Pain beyond control



  • So glad you finally have an answer to what is causing this severe pain even though it will take surgery to fix it.  I was so hoping maybe a different med or something but I guess that must sound silly when the surgery could actually fix the problem instead of long term treatment.  I just hate that you have to endure another procedure.  I will be praying that this surgery will make all the difference in the world.  

    Please let us know what they say after your imaging is done.  I will be keeping you in my prayers.


  • Cindy - thank you for the prayers, I’m hoping to get the imaging done by Monday or isn’t what I wanted but it looks like that may be the answer and no a different medication doesn’t sound silly at all!  I’m still doing research on Tarlov/perineural cyst as there doesn’t seem to be much out there for people with Symtoms. Again your prayers will be greatly appreciated.  


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  • Michael your posts brought tears to my eyes this morning and I will have to say you are an incredibly strong person much stronger than I. I hope this upcoming procedure will give you the relief you need and put your life back to some sense of normalcy. Wishing you the best.

  • martymar- thank you for the kind words, I think we are all very strong people dealing with chronic pain, it has been a very difficult 8 months for sure, I’m truly hoping and praying this procedure also gives me the relief needed also.  

  • @bidbeaner99 Any news?? 

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  • @KerryD- my MRI is set up for This Friday at 2:30pm.  set follow up appt with my surgeon Wednesday a week from today.  Called every place close to me and had nothing open to get the MRI.....can’t catch a break, in other news my CSF migraines are back, showed up Tuesday morning around 2 am been hortizontal since then.  Anywho, he has to fix the spinal fluid leak also!  

    How are you doing?  

  • @bidbeaner99 - fingers crossed by the time you read this you might have some news.

    I’m sorry to hear about the migraines - that’s not good, please take care of yourself.

    I am doing ok, I’m in my third week back at work and going quite well but think I might have overdone it the last couple of days. I went to the cinema last night and sat for a couple of hours and then today did an extra hour at work, as a result am very sore tonight and have a sharp pain in the left side of my back - up from the surgery site and some sciatic pain in my hip and tingling in my toes. I’m pretty sure it’s just a warning but a bit of a worry. Anyway, I shall see how I go tomorrow.

    Please let me know how you get on - everything crossed :) 

  • MikethepikeMMikethepike MIchiganPosts: 382

    Hey 99, this chronic pain is so hard to deal with,  I take for Norco 10–3 25 for times a day, and occasionally  take an oxycodone 20 mg when things get bad, I was on OxyContin 20 mg four times a day   It seems what I'm on now works better than before although I'm still in a lot of pain.  My pain comes from very tight muscle spasms, arthritis in the neck, and nerve pain throughout my body.  I take gabapentin 600 mg four times a day. Also take  Klonopin half a milligram twice a day. This paint really never let up. What was your   Pain medicine that really work the best for you. Take care and God bless 

  • @KerryD- well I had my mri and it appears I have an infected cyst with an open active CSF leak that has wrapped itself around the nerve root in my spine. This needs to be fixed and surgery is looking like either 3/19 or 3/20 to repair the leak and remove the cyst...just waiting on confirmation from surgeon coordinator at the office.    Additionally I have roughly herniated discs from T12 - L4 and some spinal stenosis, I’m glad your back to work and sorry your having a hard time from over doing it, we all fall into that at times!  As soon as I know more I will keep you updated.  Thanks for checking on me!  


  • Mikethepike- I’m sorry your struggling, I’m on 30 mg’s oxycodone 4 Times a day for breakthrough pain and they just switched me to morphine  long acting 15 mg twice a day.  I’ve found for me that patches seem to work the best, butrans patch or fentanyl patch.  The constant release of medication helps the most.  I had a pain pump which was great but my body rejected it and needed to have it removed, unfortunately and fortunately im on the thinner side.  Hope this helps and let me know if I can help you with anything else.  

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