Questions about Tarlov Cysts
 

Recently I had a MRI and It revealed a Prominent Tarlov cyst anterior at L-5 S-1...I have read many reports stating this was very uncommon for one to be located in that area.My question is will this cause sciata in my right and left leg.Also is this disableing.
Thanks
Runninghorse

Tarlov Cyst
 

Runninghorse:

I can tell you this, I have a tarlov cyst on my S-1 joint which is right on the tailbone. I do not know how large it is. I have had constant burning through bottom, legs & feet. This has been going on since 11/07. I've been to a Neurosurgeon & Neurologist for testing/MRI's. They cannot find the cause. The Neurosurgeon says it's not the cyst causing the burning. ???? It's been very frustrating.

I am still in the early stages of doing my own research. Sounds like many are since the Drs. cannot find the cause(s).

Annette

MRI confirmed Tarlov
 

I just found out yesterday that I have Tarlov cysts. I had been having severe discomfort on my left side for quite awhile, and then just about 6 weeks ago it started on my right side. I thought it was just from spasms the right side. it has been so bad that I was in bed for a week on muscle relaxers and narcotic pain killers.

I am quite shocked to read that there isn't many neuro doctors out there that are qualified in this field. I will be calling John Hopkins on Monday and Georgetown to get an appointment. I live in Arizona, but from previous illness I know to look beyond and go beyond to find the best in there field. Many internist, family doctors, and neurologist that aren't equipped with the knowledge do little good for us.

I have another rare disease that I had to go to Philadelphia to see someone there, as just being put on medication and side effects to those, etc...surgery is my very last option that I am willing to do...

I am on disability and was looking forward to finally going back to work...now this!!

Will keep you posted as I find out more and please keep me posted as to what you find out..

Thank you,

Alix:grouphug:

Tarlov cyst
 

Hiya,

I have a Sacral Tarlov cyst which causes extreme pain in my lower back and chronic sciatica all through my right leg to my foot. Having read a lot of literature, it appears that Tarlov's cysts can occur anywhere on the spine, although the occurance of pain- causing cysts is apparently rare !!, ... I do not think so. I have felt disabled for 3 yrs, have had to give up my job, and was mis-diagnosed two yrs ago !!! The two options open to me here in the UK is Narcotic based pain-relief which I don't want to start on, or relatively dodgy surgery , with severe risks. But to answer your ?, yes, they will cause sciatica dependent on which nerve root ends they are growing on.

Tarlov Cysts
 

I too was diagnosed back in early April with a large tarlov cyst and/or cysts. I have been to several neurosurgeons in my area and none can help but have been instructed to find a surgeon because of it's size (ya...that's all the help they could give me). After going to a pain management specialist, they put me on extended release Tramadol (Ultram) for the day to day pain and overall, it's working alright. I do have an appointment with a surgeon in Seattle tomorrow who has perfomed quite a few surgery's and am hopeful.

The pain management has been very helpful in getting through these last few months but I don't want to live with this pain for the rest of my life.

If anyone out there has had this surgery, I would love to hear your story.

Thanks!

Hi,
I have just joined and I did have the surgery. If you are interested in any info would you please let me know. thanks...kittycatdoglover

tarlov cysts surgery patient
 

Hello
I have had the surgery for the tarlov cysts and if anyone would like any info on the situation please let me know. I had to travel out of state and had the problems with insurance as well. Its very frustrating the lack of Doctors that can help us. I cant even find a Doctor in Mich that is willing to be my follow-up Doctor. If anyone knows of 1 in Michigan that is willing please let me know so that I dont have to keep traveling so far away. Thanks so much
kittycatdoglover

Info
 

Hi, I would love to know if the surgery was a success? Any negative affects? I also live in MI and am looking for someone to help me, I went threw 30 neurologist/neurosurgeons in the phone book and none know anything about it.
Thank you so much for your help, If I find someone ...I will let you know.
Thanks, Khris

