out, you will be doing yourself a favor if you have all the written reports and can compare apples to apples as much as possible when making your decision. There are also different surgical procedures to consider.

If you haven't seen it, there are quite a few conversations on the Inspire Forum about Ehlers Danlos Syndrome which is a heritable connective tissue condition. Many people with EDS have Tarlov cysts, tethered cord (occult, if they are adults who didn't have this discovered when they were children) Chiari Malformations and diagnoses of IC. Dr Henderson does these surgeries. Dr. Feigenbaum does mostly Tarlov cysts and other spine surgeries but is not much into tethered cord, I think. I consulted with both of them and a few others. On the forum search for Tarlov or the name of the doc and you'll see lots of info about what to expect from surgery, recovery etc. Also where to stay, what to bring, number of days in hosp, number of days afterwards etc. Extremely helpful, friendly people. No arguments here. You will get more responses if you start a discussion as "members only" rather than open to the public. As an example I used the search term "tarlov cyst to get you to a discussion. You need to join, but it's free and no ads. Here's the link:
http://www.inspire.com/groups/ehlers-danlos-national-foundation/search/?query=tarlov+cyst&submit.x=0&submit.y=0

Best of luck - I will keep people informed of my progress there.

Suz

[suz z]

I had surgery by Dr Henderson for tarlov cyst and tethered cord last Monday Feb 11 and got home yesterday. Everything went very well. It is not nearly as bad or scary as a lot of people had warned me it would be.

Dr. H thought the surgery went perfectly and following the removal of the foley on day 3 (after having to lie flat for 3 days to avoid CSF leak) I only had to cath once and have been peeing on my own ever since! The microsurgery he did is incredible and he said when the cord was released there was immediate visible movement of the spinal cord which had caused so many bladder problems for me all my life, including for me, the need to self-cath during flares, caused by the tethered cord but I am not sure why sometimes and not all the time. Also, I had lost feeling in the soles of my feet and could not feel pinprick by this point. I was always very athletic and had been a dancer when I was young and am still strong and can do squats easily at 68. I think being in good shape will have a positive role in my recovery.

I will let you know how I do from time to time in the next month.

A have written my history in other places here, but in brief, so you don't have to go back to find it:

I was dx by outpatient surgical cystoscopy with IC in 1997 at University of Miami by Dr. Victor Politano, who I loved - may he rest in peace. He tried everything to help me but apparently I did not only have IC.

I have been on Elmiron since 2000, have done at home bladder instills as necessary and I follow my version of the IC diet faithfully. However, there were still symptoms which were bothering me - for one, difficulty starting to pee and having to self-cath at times.

In 2002 I fell on my sacrum and that physical trauma may have started the growth of a Tarlov cyst at S 2-3 which by 2012 was 1.5 cm, considered large. Within a few months I could not sit for more than a half hour without severe pain and my bladder was out of control, needing to self cath during certain flares - I am still not sure why. I went from dr to dr but no one could figure out what was wrong. They thought I had injured my coccyx and one doc wanted to remove it but I declined. I did have a total hip replacement in 2010 for a torn labrum and cyst in that hip which was thought to be the pain generator but after recovery from that the pain was still there. Additional neuropathies became worse.

In the meantime, I was sent to a clinical geneticist who diagnosed Ehlers Danlos Syndrome Type 3 with some of the characteristics of Type 4 since I had had two spontaneous ruptures of my colon. A cardiologist confirmed that my aorta is ok.

Now I believe that Ehlers Danlos, a connective tissue disorder very closely associated with Marfan Syndrome is connected to IC, diverticulosis, Chrohn's and other connective tissue disorders though there doesn't seem to be evidence that IC is autoimmune. Dr. Henderson agrees with this and there are now some articles in the medical literature investigating the overlaps.

Eventually I found my way to Tarlov cyst surgeons and to Dr. Henderson in saw him in June 2012. After the most complete neuro exam I have ever had he dx the cyst as well as tethered cord (surprise!) after sending me to uro Dr Murdock as well who said I have a neurogenic bladder - specifically detrusor bladder neck dyssynergia which is indicative of tethered cord.

I hope this information helps others who have symptoms beyond "typical" IC. (There is no such thing really.)

I am also deeply indebted to Dr Elizabeth Perez in central Vt which has been my home for 12 years (practicing at Copley Hospital in Morrisville) for her unfailing support. She has a proactive but "laid back" positive attitude without pushing intrusive treatments, which I appreciate. She also believes that alternative therapies can help while there is a role for MD intervention as well. I also greatly appreciate her psychological support for a condition which is quite depressing to live with and is dismissed by many doctors as being "all in the head." Obviously not true, although I am convinced that relaxed treatment rather than worry does help with recovery. She supported the idea of seeing additional neurologists until I get an answer about the cause of the symptoms. "Don't give up. Keep complaining until you get some answers.")

I had seen a GYN and two urologists before finding Dr. Politano. When I moved to VT I saw two urologists before meeting Dr. Perez. They were /are super! Both of them encouraged me to be in charge of my recovery rather than feeling like a helpless victim. Once I got some level of control over my own symptoms I became a volunteer support person here and at ICA. Helping others certainly helps you to help yourself because you do have to take your own advice. :lmao:

[suz z]

see my detailed report just posted

Suz