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Radiofrequency ablation procedure? (Read 2249 times)
BigMatt
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Radiofrequency ablation procedure?
Apr 1st, 2016 at 12:48pm
 
I have not been on this site in a few years, I suffer from SUNCT not Cluster but they are close cousins.
I have been suffering this hell for over 13 years now and to say I am desperate for relief would be putting it mildly I have tried everything no matter how crazy even electric shock therapy.
So I went to a new doctor and she said she wanted me to try this procedure and that they have had luck using it for Cluster suffers so I said sure why not. Let me first say this treatment is not for the weak or faint of heart. She told me the first procedure they would insert a needle into the side of my head and push it into the nerve bundle behind my sinuses, so this is about a 5” needle very thin but still. So the first time they shoot in Lidocaine and steroids to see if it as any positive effect if so we move on to the next one. So I had the first one and I thought they would knock me out but before wheeling me in the doctor tells me he needs me awake so I can tell him when my teeth go numb so he knows he is in the right spot, they also use and x-ray machine while doing this procedure. They di use anesthetic so I really did not feel much but still hurt pretty good but the real pain came when I got to the recovery room, felt like Barry Bonds used my head to hit a home run and I am not kidding but they shot me up with pain meds and it mellowed and an hour later I was just sore and after that had two days of bliss no pain at all best I had felt in 13 years. So now we move on to the first RF treatment they set it at 40 and hope to give me 3 – 6 months of relief, but 40 was not strong enough and it did not work on top of that for some reason they did not use a general anesthetic me and just use local anesthetic and it was the worse pain I have ever felt in my like I cannot out in to words the pain I felt and all for nothing. I am now waiting to do it again believe it or not but this time they will set it to twice as strong and say they believe this will work but I will probably not be able to feel anything in the left side of my face for quite some time but if I am not in pain I can deal with that. He also said they would use a general anesthetic on me this next time to minimize the pain he felt really bad about how much he hurt me during the second procedure.
So if you do try this make dam sure the doctor has an anesthesiologist on hand and they do everything they can do get you as close to knocked out as they can you do not want to feel what I felt.
I will try and come back and update this but the next procedure is not until May19th they like you to heel for two months between the procedures it seems so a long process for sure but I pray worth it.
I was just wondering if any of you CH suffers have tried this or even heard of it?
They also said there is a new device the size of a a grain of rice that is awaiting FDA approval that they can implant to the same area and you can activate it yourself whenever the pain starts and when it is approved they said I would be a great candidate so will have to wait and see on that one to.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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maz
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Re: Radiofrequency ablation procedure?
Reply #1 - Apr 6th, 2016 at 7:29pm
 
I've had that procedure done twice.  The first time it was under heavy sedation but they had to abort the treatment because it was too painful.  The second time, It was done under general anaesthetic and it had no effect what so ever. Sorry. Sad
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Nervely
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Re: Radiofrequency ablation procedure?
Reply #2 - Apr 14th, 2016 at 11:59am
 
Hello BigMat,

Yes, I've had the procedure at Stanford.  90 minutes of a relatively green surgeon pushing an RF probe around my head while I'm awake, plus flouroscopy.  As they were wheeling me in they said to my wife " should only take about 15 minutes" and the said to me "this is a painful but quick procedure".

Problem was the guy couldn't find the sphenopalatine ganglion.  he found a lot of other nerves, and I could feel him stimulating them as it was like pin-pricks across various parts of my face.  He wanted me to feel a pin-prick somewhere in my nose but I never did.  At one point it felt like somebody was giving me a pierced lip.  Weird how they can stimulate the nerves.

At the end he pushed some steroids and local anesthetics in and he was a bit frustrated.  These meds gave me a couple months of improvement.

Now here's the interesting part:  I'm getting the same procedure done in 11 days (4/25).  Sure it's not for the faint of heart, but neither was my last Monday.  This time however they're bringing out the experienced guy.  I researched the guy assigned and he's actually written a book on navigating an RF probe within the cranium. 

I'll let you know how it goes.  I've tried a lot of things, so I'm desperate.

