|
||||
|
Title: Deep Brain Implant to treat cluster ha's Post by neuronurse on May 18th, 2005, 7:16pm I work with Dr. Philip Starr, a Board Certified Functional Neurosurgeon. He has successfully implanted deep brain stimulation devices in patients with cluster headaches. THis has dramatically improved their symtpoms! The largest series for this type of surgery has been done in Milan, Italy. Using their coordinates he implants one deep brain lead into the hypothalamus. The lead is then connected to a pacemaker of sorts, all tunneled under the skin. This pacemaker is then programmed to 'dial out' the pain. I am involved programming these stimulators and want to spread the word to those who might be interested in this. It is an awake brain surgery - but Dr. Starr has done this type of surgery on many diagnoses and in over 500 pts at the Univ. of California, San Francisco and at the SF VA Hopital. If interested, please email me directly with questions. susan.heath@med.va.gov |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Jonny on May 18th, 2005, 7:40pm Is it free? And could you posts some links about some of his surgeries? |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by broomhilda on May 18th, 2005, 7:46pm on 05/18/05 at 19:16:59, neuronurse wrote:
Many diagnoses? Like different headache types or diagnosed with ch? 500 sounds extremely high, are there patients feedback for us to view as well as what Jonny requested? |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by neuronurse on May 18th, 2005, 7:49pm Dr. Starr takes ALL types of insurance. In California, even Medi-Cal (state-sponsored insurance) is accepted. If you are a Veteran, you can receive this for free if you are eligible. The cost to the Insurance companies is about 50K. To learn about the basic DBS implants (FDA approved for Parkinson's, Essential Tremor and Dystonia patients) go to the Medtronic web site: www.medtronic.com/neuro/parkinsons/activa_qa.html |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by neuronurse on May 18th, 2005, 7:59pm http://neurosurgery.medschool.ucsf.edu/faculty_staff/department_faculty/starr.html This is his UCSF link. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 18th, 2005, 8:06pm No thank you Dr. Frankenstein... |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Jonny on May 18th, 2005, 8:19pm Why is it that I do not see CH even mentioned on the home age? Ill have my landscaper work a weed whacker on my head before I deal with this dude. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by broomhilda on May 18th, 2005, 8:40pm Somehow this looks more appealling... http://www3.telus.net/public/ehopkins/funny-pictures/dirty-pictures/dirty-pictures-0063.jpg |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by E-Double on May 18th, 2005, 8:45pm Are there any real statistics regarding the efficacy of such procedures...... It appears that those who have had to have surgeries for their CH get a relatively short period of relief or it morphs and just attacks the other side...... I have read the study conducted in Italy but I would like to see larger stats despite never considering such a drastic procedure for myself. Regards, E |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Jonny on May 18th, 2005, 8:53pm Fuckin bitch dont know who shes dealing with......LMMFAO ;;D From: Heath, Susan L. Date: 05/18/05 21:00:39 To: 'jonny' Subject: RE: Cluster headaches Oh, I can accept this. Perhaps if a patient who has had this says otherwise, you might be less mistrustful? Susan Heath, RN, MS, CNRN Movement Disorder CNS Parkinson Disease Research Education Clinical Center (PADRECC) San Francisco VA Medical Center 415-379-5530 -----Original Message----- From: jonny [mailto:jonnymule@comcast.net] Sent: Wednesday, May 18, 2005 5:57 PM To: Heath Susan L. Subject: RE: Cluster headaches Ive been chronic for 30 years and I would rather stay on my meds then let you freaks work on my brain....you will gain NO friends at CH.COM.......Get use to it! -------Original Message------- From: Heath, Susan L. Date: 05/18/05 20:52:54 To: 'jonny' Subject: RE: Cluster headaches There have been some pretty funny responses. Dr. Frankenstein, weed wacker preferred to brain surgery. I wonder if they only knew that it has improved some people's life and kept them from feeling suicidal! IT is not a guarantee, but it has "decreased symptoms in most but not all patients." Works better than drugs! Susan Heath, RN, MS, CNRN Movement Disorder CNS Parkinson Disease Research Education Clinical Center (PADRECC) San Francisco VA Medical Center 415-379-5530 -----Original Message----- From: jonny [mailto:jonnymule@comcast.net] Sent: Wednesday, May 18, 2005 5:21 PM To: Heath Susan L. Subject: RE: Cluster headaches Thanks again. Jonny -------Original Message------- From: Heath, Susan L. Date: 05/18/05 20:17:48 To: 'jonny' Subject: RE: Cluster