Questions about Tarlov Cysts

Opie · 03-23-2011, 08:22 PM

Quote:

Originally Posted by gabiinportland

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 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

tarlovpain · 09-01-2011, 06:36 PM

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

Quote:

Originally Posted by runninghorse104

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

JeanKNC · 09-07-2011, 10:17 PM

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

Quote:

Originally Posted by tarlovpain

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

ntreader · 09-16-2011, 02:40 PM

Quote:

Originally Posted by gabiinportland

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!

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.

trista · 03-02-2012, 12:14 AM

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.

peggy chafe · 03-25-2012, 11:54 AM

Quote:

Originally Posted by Annette

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

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.

3tarlov · 04-12-2012, 09:46 PM

Quote:

Originally Posted by runninghorse104

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

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

amy93stang · 04-12-2012, 11:42 PM

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

Quote:

Originally Posted by gabiinportland

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!

amy93stang · 04-13-2012, 06:48 PM

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.

Quote:

Originally Posted by runninghorse104

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

amy93stang · 04-13-2012, 06:51 PM

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

Quote:

Originally Posted by coralrose81

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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