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Old 10-08-2012, 08:01 AM #21
Rob64 Rob64 is offline
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Originally Posted by kittycatdoglover View Post
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
Who did your surgery and where??? I am sorry you have new pain I hope it goes away.
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Old 10-08-2012, 09:22 AM #22
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Default I am interested as well - also have TC need NS

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Originally Posted by Rob64 View Post
Who did your surgery and where??? I am sorry you have new pain I hope it goes away.
I would love to hear a success story!

Suz
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Old 10-21-2012, 11:57 PM #23
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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.
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"Thanks for this!" says:
PaigeDean (10-10-2013)
Old 11-16-2012, 03:18 AM #24
drosophila216 drosophila216 is offline
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Default Tarlov Cysts (need your advice)

Quote:
Originally Posted by kittycatdoglover View Post
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
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.
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Old 12-11-2012, 11:20 AM #25
dhedge dhedge is offline
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Originally Posted by gabiinportland View Post
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 performed 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!
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.

Last edited by Chemar; 12-11-2012 at 11:31 AM. Reason: Linking guidelines for new members
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Old 12-11-2012, 12:26 PM #26
dhedge dhedge is offline
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Dr. Feigenbaum is in Dallas. Check his website. Just type in his name.


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Originally Posted by coralrose81 View Post
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
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Old 12-13-2012, 11:01 PM #27
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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.
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Old 07-22-2013, 04:29 PM #28
cjacky cjacky is offline
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Confused 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.
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Old 09-09-2013, 08:50 PM #29
diney1957 diney1957 is offline
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Originally Posted by Lillibet View Post
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.
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
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Old 10-06-2013, 07:59 PM #30
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Originally Posted by runninghorse104 View Post
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
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.
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