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burnt-toast
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Hypothalamic Stimulation
« on: Jun 5th, 2005, 12:35am » |
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I've visited many times but have only recently began posting. I symptoms are primarily chronic with just 9 months pain free in the last 10 years. My typical nightly adventures are 3 - 4 attacks, 5 not uncommon and up to 4 hours duration. Basically I don't remember what it is like to be normal and function without being in a state of exhaustion.
I'm on my third neurologist and have gone through numerous med. therapys without success.
My current neurologist has gone through his bag of tricks and wants to try more dangerous meds. which I refuse to take because the side effects are not worth the risk.
He is now discussing the possibility of Hypothalamic Stimulation which is basically implanting an electrode in the brain and electronically stimulating the trigeminal nerve. I've just started to research this surgery but is anyone familiar with this procedure? Any input would be greatly appreciated.
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hdido
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Re: Hypothalamic Stimulation
« Reply #1 on: Jun 5th, 2005, 4:30am » |
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I've not heard of a surgery to stimulate the trigeminal nerve, but there are two surgical procedures, both done only in Europe, that are in use. One is ONSI or Occipital Nerve Stimulation Implant, done in London by Dr. Laurence Watkins; the procedure involves placing electrodes on the scalp, under the skin with a pacemaker- like device implanted in your chest. The occipital nerve is stimulated with the objective of "re-training the brain" from sending out CH pain signals. There have been about 5 or 6 of these procedures performed and only one has been partially successful; all of the rest have had major problems with the electrodes either slipping out of place or breaking, requiring more surgery. The other procedure, Deep Brain Hypothalamic Stimulation (DBS) is done in Milan by a Dr. Gennaro Bussone. It is more invasive and involves placing electrodes in the hypothalamic area of the brain thought to be the cause of CH pain. In a recent article, Dr. Bussone reports a success rate of 100% in 16 patients who have had this procedure done, but more than 16 have had it performed and he makes no mention of those-in at least 8 other cases the procedure has failed. Dr. Bussone is at the Neurology Clinic at the University of Milan. A Dr. DeSalles, at UCLA, began performing this operation in February of this year and I know of one patient who, after some problems, now reports success. DBS has been performed with great success on patients with Parkinson's Disease, for which the operation was developed; with regards to CH, it is still experimental and the jury is still out. If I had to choose between the two, I would take DBS as it has had some success, but since the first operation was performed only about 2 1/2 years ago, the long term efficacy of the procedure is not known nor are any possible long term complications, such as infection. I have spoken with Dr. Bussone and he said that should any problems develop, any neurosurgeon can remove the implants without any problems; it is the implanting that is the hard part. The operation was being performed in Liege, Belgium, but has since ceased as one patient died due to bleeding in the brain, the exact cause of which has not yet been determined. The overall complication rate (NOT DEATH RATE) is 3%. There has been a rumor going around Europe that 10 people had DBS performed, that 5 results were sucessful and that the other 5 patients who did not have successful results committed suicide-that is totally bogus. The opertion is also being considered to be performed in Germany. You can find out information on both procedures using any search engine. Good luck my friend-I too have intractable chronic CH (for almost 10 years).
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ArCane
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Re: Hypothalamic Stimulation
« Reply #2 on: Jun 5th, 2005, 8:01am » |
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Have you tried any of the alternative methods? I would try them before surgery. Surgery is a last resort. I hope you find what your looking for, PF TIME!!
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #3 on: Jun 5th, 2005, 10:49am » |
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Thanks for the info an support.
hdido - I've found some short snippets on surgical considerations and options in the O.U.C.H. research library - www.clusterheadaches.org/library/surgery
I've also found clinical information at brain.oxfordjournals.org but access to the full clinical data costs $30 per day so I will wait until I have located a number of sources and pay for available research at one time. For now I have just used the abstracts that are available for free. I am not entirely comfortable with surgery at this time and like my meds. will research thoroughly before making any decisions. Thanks and by the way, I know that 10 years of this crap has a profound effect on ones life. Even my brother still thinks that all I have are frequent headaches and doesn't know why I seem mentally slow at times. Luckily my wife understands entirely but again that may be lucky for me but she lives with a my nightmare and cannot help.
