[Rrae]

I just had my first visit with my new PM doctor since my other one retired. I am left here scratching my head . For one thing, this Dr is from Madagascar and I had a hard time understanding him.
When I explained that I've been battling horrible back spasms and lumbar pain (multi-level degeneration) for a long time, he did a quick 'motion' test - (bending at waist, twisting, etc) and quickly concluded that he wants to do Medial Branch Blocks on me. If I respond to them, he would go on to do Radio Frequency Ablation.

Everything I'm reading about them online from others who've had this done pretty much say the same thing - that they are in much worse pain/burning for weeks after the procedure!

Have any of you had this done? Did your RSD spread?

I'm also concerned about my SCS leads being in the way.

ANY input would be much appreciated, as I'm in 'Anxiety-Mode' over this!

Thanks,
Rae

[Nanc]

Hi Rae!

As you know, I have had much pain in my lower back since getting both my SCS's. My PM dr had the plan to do those blocks and then the RFA. I had to respond to the first two blocks in order for him to do the RFA. I did respond favorably to the first two and we were scheduled for the RFA. He emailed me telling me that he did not want to do the RFA because the risk was too high in damaging the nerve and causing RSD to spread to my back. I did not question him on this because he was very adamant about NOT doing it. He was very concerned about causing spread. So he just did a block instead.

My brother was in a car accident many years ago. He was in a pick-up pulling a boat and a woman drifted into his lane and hit him head on. The truck and boat rolled several times. He was very lucky to survive. His neck gave him a lot of trouble for a long time and he got horrible migraines. He had many injections/blocks before finally getting with a great dr who did a RFA in his upper neck area...it solved his problems! It was the best thing he had done! This is why I was considering it. But, he doesn't have RSD/CRPS and when my dr was concerned about spread, then there was no way I would have it done.

I understand that you are anxious about this, I would be too. You have to be comfortable about your decision. Personally, I would advise against it based on what I had learned about it.

My PM is Chinese and at first I had the hardest time understanding him, after a couple visits I could understand him just fine...but his care has gone down since he moved to a new practice. I am looking for a new one now I know you have been waiting a while to get in with this new PM dr, I so hoped he would be great for you. I wish I had something better to offer.

I hope you can get some relief soon Rae. I know you have been struggling.

[chrelsey]

Last May, my PM suggested that I have the ablation done. I had the medial nerve block first, which worked wonderfully, so we scheduled the ablation. My PM only does one side at a time so that the pain isn't too bad. So I had my right side done, and then one week later I had the left side done.

First, my PM doesn't really believe in any conscious sedation, so my right side was done with just local anesthetic. I've heard people say it was "uncomfortable," but I would say it landed way more towards painful than uncomfortable (and I have a high tolerance to pain). From all the horror stories I had read, I was expecting the pain afterwards to be really bad, as well. Honestly, for me, it was no worse than any ESI I have had - the pain was a non-event. I was a little sore, but that was about it.

He did the left side a week later, and this time his nurse practitioner (who was out the day I had the right side done), said there was no reason to be in pain throughout the procedure, and she told me to request conscious sedation. Best. Decision. Ever. The procedure was still slightly uncomfortable, but nowhere near the pain of having the right side done. Afterwards, again the pain was not a big deal for me at all - a little sore, but tolerable.

As far as effectiveness goes, I only received pain relief fom the ablations for about three weeks - which isn't really very good. I had heard the average was six months to two years . . . so it was not something that was really an option for me to have done a second time.

If it had worked well for me, I'm not sure how I would feel about having it done with my SCS . . . while that may be something they do all the time, I'm not sure I would want to risk messing with one thing while trying to fix another. But that's just me.

Prayers for you as you make the decision that is right for you! Let us know what you decide!

=Becky

[PamelaJune]

Hi Rrae,

I've had a few, actually more than a few in my lumbar and cervical regions, they gave me a a number of weeks relief, but tbh my lumbar pain was that intense that any change felt like a massive improvement and then it seemed to creep back up again over the months. I was going every 6 months alternating the two as he tried once back in 2008 to do them both and I apparently stopped breathing and they had to flip me over to work on me, so, he decided never again both at once, bummer, but preferable to be alive and breathing me thinks. He began to do my RFA along with an epidural that numbed the nerves at the surface of the skin for some considerable time.

