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Topic: Questions about my DBS surgery... (Read 1502 times) |
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dbsworks4me
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Questions about my DBS surgery...
« on: Jun 1st, 2007, 3:52pm » |
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Questions from Annette
Hello again
Would you be able to share with us here your experience by telling us:
1- What was the selection criteria used at Loyola for DBS? I do not know what their selection criteria were. I do know that they studied my case extensively and decided I was a good candidate. I do not know who they may have consulted prior to this decision.
2- How did the doctors explain to you about the procedure?
I was told that a lead or wire with four electrodes on it would be placed in the posterior hypothalamus and they would run a wire from this point to a battery, or neurotransmitter that would be surgically placed in a ‘pocket’ of skin right under my collarbone. They said that the complications were negligible in that the immediate side effects would be surgically related and would resolve by themselves.
The side effects I had were: a few seizures the fourth day after the surgery, post op pain, balance problems, I couldn’t sleep well for a couple of weeks, amnesia from the medications.
3- What preparations were done prior to surgery? I was taken off the meds that were being used to keep the pain at a minimum. Those meds were: toridol and indomethacin. In hospital the day before the surgery I was given fentanyl by I.V. Then I had small areas of my head shaved so that small ‘targets’ could be placed for the MRI they did prior to the surgery.
(Post-op I was given fentanyl and morphine and something else, I don’t remember what, along with antibiotics.)
4- How does DBS work for CH? As was explained to you? This is as close as I can get to how I was told it would work: Mechanism of action: Currently, no clear explanation of the mechanism of action of DBS exists, although several hypotheses have been formulated. High-frequency stimulation may create a global hyper-polarization of the cell membrane, resulting in a loss of excitability. Alternatively, stimulation may jam signal flow out of an abnormally functioning structure. Finally, antedromic and orthodromic depolarization currents may modulate neuronal activity at sites distant from the stimulation target.
5- What meds had you try prior to the surgery? Too many to remember, really, but I will try: Oxygen, neurontin, amyltriptylene, lithium, depakote, imitrex, maxalt, relpax, zomig, indomethacin, stadol, toridol, dilaudid, lortab, topamax, and that stuff they use to ‘break’ headaches when I was in the hospital the fist time I was there. Heavy duty stuff, it made my heart go nuts.
6- Are you still on any meds now? No.
7- Did it work straight away or did they have to adjust things for a while? It worked immediately while in the O.R. when they woke me up and turned on the device I had instant relief. After the initial procedure, I went back for follow-up 9 days after the surgery and I was off all pain meds 3 days prior and drove my car home in a very bad thunderstorm with no problems at all. I am still amazed at that! The settings were adjusted and neurologically I was perfect. I have had the parameters adjusted many times since as my brain healed and as I increased my activity. The main affect of the adjustments was that I would have an initial reaction of my vision becoming very off and I would see double until my brain adjusted to it. This adjustment period would last anywhere from twenty minutes to an hour. Sometimes it would take hours to get it right and the gauge was whether the pain I experienced between visits was gone or not.
(see next post for the rest of the answers to questions)
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dbsworks4me
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Re: Questions about my DBS surgery, cont...
« Reply #1 on: Jun 1st, 2007, 3:55pm » |
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8- What are the side effects and which ones have you experienced? I answered this in question number two. I want to add that I experienced post-op pain due to the surgical procedure itself, not the headaches. There is a ‘burr hole cap’ that is placed over the pathway into my brain that closes this off while leaving room for the lead and wires to come out and the wires are run under my scalp on the right side of my head, down the back of my neck, down the front of my shoulder, and over the collar bone where it all connects into the battery or neurotransmitter. This all has had to heal and the scar tissue has had to form according to my activities and movements. I was told that some people have fractured their wires somehow, but this has not happened to me.
9-Is there any precautions you need to follow now? I have to be careful not to bump my head, of course, and have to be sure that the hairdresser is careful, and I can’t go through the airport security like I used to. I have to stay away from old refrigerators and microwaves; I have to be careful not to hang around the security devices at the exits and entrances to stores, and I can’t have deliberators or deep heat ultrasound devices used anywhere on my body. MRI exams must be done using precautions. Thus far, I have not had any problem with anything, and actually I just don’t think about it much except to be careful that I don’t just stand in those security things in stores, but I never would do that anyway. The only thing I am afraid of is to fall. I carry a card with my driver’s license that has the neurosurgeon’s emergency contact number and the information about the device, like the serial number, the date it was implanted. On the other side of the card is a notice in a lot of different languages explaining that I cannot go through the security machines at the airport, so they have to do a physical pat down and can’t even use the wand-thing, around the head or the battery on the chest. Most airports I have been in opt to forego the wand because the device is classified as a pacemaker, and they just do a physical search as well as x-raying my carry on bags. (You can go into a private area where no one can see you go through it.)
10- What was the risk of relapse that was explained to you? I was told that it may not work, but it has. I have experienced the same pain I had before over the months since I had the surgery, but not as intensely as it was before and the cycle would stop within a couple of hours. This was mainly in the period of a few months after the surgery while my brain and body had to adjust to the changes. Last week I got very ill with the flu or something and the pain came back gangbusters but passed within a couple of hours and has not reoccurred.
11- Is there any follow up post surgery? Adjustments to the device, neurological exams (of course) and that’s it. I have found out, and this is a big issue that needs to be addressed, that no doctor outside of my own doctors will treat me for anything as minor as a sinus infection because they say they don’t know my history and don’t know anything about the procedure. I was in Houston, TX a few months ago visiting family and I couldn’t get any doctor to see me, not even the neurologists in the medical center there.
12- Where are the electrodes placed? The posterior hypothalamus
Thank you very much for sharing the experience from a patient’s point of view, until we can get any official information on the clinical/professional side.
Annette
I am posting the answers to the above questions for use on this site only. I don’t want them to be used in any publication or anywhere else on the Internet without my permission please!
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Brew
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Re: Questions about my DBS surgery...
« Reply #2 on: Jun 1st, 2007, 4:08pm » |
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Then I wouldn't post the answers here if those are your wishes. Anybody can look here.
Anybody with internet access, that is.
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Always remember that you're unique, just like everyone else.
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UN solved
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Re: Questions about my DBS surgery...
« Reply #3 on: Jun 1st, 2007, 6:58pm » |
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Someone with a case of chronic clusters bad enough to warrant brain surgery...but they"re not known at CH.com ?? Where have you been at ? Sorry, just seems like you came out of nowhere with this .. but I hope it works for you anyways.
You said you still sometimes experience pain. That blows !! wondering how long ago was this done ?
MAYO criteria = Chronic clusters, strictly unilateral pain, refractory to meds, no other serious health problems. Last report from MAYO said first 2 procedures failed
Goodluck / PF Wishes
UNsolved
PS. If you really don't want this to be known to all, you shouldn't have posted it on the internet. It doesn't get much more public than this ! 
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dbsworks4me
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Re: Questions about my DBS surgery...
« Reply #4 on: Jun 2nd, 2007, 1:43pm » |
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on Jun 1st, 2007, 6:58pm, UN solved wrote:Someone with a case of chronic clusters bad enough to warrant brain surgery...but they"re not known at CH.com ?? Where have you been at ? Sorry, just seems like you came out of nowhere with this .. but I hope it works for you anyways.
You said you still sometimes experience pain. That blows !! wondering how long ago was this done ?
MAYO criteria = Chronic clusters, strictly unilateral pain, refractory to meds, no other serious health problems. Last report from MAYO said first 2 procedures failed
Goodluck / PF Wishes
UNsolved
PS. If you really don't want this to be known to all, you shouldn't have posted it on the internet. It doesn't get much more public than this !
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I had the surgery November 2, 2006, so it hasn't been that long.
I was upset that no one had said anything about the surgery from the medical powers-that-be, so I posted here so that my experience could let the most important people, those of us who suffer from these headaches, that there is a new treatment that is about to be approved by the FDA for cluster headaches and chronic paoxyxmal hemicrainia. I know how serious and debilitating the pain is and I know that people actually commit suicide over it, so I wanted to offer the same hope that helped me get through every day.
I know that this is the Internet, and I didn't think it would be private to post here, I just want the courtesy of being contacted if my information and story are going to be used in a formal publication so that I can be sure that I am not misquoted or taken out of context. I think that is reasonable, but it probably won't happen. But, no worries, I am just glad if what I went through has helped anyone to hang on.
I posted at fist in the 'getting to know ya' part of this message board. There is more info there about some things.
I did not know the Mayo clinic had two failures, the last I read was posted on their site on May 3, this year.
http://www.mayoclinic.org/news2007-rst/4044.html
If you have information regarding where I can find the report that the surgery failed, I would love to have it! 
I must say here that I am not pain free, I am still healing from the surgery and have had to go back for adjustments several times over the 7 months since surgery. The last adjustment was in March and I am due for one now. BTW I have spent far less time and inconvenience going in for outpatient adjustments than I did having my whole life stop because of the headaches...
For me, the surgery works and for that I am extremely grateful! 
I wish everyone well!
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dbsworks4me
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Re: Questions about my DBS surgery...
« Reply #5 on: Jun 2nd, 2007, 1:46pm » |
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on Jun 1st, 2007, 4:08pm, Brewcrew wrote:Then I wouldn't post the answers here if those are your wishes. Anybody can look here.
Anybody with internet access, that is. |
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Yes, I know... I just would like the courtesy of knowing about it if anyhting I say is used in a formal publication since I don't want to be misquoted or taken out of context. But, I know how it is, I can dream! You can't always get what you want! 
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UN solved
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Re: Questions about my DBS surgery...
« Reply #6 on: Jun 2nd, 2007, 3:13pm » |
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I was in touch with Dr. Black from Mayo around March of this year. The link and article you provided contradicts what he wrote to me. He said that it didn't help the patients .. but the article says differently. ?? WTF ?? Now I don't know what to believe. Could the article be wrong or did Dr. Black change his mind about the results ??
Hope it brings you long lasting relief
UNsolved
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dbsworks4me
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Re: Questions about my DBS surgery...
« Reply #7 on: Jun 8th, 2007, 2:45pm » |
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on Jun 2nd, 2007, 3:13pm, UN solved wrote:| I was in touch with Dr. Black from Mayo around March of this year. The link and article you provided contradicts what he wrote to me. He said that it didn't help the patients .. but the article says differently. ?? WTF ?? Now I don't know what to believe. Could the article be wrong or did Dr. Black change his mind about the results ??Unsolved |
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I wonder why Dr. Black changed his mind too... Doesn't make sense, man!
I have researched what I could about where the electrodes were placed in my case, the Mayo Clinic cases, the two failed Germany cases and the 16 successful Milan, Italy cases and I noticed that in the failed cases the electrodes were placed in different areas of the hypothalamus. My case and the 16 in Italy were placed in the same area, so I am thinking that this would make a big difference.
There is still so much to learn about the brain and I don't understand why doctors would have evidence of cases that worked but then change the placement of the electrodes... I am now even more grateful that the procedure worked for me. But I am saddened by the people who went through the surgery only to have it fail... I hope the international medical community start communicating! Jeez...
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