ArCane - In 10 years I've gone through 3 neurologists and many of the most common med./therapy treatments without results. My real problem at this point is that even meds. with low side affects were not intended for long term use @ increasing dosages and the long term damage may not be worth the risk. Each neurologist has eventually prescribed ever more dangerous drugs that may or may not stop my clusters but the risks of taking them short term are high enough with the long term even worse. Curing my clusters but destroying my liver, kidneys, heart, pancreas or becomming truely mentally impared are not pleasant thoughts. Damage from surgery ain't great neither!
What types of alternative treatments were you referring to. I know that I haven't covered all the bases and am open to just about anything with low risk to life & limb.
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nani
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Re: Hypothalamic Stimulation
« Reply #4 on: Jun 5th, 2005, 11:14am » |
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on Jun 5th, 2005, 10:49am, burnt-toast wrote:
What types of alternative treatments were you referring to. I know that I haven't covered all the bases and am open to just about anything with low risk to life & limb. |
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Kudzu, LSA, psilocybin. There are threads and info on each of these here on the Meds board. Should you decide to try one, educate yourself fully before doing so. PF wishes, nani
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #5 on: Jun 5th, 2005, 11:30am » |
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Thanks nani, research is how I've driven doctors and neurologists insane.
It's funny how these skilled professionals react when patients come back with more information than they have. Used to think this would create a working relationship betweem patient and doctor. Go figure.
I'll look into the treatments you reference as well as others that are referenced on the site.
The Lord gives and the Lord takes away. Let's just pray that includes Cluster Headaches.
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pubgirl
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Re: Hypothalamic Stimulation
« Reply #6 on: Jun 5th, 2005, 7:40pm » |
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burnt-toast
I would save your money as I don't think (maybe wrong) that the ONSI's for CH at the London Institute of Neurology have been written up yet. I think you will find the clinical data available may be Parkinson related rather than CH.
Mike on the OUCH Uk board might fill you in on all the UK CH ONSI patients' progress and problems (mixed results with some notable success, and no adverse events) if you message him there (he might even see it here and answer)
I know some of the information, but not all.
Wendy the Brit
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #7 on: Jun 5th, 2005, 10:14pm » |
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Wendy the Brit
Thanks for the input. The reference material that I am starting to bookmark is CH specific. From the preliminary information that I am getting it appears that the surgery is hit -N- miss, some good results, some bad results, some really bad results and some no results. I'm going to stay on this because I'm tired of being tired and afraid to relax or sleep.
Worked on my son's truck today and the minute I sat down to relax after we were done WHAM, couldn't even enjoy talking with him about what we accomplished. He just goes away when these things attack. Been through the second attack now and know that I have 2 maybe 3 to go. This has been going on soooooo many years now that the abnormal has become normal. Sorry, I'm venting.
I'm also going to research the alternative options that others are referening. I really need a solution or maybe just a small break.
Oh, one more thing, I need to learn how to message someone, I'm new to the site. When I do I'll message Mike O.U.C.H. UK.
Thanks for listening
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Bob_Johnson
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Re: Hypothalamic Stimulation
« Reply #8 on: Jun 6th, 2005, 9:59pm » |
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Neurol Sci. 2005 May;26 Suppl 2:s138-9.
Deep brain stimulation and cluster headache.
Leone M, Franzini A, Felisati G, Mea E, Curone M, Tullo V, Broggi G, Bussone G.
