Life of a Professional Patient, Blog#7: Radiofrequency Ablation with RA?

Radiofrequency ablation has nothing to do with RA. Unless RA pain from the spine is real.

Warning: This is one of those personal posts. It was an unusual week.

Monday:

  • We drove to Orlando for Roo’s hernia post-op appointment. It’s all good. I wish every doc were so skilled.
  • Tiger saw his Fairy Godmother (hearing aid specialist). I wish everyone were so kind.
  • We stopped at Barb’s for extra hugs on the way home.

Tuesday:Ice pack

  • Katie Beth and I headed out around 7a.m. (a kind of twilight, bewitched hour for those with RA) for the two hour drive to the clinical trial interview. It was a 3½ hour appointment. The first 3 hrs 20 min went well working with various staff. Then we met the doctor. Maybe I can write more about that soon, but we both thought we’d met him a few times before. How do they do that? Anyway, it didn’t matter whether my RA performed (swelled up) on cue since the trial drug is already approved. They require pregnancy tests, but not a CRP or a joint count since they are not measuring how the drug affects my RA. They don’t need a high CRP that they can try to make go down since the drug is already approved for treating RA. This trial will test whether they can safely change something about the administration of a previously approved RA drug. (So, I was accepted.)
  • At 3 p.m., we headed out in different cars after being home for five minutes; Katie Beth to class and the boys and me to an appointment about my lumbar spine. I’d been trying to get seen for a couple weeks because the 26 year-old injury had been behaving badly. It’s a torn disc at L-5. That appointment went extraordinarily well and I hope to write more about that one too. She even examined my back and noted the swelling I thought was too slight to mention.
  • Coaching Bear at driving through the rain, we pointed the car back across the big bridge to bring the boys to some Boy Scout meeting (it wasn’t the usual time or place). “What’s this meeting for?” “We’re helping out those who might be interested in becoming Cub Scouts.” Roo, from the backseat, “I’m interested.” So, we all four went inside. Roo and I sat on the bench designated for 1st graders. While none of my joints were showing off (swelling) that day, many of them were doing their ice pick magic tricks by now. Toes, hips, knees, and fingers managed to stab me with no blood evidence. The perfect crime, right? I managed through an address about proper parent participation since “the Boy Scouts of America are not the Babysitters of America!” However, as soon as it was a fitting moment, I limped to the car (the older boys had a ride home). At home, in such pain, I fell onto my blessed feather bed. A few years ago when I first got Bear and Tiger involved in scouting, I’d ineffectively explained why I could not go camping (my cheeky RA). I’m not trying that again. Somehow I’ll send brownies and excuses, alternately. And eventually, I’ll try to coerce a son or a spouse to take my place on a campout.

Wednesday:

Radiofrequency ablation: This was the thing about which I said, “No way do I have time for it this month!”

There is a problem with persistent inflammation in a couple of facet joints in my cervical and thoracic spine. For about ten years, it has caused nerve pain to shoot down my right arm, neck pain, ear pain, and migraine headaches. Last October, radiofrequency ablations (RFA) at 4 points were quite successful. The nerves are kind of “burned” away by the procedure. After a couple of days of pain, I lived with almost complete relief for at least seven months. However, a couple of months ago, the pruned nerves grew back. I had to take more pain medicine and wear a soft collar. So my neck made itself into a priority.

Today, ice, pillows, and pain medicine are my dear companions. And tonight, I’m actually sitting up to type this page. Last year, it was three days before I could do that. From what I hear, these procedures become a bit more successful each time. (I can’t help but liken that to waxing my legs. Maybe the nerves eventually give up the way the follicles do.)

Yes, I’m aware that I’m only treating the symptoms. I’ll need periodic MRI’s to monitor my spine joints in case a more complicated surgery is required. But most of our RA symptoms are like that. Personally, I’m thrilled to have a way to reduce the symptoms, without using more medication. Wouldn’t it be great if we could find a way to fool hands, jaws, shoulders, knees, etc. in the same way? Again, as long as proper monitoring is done so damage is addressed.

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Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

6 thoughts on “Life of a Professional Patient, Blog#7: Radiofrequency Ablation with RA?

