Syrinx & Epidural Inj

[kc1969z]

HI! I'm new to the group!  I have Chiari w/ syinx in the thoracic spine.  I have no real symptoms of Chiari..no headache in the back of the head, vision or hearing problems, etc..no real standard symptoms where I would consider surgery.  What I do have is alot of back pain.  In addition to the syrinx I have a herniated disc above the syrinx. Pain Mmgt wants to do an epidural injection...I've read this is not a good idea.  What has been experience of the group on getting epidural injections with a syinx?  Thanks!

[kc1969z]

Holy Crap!  You are right, they are not FDA approved...thanks so much for the info.  After doing some searching on epidural inj, I found this whole Dr Oz article where they masked themselves as patients and not one of the pain clinics told them it was not FDA approved.

Thanks!

[kc1969z]

Thank you all so much for your comments!  I see my neur again this week so I am going to ask for the CINE MRI.  I do agree that this 'thing' can surprise me one morning and I wake up and everything is different.  I did NOT get the injection because from the research I did about syrinx.  I am trying to see a spinal specialist, but that was been difficult getting the referral.  

Has anyone has trigger point injections to help ease the muscle pain along side the spine?  I thought that may be something worth trying since, its away from the spine, and might help calm the muscles down.  

@anniedear--what do you do for the back pain?  I'm trying to figure out the right things to do.  I use the foam roller, stretch, every day...I take gabapetin which helps with the pain that comes through the chest..again either from the syrinx or herinated disc...I need some type of pain killer but dont want a heavy narotic, since I do work everyday.

[ellijaygal]

PLEASE PLEASE PLEASE do not get spinal injections. They are not approved by the FDA and they can cause arachnoiditis. Whatever little relief they can give you in the current moment can cause you excruciating unending pain later. This practice of giving people injections when it is not approved for that needs to STOP. It is a huge money making machine for doctors and for the drug company. If you take a dose pack of steroids you will get the same type of relief for the same time period as getting an injection in your spine, with no risk of ARACHNOIDITIS. I can't believe your doctor would even consider putting something into your spinal canal when you have a syrinx.

[AnnieDear]

Oops. Hit enter :)

Just make sure your doctor knows what he's doing and that you know the risks and benefits. Then make a decision based on whether the outcome is worth it to you compared to the potential risk.

Good luck!
Annie

[AnnieDear]

I, too, previously denied having symptoms prior to my auto accident. After reading so much research and personal experiences, I know that's incorrect. For as far back as I could remember, I sometimes had difficulty with straining - I would get dizzy and everything would change colors and it would get very loud in my head. I know it seems weird, it i did not realize that wasn't normal! So it's small things like that which have convinced me I had this condition, it just wasn't really symptomatic until my accident.

Regardless, though, you do need a doctor who understands and has knowledge of both Chiari AND the syrinx. I have not had the injections because I'm not confident in the outcomes. I do have severe pain, all the time. I also have a syrinx the length of my thoracic spine, herniated discs, and scoliosis. So back pain, I understand.

[kc1969z]

Thanks for the input!  I noticed you are one of the ones that provides alot of info on this board, so thank you for that!  I agree with you, on you never know when this thing could take a turn for the worse.  I am trying to establish myself with good docs, I see a chairi spec in a few months.  Several other NS have dismissed since there are no neuro symptoms..my biggest issue is the back pain, and its hard to tell if its from the syrinx or the herniated disc.  I am also very aware of those CSF leak, and that is what has made me rethink the injection.  The NS that I have found, who at least takes it somewhat seriously I will ask for the CINE MRI..it may be a tough sell, since I have no neuro symptoms..in fact they have not gave me the mm on how much it descends.

[selmaS]

  Hi and welcome to the Chiari forum.

I know u do not feel u have symptoms but I wanted to share that I too, did not feel I had many Chiari symptoms as I felt I was doing better then most that were posting their issues.The problem with a congenital condition like this is u have it from birth along with the symptoms and u consider those symptoms to be  "normal" since u have always had them and suspect everyone else feels like u do....the way the Drs term many of the symptoms I did not recognize them so declined the fact I had ne....

Do look closer at how u felt in doing certain activities...

Get more testing as a syrinx can grow slowly or very rapidly and u do not want the symptoms to get worse or develop overnight and surprise u.

A CINE MRI to check how obstructed ur CSF flow is, and what other related conditions u may have should be ruled out as well....

As for the epidural....I had one not for these reasons , but I wound up with a CSF leak...and they are awful....I also do not have a syrinx and not sure I would have the injection....JMHO.

[kc1969z]

Hi All!  Does anyone have a personal experience when it comes to Syrinx and epidural injections.  The Syrinx is located T6-11, my hernated disc at T3-4..and pain mgmt wants to do an injection for the disc, but my concern is the syrinx.  He said he has injected people with syinx before.  I wanted to see what the opinions were on the forum on the subject.  Thanks!