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Lizzie2
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ONSI - results of consult
« on: Feb 7th, 2005, 7:12pm » |
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This morning was my consult with the neurosurgeon at Jefferson. This was to consider the Occipital Nerve Stimulator to help my chronic daily migraine and chronic cluster headaches.
The doc was really great. His name is Dr. Ashwini Sharan at Jefferson. I wish he was a regular headache neuro because he was awesome! At any rate, he was very honest and gave a straightforward opinion. He wasn't trying to sell any surgeries in any way.
He told me that the three surgeries they are currently looking at to treat headaches were the ONSI, cortical stimulation, and the deep brain hypothalamus stimulation.
He asked all about my headaches, and he was particularly interested in the location...which is the part that should be most interesting to all of you. My clusters sit around my eye, temple, and down my jaw (following the trigeminal nerve) when I really get nailed. Even my chronic daily migraine is on the right side of my head, top, temple, and forward to my eye.
Basically what he said is that the occipital nerve stimulator is useful for people who have headaches triggered by tension in the neck. The reason why occipital nerve block injections are not very useful to me is because the "theory" is that the occipital nerve travels all the way from the back of the head to the eye. However, in reality it doesn't ever go much past the mid-top of the head.
Due to this, the ONSI would probably be of very little use for me. I thought that was pretty interesting since it seemed to be of really big discussion for cluster use, but it seems after speaking with him that it really isn't very useful for clusters at all.
He felt that the best option was the deep brain hypothalamus stimulation, and he thinks if I wait a few more years (which can be difficult...) then they will know enough to be able to do it in the United States.
He said the biggest difficulty is that there is no "test" to show you are having a headache. None of the scans (short of a PET scan showing a structural abnormality in the hypothalamus) can show that we are having a headache. He said that because of this, you can't put a stimulator on a monkey and ask it if it has a headache! hehe Therefore, these surgeries are not FDA approved for headaches yet, which means no insurance is paying for them...without a major fight! That was another interesting point.
He is very interested in functional neurology and basically only does pain related surgeries, but he was very good. In the end, he told me to wait for about 5 years and come back again!
Wish it would have been a good answer, but I can see why it is not, and I'm glad he wasn't trying to push something that wouldn't have worked. As he was finishing up, he said that his final piece of advice was to never have something done that was irreversible. He said then when a new surgery comes out, I would be precluded because I had looked for a more immediate response instead of being patient - which he acknowledged was difficult.
There was more, I'm sure. But I thought I'd post the appointment since it is quite different from other stories about the ONSI and other surgeries. I was quite surprised!!
Carrie/Lizzie2 
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Filbert
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Re: ONSI - results of consult
« Reply #1 on: Feb 7th, 2005, 7:51pm » |
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Lizzie here's why the deep brain stimulation is still a few years off and sorry you didn't receive any good news.
1: Brain. 2005 Feb 2; [Epub ahead of print] Related Articles, Links
Hypothalamic stimulation in chronic cluster headache: a pilot study of efficacy and mode of action.
Schoenen J, Di Clemente L, Vandenheede M, Fumal A, De Pasqua V, Mouchamps M, Remacle JM, de Noordhout AM.
University Department of Neurology, University of Liege, Liege, Belgium; University Department of Neuroanatomy, University of Liege, Liege, Belgium.
Summary We enrolled six patients suffering from refractory chronic cluster headache in a pilot trial of neurostimulation of the ipsilateral ventroposterior hypothalamus using the stereotactic coordinates published previously. After the varying durations needed to determine optimal stimulation parameters and a mean follow-up of 14.5 months, the clinical outcome is excellent in three patients (two are pain-free; one has fewer than three attacks per month), but unsatisfactory in one patient, who only has had transient remissions. Mean voltage is 3.28 V, diplopia being the major factor limiting its increase. When the stimulator was switched off in one pain-free patient, attacks resumed after 3 months until it was turned on again. In one patient the implantation procedure had to be interrupted because of a panic attack with autonomic disturbances. Another patient died from an intracerebral haemorrhage that developed along the lead tract several hours after surgery; there were no other vascular changes on post-mortem examination. After 1 month, the hypothalamic stimulation induced resistance against the attack-triggering agent nitroglycerin and tended to increase pain thresholds at extracephalic, but not at cephalic, sites. It had no detectable effect on neurohypophyseal hormones or melatonin excretion. We conclude that hypothalamic stimulation has remarkable efficacy in most, but not all, patients with treatment-resistant chronic cluster headache. Its efficacy is not due to a simple analgesic effect or to hormonal changes. Intracerebral haemorrhage cannot be neglected in the risk evaluation of the procedure. Whether it might be more prevalent than in deep-brain stimulation for movement disorders remains to be determined.
