Help 2 surgeries no help yet? Anyone had this?

[lizsclafani]

Took almost 3 years and a surgery on my arm that i didn't need to get diagnosed. Had a 11mm herniation.  Chiari malformation with syringomeyelia. August 2018 had decompression surgery. Doctor thought after decompression surgery the syrinx would dry up with time. The only thing that worked was herniation back to normal and was finally able to sleep. The pain for me is my hands,arms,shoulders, neck and back.6 months sfter surgery had an MRI that showed almost a heart shaped pockets of csf fluids in my back. If it were not for pain mgmt i don't know what i would have done. 2nd surgery August 2019 dura patch and more bone taken out. Doctor said all scar tissue from first surgery he tried to get out. Its a little over 3 months and feels like i never had surgery. Doctor says it could take up to a year to feel better.  Just made him give me a c spine mri today and will mail to him tomorrow.  He wanted to wait a year and i need to go back to work. Yes he is a chiari specialist in NYC and i live on ling island.  This did not show up until i was 50. Wanted to know if anyone out there has been through this and if it hss gotten any better.for me it feels like when you hit your funny bone and the feeling never goes away. The pain right now is unbelievable because it is raining but i vould tell u that hours ago it was coming. PLEASE HELP DON'T KNOW WHAT TO DO NEXT EXCEPT KEEP TAKING PAIN MEDS AND OTHER MEDICATIONS. Thank you.

[selmaS]

Hi and welcome to the Chiari forum.

I am sorry to hear your symptoms did not resolve with surgery, but for me , and I did not have a syrinx it took a few years to see all the benefits I recieved from my surgery.....and you have  to look at your surgery from August....you are only 2 1/2 months post op.
Neurological pain is difficult to treat even with meds.....so sometimes what we do or how we do tasks can help. Only tou know what activities trigger your symptoms to worsen....find new ways to do the task to see if it helps...take more breaks during your day to lessen the impact of the triggers.

I knnow you said this did not show until you were 50, but I truely believe that since this is a congenital condition that those living with this accept how we feel to be is "normal" when in fact we are dealing with symptoms but not aware what we are feeling is a symptom since we have always felt it and were able to deal with it, it is not UNTIL the symptoms worsen for what ever reason that we take notice.

May I ask if the surgery on your arm was for tarsel tunnel?The longer that a syrinx goes untreated the longer it is causing nerve damage....so, it can take even longer to see results after a surgery, it is not instant.

Have some patience, change some of your posture and movements, and take rests periods.....and most of all LISTEN TO YOUR BODY it will tell you when to rest.

[lizsclafani]

The surgery on my right elbow was for calsification thst showed up on MRI. This is where the pain started. Wasn't until 7 weeks after surgery i was still complaining but also always complained about my neck and asked for MRI of my neck. Got the phone call 2 hrs after telling me to see neurology. Remember my first chiari surgery wss August 2018. My second chiari surgery was a year later August 2019.