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Radio Frequency Ablation
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lostatlove posted:
My doctor thinks that the next step that's best for my chronic severe back pain is radio frquency ablation. I had what was supposed to be terminal cancer three and a half years ago. After several surjuries and a year and a half of chemo I'm here The aftermath to my body however is horrible. My pain is so severe I can't hardly stand myself. I haven't been able to keep a job and my dad feels like I should just give up at age 36 and go on SSI. I however really want to live life again. I want to be able to run and play wih my 6 year old son. I don't want my 13yr old daughter having to help me out of bed or out of a chair because I hurt so bad. The spine specialist did find out that my ligament in my left hip is torn all the way across and I have a cyst growing inside of the tear. So he's sending me to an orthopedic sugeon for that but for my back he wants to do radio frequency ablation. I've never heard of this before. I'm scared to death. I hear the pain for most people does subside but after about 9 to 12 months it comes back and they have to repeat the procedure over and over again. Wouldn't scar tissue start to build up? I'm so worried I just don't know what to do but I'm constantly in the hospital because my pain meds just don't work for me anymore. I know I need to take a new avenue for myself or I will have to apply for SSI, I'm a single mom and we can't live with no steady income coming in. My pain is so awful that some days all I can do is sit and cry. It's not just me my pain is effecting it's effecting my kids and my dad. Is this radio frequency ablation a good option? What are the side effects? What are the long term consequences from possibly having to do this over and over? Does anyone know the answers to some of these questions because I would be so grateful if someone did and they would share them with me. I just can't imagine hurting like this forever. My little boy is growing up fast and ever since he can remember I've been sick. Abbi is 13 but she was 9 when I started getting physically ill. I want to be able to do what normal people my age are doing. I want to work, finish my degree, and be the best mom I can be to my kids. If this means I should have this procedure done then so be it but I'm just so scared. Can someone please, please help me?
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bj1208 responded:
hi and welcome to the support group -


I can understand your pains, as with the rest of the members here - we all have some type of chronic pains we suffer from each day -


I have had this procedure done 2 times - and unfortunately it did not work for me BUT there have been several members that have had great results from it - lasting 6mths to well over a year -


and yes the procedure may need to be repeated as what they do during this process is burn the nerve endings where the pains are irritated in the sciatic nerve roots as they may grow back.


BEFORE having this procedure done, please get a 2nd and possibly a 3rd opinion - from both Orthopedic Spine Specialist and Neurosurgeon Spine Specialist -


there are other procedures out there that you may be a candidate for -


As an example - 3 years ago I had a TRIAL Spinal Cord Stimulator Implant done (with leads implanted in the back to send false signal to brain saying there is no pain) - and I did have problems with this and had it removed -


I am in the process of having the procedure done again, BUT with a different manufacturer where they use flat panels instead of leads - I told the surgeon even if I were to get 20-25% reduction in pain I would be very happy - He said "NO, MY PATIENTS ALL RECEIVE BETWEEN 50-85% REDUCTION IN PAIN~~ not only that but he had full stories with patients names, addresses phone #'s etc telling of their chronic pain issues and how they are now 100% pain free! I was impressed and am ready to try this -


So please, please get a couple of opinions and ask if there are other alternatives that can be done - once you find out let us know and we can help direct you to some beneficial websites for research etc.,


Please don't give up - you can click on my name or picture and read my story. There is hope and I know the tunnel looks dark but there is light there -


I hope this helps - please keep us posted as to what you find out - take care - Blessings - ((((HUGS)))) Joy
 
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Rafael Levin, MD, MSc responded:

First, I am glad to hear that you have survived cancer and that you are so motivated and determined to restore normal function for you and your family. You have the right attitude to overcome your pain.

Although you did not specify your exact spinal diagnosis, I can reassure you that Radio Frequency Ablation is an extremely safe and minimally invasive intervention that is extremely unlikely to put you at any significant risk for worsening pain or injury. The procedure is done as an outpatient with no incision, and has the potential to be therapeudic in that it may give you long lasting relief (even several months of pain relief would be most welcome.) Even if it does not provide you with long lasting relief, it could be diagnostic in the sense that it can localize your pain generator. That means it may help your surgeon identify and possibly treat the source of your back pain in a more definitive way.

For someone in your situation and degree of pain, there is no real downside to trying the procedure, and I would therefore encourage you to try it.

I hope you overcome your fear of this simple intervention, and I hope you derive excellent symptomatic relief that will allow you to restore a normal life for you and your family. Keep us posted.

