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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Deep Brain Stimulation in the US-UPDATED
        
(Message started by: unsolved1 on May 9^th, 2006, 8:04pm)

Title: Deep Brain Stimulation in the US-UPDATED
Post by unsolved1 on May 9^th, 2006, 8:04pm

Just thought I'd pass on this info. I just recieved an e-mail from Dr. Todd Rozen from MHNI. He says ... "reportedly the
Mayo Clinic In Rochester, Minnesota has placed two hypothalamic stimulators."
He is not sure of the outcomes. Dr. David Black from the Mayo clinic is the neurologist handling the two cases. I'm going to contact him and ask for more information.

UNsolved

Title: Re: Deep Brain Stimulation in the US
Post by Karla on May 9^th, 2006, 8:55pm

That sounds very interesting to me. I have been interested in that for a long time. Please post or pm me the info you get. This is good news!

Title: Re: Deep Brain Stimulation in the US
Post by unsolved1 on May 10^th, 2006, 11:50am

I just heard from Dr. Black.

Quote:

we have placed two deep brain stimulators for chronic cluster headache--it has been helpful though has not resolved the attacks. Thus far, we are only considering strictly one-sided sufferers as candidates

Doesn't sound too promising :-/

Unsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by Katherinecm on May 14^th, 2006, 8:28pm

Can someone tell me more about this? I have a cousin at medical school there who offered to try & get me into this, but she didn't know much about it and it seemed dangerous to me. What is it? What is the theory on how it works?

Thanks!
Katy

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by unsolved1 on May 14^th, 2006, 8:47pm

Your cousin tried to get you into this? Are you an intractable chronic cluster headache sufferer that is strictly unilateral? That's what they're looking for as candidates.

It has been done in Italy several times now according to Massimo Leone, MD.
Read what he said Here -->http://www.neurologyreviews.com/apr05/DBSClusterHeadache.html

UNsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by Katherinecm on May 14^th, 2006, 10:10pm

Yes, I am... does that mean I should try to get into it? HELP!!!

Katy

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by unsolved1 on May 14^th, 2006, 10:44pm

Sorry about your situation. I know how you feel. I don't think anyone should tell you weather or not you should do this. It has to be a personal decision. It would have to depend on how much clusters and the pain is affecting your life. You would have to find out as much as possible about the procedure and weigh the risks and benefits. Then, if you're still interested in more info, possibly contact the doctors that are doing this.

Dr. Todd Rozen - MHNI - www.mhni.com
Dr. David Black - Mayo Clinic -http://www.mayoclinic.org/

If you have any problems, IM me and I'll give you their e-mail addresses.

UNsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by Katherinecm on May 14^th, 2006, 11:07pm

The problem I've had with the idea of surgery is that it seems so dangerous. At the same time, I can't work, I can't go out with friends, I'm so drugged all the time I barely function. I guess I'm just coming to terms with how long-term this is going to be. Until I started researching things on my own I didn't realize that even if you find a treatment that works it may stop working in a couple of months or years. I mean, I'd heard that, but somehow it didn't sink in until recently. I must be going through the stages of grief or something.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by CHTom on May 15^th, 2006, 4:41pm

I had my DBS surgery done in Kiel, Germany last September; last week, at Thomas Jefferson Hospital in Philadelphia I had my voltage increased to 5 volts, but thus far my pain has remained the same as it was before the surgery, so I will have to get the voltage increased to perhaps 6 volts shortly to see what happens. I've spoken with Dr. Leone and in a recently published article he claims almost a 100% success rate (sucesss meaning no more pain) with an average of, if I remember correctly, 4.28 volts; it appears to take anywhere between 1 and 2 years for the pain to go away or be minimalized, though progress should be noticed before then. Perhaps my CH is worse than the CH of the 40 or so of Dr. Leone's patients, thus the lack of progress so far. I'll keep having the voltage increased until, I hope, the pain starts decreasing. There is some controversy amongst European neurologists about the claims made by Dr. Leone, but be that as it may there have been some genuine successes. The surgery is not very dangerous-a piece of skull over the hypothalamus is removed and a device is attached to a part of the hypothalamus, secured and then wires are run down through the side of the head and into a battery which is implanted into the chest; one can be out of bed and walking around the next day. The battery is charged by a device that looks like a hand held PC; the charger is surrounded by a rubber cup like device and the doctor puts in the volts and then you wait a few weeks to see what happens. I continue to have hope that it will work. The operation is not covered by US health insurance companies as it is considered experimental-the cost is about $55,000 in Germany, which includes a one month stay in the hospital. Follow up visits are every 2 or 3 months, usually lasting a week. There have been about 50 operations done in Europe-me in Germany, about 4 in Belgium (where success claims are the same as in Italy) and the rest in Italy. The operation is sort of a last resort and about a week of physical and psychological tests are done and reviewed before the docs decide whether or not one is a suitable candidate. It is not an easy decision for some, but for me it was as there were no other options left for me except a bullet in the brain. I do have somewhat more pain free periods than before the operation, but the pain is still there most of the day and night, usually going up to 10 on the kip scale-those of you who are chronic know how miserable life can be. I think that I made the correct decision, for me, to have the operation and have support from the docs in Germamy and my neurologist and anesthesiologist (pain clinic doc) here. For me, the hardest part of having the operation was not the fear of perhaps dying during the surgery, but that it would not work. Check out the sites supplied by "unsigned 1" and the site given for Dr. Leone. I am more than happy and willing to discuss my experience with anyone who wants to do so and supply information and contact points in Germany. I know that sometimes I act like an ass in some of my posts here, but I am serious about helping anyone who is considering DBS surgery.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by LeLimey on May 15^th, 2006, 5:07pm

Quote:

19 New Message Board Archives / Medications, Treatments, Therapies 2005 / DBS Implant Update Dec 1st, 2005, 6:23am
Started by CHTom | Post by CHTom
Last Thursday I had the voltage increased in my Medtronic Soletra 7426 implant increased by my neurologist from 2.5 volts to 3.0 volts. With the 2.5 volt charge, I did have a total of 6 pain free days beginning about 3 weeks after my discharge from the hospital following the implant, but then the pain free days stopped and I was back having daily, severe pains, usually between 6 and 10 on the Kip scale, with the occassional 2 or 3 hours of pain free times several days a week. My neurologist decided that I needed an increase and it will take about 2-3 weeks to see if the increased voltage is effective. After a voltage increase, the pain is very severe (feels like my eyeball is going to explode), but this time I had to return to work only 3 days after the most recent increase-OUCH (no pun intended)! The maximum amount of volts that can be given is 6, but I hope that I do not have to go so far. I have a follow up visit in February and in the meantime continue see my local neurologist weekly and am still taking Dilaudid and the Fentanyl lollipops, unfortunately on a daily basis; they reduce the pain somewhat, though I hate taking them due to the side effects (mostly constipation-OUCH again!). I'll keep the membership informed on my progress. I'd like to get some positive vibes sent my way as I need all of the support that I can get. Thanks.

Quote:

15 New Message Board Archives / 2005 Cluster Headache Specific Posts / Re: Can you go from EPISODIC to CHRONIC/ Dec 9th, 2005, 7:00am
Started by Tim_T | Post by CHTom
Unfortunately, you can go from epidsodic to chronic, though I sincerely hope that that is not what is happening to you. I had my first attact in 1980, then nothing until 1988 and after that the frequency of attacks increased from 1 a year, lasting 2-4 weeks, to twice a year, then 3x, then 4x, etc. until 1995 when I got hit in September and did not have a break until a spontaneous, one year remission from Feb. 2001 to April 2002 (no one knows why these remissions occur and sometimes they can last more than a year or one can return to episodic or chronic again). My April 2002 attack was the return of my chronic phase again and the longest that I have been pain free since then was 3 days (after undergoing DBS implant surgery in September of this year); the pain returned after another 2 day pain free period. Had the voltage in my DBS device increased from 2.5 to 3 volts a couple of weeks ago and had a 2 1/2 day pain free period last week, now back to chronic, usually hitting 10 on the pain scale (mornings tend to be pain free for a few hours; driving will always set off an attack and bright lights and working on the computer at work make things worse. I will usually get a 2-3 hours relatively pain free period during some days, but then rapidly return to a 8-10 level attack lasting until I go to bed-take Dilaudid, Fentanyl and sometimes sleep meds so that I can get some rest). We chronics are a rather exclusive club and I willl vote that you not be allowed to become a member-really, the dues you have to pay are not worth the "benefits". I sincerely hope that you are just having an extra long episodic attack and that the pain will leave soon. I read that you have been suffering for 30 years; I don't know your age, but I have read and been told that as one ages the frequency of attacks decreases and that chronics can return to being episodic and that episodics can become pain free, my wish for you. I am in my mid 50's and things have not gotten better, despite increasing age and the DBS surgery (going back t the hospital in January to have the voltage jacked up again, unless the damn pain decreases-right!). Perhaps if I live as long as Noah (900 years, I think), I'll return to being episodic. Good luck, my friend and, once again, I sincerely hope that you are just having an extended episode of pain that will vanish soon and your life can get back to normal. PFDANs!

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by LeLimey on May 15^th, 2006, 5:10pm

Quote:

14 New Message Board Archives / Medications, Treatments, Therapies 2005 / DBS Surgery Follow-Up Dec 27th, 2005, 8:42am
Started by CHTom | Post by CHTom
I've been pain free since last Thursday-had DBS surgery in September, voltage increase from 2.5-3v in late November-this could be the start of something big

Quote:

12 Cluster Headache Help and Support / Cluster Headache Specific / Re: occipatal stimulator for trigeminal nerve Jan 10th, 2006, 5:53am
Started by jacks920 | Post by CHTom
Had DBS surgery in Sept., battery charged with 2.5 volts, no effect; went back in in Nov., charged with 3 volts, now have 2-5 pain free days a week; going back in this month to have voltage increased to 4volts-we'll see what happens, but I am positive

Quote:

4 Cluster Headache Help and Support / Medications, Treatments, Therapies / Re: gamma knife Mar 9th, 2006, 8:42am
Started by fireball | on Mar 9th, 2006, 1:48am, CHTom wrote: Was the implant device the Medtronic Soletra 7426? That is the device that I have implanted on my hypothalamus in September 2005. We still haven't found the correct voltage to significantly reduce the attacks-up to 4.5v now. What voltage are you getting?

Quote:

3 Cluster Headache Help and Support / Cluster Headache Specific / Re: Chronics pain free? Apr 9th, 2006, 1:37am
Started by MJ | Post by CHTom
Chronic since 1996 with a one-year break from 2001-2002, then chronic again since then with no more than a couple of pain free hours every now and then. I did have 5 pain free days after my DBS operation last year, but that was due to the trauma of the surgery.

Quote:

1 Cluster Headache Help and Support / Medications, Treatments, Therapies / Re: Deep Brain Stimulation in the US-UPDATED Today at 9:41pm
Started by unsolved1 | Post by CHTom
I had my DBS surgery done in Kiel, Germany last September; last week, at Thomas Jefferson Hospital in Philadelphia I had my voltage increased to 5 volts, but thus far my pain has remained the same as it was before the surgery, so I will have to get the voltage increased to perhaps 6 volts shortly to see what happens. I've spoken with Dr. Leone and in a recently published article he claims almost a 100% success rate (sucesss meaning no more pain) with an average of, if I remember correctly, 4.28 volts; it appears to take anywhere between 1 and 2 years for the pain to go away or be minimalized, though progress should be noticed before then. Perhaps my CH is worse than the CH of the 40 or so of Dr. Leone's patients, thus the lack of progress so far. I'll keep having the voltage increased until, I hope, the pain starts decreasing. There is some controversy amongst European neurologists about the claims made by Dr. Leone, but be that as it may there have been some genuine successes. The surgery is not very dangerous-a piece of skull over the hypothalamus is removed and a device is attached to a part of the hypothalamus, secured and then wires are run down through the side of the head and into a battery which is implanted into the chest; one can be out of bed and walking around the next day. The battery is charged by a device that looks like a hand held PC; the charger is surrounded by a rubber cup like device and the doctor puts in the volts and then you wait a few weeks to see what happens. I continue to have hope that it will work. The operation is not covered by US health insurance companies as it is considered experimental-the cost is about $55,000 in Germany, which includes a one month stay in the hospital. Follow up visits are every 2 or 3 months, usually lasting a week. There have been about 50 operations done in Europe-me in Germany, about 4 in Belgium (where success claims are the same as in Italy) and the rest in Italy. The operation is sort of a last resort and about a week of physical and psychological tests are done and reviewed before the docs decide whether or not one is a suitable candidate. It is not an easy decision for some, but for me it was as there were no other options left for me except a bullet in the brain. I do have somewhat more pain free periods than before the operation, but the pain is still there most of the day and night, usually going up to 10 on the kip scale-those of you who are chronic know how miserable life can be. I think that I made the correct decision, for me, to have the operation and have support from the docs in Germamy and my neurologist and anesthesiologist (pain clinic doc) here. For me, the hardest part of having the operation was not the fear of perhaps dying during the surgery, but that it would not work. Check out the sites supplied by "unsigned 1" and the site given for Dr. Leone. I am more than happy and willing to discuss my experience with anyone who wants to do so and supply information and contact points in Germany. I know that sometimes I act like an ass in some of my posts here, but I am serious about helping anyone who is considering DBS surgery.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by LeLimey on May 15^th, 2006, 5:13pm

John, all I can see is (sadly) the fact that every few weeks you go back in, have the voltage ramped up and get at most a couple of PF days before CH is back as bad or worse than before. You've said the pain after the dose is dreadful. You're further up the voltage list than you ever wanted to go and you yourself said 6 is as far as they can go.. I'm truly sorry this isn't working for you but from everything you have posted to date it isn't.

Title: Re: Deep Brain Stimulation in the US
Post by unsolved1 on May 15^th, 2006, 5:37pm

on 05/10/06 at 11:50:52, unsolved1 wrote:

Doesn't sound too promising :-/

UNsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by CHTom on May 16^th, 2006, 8:32am

on 05/15/06 at 17:13:21, LeLimey wrote:

Apparently the voltage can be increased to 8 volts and possibly higher, according to the latest information that I have received from the doctor in Philadelphia; realistically, if 8 volts doesn't kill the pain, or at least reduce it significantly, then, for me, there doesn't appear to be much sense in going higher because the higher the voltage the less time that the battery lasts (up to 8 volts it will last about 2 years, more than 8 volts and it would have to be replaced yearly or possibly even more frequently than that and I don't want to be the Everready Bunny). My case appears to be an exceptional one, resistant to treatment, but I don't want to discourage others from trying this treatment; as I previously wrote, for virtually all of the other chronic CH people who have had this operation, only about4.2 or so volts appears to be sufficient. It is a shame that American health insurance companies will not pay for the operation and I hope that more hospitals will offer the operation, free of charge, as part of some research project. Aside from the irrational belief that many Americans have against the "evil" of "socialized medicine", promoted vigorously by the American Medical Association and a certain political party, which will remain nameless but one of their members is our president, since chronic CH is such a rare disease (even many doctors don't really understand it), the monetary benefits and potential monetary benefits to doctors to perform the surgery, drug companies to try to develop drugs specifically for CH, etc., are minimal and I doubt that we will see much action being done to help CH sufferers (unless some famous person gets it, some celebrity or famous politician). Anyhow, if anyone wants more information about the operation or contact points, please send me a message. PFDANs.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by MJ on May 16^th, 2006, 1:44pm

Tom I find your experience fascinating. I have read your posts for a while now.

Do you get a zap or is it a constant application of voltage?

Is there a current rating? (VA.)

Where do you actually feel the current vs. where its placed?

Do you control the DBS as to when it functions?

I dont believe I would ever attempt the procedure but why couldnt this be done without an implant?

Lastly, I of course am episodic and to date have never had a cycle last over a few years so I know I will eventually get a break. How often and at what pain level were you being hit before you elected to have this done? Its a huge commitment.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by CHTom on May 17^th, 2006, 11:21am

on 05/16/06 at 13:44:48, MJ wrote:

Dear MJ,
The voltage application is halfway between a zap and a gradual application-it takes about a minute, I don't know how many amps there are-thanks for asking that and I will find out and let you know.
I don't feel the current at all, except when it is applied and at that time my eye feels as if it is expanding and the pain is worse than any CH pain that I've had. Over a period of a day or two that pain gradually decreases until it is gone. I don't control the implant, the battery just continuously supplies whatever voltage I have to the hypothalamus. The voltage cannot be supplied without the implant and battery; the theory behind the operation is that the continuous supply of electricity, when the correct amount is found, diverts the pain away from the eye and dumps it somewhere in the brain, which has no feeling. Some have suggested that the reason that the procedure is not working for me is because I don't have a brain, but I've seen a picture of it, so I know that that is not true (unless they showed me a picture of someone else's brain ::)). Prior to my surgery last September I would get hit with several 10 level attacks daily, lasting from 1-4 hours each; every once in awhile the pain would go away and I would have one or two periods without any pain during a week which usually lasted for about 1-2 hours, then I'd get hit again, usually moving very quickly back up to the 10 level. Things are pretty much the same now; on weekends and evenings, if I stay in bed, don't read and keep the lights low or out, I will sometimes have a relatively peaceful weekend or evening, but if I go out and drive, then relatively soon the pain will return aat a hgh level. I am afraid that the most that the operation will achieve is a small decrease in the amount of pain and the frequency and that I will still get almost as many attacks as I do now-a decrease from a 10 level attack to an 8 level really is not that much. When I had my one year spontaneous remission back in 2001-2002, I was so happy-I didn't have to worry about the sun shining in my eyes, I could read all that I wanted to, I could drive as far as I wanted to, it was like being reborn; when the pain returned in April of 2002 I was so depressed and started thinking again about suicide. I've now adjusted to the pain and living like a hermit after work and on weekends; I haven't offed myself because I keep hoping that eventually the operation will work, but the thought is always there, as it is with many othe chronics and I sure with episodic CHers. We do have a higher suicide rate than the general population, hence the nickname "suicide headaches" for CH sufferers. I'll keep hoping that things will work out and I'm fortunate to have a good anesthesiologist who is chief of a pain clinic and supplies me with meds to help keep the pain somewhat manageable, an excellent neurologist here in the US (both of these guys have been taking care of me since 1996) and my German doctor is also great and we keep in touch by phone and e-mail. Now if I could just find a woman who would be able to put up with me and my CH, life would be much more tolerable. I've just moved to a new location due to my work, so I'll think positive. Human companionship, whether it be girlfriend, wife or just a friend, makes things much more bearable.
I hope that I've answered your questions; sorry for writing so much-I like to write and it is theraputic for me and I hope helpful to you and anyone else who is considering DBS.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by zuesthedog on May 17^th, 2006, 1:15pm

I know with the stimulator I have implanted, I have a remote in which I can control the amperage and freq., with out a visit to the Neuro. My procedure was a very simple procedure done as a outpatient. Not brain surgery and it is realatively safe.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by CHTom on May 17^th, 2006, 2:08pm

on 05/17/06 at 13:15:17, zuesthedog wrote:

Do you have a device attached to the hypothalamus or is it placed under the skin over the hypothalamus? From your brief description, it sounds like you did not have a battery implanted in your chest (or other part of your body) but rather that the electricity comes from the remote control, something like a TENS unit. I, and am sure others, would like to hear more about the procedure that you had done and how effective it has been; do you turn on the power when you feel an attack coming on or is it left on all of the time? Do you have any wires or a contact coming out of your head upon which you place the control device? If not, what do you have to do to get the electricity to the hypothalamus? How many volts can you safely go to? Is the power supply in the external device? Are batteries used or do you recharge it by plugging it in a wall socket? Do you have chronic CH? Since it sounds as if a neurosurgeon did not implant the device, what kind of doctor is he/she? Prior to your having the device implanted, how long did you have CH and how strong was the pain you had (on the KIP Scale) and how long did each attack last-how have things changed now with regards to pain and how long have you had the device (and what is its name-who makes it, what model #, etc.). Where did you have the procedure done? Do you have to take any medications for pain or for other reasons due to the surgery? Excuse me for asking so many questions, but since what you have had done is something that I have not heard of, I am very interested to learn as much as possible about it. Thanks in advance.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by Jonny on May 17^th, 2006, 9:07pm

on 05/16/06 at 08:32:55, CHTom wrote:

for me, there doesn't appear to be much sense in going higher

Sure there does....like 220 volts ;;D

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by BobG on May 17^th, 2006, 9:51pm

Don't want to get off the subject of the implant but this sentence bothered me.

on 05/14/06 at 23:07:37, Katherinecm wrote:

I'm so drugged all the time I barely function.

What meds are you on that are making you feel "drugged"? Topomax? Pain killers?

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by unsolved1 on May 17^th, 2006, 10:03pm

Tom,

just thought I'd bring you up to speed with the information dog has already given us. Hope you don't mind

According to the Dog, He states that he has been diagnosed:

on 05/13/06 at 21:52:06, zuesthedog wrote:

Just chronic cluster since I was 13

So, he has "Just" chronic CH.

He also said he had an "ocipital" stim, but it "started to migrate" and came out of the back of his head. He didn't state if that was effective or not.
Then, after asking about Gamma Knife,
he had a "TRIGINAL" nerve stimulator placed

on 05/10/06 at 11:35:56, zuesthedog wrote:

The Dr. that did the procedure is George Mandybur and I believe he can be contacted at www.mayfieldclinic.com.

It was a Medtronics stimulator. He states that it worked great

on 05/03/06 at 11:24:52, zuesthedog wrote:

Its been three month since an attack.

I'm really glad that it helped him. The stimulator(s) may have left him a little jerky though ;)

I was so impressed that I contacted Dr. Mandybur today to ask more questions about the procedure. Although I haven't heard back from him personally yet, I did recieve a reply from Thomas V. Rosenberger (APR - Vice President, Communications from Mayfield Clinic & Spine Institute - The Neuroscience Institute) and he said I should get a reply from Dr. Mandybur within 24 hours. I'll let you all know if I find out anything. I'm very interested in learning more myself.

BTW dog, FYI, you've had these done ... you should at least learn to spell it. Two simple words ...It's "OcCipital" and "Trigeminal" ... but then again, who really cares ?! Pain free is beautiful no matter how you spell it! Goodluck and I wish you continued success!

UNsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by Katherinecm on May 18^th, 2006, 11:34am

on 05/17/06 at 21:51:07, BobG wrote:

What meds are you on that are making you feel "drugged"? Topomax? Pain killers?

Yes, Topamax is the main culprit. 600mg/day. Sometimes painkillers. I can usually figure out from the severity of burning in my eye prior to CH how severe the coming attack will be. If bad I take Lortab (hydrocodone) 7.5-500. I usually take one or two of them, but try to limit it (I think it may cause rebounds, and I don't think I'm capable of driving on it).

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by unsolved1 on May 18^th, 2006, 4:17pm

Incase anyone is wondering, I did get a response from Dr. George Mandybur.

He really didn't answer any of my questions at all. His response was as follows:

"Yes I do these procedures and some are successful. May variables play in success including degree, type and location of pain.
I would suggest that you come and see me and we maybe able to discuss more accurately what your needs are and what maybe done for you.
Please call my office at 513-475-7252 for information on scheduling an appointment to see me"

I'm not going to make an appointment, go all the way to BFE and spend tons of cash just to talk about it. That's why I e-mailed him. Very disappointing that I could not get more information than this. The reply wasn't much more than an 'auto-reply'.
If you check out their website, under "Cluster Headache Results", it's not a very pretty picture at all. Most of those procedures mentioned would most likely cause permanent facial nerve damage / paralysis without promising any real results. See http://www.mayfieldclinic.com/PE-CompFP.htm#

No stimulation procedures for cluster headaches have been published there yet and I could not get him to comment about any procedures or results for the treatment of cluster headache.

I was sure hoping for a more detailed, personal response to my e-mail. :-/
UNsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by seasonalboomer on May 18^th, 2006, 4:26pm

I do find that I read what I'm looking to read. In this case, this section stuck out for me as odd:

"In cluster headache, pain can be controlled by surgery to either the trigeminal system or nervus intermedius-superficial petrosal-sphenopalatine system. With both approaches, the pain is rarely cured."

And, so the point of the surgery would have been...?

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by unsolved1 on May 18^th, 2006, 4:46pm

That's just one of them boomer. They used the word 'disappointing' more than once.

Other phrases include:
'only transient relief'
'require further investigation'
'results have not been reported'

Seems to be a pattern

UNsolved

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by LeLimey on May 18^th, 2006, 5:50pm

Thanks for checking it out unsolved, its quite scary how evasive he seems to be :-/

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by zuesthedog on May 18^th, 2006, 6:10pm

Unsolved, First of all I ,m not real comp. litterate so Quoting above entries and my spelling is anything but great, but I do the best I can. Anyway I am really dissappointed with the response you got from Dr. Mandybur. He was one of the most personable ,friendly Dr. I have ever dealt with. Maybe you caught him on a bad day. As far as past history on this procedure. I believe I am the first and only one to have this done. As I stated before it working great for me. I took a chance having this done, but it was better than the other procedures which you pointed out leaves your face paralysed ?? . Its going to take other people to do it to be able to develope a track record.If anyone else attempts to contact him I would suggest using the phone over email, I believe you will get better answeres. Well keep up the good fight.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by MJ on May 19^th, 2006, 3:38am

on 05/17/06 at 11:21:23, CHTom wrote:

Prior to my surgery last September I would get hit with several 10 level attacks daily, lasting from 1-4 hours each; every once in awhile the pain would go away and I would have one or two periods without any pain during a week which usually lasted for about 1-2 hours, then I'd get hit again, usually moving very quickly back up to the 10 level. Things are pretty much the same now; on weekends and evenings, if I stay in bed, don't read and keep the lights low or out, I will sometimes have a relatively peaceful weekend or evening, but if I go out and drive, then relatively soon the pain will return aat a hgh level.

When I had my one year spontaneous remission back in 2001-2002, I was so happy-I didn't have to worry about the sun shining in my eyes, I could read all that I wanted to, I could drive as far as I wanted to, it was like being reborn; when the pain returned in April of 2002 I was so depressed

Now if I could just find a woman who would be able to put up with me and my CH, life would be much more tolerable. I've just moved to a new location due to my work, so I'll think positive. Human companionship, whether it be girlfriend, wife or just a friend, makes things much more bearable.
I hope that I've answered your questions;
writing is theraputic for me and I hope helpful to you and anyone else who is considering DBS.

Thanks Tom you did answer my questions.

As one who suffers pretty good in cycle I can understand why you elected to have the implant.

I was prompted to read about a thousand pages on the DBS method.
Its amazing the variation in studies and reports on line.
All claim this an area of potential for CH. While inserting disclaimers of one sort or another at the same time.

Those that perform the surgeries for the most part claim very high success rates. Yet their data seems to only show history for 2 yrs or less.
Those that do follow ups claim very low success and their data shows more time.

I understand this procedure has not yet been widely used for CH and is fairly new and historical data is minimal.

Even among the insurance co's the reports vary a lot, some allow and even suggest it while others indicate its no good or unproven.

Some of the successes for other ailments (parkinsons, etc..) using the deep brain stimulators sound pretty promising though.

One interesting point that sticks in my mind from reading was somewhere i read of those that claimed success the pain levels were in the level 3-4 range of 10 on a pain scale prior to the DBS implant. (Insert your own assumptions here)

From what I read and for those of us with high level frequent pain I would go for the good woman even knowing that they can cause a constant pain and are not allways tolerable.

At what point do you decide the DBS is no longer worth the effort? For your sake I hope it starts to work soon.

I had been seriously considering having the nerve cut or removed during one of my previous 3 year cycles, allmost did it myself a few times. Glad I didnt though as the results sound similar to DBS.

Hang in there my friend your PF time will come again.

Title: Re: Deep Brain Stimulation in the US-UPDATED
Post by LeLimey on May 19^th, 2006, 4:18am

on 05/18/06 at 18:10:31, zuesthedog wrote:

If anyone else attempts to contact him I would suggest using the phone over email, I believe you will get better answeres. Well keep up the good fight.

If anyone who contacts the doctor gets better info over the phone than in writing I would suggest they run and not walk to just about anywhere else.
Frankly, if someone isn't prepared to put his claims in writing where they can be quoted then you have to question the validity of those claims.