Headache Centre, C. Besta National Neurological Institute, Via Celoria 11, I-20133, Milan, Italy. leone@istituto-besta.it
In recent years, neuroimaging data have greatly improved the knowledge on trigeminal autonomic cephalalgias' (TACs) central mechanisms. Positron emission tomography studies have shown that the posterior inferior hypothalamic grey matter is activated during cluster headache attacks as well as in short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT). Voxel-based morphometric MRI has also documented alteration in the same area in cluster headache patients. These data suggest that the cluster headache generator is located in this region and leads us to hypothesie that stimulation of this brain area could relieve intractable cluster headache just as deep brain stimulation improves intractable movements disorders. This view received support by the observation that high frequency stimulation of the ipsilateral hypothalamus prevented attacks in an otherwise intractable chronic cluster headache patient previously treated unsuccessfully by surgical procedures to the trigeminal nerve. So far, 16 patients with intractable chronic cluster headache (CCH) and one intractable SUNCT patient have been successfully treated by hypothalamic stimulation. The procedures were well tolerated with no significant adverse events. Hypothalamic DBS is an efficacious and safe procedure to relieve otherwise intractable CCH and SUNCT.
PMID: 15926012 [PubMed - in process]
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #9 on: Jun 6th, 2005, 10:19pm » |
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Bob_Johnson
Thanks, this is the type of information that I've been looking for and bookmarking. I had not come across this research report so I really appreciate the assist.
From the limited detail I believe it is an abstract so I will also keep an eye out for the detailed research report.
I can't take these things any more and I'm not responding to meds. Hoping this surgery has come far enough to be considered. In any case I'm going to post whatever I find good or bad.
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unsolved1
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Re: Hypothalamic Stimulation
« Reply #10 on: Jun 6th, 2005, 11:30pm » |
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Long-term follow-up of bilateral hypothalamic stimulation for intractable cluster headache.
Leone M, Franzini A, Broggi G, May A, Bussone G.
Istituto Nazionale Neurologico Carlo Besta, via Celoria 11, 20133 Milano Italy. leone@istituto-besta.it
We provide a detailed case history of the first patient to receive bilateral hypothalamic stimulation to control severe bilateral chronic intractable cluster headaches initially occurring mostly on the left. These attacks were accompanied by life-threatening hypertensive crises and a grave deterioration in the patient's psychological state. Destructive surgery to the left trigeminal was absolutely contraindicated. Electrode implantation and continuous stimulation of the left posterior inferior hypothalamus resolved the left attacks. After four destructive operations on the right trigeminal, right side attacks recurred. Electrode implantation (with continuous stimulation) to the right resulted in immediate resolution of the right side pain and the hypertensive crises. On several occasions, both known and unknown to the patient, the stimulators were turned off: in all cases, crises reappeared and in all instances disappeared relatively quickly after turning stimulation back on. Pain crises have never reappeared when ipsilateral stimulation is ongoing. The only side effects were observed during long-term bilateral stimulation, consisting of transient vertigo and bradycardia. After 42 months (left) and 31 months (right) of follow-up, the patient remains crisis free without the need for pharmacological prophylaxis.
Full text article at :
Brain.oupjournals.org
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #11 on: Jun 7th, 2005, 6:58pm » |
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unsolved1
Thanks for the support. I've bookmarked 30 - 35 abstracts with specific ch/surgery information and have included the reports that you and Bob_Johnson provided. I going to start gathering the full reports, many of them appear to the Milan Italy case study but with different numbers of subjects????? I have found other studies conducted in the U.S.
From the preliminary information I can only say that I am skeptical but want to see the detailed studies.
It truely appreciate all the help. In the meantime I'm going to look into some of the other options that have been provided. Thanks All!
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whitewatertazz
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Re: Hypothalamic Stimulation
« Reply #12 on: Jun 7th, 2005, 10:44pm » |
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Currently I had the Occipital Nerve Stimulator installed at NorthWestern in Chicago Ilinois. I have ben pain free for 2 weeks and never been pain free for more than 4 days. I have been chronic for 2 and half years with no relief.
My electrode did end up eroding through the skin, but that is a 5% chance. I had it removed yesterday and should have it back installed in 2 - 4 weeks. I get an attack and I turn up the intensity and it goes away in minutes.
I also had some good luck with the Occipital nerve block before this. I would get 2 - 4 days relief from the nerve block and based on that they thought this would work.
