Still in a hellish nightmare


Hello friends

8 months out of treatment and NED!! But still in an immense amount of pain.  Since finishing treatment I have done hyperbaric oxygen treatment, I am getting ganglion impar nerve blocks (no relief) and the next plan is spinal cord stimulation.  Has anyone had success with any of these options?  Is healing even possible with radiation proctitis? 

Thanks for any insight you may have.


  • judyv3
    judyv3 Member Posts: 143 Member

    Just wanted to let you know how sorry I am that you are still dealing with such tremendous pain.  You and I finished treatment at about the same time (January 10 for me).  I am not having a great deal of pain, just the usual host of other annoying residual effects, which lately seem to be getting worse.  I thought I'd stop going backwards eventually but it certainly is 2 steps forward, 1 step back.

    I'm sure the wise and wonderful people on this forum will chime in shortly with some advice.

    In the meantime, I'll be sending positive thoughts your way.


  • sandysp
    sandysp Member Posts: 868 Member
    Cancer Rehabilitation Physiologist

    Oh gosh, I hear you. A Cancer Rehabilitation Physiologist . . . is who does my pain management. I suggest you have one of these types of specialists evaluate you if you can find one at a cancer center nearby. It should be someone who deals in rehabilitation only. 

    The people caring for me have been a Godsend. 

    You are probably still dealing with the effects of scar tissue. But you need to be evaluated by someone who sees cases like yours from the perspective of rehabilitative medicine for cancer patients.

    Good luck,


  • mp327
    mp327 Member Posts: 4,440 Member

    I'm not sure I can provide any helpful information to you, as I have no experience with any of these procedures.  I am so sorry that you are still suffering from the effects of treatment.  I'm sure you know by now that your residual effects are rare this far out.  I think Sandy has given some very good advice and I hope you can find such a specialist in your area.  My heart goes out to you.  We all want to believe that when treatment ends, life as we once knew it is just around the corner.  I so wish that had happened for you.  Take care and please keep us posted.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Ouch indeed!

    Hello, Lawchick618:

    First, I agree with sandysp that you need to be evaluated by a cancer rehabilitationist, if you haven't already done so. I am currently getting cancer rehab. They have devised pelvic floor excercises for me that, while not eliminating pain, dials it back about halfway. (Not that Kegel excercise you always hear about.) Otherwise, my anus seems to hang out in space without support and hurts more.

    Second, I was the legal guardian of a multiply handicapped young man with lower body paralysis caused by spinal bifida. While he was still alive, he bravely volunteered to participate in a study to see if an implantable neurostimulator could increase his bladder capacity and stay drier. All went well with the procedure and he had no residual effects. His wonderful urologist (a specialist in patients with spina bifida) and a pain management doctor collaborated on initiating and developing the idea.

    My guardianee's bladder did increase capacity when the stimulator overrode the muscle contractions, but his bladder sphincter was found to have absolutely no tone, didn't react to the stimulator, and would not have contained the increased urine. The stimulator wasn't implanted for very long in this case. I do not know if this modality has become a new use for neurostimulators since that study was done, but Eric's intials are probably in a medical journal somewhere. He would be proud!

  • qv62
    qv62 Member Posts: 434 Member

    Wishing you some relief very soon, I'm sorry you are still in so much pain this far out. I just finished treatment the end of June and surely still feel "beat up" came in from work today and went right to sleep , there are days I come through the door and just can't function anymore. Got up from my nap, fixed the family dinner and called it quits again for the day, I just want to get past this, I really hope you get there soon.