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Old 02-24-2014, 10:09 AM #1
dwigs dwigs is offline
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Default Tarlov Cysts - Steroid Injections

I am new to this site.

I have never had any back issues & have absolutely no idea what to expect BUT, I have read enough post to believe I could use some advise from others experience. My symptoms have been present for 8 weeks. Some improvement from Chiropractic.
MRI showed "S1-S2 level shows bilateral small Tarlov cysts with mild smooth expansion/ end oatmeal remodeling of the sacral neural exit canals." "L5-S1i intervertebral disc has severe narrowing most marked posteriorly. The moderately dehydrated intervertebral disc has mild posterior broad based annular bulging producing direct contact upon the S1 nerve root bilaterally greater on The left side."

I have no idea what that really means.
Pain levels walking are 0-1.
Pain levels laying down 0-1 but sleep has been restless for years.
Pain levels while sitting have become 1-2
Pain levels when standing up & first 10 steps are 7-8

This has been pretty consistent for 8 weeks now.

My urgent question is:
I'm scheduled next week for "epidural steroid pain management injections"
The imaging medical clinic will preform procedures.

I understand this is not a fix but,... Is there a risk of the injection making things worse ???
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Old 03-02-2014, 10:37 PM #2
jcyster jcyster is offline
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Default Tarlov cyst & stetiod injections

My advise........run like hell! Any medical professional who would suggest any kind of injection into the spine of a patient with tarlovs cysts is out of their minds. First they have no knowledge or experience what so ever with these cysts. If they did, they would never offer steroid injections.

I am a tarlov cyst patient who has been researching these cysts since 2005. One of my 3 cysts became symptomatic last December. I have been to Johns Hopkins Hospital twice for for an alternative treatment to surgery.

I had steriod injections before I knew I had these cysts. Most patients will tell you that even if you get relief, it's very short term. After the second injection I had, the pain was so bad, I could not walk the next day. That was it for me.

Please do more research before proceeding with the injections. Dr. Oz had a past segment on his show about the safety of these injections. It will shock you and will surely change your mind. The medications used are NOT FDA approved for use in epidural injections. The segment is on youtube. See if you can find it. *edit*

The sad truth is that people assume Dr.s have your best interest in mind. Trust me they do not! It's all about money!!! In my opinion the risks outway any benefit you may get if any.

Last edited by Jomar; 03-02-2014 at 11:58 PM. Reason: sorry no linking or redirects allowed for new members
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Old 03-10-2014, 10:33 PM #3
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JeanKNC JeanKNC is offline
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Quote:
Originally Posted by dwigs View Post
I am new to this site.

I have never had any back issues & have absolutely no idea what to expect BUT, I have read enough post to believe I could use some advise from others experience. My symptoms have been present for 8 weeks. Some improvement from Chiropractic.
MRI showed "S1-S2 level shows bilateral small Tarlov cysts with mild smooth expansion/ end oatmeal remodeling of the sacral neural exit canals." "L5-S1i intervertebral disc has severe narrowing most marked posteriorly. The moderately dehydrated intervertebral disc has mild posterior broad based annular bulging producing direct contact upon the S1 nerve root bilaterally greater on The left side."

I have no idea what that really means.
Pain levels walking are 0-1.
Pain levels laying down 0-1 but sleep has been restless for years.
Pain levels while sitting have become 1-2
Pain levels when standing up & first 10 steps are 7-8

This has been pretty consistent for 8 weeks now.

My urgent question is:
I'm scheduled next week for "epidural steroid pain management injections"
The imaging medical clinic will preform procedures.

I understand this is not a fix but,... Is there a risk of the injection making things worse ???
-----------
3/10/14

Must learn to read posting dates. Me, I mean.

NO INJECTIONS. Go to Tarlov Cyst Foundation website.

Contact Reta directly. She can answer all your questions.

Good luck.
JeanKNC
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Old 03-10-2014, 10:40 PM #4
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Default TC's.

Quote:
Originally Posted by jcyster View Post
My advise........run like hell! Any medical professional who would suggest any kind of injection into the spine of a patient with tarlovs cysts is out of their minds. First they have no knowledge or experience what so ever with these cysts. If they did, they would never offer steroid injections.

I am a tarlov cyst patient who has been researching these cysts since 2005. One of my 3 cysts became symptomatic last December. I have been to Johns Hopkins Hospital twice for for an alternative treatment to surgery.

I had steriod injections before I knew I had these cysts. Most patients will tell you that even if you get relief, it's very short term. After the second injection I had, the pain was so bad, I could not walk the next day. That was it for me.

Please do more research before proceeding with the injections. Dr. Oz had a past segment on his show about the safety of these injections. It will shock you and will surely change your mind. The medications used are NOT FDA approved for use in epidural injections. The segment is on youtube. See if you can find it. *edit*

The sad truth is that people assume Dr.s have your best interest in mind. Trust me they do not! It's all about money!!! In my opinion the risks outway any benefit you may get if any.
--------------

Wonder who you consulted with at Hopkins?

How's are you handling pain? I am 3 yrs since dx. Taking GABA and OTC.
Sometimes Flexeril at nite.

Considering surgery. Dr F Dallas. Had phone consult last yr. leg numbness n
Weakness comes n goes. But who needs that.

Good luck with low to NO PAIN.

JeanKNC
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Old 03-13-2014, 07:02 PM #5
bobiJ bobiJ is offline
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Quote:
Originally Posted by dwigs View Post
I am new to this site.

I have never had any back issues & have absolutely no idea what to expect BUT, I have read enough post to believe I could use some advise from others experience. My symptoms have been present for 8 weeks. Some improvement from Chiropractic.
MRI showed "S1-S2 level shows bilateral small Tarlov cysts with mild smooth expansion/ end oatmeal remodeling of the sacral neural exit canals." "L5-S1i intervertebral disc has severe narrowing most marked posteriorly. The moderately dehydrated intervertebral disc has mild posterior broad based annular bulging producing direct contact upon the S1 nerve root bilaterally greater on The left side."

