So much nerve pain after SBRT

[LisaA]

I had SBRT for a 5cm tumor in March.  I am experiencing chronic daily nerve pain in the area of radiation that it is hard to cope with. Has anyone else had any experience with this?

I received 5 treatments for a total of 50 gy exposure.   It feels like a searing, burning pain that never ends. It seems that Vit B12 in high doses helps it, but it never goes away. 

I wonder how long others have had this last? 

 

[Tom Galli]

Lisa,

I had a form of stereotactic radiation (CyberKnife) but no pain experience at all. I had a total of 3 treatments.

Have you reported the pain to your doctor?

Stay the course.

Tom

[Moonbeam]

Lisa A - my husband received 5 treatments to L5 in his spine plus had kyphoplasty at the end of July and first few days of august. All was going well and he stopped all pain meds first week of September. UNTIL this past Monday. The pain in the same spot is back...and goes into his hip. The radiation helped and all is stable. There are no new metastatic lesions and everything is stable. Except the pain. They have done 2 MRI's of the spine in the last 2.5 weeks and no reason for this amount of pain...He was admitted on Tuesday am and he is now taking gabapentin, dilaudid, and xanax. They think his anxiety may have something to do with all the pain. 🤦‍♀️ I know the burn from the radiation cropped up on Sept. 12th and I feel since then, little by little, uncomfortableness developed but by last week and weekend, he was back on the floor. Never did I think we would be here again. All of his doctors know about this and seems the only answer is pain meds (he's so bummed about that) and xanax for anxiety. Who doesn't have anxiety and especially a cancer patient! Maybe there are others who know or can shed light on this.

XX

Moonbeam

[Rower Michelle]

Hello Moonbeam-

I’m so sorry you’ve come full circle on this!  Mental health is the place where doctors go when they can’t find the underlying problem.  Anxiety??? Really.   Pain is pain.  

My hubby has been to five doctors this year for back pain through the L-5 to S-1. Wife has this terrible disease so it must be anxiety!  Give me a break. Doctor #5 is a spine orthopedist for the US Olympic athletes.  Severe disc degeneration in the MRI. (Not all radiologists drew the same conclusion) 

Physical therapy to strengthen the core (not just the belly) and acupuncture was recommended. Hubby got four consecutive sessions by the end of session two he was pain free for the first time in over a year.  This has allowed him to start physical therapy three times a week.  Once a week acupuncture for the next 20 weeks.  

No amount of meds could touch this problem (and we didn’t do any opiates). 

Please keep looking for a doc that’s really willing to listen and problem solve. It was so discouraging to see doctors #1-4 however I’m really glad we persevered. 

Michelle