headaches I posted on the web site his UCSF link. He can be 'googled' - just put in Philip Starr, DBS (for deep brain stimulator) and you will see many items on him. He is one of the top DBS neurosurgeons in the Country. Really. Susan Heath, RN, MS, CNRN Movement Disorder CNS Parkinson Disease Research Education Clinical Center (PADRECC) San Francisco VA Medical Center 415-379-5530 -----Original Message----- From: jonny [mailto:jonnymule@comcast.net] Sent: Wednesday, May 18, 2005 4:57 PM To: susan.heath@med.va.gov Subject: Cluster headaches Could you please send me any Internet links to anything this doc has done? Thank you jonny |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by nani on May 18th, 2005, 8:57pm Um, I think I'll pass... I've had brain surgery and it kinda makes CH feel like a walk in the park. Stay outta my grey matter, please... |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by neuronurse on May 18th, 2005, 9:02pm I understand why many of you feel skeptical. The previous medical/surgical attempts to help CH have been, say, less than exciting and usually disappointing. This procedure IS not FDA approved for CH, but it IS approved for the other three diagnoses I mentioned above, and is being actively researched for this problem, as well as Tourettes. So, this IS experimental, so is not for the faint hearted. However, much has been done with electrical 'jamming' of the brain's abnormal signals for other serious progressive neurological disorders. It does sound pretty out there, I must admit. This is definately new territory. No need to justify why any of you would not wish to have awake brain surgery. I will ask the patients who have had this surgery to post their opinions. Again, we only are trying to alert those with this debilitating problem that there are options. The major risks are stroke from the surgery, 3%, and infection 3-5%. The benefit is a 95-97% chance of getting better. Information only. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by broomhilda on May 18th, 2005, 9:05pm on 05/18/05 at 21:02:06, neuronurse wrote:
This inaccurate as you are posting for other debilitating disorders and not for ch, therefore your stats are incorrect and unfounded. edit to add has this experimentation been done on ANY patients with ch? |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by sandie99 on May 18th, 2005, 9:12pm I think MRI scan was enough of brain peeking for me... |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Karla on May 18th, 2005, 9:39pm I would try it But can't afford travel expenses at this time. Keep up the good work. At least your researching and trying to help us. If I recall it did help those in Italy. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kcopelin on May 18th, 2005, 9:40pm I have to tell y'all-this scares me! I happen to get my medical treatment through the VA and I'm gonna be really freaked if they expect me to do this! One of the images I use while trying to outrun the beast is surgical removal of my brain-not that I really want that to happen-I just want the pain to stop. However, from everything I've read, the odds are really against this procedure working for clusterheads- one of the infuriating things about clusters is that they stop suddenly and you have no idea if it was something you did or whether it was just time. Seems that there may be an over abundance of grey matter in the hypothalimus in clusterheads-I'm not convinced that stimulating that would be good. Thanks for your input though. Kathy |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kissmyglass on May 19th, 2005, 12:25am Hey peeps please don't scare this lady away, DBS may be my last hope....I would do it, I'm out of options, but I have no ins. I have to start begging Medtronic to give me one of those stimulators. I have a doc to install it.... Kev |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Mr. Happy on May 19th, 2005, 12:39am I agree with you, Kev, and I got your six. You got first. Have read one or two of the Milan digests, at best. In one of the tests with 6-8 subjects, one subject kinda died from a "leak" in his brain. The rest of the folks fared pretty well. I'm sure there were other tests........and that's what we'd like to see, Neuronurse. I'm glad you brought Doc Starr to our attention, glad it's being done in the US, and glad you can provide us with details upon request. Most here, like Kev, look on this as a last resort. Me too. You'll pardon the group if we can find a less invasive way of coping, instead of looking at this procedure as a first step choice. Thanks for your input! Hope you'll stay and answer the local native's questions. There's gonna be a lot of them. RJ |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Bionic_Daddy on May 19th, 2005, 2:48am Neuronurse & all sufferers, I am the first D.B.S. patient in Los Angeles. I've