I have no idea what that really means.
Pain levels walking are 0-1.
Pain levels laying down 0-1 but sleep has been restless for years.
Pain levels while sitting have become 1-2
Pain levels when standing up & first 10 steps are 7-8

This has been pretty consistent for 8 weeks now.

My urgent question is:
I'm scheduled next week for "epidural steroid pain management injections"
The imaging medical clinic will preform procedures.

I understand this is not a fix but,... Is there a risk of the injection making things worse ???
I had it all. Epidural, steroids etc. It did not made it worse, but did not help. Had bad experiance with epidural, when they did the procedure.Took 2 years, and then I went to see Dr. F. Had surgery in 2012. Doing pretty good 17 months after surgery.
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Old 03-17-2014, 07:55 AM #6
jcyster jcyster is offline
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Quote:
Originally Posted by JeanKNC View Post
--------------

Wonder who you consulted with at Hopkins?

How's are you handling pain? I am 3 yrs since dx. Taking GABA and OTC.
Sometimes Flexeril at nite.

Considering surgery. Dr F Dallas. Had phone consult last yr. leg numbness n
Weakness comes n goes. But who needs that.

Good luck with low to NO PAIN.

JeanKNC
First, I had a consultation with Dr. Donlin Long, retired Johns Hopkins Neurosugeon who preformed tarlov cyst surgery prior to retirement. I decided to try the aspiration fibrin glue injection. I had excellent relief for 8 mos. Just had a second procedure Feb 6. Dr. Sudhir Kathuria at JH is an interventional neuroradiologist who preforms this.
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Old 04-12-2014, 04:56 PM #7
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JeanKNC JeanKNC is offline
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Quote:
Originally Posted by jcyster View Post
First, I had a consultation with Dr. Donlin Long, retired Johns Hopkins Neurosugeon who preformed tarlov cyst surgery prior to retirement. I decided to try the aspiration fibrin glue injection. I had excellent relief for 8 mos. Just had a second procedure Feb 6. Dr. Sudhir Kathuria at JH is an interventional neuroradiologist who preforms this.
THINKING OF GOING TO DR HENDERSON. AND THEN HAVING GREAT
LASTING RELIEF IF CYSTS ARE DRAINED --- WHAT A DREAM COME TRUE, HUH !

Affecting bladder bowel now. Past few weeks. Can not deal with that.

Best of luck.

Having new MRI nxt Tuesday.

Jean FL
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Old 09-05-2014, 07:10 AM #8
Hazrul Hazrul is offline
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Default Steroid Injection

Quote:
Originally Posted by dwigs View Post
I am new to this site.

I have never had any back issues & have absolutely no idea what to expect BUT, I have read enough post to believe I could use some advise from others experience. My symptoms have been present for 8 weeks. Some improvement from Chiropractic.
MRI showed "S1-S2 level shows bilateral small Tarlov cysts with mild smooth expansion/ end oatmeal remodeling of the sacral neural exit canals." "L5-S1i intervertebral disc has severe narrowing most marked posteriorly. The moderately dehydrated intervertebral disc has mild posterior broad based annular bulging producing direct contact upon the S1 nerve root bilaterally greater on The left side."

I have no idea what that really means.
Pain levels walking are 0-1.
Pain levels laying down 0-1 but sleep has been restless for years.
Pain levels while sitting have become 1-2
Pain levels when standing up & first 10 steps are 7-8

This has been pretty consistent for 8 weeks now.

My urgent question is:
I'm scheduled next week for "epidural steroid pain management injections"
The imaging medical clinic will preform procedures.

I understand this is not a fix but,... Is there a risk of the injection making things worse ???
Hai there.. actually i have the same pain as yours and i was new in this forum just started to post today.. would like to share the experience and i have done twice for the symptoms and for me its just went only for a few days.. but i don;t know about others.. the post op surgery is to the injection at the area that causes the cysts to do a blocking nerve that can be extend the pain.. actually its a pain management systems.. after the post op i'm jumping like crazy cause my feet and back are feeling numb without no pain but the "silly front are sleeping nicely" actually really feel regret to do so but for the sake of the pain i do so.. first was injection was on april and the second was on may.. now im waiting for my surgery this coming nov and i already book for it..but not like other people do i just do a decompression..
cheers
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Old 02-22-2015, 06:47 PM #9
spoil247 spoil247 is offline
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Default Needing more info please

Quote:
Originally Posted by jcyster View Post
First, I had a consultation with Dr. Donlin Long, retired Johns Hopkins Neurosugeon who preformed tarlov cyst surgery prior to retirement. I decided to try the aspiration fibrin glue injection. I had excellent relief for 8 mos. Just had a second procedure Feb 6. Dr. Sudhir Kathuria at JH is an interventional neuroradiologist who preforms this.
Hello -From the MD -Is this doctor practice at University as Well ? Is the wait time long ? I have Tarlov -large T and L -Lot of pain.Also trying to find people I can talk to mentally dealing with this issue.Is this going to be on going life issue ? Thank you
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Old 03-31-2015, 08:36 AM #10
Tomatogirl Tomatogirl is offline
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I haven't had a steroid injection in the back but I have tried an anesthetic steroid injection of the piriformis muscle at the Mayo Clinic. It worsened my back spasms and cramping in my legs and I got only mild relief in my lower legs and right heel for about four hours. I have radiating lower back and tailbone pain and numbness into my legs.

I am scheduled for surgery with Dr. Feigenbaum for lumbosacral cysts.
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