Surgery 12/21/09
 

[QUOTE=kittycatdoglover;460319]Hello
I have had the surgery for the tarlov cysts and if anyone would like any info on the situation please let me know. I had to travel out of state and had the problems with insurance as well. Its very frustrating the lack of Doctors that can help us. I cant even find a Doctor in Mich that is willing to be my follow-up Doctor. If anyone knows of 1 in Michigan that is willing please let me know so that I dont have to keep traveling so far away. Thanks so much
kittycatdoglover[/QUOTE
I am now 4 months post surgery and have this pain I can't describe well and can't really tell if it is my tail bone or my rectum. It feels like nerve pain constant but at times worse than others. I am back at work and have been for almost a month. I also have sciatic pain on the left side only that goes to my knee and some times to my ankle. Doc (NS) they are going to want to run some test on the first pain but that the sciatic pain is not related to the surgery which I have a hard time believing since I had it before the surgery and it appeared related at that time. Any info you have about your recovery would help. Thanks Charlotte Clark

perineural cyst
 

It has been two years since you wrote about your Tarlov cyst. I have them too. I also live in Arizona. You had mentioned that you were unable to find a doctor that could help you in Arizona. Did you ever have any luck?

Who is the Dr. in Seattle?
 

Hi, I am new so not sure if this will get to you but I need a Dr. in Seattle who knows anything about Tarlov cysts AND DDD/disc herneation. Who did you see? Thanks

Yes they will cause sciatica
 

You've probably already had someone contact you about sacral tarlov cysts. Contact the tarlove cyst Foundation. I have one s2-s3. Causes bowel, buttocks, sciatica, leg, thigh and foot pain. On morphine. Would love to know if the surgeries are successful. Tarlovpain

yes ... sciatica is a symptom too ... yuck
 

hi there.... just found this group

I have sciatica ongoing ...quiets sometimes ... diagnosed 4/11 with TC
at S2 ..left side... sciatica usually left side (leg, buttock, down leg to foot);
numbness ... started out feeling like I had socks on .. inviible ones !

I am getting my MRI and sending report to Dr Frank Fiegenbaum, KC;
*edit*

Bestof luck, Jean K, NC

I'm looking for a neurosurgeon in the Seattle area who has performed these surgeries. Could you share the name of your surgeon? Thanks, and I do hope you feel better soon.

It is unfortunate but true that many well respected surgeons do not "believe" in Tarlov cysts. I had one tell me that it was "hogwash". Wow. Well I am one week post-op from having the surgery to treat my cysts performed by Dr. Feigenbaum. The post-op pain is not nearly as severe as I had imagined. The recovery process is slow and and improvements in my symptoms are still pending but supposedly that is normal. Nerves need time to regenerate...much longer than muscle tissue.

hi i am new to this site and was wondering if you can answer questions i have about tarlov cycst i feel it will help me to speak to someone else who is suffering from this horrible diease.ive been bed ridden for 3 years now and i am looking for someone who has extreme burning in my vagial area when i urinate.did you ever hear of any1 having similar symtoms.

sciatica
 

Lots of pain in the hip and buttocks with sciatica down the whole leg.

Tarlov Cyst
 

I had surgery for Tarlov Cyst 12-5-2011. I had 5 giant sacral cyst. They removed 1 and drained 4. My pain was unbearable the last 6 months before surgery. Dr. Feigenbaum in Kansas City did my surgery. They told me I was one of the cases he has had.
I'm still in pain but not 24/7. I'm glad I had surgery to get rid of some of pain. I'm 40 if I don't get better than what I am now. I will try more sugery later.
People just don't know what kinda of pain we go through. If you have any questions please email me. Amy

Sciatic nerve
 

I had laminectomy for S1-S3 area on the 5 giant cyst. I nerve had sciatic pain before surgery but I did after for a month. It was a horrible pain it got less and less over a month period. My doctor said probably because that nerve was compressed by cyst. When cyst drained it started functioning more. I was a sever case. Hopefuly yours wont affect you.

John Hopkins
 

I sent my MRI"s to John Hopkins they wouldn't help me. I had surgery Decmeber for my cysts. I had same symptoms as you. Mine just kept getting worse. I hope they help you . Amy

Who did your surgery and where??? I am sorry you have new pain I hope it goes away.

I am interested as well - also have TC need NS
 

I would love to hear a success story!