PMID: 15689358 [PubMed - as supplied by publisher]
All the best Filbert [thanks Em]
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Lizzie2
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Re: ONSI - results of consult
« Reply #2 on: Feb 7th, 2005, 8:01pm » |
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Thank you Filbert! I knew I had read something that went against what he was saying about the surgery... He was referring to the Italian surgery on...5 people I think?...and none died from surgery. But this article done in another location on different people sounds differently!
Thanks again!
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Filbert
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Re: ONSI - results of consult
« Reply #3 on: Feb 7th, 2005, 8:25pm » |
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What particularly worries me about this is not that someone died, although that is bad enough, but someone had their stimulator switched off even though they were pain free! Talk about being a human guinea pig!!
Filbert.
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Lizzie2
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Re: ONSI - results of consult
« Reply #4 on: Feb 7th, 2005, 8:31pm » |
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on Feb 7th, 2005, 8:25pm, Filbert wrote:What particularly worries me about this is not that someone died, although that is bad enough, but someone had their stimulator switched off even though they were pain free! Talk about being a human guinea pig!!
Filbert. |
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Yeah that's the part about the monkeys he was referring to. Unfortunately the only way to know if the stim was doing the job, and it wasn't some freak side effect of testing, anesthesia, etc....was to shut the thing back off... And therefore they knew it was the thing that was doing the job... Sucks, but that's all we have for now.
As I said in my post, he told me to come back in 3-5 years, so I didn't make any more appointments with him or anything. But I really thought he was great, and I will definitely stay on top of the research as it comes out!
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Filbert
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Re: ONSI - results of consult
« Reply #5 on: Feb 7th, 2005, 8:42pm » |
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Fair enough Lizzie I can see your point.
Filbert.
Still they were courageous/desperate people.
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Lizzie2
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Re: ONSI - results of consult
« Reply #6 on: Feb 7th, 2005, 8:57pm » |
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on Feb 7th, 2005, 8:42pm, Filbert wrote:| Still they were courageous/desperate people. |
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Definitely...I won't argue with that one!
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E-Double
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Re: ONSI - results of consult
« Reply #7 on: Feb 7th, 2005, 9:03pm » |
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on Feb 7th, 2005, 8:25pm, Filbert wrote:What particularly worries me about this is not that someone died, although that is bad enough, but someone had their stimulator switched off even though they were pain free! Talk about being a human guinea pig!!
Filbert. |
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That's the big time ethical dilemma.......
How do you know if the treatment was effective other then doing a reversal/withdrawl of treatment.....
you can't ......A shame but in a way necessary.
Wishing you relief!!
E2
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Jeepgun
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Re: ONSI - results of consult
« Reply #8 on: Feb 8th, 2005, 9:08am » |
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Outstanding, Lizzie. What a great doctor. I don't suppose a trip to Europe is in the cards for you, any time soon? 
I hope you are able to find some relief... Hang in there.
-Frank
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Gator
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Re: ONSI - results of consult
« Reply #9 on: Feb 8th, 2005, 9:47am » |
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I'm glad someone was patiently giving you straight answers and not selling miracle cures. I wish all neurologists could be so professional.
I watched something on deep brain stimulation as a treatment for Parkinson's last night. Apparently, Parkinson's is also centered in the hypothalamus, caused by an overactive sub-nucleus. In the operation, they were able to tell when they got the lead placement correct because in that disease, there is a high level of activity and audible noise on the monitors they use. I guess CH doesn't have anything like that. In the piece I watched, a man with Parkinson's had his implant turned off and demonstrated trying to drink from a coffee cup. I thought the poor man was going to break a tooth or the coffee cup with his teeth. Just could not do it. They turned on the implant and boom, like turning on a light switch, his hand steadied. The mortality rate for that operation is approximately 1 in 200. I would expect it to be similar for clusterheads.
As far as the risks? Life gives no guarantees. You can refuse possible pain ending surgery and walk out of the neuro's office and be killed by a drunk driver on your way home. I wouldn't jump on any surgery as a first choice, but at this point in my life I would be the first in line when they started looking for guinea pigs or test dummies or whatever you want to call it.
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Jeepgun
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Re: ONSI - results of consult
« Reply #10 on: Feb 8th, 2005, 10:03am » |
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I once worked with a surgeon who had the early stages of Parkinson's. He was preparing to suture an incision, and he was trembling all the way down, with the hemostats, needle, and forceps. I was assisting, and thinking, "Oh man... This is going to be a farging massacre!" He got within a few inches of the incision, and BOOM, he was rock-steady until he finished. Pretty amazing...
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