All the best
 
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lifesajourney replied to Rafael Levin, MD, MSc's response:
I also want to encourage you to try this. I had it, was a little nervous too, but it hurt no more than steroid injections and I have had relief from the leg pain that was radiating from my back. You can't live like you are without trying something! I pray you find relief soon. Keep in touch, we're rooting for you!
 
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mskite responded:
I had temp nerve blocks for shoulders, neck hips and legs. This did not do anything. Then the Pm DR did the nerve burns on neck and shoulders which did not help either. I have sever arthritis in all these parts and had right knee replaced 11/21/07 and have had severe pain in it since. All my PM DR wants to talk about is burning nerves again and more lortab that has quit working. He won't even talk about pain patches and since he does not do pain pumps that is out also. My Orthopedic DR gave m some lidoderm patches that don't help either. They are supposed to numb local aeries to reduce pain but don't. Am going to a new orthopedic Dr in Dec. who is also a pain management DR and specializes in knee replacement followup over the years.Hope he can do something. My orthopdic Dr says there is not enough bone to work with anymore on the knee and more surgery could leave things even worse than they are now. I would recommend you trying for a pain pump and they will give you extra meds that help handle flare ups. I do believe this would be the quickest and best in the long run.
 
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kimmy2099 replied to bj1208's response:
Hi! I appreciate your post so much! I am considering RFA for my lower back pain. have had two cortisone injections and one nerve block. Seems like the last nerve block actually made pain worse. Sometimes it feels like im kinda of getting better but always seems to have that underlying pain. Worried the RFA will INCREASE the pain. Any thoughts?
 
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trs1960 responded:
Never give up. I posted "go for it" with respect to this treatment. But the bigger answer is go for it with a positive attitude.

I have 12 fused vertabrae and live with severe chronic pain. I'm still working full time, but life is hard. I may also take the disability route, but not because I'm giving up, because it may be the correct choice to make at this time in my life. I've worked through over a decade of dibilitating pain. Struggling to improve my quality of life after a traumatic accident that should have claimed ny life and certainly should have left me wheelchair bound, but it didn't.

I suggest you read two books (to start). Pain, the science of suffering, by Dr. Patrick Wall and The Art of Healing Back Pain Naturally by Dr Art Brownstien.

Now back to the RF treatment. It's no worse than a discogram or epidural. The risks are no greater than the two procedures mentioned also. The pain is somewhat like a discogram in that it is halacious for the fraction of second the RF tip is on and in contact with the nerve ganglian, but as soon as they turn it off the pain subsides.

I've had such a procedure done 3 times each with different results, but results that make sense. The first time was not efective due to the vertabrae in the target area being so crushed together so badly the Dr. couldn't access the nerve with the probe. Good news is I didn't get the pain of the nerve burning.

The second time was text book. It removed pain and I felt better as soon as the anesthesia wore off. The pain that hit when the doc found the nerve with his probe and turned the RF unit on immediately rendered all of the anelgesic in my system useless! But, as I said it also went away as soon as the machine was turned off.

The third time the results were somewhat in the middle.

I strongly suggest time with a pain managment PHD. You must learn how to take charge of your mind and body. The books I suggested will help, but a good PHD trained in pain managment is needed to complete the team of you and your doctors.

I know how depressing and debilitating chronic pain can be. The most powerful tool you have to fight it is your brain. You'll need many other tools too, but you must be in charge of your life. If you're dependent on a doctor to fix you it will likely never happen. Not that any doctor wouldn't dream of such an acoomplishment, it just doesn't happen that way.

Good luck,

Tim
 
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mskite replied to trs1960's response:
Lostatlove and All: they also have pain patches for severe pain. One is Fentanyl. This is a name brand. They also have the lollipop fentanyl for severe pain bursts to control sudden hard pain. It is also a name brand. I am on Medicare and part D drugs. If I were to have to buy the lollipops I would have to get prior approval for them. Lostatlove, thy also have pain meds that are for severe pain from cancer surgery. Hoping by now you all have found some good help. Here is a good article on cancer pain management. http://www.cancer-pain.org/treatments/breakthrough.html
 
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trs1960 replied to mskite's response:
Fentanyl almost killed me. It is 110 times stronger than morphine and while some people use it successfully it has been on the wrong end of class action law suits and turned me phsycotic.

Caution is the word of the day. I understand your delima and know what it's like to feel like there's no way out.

I'd go to (along with your MD) a pain psychologist and see if you gain a better understanding. You may alsoo need such drugs as fentanyl, but gaining a deeper understanding was the best treatment I've had yet.


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