been CHRONIC for 5 years with kip 9-10's daily. Tried every med. availible, they only work for a SHORT TIME. Imetrex, Amerge, DHE, Frova, Maxalt, Verapimil, Lithium etc. O2 & Prednisone were my only support. My Chronic HA'S have decreased in pain by 2/3rds and getting better. The surgery was WELL worth my relief! Yes, this surgery is NASTY. The night after surgery was not as painful as the BEAST for days on end. Was this 15 hours of surgery worth it, Yes for me. I am finally starting to enjoy my life & enjoy my family again! This surgery is still experimental & so is the programming. My Doc. & I are still fine tuning the stimulator. Bionic Daddy |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Sean_C on May 19th, 2005, 8:10am Neonurse should donate this to anyone here who needs it Kev. Lets see, 50 chronic dontions for free, 8000 members ch.com @ 50K a piece = 400,000,000 in gross sales if it worked. What do you think neoronurse, make it happen. Sean............................... |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 19th, 2005, 9:27am hmm let me see.... DBS or clusterbusters..... to me that's a no-brainer. Now, if CB doesn't work, go for it, but it's hard for me to imagine, you'll open yourself up to the risk of death or brain damage, but not try the alternatives first. (and there are now several safe alternatives to try first) I know we're all desperate |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kissmyglass on May 19th, 2005, 9:34am As I said Paul..."I am out of options"....sucks |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Bob P on May 19th, 2005, 9:42am This is really only an otion for chronic sufferers. Here's the article from the Italians in the OUCH Library (you guys should read it sometime). http://www.clusterheadaches.org/library/hypothalamus/wire_in_brain.htm |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 19th, 2005, 9:44am sorry, Kev. I figured you HAD tried them, and I'm truly bummed for you. and Karla too. But they'll take on unsuspecting people who haven't given the safer alternatives a try under the pretense that neuros know better. and they're WILL be accidents and they'll say "whoops sorry". It wasn't all that long ago when medicine was recommending the unanaesthetized ice pick between the eyes for schizophrenia, when chemicals can keep it safely at bay. I'm all for DBS as a last ditch effort. sad... we have to make tough CHoices. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Margi on May 19th, 2005, 9:47am I remember when this was first tried in Milan, Italy and Riccardo talking about this. I know there was a study and follow-up on the clusterheads that had this done and the success rate WAS really quite high. I'm sure OUCH Italy has more info on this over at their website. Riccardo - where ARE you, Mr. Garlic Kisser? We need your knowledge here!! |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Lizzie2 on May 19th, 2005, 9:48am Kev, I hear ya... I went to our neurosurgeon here who works in functional neurosurgery. He was trained by Dr. (Giancolo?) Barolat, who really is one of the top functional neurosurgeons in the world. He told me that they weren't comfortable with the procedure yet to try it, and he also said it would be my best hope. Sad irony. For one, they are waiting to come out with the MRI-compatible stimulator from medtronic...medtronic has vowed to come out with one in the next couple years. Those of us who require MRIs on a frequent basis can't have a regular stim. He told me I'd have to pay out of pocket for now - which I can't do. Overall, DBS sounds like eventually it'll be my last resort option... He told me to come back in 3-5 years. This is at Jefferson Hospital for Neuroscience which is connected to the Farber Neuroscience Institute (I think that's the right name?) It's a phenomenal place with lots of wonderful things being done, and they can do the occipital nerve stimulator and cortical stimulation, but they are not ready for the DBS there yet. Someday..... The doc here's name is Dr. Ashwini Sharan if you happen to want to have a consult with someone a little closer to home. Lizzie |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Bob P on May 19th, 2005, 9:51am If one were considering this, perhaps a less invasive option would be Dr. Dodick's occipital nerve stimulation implant. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Lizzie2 on May 19th, 2005, 9:54am There are two studies on this. Here's one: Quote:
|