August 3 2012 another round of lumbar RFA along with epidural, 2 days later I developed this headache, due back at work on the 6th I called in work ill, soldiered on at home, by the 10th I drove to my doctor who wanted to admit me to hospital, I begged no so she acquiesced and agreed to silver chain nurse visit. I rang my mum and she arrived at the same time as the silver chain nurse. Silver chain took one look and said no way I'm calling an ambulance. Now in WA an ambulance will only take you to the public hospital where I've had a few bad experiences so the SC nurse agreed to mum driving me to the private hospital I often went to.

Admitted to hospital on the 10th and the headache worsened, by the 13th they decided to transfer me to their sister hospital where I had the RFA the week before and where my PM practiced from. Decided to do a blood patch the next morning as they suspected leaking dura from the epidural procedure. Saw a neurologist at 6pm who said he couldn't find anything and agreed with trying the blood patch so I was transferred at 6.30pm, arrived 7pm and at 7.30pmish I had a massive seizure, fortunately I remember none of it, anyhow the long and short of it is I sustained 3 thoracic fractures, 2 rib fractures and an S1 stress fracture that were not diagnosed for many weeks to come (my PM went on a/l the night after he did the blood patch for 6 weeks). Eventually diagnosed and then the only DR who did vertoplasty was on a/l until November. I saw him the 2nd week of November when he got back and it was too late to do anything as it had started to knit and you can't go back in and break it! He did however do a nerve block and flushed the S1 out with some solution in an effort to alleviate that area of pain.

I returned to my PM who decided to do an RFA of the thoracic area but this time without the epidural, it was a big area to do, T3,4,5 &6. I remember clearly coming back to recovery and the nurse saying it was a big wound.

My PM has always advised that the RFA can cause a feeling like bad sunburn but I've never experienced it UNTIL this time. To this day I don't know if it is because it was such a large area or because I didn't have the epidural. But the pain following it was unbearable, I could not wear even my nightie at night, and I began to wear my big scarfs in sarong type fashion as tops that covered my front and left the back open, with jeans as my lower accessory for modesty! When family and close friends approach me they often hug me close and if they caught me unawares before I could tell them not to the pain would almost have me collapse to the floor. I told my husband if I ever think of having this procedure done again, remind me the searing pain after it far exceeds any benefit to having the procedure in the first place. I was in agony with it for 6 months or more, and still have flare ups. The thoracic vertebrae weep constantly now, but not once have I contemplated an RFA again.

I emphasise that I was well aware this burn could occur but in the 6 years of having the procedure in cervical and lumbar it never happened, so it took me by total surprise. I had to give up work in the October after finding the fractures and being told I would be unable to work for maybe 12 months or more so at least I was spared the work contact of people accidentally touching me.

Maybe it was because it was thoracic or maybe I didn't have the epidural but, wow, do not go into this procedure without doing some more research and speaking to other people. With your CRPS it could spread and maybe your new doctor is unaware of CRPS and how it behaves?

I don't want to be a downer on a potentially hopeful treatment, that for many, many individuals it works wonderfully, but, just please check it out further so you can make an informed decision.

[Rrae]

Holy COW your post is certainly an eye-opener! That burning pain side effect you've described sounds exactly like RSD!! And, yes, what you've written sounds like so many of the other things I've come across online.
thank you so much for sharing all the raw details b/c this is definitely something I would want to know!
I'm sorry you've been thru so much. You've certainly had your share.

I just feel SO frustrated right now! This is a new Dr, I can't even understand him, let alone can he understand ME. I really don't think he even looked over my chart before we met. I tried to tell him I have RSD which has spread to my back.

Thank you Nanc! Hearing that your previous PM wouldn't even touch it with a 10 ft pole really has me realizing that this isn't something I should venture into.
I'm sorry to hear of your brother's accident yrs back. Wow, he was lucky to survive!

And Becky, thank you as well! If I do consider this, I will most DEFINITELY request some sedation!! I AM A WIMP

[Rrae]

So, for those who've had the RFA's, did they actually make back spasms stop?
This Dr did say that it should relieve my lower back pain and spasms......at least I 'think' that's what he said.