Dr. Robert Levy is my neurosurgeon at NorthWestern has done miracles with many diffetent implants. Do a google search on his name and NorthWestern and you should get a load of Info.
Here is the Process. I went in on a Monday had it installed on the right side only. The wire is implanted, but everything is external for a 4 day trial. At that point you decide wether or not to go for it. After that they do the install...I found it not to be that bad.
I was released on Saturday and had a home nurse for Anitbiotic IV until Monday. Unfortunately the electrode eroded through the skin a bit and it was just removed yesterday 2 weeks after the original install. But on the next install we will get it right...
It changed me for the better for the last 2 weeks and I am back in pain for now...But I have hope for the first time.
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unsolved1
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Re: Hypothalamic Stimulation
« Reply #13 on: Jun 7th, 2005, 11:03pm » |
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Plz don't confuse the Occipital nerve stimulator (ONSI) with the deep brain stimulation (DBS) or Hypothalamic stimulation. These 2 are very different. The DBS is still very experimental.
Whitewater - glad to hear the ONSI has helped you and I hope it continues to help you. I also had a 'trial implant'. It was a bilateral ONSI. I had it for 7 days. It was done by Dr. Rogers from MHNI. It didn't help me at all.
Unsolved
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #14 on: Jun 8th, 2005, 12:13am » |
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whitewatertazz - glad to hear someone is getting relief, thanks for the feedback. I wish you well on the follow up installation. From what I've read multiple surgeries to get the installations correct are not uncommon.
unresolved1 appreciate the heads-up on these procedures.
I have basic information on both procedures and a few more as well.
What I want to do now is review the detailed clinical studies/reports to get a better handle on the various surgical options.
Also investigating non-surgical options that I'm getting feedback on from other members. From there I hope to determine the best way try and get some relief from these things.
Tom
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whitewatertazz
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Re: Hypothalamic Stimulation
« Reply #15 on: Jun 8th, 2005, 1:44pm » |
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Sorry for mudding up the water a bit, I seen that ONSI was mentioned in the string and thought I should mention that I was able to get relief so far from it.
No meds worked for me...so I am a little over joyous that I achieved pain free.
Cheers to all...
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javi_spain
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Re: Hypothalamic Stimulation
« Reply #16 on: Jun 8th, 2005, 5:26pm » |
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Whitewater
By all means, keep us updated on your progress with the second implant, start a new thread if you think it's better, but please keep the info coming.
Good luck to you all guys, it takes a brave person to undergo such procedures.
Javi
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #17 on: Jun 9th, 2005, 1:10am » |
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whitewatertazz -
you haven't mudded up the waters. I started researching Hypothalamic Stimulation but found reports on several surgical procedures. ONSI being one of them. Just starting to put everything together into a reasonable format to hopefully make it more understandable. It may take a little while but I want to follow through with the best information I can find. My neurologist is also gathering information for me. Bless his heart, I think he wants to tinker 
Whitewater
I haven't provided much information yet but I hope to. By the way for me bravery has nothing to do with it. More like desperation. And I'm still looking into other alternatives.
Tom
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Pinkfloyd
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Re: Hypothalamic Stimulation
« Reply #18 on: Jun 9th, 2005, 1:16pm » |
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on Jun 8th, 2005, 12:13am, burnt-toast wrote:
I have basic information on both procedures and a few more as well.
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Doctors operate on wrong side of two patients’ heads
By Rob Olmstead
Daily Herald Staff Writer
Posted Thursday, June 09, 2005
Wearing big, bright buttons on their lapels that read “L” and “R,” two suburban residents Wednesday showed they know what they claim their doctors didn’t — their left from their right.
In two unrelated cases, Rashida Aziz, 35, of Lombard and Elie G. Ghawi, 62, of St. Charles had the wrong side of their heads operated on. In Ghawi’s case, doctors from Loyola University Medical Center on Sept. 4, 2003, opened up the left side of his head and began drilling into his skull before they realized they were supposed to be operating on the right side. They stopped and proceeded with the correct side during the same operating session.
In Aziz’s case, Dr. Konstantin Slavin completed an entire operation on the right side of her head on Dec. 27, 2004, before he realized his mistake. He performed the correct surgery a few days later.
Both Aziz and Ghawi suffer from trigeminal neuralgia, a little-understood condition that causes shooting pains in the faces of its victims. Ghawi compared the sensation to “if you ever got shocked by electrical wire.”
To end the pain, doctors essentially disconnect a nerve in the head so the patient doesn’t feel the pain anymore.
Aziz and Ghawi told their story at a press conference at Clifford Law Offices, where their attorney, Keith A. Hebeisen, works. Hebeisen maintained that both were subjected to unnecessary pain and risk of infection and complications. He filed suit on behalf of Aziz Wednesday and on behalf of Ghawi May 2.
Aziz said she had the added burden of having to fear what would happen in the second surgery.
“God knows what’s going to happen on the other side,” she said.
Both Aziz and Ghawi said their surgeries — the correct ones — did end up curing their pain.
A spokesman for Loyola declined to comment. Slavin also declined to comment.
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I know it wasn't for clusters but....
I would suggest the 2 1/4 inch versions, in red..
http://www.busybeaver.net/
Bobw
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vig
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Re: Hypothalamic Stimulation
« Reply #19 on: Jun 9th, 2005, 1:26pm » |
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wow.
There are better alternatives than surgery.
Please try those first before considering surgery.
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seasonalboomer
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Re: Hypothalamic Stimulation
« Reply #20 on: Jun 9th, 2005, 1:29pm » |
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on Jun 9th, 2005, 1:16pm, Pinkfloyd wrote:
Doctors operate on wrong side of two patients’ heads
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So, is that one of those issues like determining "stage right" vs. "stage left". Is the left side of your brain, from your side "looking out", or from the doctor's perspective, looking at you? Damn, now I'm scared thinking about it. Am I left brained from my own perspective, or from the way others looking at me see me?
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| « Last Edit: Jun 9th, 2005, 1:29pm by seasonalboomer » |
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Pinkfloyd
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Re: Hypothalamic Stimulation
« Reply #21 on: Jun 9th, 2005, 1:52pm » |
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on Jun 9th, 2005, 1:29pm, seasonalboomer wrote:
Am I left brained from my own perspective, or from the way others looking at me see me?
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I'd stay away from mirrors if I were you. The confusion may cause a breakdown.
Bobw
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
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www.obscuredview.blogspot.com
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burnt-toast
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Re: Hypothalamic Stimulation
« Reply #22 on: Jun 9th, 2005, 11:35pm » |
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[b]Bobw, seasonalbloomer -[/b]
Is is possible to trade up for another disease? This one doesn't fit my lifestyle.
vig -
Right now I need to understand all of the alternatives. Have looked at the site for years and kind of accepted the treatments received from neurologists. Can't do that any longer and need to find relief. Just want to know what may be the best option(s) may be. Thanks.
Tom
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Pinkfloyd
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Re: Hypothalamic Stimulation
« Reply #23 on: Jun 9th, 2005, 11:43pm » |
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on Jun 9th, 2005, 11:35pm, burnt-toast wrote:[b]Bobw, seasonalbloomer -[/b]
Is is possible to trade up for another disease? This one doesn't fit my lifestyle.
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Hey Tom,
You could probably make a trade with someone with migraines, fibromyalgia and PMS but you might have to throw in a first round draft choice in 2006.
Bobw
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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ozzy
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Re: Hypothalamic Stimulation
« Reply #24 on: Jun 10th, 2005, 11:02am » |
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on Jun 9th, 2005, 11:43pm, Pinkfloyd wrote:
You could probably make a trade with someone with migraines, fibromyalgia and PMS but you might have to throw in a first round draft choice in 2006.
Bobw |
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Bob,
How high up in the first round are we talking? The Eagles will need a new wide receiver...I mean I'd throw my wife for the trade, she fits the profile (minus the fibromyalgia, but she is a hard worker, does that count?)
Ozzy
PS. Disclaimer: I love my wife dearly
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