Author |
Topic: Surgery??? (Read 1587 times) |
|
cronic_head_case
New Board Newbie
Someone find a cure asap!
Gender: 
Posts: 11
|
 |
Surgery???
« on: Apr 16th, 2008, 11:45am » |
 Quote  Modify
|
OK, So this is the situation...
I've just come back from seeing my specialist and he told me that i've basically exhausted all the medications for CH and some i've been taking at double the recommended dose with no results.
Now he wants to put me forward for what he called a trail operation which has been used in Italy and Belgium with good results. (except someone died in Belgium!).
The surgery he described involved a small box a bit like a pace maker being put in to your body which is connected to wires that join on to electrodes attached to the nerves in your head. This is meant to send signals which stimulate the nerves and thus get rid of the CH's.
I suppose you then have to spend the rest of your life looking like some sort of android with wires hanging out the back of your head! Don't sound like fun to me.
I just wondered if anyone had heard of this before or even less unlikely actually had it done. All info would be greatly received.
Death to the beast!
|
|
 IP Logged |
|
|
|
EstieSA
New Board Junior
Gender: 
Posts: 63
|
|
Re: Surgery???
« Reply #1 on: Apr 16th, 2008, 1:49pm » |
Quote Modify
|
on Apr 16th, 2008, 11:45am, cronic_head_case wrote:OK, So this is the situation...
I suppose you then have to spend the rest of your life looking like some sort of android with wires hanging out the back of your head! Don't sound like fun to me.
I just wondered if anyone had heard of this before or even less unlikely actually had it done. All info would be greatly received.
Death to the beast! |
|
I know of a local artist that got it to combat Parkinsons , and he's doing really well.
The wires are routed under the skin to just under the left collarbone , on your chest.
It is connected to a battery/control box which is inplanted into the chest. The frequency is then controlled by the neuro via a remote control unit.
It cost in the region of ZAR 150k. It was done by the same neuro that wants to inplant the "balloon" in my scull to control the beast...
Come to think of it, why didn't he suggest remote controlling the beast in my case???
|
|
IP Logged |
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Surgery???
« Reply #2 on: Apr 16th, 2008, 2:34pm » |
Quote Modify
|
The Lancet 2007; 369:1099-1106
Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients
Brian Burns MRCP a, Laurence Watkins FRCS b and Prof Peter J Goadsby MD a c
Summary
Background
Cluster headache is a form of primary headache that features repeated attacks of excruciatingly severe headache usually occurring several times a day. Patients with chronic cluster headache have unremitting illness that necessitates daily preventive medical treatment for years. When medically intractable, the condition has previously been treatable only with cranially invasive or neurally destructive methods.
Methods
Eight patients with medically intractable chronic cluster headache were implanted in the suboccipital region with electrodes for occipital nerve stimulation. Other than the first patient, who was initially stimulated unilaterally before being stimulated bilaterally, all patients were stimulated bilaterally during treatment.
Findings
At a median follow-up of 20 months (range 6–27 months for bilateral stimulation), six of eight patients reported responses that were sufficiently meaningful for them to recommend the treatment to similarly affected patients with chronic cluster headache. Two patients noticed a substantial improvement (90% and 95%) in their attacks; three patients noticed a moderate improvement (40%, 60%, and 20–80%) and one reported mild improvement (25%). Improvements occurred in both frequency and severity of attacks. These changes took place over weeks or months, although attacks returned in days when the device malfunctioned (eg, with battery depletion). Adverse events of concern were lead migrations in one patient and battery depletion requiring replacement in four.
Interpretation
Occipital nerve stimulation in cluster headache seems to offer a safe, effective treatment option that could begin a new era of neurostimulation therapy for primary headache syndromes.
Affiliations
a. Headache Group, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK
b. Division of Neurosurgery, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK
c. Department of Neurology, University of California, San Francisco, CA, USA
-------------------------------------------------
Lancet Neurol. 2006 Oct;5(10):873-877.
Deep brain stimulation in headache.
Leone M.
Department of Neurology and Headache Centre, Istituto Nazionale Neurologico 'Carlo Besta', via Celoria 11, 20133 Milano, Italy.
BACKGROUND: The therapeutic use of deep brain stimulation to relieve intractable pain began in the 1950s. In some patients, stimulation of the periaqueductal grey matter induced headache with migrainous features, indicating a pathophysiological link between neuromodulation of certain brain structures and headache. RECENT DEVELOPMENTS: Neuroimaging studies have revealed specific activation patterns in various primary headaches. In the trigeminal autonomic cephalgias, neuroimaging findings support the hypothesis that activation of posterior hypothalamic neurons have a pivotal role in the pathophysiology and prompted the idea that hypothalamic stimulation might inhibit this activation to improve or eliminate the pain in intractable chronic cluster headache and other trigeminal autonomic cephalgias. Over the past 6 years, hypothalamic implants have been used in various centres in patients with intractable chronic cluster headache. The results are encouraging: most patients achieved stable and notable pain reduction and many became pain free. All deep-brain-electrode implantation procedures carry a small risk of mortality due to intracerebral haemorrhage. Before implantation, all patients must undergo complete preoperative neuroimaging to exclude disorders associated with increased haemorrhagic risk. No substantial changes in hypothalamus-controlled functions have been reported during hypothalamic stimulation. Hypothalamic stimulation may also be beneficial in patients with SUNCT (short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing)-a disorder with close clinical and neuroimaging similarities to the cluster headache. WHERE NEXT?: Neuroimaging findings in patients undergoing posterior hypothalamic stimulation have shown activation of the trigeminal nucleus and ganglion. This evidence supports the hypothesis that hypothalamic stimulation exerts its effect by modulating the activity of the trigeminal nucleus caudalis, which in turn might control the brainstem trigeminofacial reflex-thought to cause cluster headache pain. Future studies might determine whether other areas of the pain matrix are suitable targets for neuromodulation in patients with cluster headache who do not respond to hypothalamic modulation.
PMID: 16987734 [PubMed
|
|
IP Logged |
Bob Johnson
|
|
|
cronic_head_case
New Board Newbie
Someone find a cure asap!
Gender:
Posts: 11
|
|
Re: Surgery???
« Reply #3 on: Apr 16th, 2008, 3:23pm » |
Quote Modify
|
Well it definitely sounds better the way you describe it. I had this image of a load of wires sticking out the back of my head!
I don't know why your nuro didn't get you to have that done. Probably the cost. It's £100,000 for it over here. Maybe you should get it done first and if it works OK with no issues about looking like a walking fuse board then I'll get it done to. lol.
|
|
IP Logged |
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: Surgery???
« Reply #4 on: Apr 16th, 2008, 3:33pm » |
Quote Modify
|
on Apr 16th, 2008, 3:23pm, cronic_head_case wrote:Well it definitely sounds better the way you describe it. I had this image of a load of wires sticking out the back of my head!
I don't know why your nuro didn't get you to have that done. Probably the cost. It's £100,000 for it over here. Maybe you should get it done first and if it works OK with no issues about looking like a walking fuse board then I'll get it done to. lol. |
|
Like this?
|
|
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: Surgery???
« Reply #5 on: Apr 16th, 2008, 6:11pm » |
Quote Modify
|
Hi chc, can you give us the name of the surgery your dr recommended?
The occipital nerve implant study that Bob shows is less invasive and not as potentially dangerous as the DBS (deep brain stimulation) surgery where one patient died.
Please know the difference before making your decision.
You say you've tried everything ... does that include alternative treatments like kudzu, taurine or www.clusterbusters.com ? You might be surprised by the results those treatments get.
pf wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss