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?