  • August 26, 2011 at 2:03 pm
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    I’m sending you thoughts of healing and peace from Chicago. I hope you find success for many pain-free months. Thanks for taking the time to post and keep us up-to-date! Can’t wait to hear more about the clinical trial doc…more of the same old same old??

    Reply
  • August 26, 2011 at 8:25 pm
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    So glad the procedure wasn’t as painful to recover from this time and super glad you have had such good results from it.

    I had an MRI on my lower back a few months ago, several bulging discs with disc degenerative disease. I had a fusion done in 04 L5 and L4 because one had ruptured and one was thinking about it. Now all are bulging again L4,L5 and S1. My RA doc said I would have to have my primary care doc look into it, of course since RA does not affect the spine. And it may not be affecting my lower spine directly but I bet it has accelerated since I got this stupid disease.

    My jaws are very sensitive and swollen below my ears, my neck and upper back down to my shoulders stay as tight as can be, some times I can’t turn my head very well, sometimes it is better. But the tightness stays constant. I am sure that is RA. I will ask about this procedure the next time I see my RA doc. Any relief no matter how long it lasts is welcome.

    Thank you for sharing!!

    Reply
  • August 21, 2012 at 4:36 pm
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    Kelly,
    I just went to the pain clinic for a test to see if I need a Radio frequency burn done to my L5 again, I actually had it done 6 years ago. It helped a lot. I then only went to the clinic about once a year for shots in my poor facets. So I am ready to try it again. You are right in that seems safer to me than taking all the meds we have to take for RA.
    Hope your doing well, I think of you often.
    Love
    Steph

    Reply
    • August 21, 2012 at 5:33 pm
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      Just in case someone else is confused (I know you’re not), I still do take dmards/disease treatment, but the RFA means I can use less pain meds – With the big exception being if I try to do “extra” such as traveling (or going to walmart etc) when I have to have meds to try to force myself to keep moving when I’m in agony…
      Just wanted to clarify that I meant possible less symptom meds, not disease treatment. I always make a distinction & I hope I was clear enough this morning. Trying so hard to tell the story clearly for those who are at teh beginning & want to hear about it.

      Reply
  • April 5, 2013 at 7:18 am
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    reading about neck pain is almost as frustrating as the RA itself.. I can get no one to pay attention.The multiple symptoms are too much to bear.. Recovering from achillies tendon rupture repair and awaiting a second surgery to close the 1st surgicsl wound that developed an infection,I am almost at the end of my rope. My rheumatologist only sees me every three months and my family doctor doesn’t want to deal with my problems except to prescribe more pain killers.I spend most days just wondering and wondering what do I do now? These posts give me some hope for relief.. Ice pillows. wow!

    I have jaw pain ear pain and headaches.. neck pain is constant.. hands and feet are more and more crippled.. Depression is so close now I can see it grinning at me in the dark of the long nights.

    Reply
  • November 24, 2017 at 5:05 am
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    Help! My rheumatologist doesn’t seem to think any of the many things that are happening to me are because of the RA. Such as , terrible tightness always in shoulders, can’t look over my shoulders, shooting pains down arms, I can’t hear very well, hammer tires, now my 2 nd toes are numb, depressed!!! I’ve just tried xeljanz, after 2 doses my body sprang into rebuilt by walking to inflammation in every joint very badly. Then shortly after dose 3 my inflammation was so great I hobbled instead of walked, I couldn’t open doors because I could not use my hands, had problems dressing because of the inflammation in shoulders, mostly all I wanted to do was lay down and moans would escape my lips as if somehow that might leech out some of the pain I tried hydrocodone, that didn’t dull the pain, my daughter recommended Prednisone and I had a medrol pak on hand so began that, all of a sudden I realized it was a reaction to the new med so I didn’t take dose 4, by morning I was significantly better and got better hour by hour. I’m sure the medrol pak is helping, but I feel sure that the true culprit of the attach was my reaction to xeljanz. I don’t know where to go, where to turn. I’ve been on Enbrel and mtx for 5 yrs with good results then just quit working. tried many others including plaquenil, antibiotics, Orencia infusions with MTX, then insurance bumped me to Orencia self administer shots with MTX tablets, did better with the infusions but nobody will fight for me! Ideas anyone?

    Reply

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