RR
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Hoppy
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Re: Radiofrequency ablation procedure?
Reply #3 - Apr 14th, 2016 at 4:25pm
 
Hi BigMatt, I thought this would be of interest to you.

Doctors test device designed to 'turn off' cluster headaches
Published on August 19, 2014

For those suffering excruciating pain from cluster headaches, relief may soon be available from an investigational device being studied in a national multicenter clinical trial. Recently, doctors at The Ohio State University Wexner Medical Center performed the first surgery in the United States to insert a neurostimulator to provide relief from cluster headaches, which are more painful than migraines. "Cluster headache is one of the most severe and disabling chronic pain conditions known to humankind. That's why it's important to look at options to help these patients," said Dr. Ali Rezai, director of the Neuroscience program at Ohio State's Wexner Medical Center and one of the scientific developers of this technology.

During the outpatient surgery, sinus surgeon Dr. Bradley Otto and oral surgeon Dr. Peter Larsen inserted the device through a small incision in the patient's gum into the side of the face affected by cluster headaches. Autonomic Technologies Inc. developed the miniaturized, multi-channel peripheral nerve stimulator, which is smaller than an almond, to stimulate the sphenopalatine ganglion (SPG). The SPG is a nerve bundle located behind the nose and is known to play a major role in severe headaches.

"Through an incision about 2 centimeters long, we're able to place this device, then pass it around the back of the maxillary sinus, or the cheek sinus, into this area where this ganglion is situated," said Larsen, who is professor of oral and maxillofacial surgery in the College of Dentistry at Ohio State. "The device is very small, and the patient doesn't even sense that it's there."

When patients begin to feel a cluster headache starting, they hold the rechargeable handheld remote controller to their cheek to activate the stimulator to block the pain signals. The patient's physician can program the device to give the appropriate length and strength of stimulation.

"This nerve control center sits behind the cheek sinus and is involved in the transmission pathway of cluster headache," said Otto, who is director of rhinology in the Department of Otolaryngology at Ohio State. "And so by blocking or short-circuiting that involvement, we think it will help treat cluster headache. The beauty of the device is that there are no internal batteries or other structures that need to be routinely removed. So, once we make the incision in the mouth and we place this device back behind the cheek sinus, it can be left forever."

It's estimated that nearly 400,000 people in the United States suffer from cluster headache, which can happen many times each day, with each one lasting from 15 minutes to three hours. Cluster headache is often called "suicide headache" because the pain is so intense. Cluster headaches typically involve one side of the head, and are much more common in men. The headaches are so severe that they cause very disabling sharp and stabbing pain around and in the affected eye, along with pain in the nose, head and temple. Drooping eyelids, redness and tearing often accompany the eye pain, and there is no cure. "SPG interventions have been around for the past 100 years," said Rezai, including using anesthetics to block the SPG to surgical procedures to cut the SPG or chemically burning it. "The main advantage of neurostimulation is that it's reversible and adjustable, and you're just modulating and blocking the pain signals."

In all, up to 120 patients with cluster headaches will receive the experimental device as part of the multi-center clinical trial that will last several years.

Source:
The Ohio State University Wexner Medical Center


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Nervely
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Re: Radiofrequency ablation procedure?
Reply #4 - Apr 14th, 2016 at 4:44pm
 
They had spoken to me about this trial and I had dearly hoped to get one.  However they recently told me that because I had already had a previous RF treatment that I was not eligible for the trial.  I need to wait until it makes it to the market to have it implanted.

Should this RF procedure not help then the plan is to continue with the list of busting/preventatives.  I just can't give up trying. 

I would not be surprised if I program an arduino to put out the same pulse and voltage as the Pusante, and perhaps shove some wire up through my gums at some point.  Desperate is as desperate does; and necessity is the mother of invention.  Oh I might damage something?  One of my favorite sayings is "if it's already broken..."
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maz
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Re: Radiofrequency ablation procedure?
Reply #5 - Apr 15th, 2016 at 3:49am
 
Nervely wrote on Apr 14th, 2016 at 4:44pm:
  Oh I might damage something?  One of my favorite sayings is "if it's already broken..."



Theres always the sharpened teaspoon - perfect size for an eyeball  Grin
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