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by rickyshot on May 19th, 2005, 11:23am Thank God I am episodic twice a year. If I were chronic and feeling like that all the time I would even vouch for a lobotomy. One serious question is this. The intense pain is bad enough but in between hits I a totally off and feeling like crap the whole time. And no meds help this . So for the patients who have success with this surgery does that mean total absence of all symptoms ie burning eyes, malaise, off balance etc.... |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by thomas on May 19th, 2005, 11:34am Yes there was quite a good report out of Italy about this procedure. I wouldn't be so quick to crucify neuro nurse. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Marc on May 19th, 2005, 7:40pm Quote:
I agree |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 19th, 2005, 8:16pm the line forms to the right fellas, no pushing or shoving. ;;D |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by alchemy on May 19th, 2005, 9:22pm I've been reffered to a surgeon. I hope this is not what they mean. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Gena on May 19th, 2005, 10:05pm on 05/19/05 at 21:22:05, alchemy wrote:
If it's your first surgical consult, they will probably discuss the pros and cons of the gamma knife procedure. thomas posting as Gena. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by alchemy on May 19th, 2005, 10:17pm whats the gamma knife procedure? |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by jokrs2 on May 19th, 2005, 10:52pm HBWR seeds $18.00 including shipping and now 6 weeks without pain or shadows. Much less than 50k and I don't have to copay for continuous tweeks or tune-ups which "ONLY LESSEN" symptoms. Whatever works for anyone is whatever they need, but at <$1.50 for a dose of LSA.... 8) Jonny, you make my day [smiley=laugh.gif] |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Mr. Happy on May 20th, 2005, 1:15am on 05/19/05 at 22:17:45, alchemy wrote:
Gamma knife radiosurgery. Gamma knife is a form of neurosurgery in which the trigeminal nerve (the nerve that causes cluster headache) is injured by a beam of radiation (see illustration). This can be done as an outpatient procedure and typically only takes several hours to complete. At present only a handful of medical institutions have gamma knife capabilities. Only one study has looked at the use of gamma knife in cluster and the results were promising. Four men and two women with cluster headache were treated. Five of the patients had chronic cluster headache (daily cluster headaches without periods of remission) and one had episodic cluster headache (daily attacks for weeks or months and then headache-free time for weeks or months). Four patients demonstrated excellent pain relief after gamma knife. Of the two remaining patients one had relief judged good and the other fair. Five of the six patients had relief within a few days to a week following gamma knife radiosurgery. None of the patients developed significant post-radiation side effects during a follow-up period of 8 to 14 months. What is attractive about this technique is that it can be done as an outpatient procedure, and it appears to have a low complication rate. No one yet knows, though, what the delayed complications of gamma knife might be, especially in young patients. Gamma knife is being utilized for cluster by headache centers across the country; reports suggest that it works initially but there are high relapse rates (return of cluster pain). More studies are necessary to determine if this treatment strategy is indeed useful in cluster headache. (http://www.achenet.org/articles/84.php) There's a bunch of probs not mentioned, but that's the 101 intro. RJ |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by neuronurse on May 20th, 2005, 1:17pm With trepidation I will respond to those who are open to hearing more about this procedure. For those of you who are repelled at the thought of brain surgery for CH, then skip this. Also if you are still receiving benefit from whatever method - then surgery is NOT for you. This is only for those who have exhausted every other option. We would never offer surgery if medications still worked and you still have some quality of life. I just spoke with my CH patient who is about 8 months out from this surgery and he is still thrilled with the results. He will sign-on soon to tell his story. (No current computer access.) The success of this surgery is totally dependent on implanting the lead in the right place. This depends on the skill of the surgeon, the equipment they use, etc. Programming is not hard if the lead is in the right place. The final outcome, though, depends on the final lead location within the lateral hypothalamus. Sort of like real estate. Location, location, location. If it is in the right place, then benefit should occur. Worst case is to reposition it - but that would not be taken lightly, but may be necessary in about 1% of cases, and yes this means another surgery. (remember, not for the faint hearted.) As far as risks, I mentioned these previously, which is true for any DBS surgery. That statistic is sound. Those who are younger, 40's, 50's 60's, who are otherwise