Suz

Okay....here is my success story. I was injured in a fall in March of 2006. I got "stuck" in the madness of our workmen's compensation insurance system for six months, then was released when they said there was nothing more they could do. I refused to accept the Dr.'s prognosis that I would never recover, and that I would gradually get worse. While the perineural/Tarlov cyst was apparent and noted on the first MRI, it was noted as "incidental". Follow-up with specialists around the country confirmed the presence of the Tarlov cyst at T5-6, but it was always dismissed. Even though I had been declared "permanently total disabled", there was nothing that could be done...only medications to ease my pain and symptoms.
I did a google search of tarlov late one night, and found the Tarlov Cyst Disease Foundation website. Eventually I made a connection with the staff of Dr. Frank Feigenbaum, and this is where the "success story" begins. From the date of my first contact with his office to my first "personal contact" with Dr. Feigenbaum, nearly a year had passed. During that time he reviewed my extensive medical records, then referred me to a "teaching unversity" for a complete evaluation and non-invasive treatment at their pain management center. On November 30, 2010 I was given the opportunity to once again be a productive member of society, and greet each day with joy.
During my years of disability, I lived with continual pain, thousands of muscle spasms per day, a life controlled by medication, and limited mobility. I am no longer on medication, no longer use two canes to walk, no longer experience the muscle spasms. I am back to operating my construction business, running my farm, hiking, canoeing, rafting, and enjoying life.
Yes, Tarlov cysts do cause pain and other systems. And no, the world is not flat. Slowly, the world is becoming informed.

Tarlov Cysts (need your advice)
 

helo kittycatdoglover

i'm ethan from malaysia. i have a 33 year old girlfriend who just recently diagnosed with Tarlov Cysts. she has 2 of them at the S1 and S4 part of her back bone with the size of 0.8 and 1.3 respectively.

she also suffer from autoimmune disease and pain on some part of her joints and body. she always tired and not in the mood sometimes and abit of libido. yes i expected the doctor didnt have any solution for this medical issue.

please help me to help her recover. i really in need of your advice so much.
i love her very much and its killing me to see her like that. she a lovely young lady. she is a brilliant baker & sugar artist.

please help me, i really need your advice.

please email me and thank you for lending me your ears.

I had tarlov cyst surgery in April of this year in KC with Dr. Feigenbaum. I would recommend his team to anyone with this terrible disease. To contact his office immediately. *edit*
He is strait foreword and will help you.

Doctor
 

Dr. Feigenbaum is in Dallas. Check his website. Just type in his name.

I have just been diagnosed with these cycts in my cervical spine (C-6 & C-7 and T1 & T2). I have been trying to find more info but it seems these are very uncommon in the upper spine. Can you help me to find the info related to my condition please? Any info would be helpful! Thank you.

What kind of doctor to see for Tarlov Cysts
 

I was in a car accident a little over a year ago and starting the next morning I began experiencing severe low back pain that has only gotten worse. I never had back pain prior to that. I was however having tingling in my left leg that was keeping me up at nights, some nights only getting 2 hours of sleep. When the back pain started, it seemed the tingling moved from the left side to my right hip down through my right leg. The pain in my lower back is excruciating some days that I throw up as soon as I wake up in the morning. I have so much trouble just going up and down steps. I have always had an active lifestyle before this all started. I used to always go hiking, kayaking, biking, running, and now I am in pain just from driving to work 3mi from my house, or getting out of bed is very painful. The most simple things that I never even thought about before, now cause me pain daily. I went to chiropractic therapy for several months, then physical therapy, and even did acupuncture for awhile. Nothing has helped. It took 6 months before my pcp referred me out to a specialist. I saw a physiatrist that said that I had a tear in the sacroiliac joint & two herniated discs. He was more concerned about the joint so did a sacroiliac injection which was horrifying! It did me more harm than good. I could barely walk for 4 days and the pain was unbearable. Needless to say, I didn't go back. My pcp then referred me to pain management. At first I felt like there was a light at the end of the tunnel, but after awhile and after 3 spinal injections that did not work for more than 2 days, I feel like their treatments are not working for me, and that they are fine just keeping me on heavy pain meds. The pain meds help, but they wear off and I don't want to be on them forever. I want a resolution to the problem. My MRI showed that I have 3 Tarlov Cysts and like many of you, the doctors are saying it could, or could not be causing all the pain, that they can't really say for sure. I'm at my wits end and this is getting depressing. I just want my life back and am tired of pain getting in the way of enjoying life the way I used to. What kind of doctor do you see for Tarlov Cysts? I'm not at the point of giving up yet, but I know if I go to another doctor that is useless, I just might get to that point. Does anyone have any recommendations? Neuro or ortho? I just want to make sure I see the right doctor so I can try to get the help I need.

I have them in my low back, causing me sciatica pain, as well as a bit more uncommon. the neck area. the pain I am in is debilitating. I know we can all sympathize with each other. I am taking carisoprodol for fibro pain. that is what I am taking at the moment, as I have had such bad reactions to many of the pain relievers. and which one of us just wants to mask our pain. we need something done in our behalf

I have one in same area. It is two the right of s2. I think it is from being thrown from a horse. I had very bad sciatica upon the first injury. Couldn't walk for a week. Over last five years have become steadily worse. Have sciatica down both legs and numbness and tingling going to both feet. Thinking very seriously about surgery with Dr. Fiegenbaum. It's been a real struggle since 2009. Have been putting off surgery because of horror stories I've heard about returning cysts, especially for those who have the herpes virus from shingles or chickenpox in their bodies. It resides in the s2 spinal nerve area. **. My health has really deteriorated.

Trista, would you have the surgery again
 

Trista, would you have the surgery again? I've been contemplating for several years. I haven't heard from anyone that is a more than a year postop and I hear the cysts reoccur and sometimes come back worse.

I had an contrast pelvic MRI looking for Pudendal Neuralgia. I have Vulvodynia a very severe burning pain. The MRI diagnosis was this.

"There are
bilateral sacral Tarlov cysts seen at the S3 level measuring 1.4 cm
each, but of doubtful clinical significance."

Are those small cysts?
That was a year ago and decided to have my primary Dr. look at that MRI again. Could it cause damage nerves in the vulva area? It is nerves from what they told when I was diagnosed with Vulvodynia.

Jewels,

Isn't it interesting that "Vulvodynia" is a disease with "unknown etology"(in other words, they don't know what causes it!) You are right...your problem very definitely could be coming from the Tarlov Cyst(s) you have. In the sacrum is where all of the nerves leading to the bladder, bowels, genitals, pelvic floor, legs, etc...passes through. ANYTHING compressing nerves can cause pain, nerves to "misfire", or if left compressed long enough.....one can be left with permanent nerve damage to all of those areas.

I speak from experience. Research, research, research and find the best doctor you can and sell your soul if you have to, but seek advice from a doctor who knows about these cysts!

Size doesn't rule whether or not nerves are being crushed....neither does an MRI always report the fact that one has TC's...much less report the proper size of them....some are bigger than they appear on an MRI.

Good luck,
Cathy

Thanks for your input Cathy. I unfortunately belong to an HMO but wonderful one. I've had 3 opinions now and they all say it's probably not the cause.I've gone to dozens of Drs. in the HMO and outside of it. After getting the Vulvodynia the following year I developed numb toes and burning feet and legs. Now, they say it's not connected BUT I disagree. I know my body better than them. Vulvodynia is nerve damage too.I just don't understand it. It really doesn't matter much. I get such bad reactions to all the medications for neurpathy except Gabapentin. I take 1200 for RLS since 1999 and as far as I can tell it's not helping the neuropathy. (SFN) I give up on Drs. Research, research, research!!! I especially don't like Neurolgists. They are arrogant, all of them. Thanks for letting me vent. :)

I am new to this. My Timy has a tarlov cyst in her tail bone area. Her pain is in her left leg and thigh and butt cheek. She has been in pain for 5 years and no one could find out what it was. We have exhausted all other possibilities and we are sure this is what is causing all her pain. She is scheduled for surgery in Dec. It is risky tho. So we are worried! I would assume that any cyst on the spine could cause nerve damage or at least pain. You need to see a neurosurgeon.
J for Timy