healthy fair better, but we have operated on 70- 80 yr olds - for other diagnoses with good success. AS far as VA is concerned, no one would ever force you to have this procedure. You really have to 'wanna!' You (veterans) are fortuante to have access to this if you so desired. But remember, you can call the shots! OUtside of our region, very experienced functional neurosurgeons have not yet started this procedure, thus the availabilty presently is limited. I am aware that in Tennessee the Vanderbuilt Univ. surgeon is interested in doing this, but, has not yet started. It is a very new location in the brain to be implanted, (but not a new procedure!) and others in Europe have tried different nuclei implants for obesity! One never knows. Remember, taking pills derived from fungus sounds gross. But that is where pennicillin started! |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 20th, 2005, 1:29pm thanks neuronurse, we do appreciate your input. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Bob P on May 20th, 2005, 1:37pm Quote:
Actually, eating fungus is fairly well tolerated around here. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 20th, 2005, 1:41pm Yes, but look back on the lobotomy..... oops! |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by seasonalboomer on May 20th, 2005, 1:51pm congratulations posters. what an excellent balance of healthy skepticism with intrepid curiousity! For those that think that there's often too much of an overreaction to things on some of these threads, you see here that there was an ample mix and that nueronurse was able to get her points made and those with interest were able to note appropriately. Thanks for not running off nursey at the first sign of flak! Interesting (albeit scary) info. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Big Dan on May 20th, 2005, 9:14pm on 05/19/05 at 11:34:46, thomas wrote:
Yeah, but seeing how this appears to be her second post: Quote:
I'll be fine, thanks. -Big Dan |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kcopelin on May 20th, 2005, 9:50pm Dear Neuronurse, I am sorry if I seemed rude. My head hurts. I have been a guinea piglet for both active duty military docs and VA docs re: cluster headaches-took them 5 years to correctly diagnose me and then another 5 years to squabble with one another about it. (Can't be CH she's not a middle-aged man with rough complextion who drinks and smopkes heavily) Have you any idea how hard it was just to get friggin O2! Took 2 years-no kidding-and I still had to see a civilian neuro and pay out of pocket. So... I am somewhat skeptical. Started in 1981-sugery is the only thing I haven't tried. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Jonny on May 21st, 2005, 3:23pm on 05/20/05 at 21:14:48, Big Dan wrote:
Quote:
I wonder if they would wave the fee to CH'ers that have no insurance....I mean..if you come looking for us you must REALLY want to help, Im sure its not ALL about the money ;;D |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kcopelin on May 21st, 2005, 6:09pm Jonny since I'm a veteran bet i could get it free. hmm. dang, i'd do it if i was sure that i'm done with my brain. kathy |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Cinder on May 23rd, 2005, 11:19am I've been cronic for 5 years now and have tried so many differnt combination of drugs. Right now Nerve Blocks, O2, Prednizone, Neurontin, Topamax, Celebrex, Imitrex, and also Inderal for Tremors. And alsways shadows hanging around. I would defintly try something like this without hesitation. Cause I am so tired, and just want to be right again. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by hdbngr on May 23rd, 2005, 12:26pm on 05/20/05 at 21:50:00, kcopelin wrote:
Amen, sister. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 23rd, 2005, 1:43pm on 05/23/05 at 11:19:53, Cinder wrote:
prey. sorry |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kissmyglass on May 23rd, 2005, 1:47pm Not prey Vig, just a desperate chronic clusterhead in search of some reliefe who deserves a better response than... "prey" Kev |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by kissmyglass on May 23rd, 2005, 1:51pm on 05/20/05 at 21:14:48, Big Dan wrote:
Somebidy asked her the cost. OKAY??????? Kev |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 23rd, 2005, 2:03pm on 05/23/05 at 13:47:47, kissmyglass wrote:
I'm guessing this person has NOT tried the alternatives as you have. I DO think this is how we protect our own from unscrupulous predators. The doctors have let me down and the last thing I'll do is trust them when they say THIS is the next logical choice. It's not. I didn't mean it lightly... I didn't mean it as a joke. I feel badly for them but to play into a doctor's hand with a new hammer looking for 'nails'? I don't think it's right. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Bionic_Daddy on May 23rd, 2005, 11:50pm To All, I underwent the DBS & glad I did. My PAIN- BEAST is almost completely gone. I suffered daily/nightly for 5 LONG YEARS! Tried every med. known, Sterotatic surgery, Laser Radiation ( Gamma, this procedure made the BEAST WORSE! ) & finally the DBS. I don't think I would of make it another 5 years. This surgery does cost $$, but making life liveable again is worth it. Neuronurse has giving me a great deal of information on my programming. Yes this procedure is NASTY, but it has almost stopped the BEAST & mainly my PPPAAIIINNN. Thank You Neuronurse. Bionic Daddy |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by unsolved1 on May 24th, 2005, 5:23am I've been cHrOnIc for nearly 5 years. I've tried all the meds, RFG, and i've had an Occipital nerve stimulator implant at MHNI. Right now I'm catching a bit of a break with Histamine treatments (thank god). It won't last long and it doesn't work every time. I am definately a candidate for DBS as it has been discussed several times with more than one neuro. Unsolved |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by vig on May 24th, 2005, 7:16am on 05/23/05 at 23:50:04, Bionic_Daddy wrote:
Hey BD Almost? "Tried every med. known, " Please list them: (I'm betting it's not every med known) We're happy for you! |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by nani on May 24th, 2005, 9:16am on 05/23/05 at 11:19:53, Cinder wrote:
Cinder, I understand how you feel. :'( Please take a moment and look at the Medications board at "Whats all the kudzuuuu about..." and "Chronic pain gone with LSA" threads. These are 2 new legal, alternative treatments that seem pretty promising. IMHO, they're worth a try. Pain free wishes, nani |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by Cinder on May 24th, 2005, 9:23am Thanks nani |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by hdido on May 24th, 2005, 5:36pm I've had personal communications with Dr. Bussone in Milan and the man, in my opinion, is not to be trusted with regards to this procedure. He claims almost 100% success but there have been no current publications about those who have had the surgery. Zairia from OUCH-Italia knows 8 people who have had the DBS operation done in Milan and it has not worked in a single case. By the way, the one death that occurred was in Liege, Belgium about 1 1/2 years ago; they still haven't figured out if the patient died (bled to death) due to a mistake by the surgeon or due to some condition that she had that they didn't know about'and the operation is not being done there for CH anymore. A less invasive procedure, ONSI, is being done in London, England but that has also proved unsuccessful except in one case; amazingly, the surgeon who performs the operation isn't sure how many he has done-it is either 5 or 10 and in a communication with him he said that he doesn't recommend the procedure as it is still way too experimental. One area of concern with DBS and ONSI is the problem of an infection developing down the road-both opertions have only been done for CH for a couple of years. I am intractably chronic, nothing works, but I would rather deal with the pain than let someone mess around with my brain-unlike balls, I only have one brain (though some doubt that, but I have pictures to prove it). I hope to get some reliable information on DBS from the Univesity of Kiel, Germany in the next few weeks and will pass it on. |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by cazman on Jun 3rd, 2005, 9:43pm hummm it seems to me we sit here and complain why dont the doctors help us why it there not enough research being done then i see comments like our good friend john has made its seems to me hes got a hair across his ass , there has to be lab rats to try new stuff on there will be failures but if all that dont happen how will they ever finf the cure for this personally i wanna thank anyone with legit idear on how to beat this crazy or not , john chill out stop being so negitive its not helpful at all to anyone . |
||||
|
Title: Re: Deep Brain Implant to treat cluster ha's Post by burnt-toast on Jun 5th, 2005, 1:32am I've basically run out of reasonable options. The meds. and doses are getting really dangerous, I've gone through 3 neurologists and all each can offer is even more dangerous drugs that are not helping my headaches. I am really uncomfortable with the side affects both short and long term of these meds. which historically were not developed to treat clusters. After 10 years of chronic nightly pain I am ready for valid alternatives. This may be one and it may not, but I have been discussing it with my neurologist. I believe it is called Hypothalamioc Stimulation, I can't say I am comfortable with it yet but will post any info. that I come across. |
||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |