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Topic: DBS surgery worked for me, pt.1 (Read 1011 times) |
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dbsworks4me
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DBS surgery worked for me, pt.1
« on: May 22nd, 2007, 2:07pm » |
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Hi, I am 44 years old, female and have what has been determined to be intractable
cluster headaches, or chronic paroxysmal hemicrania. Apparently there are many
similarities and a lot of gray area that can muddle the diagnosis. Both headache
disorders affect the trigeminal nerves and involve the hypothalamus part of the
brain.
The headaches struck me out of nowhere in April 2005 and continued 24/7 for a
little over 21 months until I had the first deep brain stimulator implant ever done
for headaches on this continent.
The headaches felt like I had been shot in the right eye by a shotgun and that my
head had been blown off on that side. It also felt as if I had been whacked on the
back of the head by a baseball bat several times. Then, on top of that, it felt as
though an old, splintery broom handle was being stabbed into my head through my eye
and then twisted around, and then there was the red-hot poker thing. I had episode
after episode, my eye would tear up and run, my nasal passage swelled up and my nose
ran, my eye would droop and swell up. I walked around and tried to function like
that for well over a year before any doctor figured out what the problem probably
was.
I was told I had migraines at first, but that wasn't it, this headache syndrome is
sooooo much more painful than a migraine, I have had a few of them. I was also
diagnosed with SUNCT syndrome, but that was not the right fit either.
I have been to the ER nearly 20 times before the surgery and was hospitalized the
first time for 5 days as they tried to break the headache cycle, but nothing worked.
Every medicine and treatment available was tried and absolutely nothing worked, not
even Stadol.
I did not know that such pain was possible and it completely destroyed my life. I
was desperate and felt totally alone. I used to walk around in shock, I think, from
pain. I also just couldn't sit still, as I have seen described so often on this
message board. Other times I would just become so exhausted that I couldn't even
stand up anymore. And it is terrible that so many people around me just didn't get
it. I spent many a day and night on the floor hysterical from pain, but that only
made the pain worse. I lost friends, family members didn't understand and I lost my
partner.
(see my next post for the rest of the story)
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| « Last Edit: May 22nd, 2007, 9:57pm by dbsworks4me » |
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dbsworks4me
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Re: DBS surgery worked for me, pt.2
« Reply #1 on: May 22nd, 2007, 2:07pm » |
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I finally went to Loyola in Maywood, near Chicago, and I was fortunate to get in
touch with an amazing neurology team that pulled out all the stops for me and had
the first deep brain stimulator implant done in this country for cluster
headache/chronic paroxysmal hemicrania. I had the surgery last November and am
pretty much pain free.
The surgery has not been approved by the FDA yet and I don't know what the process
is for that. What bothers me is that there seems to be a stigma attached to the
surgery in that people think it is barbaric, too invasive, too experimental,
damaging, etc., and no one knows that I had so much relief from the pain and no
neurological damage or major side effects from the surgery. I am still having slight
memory problems and yet that is clearing up as time has gone by. The doctors at
Loyola are thrilled at the outcome, as am I.
The thing is that in the midst of all of the pain from the headaches and the
devastation it caused in my life, I felt very helpless and hopeless because nothing
was helping me and I had started to believe I would never be free of the pain and
would never feel 'normal' again. I had lost my life as I knew it and was incapable
of even working in the last 6 months before the surgery.
When I was approached by the neurology team to try this surgery it scared me at
first and my first reaction was that there was no way I would do it, but that didn't
last long because the pain and devastation in my life was so great that I knew I
couldn't go on much longer and I had lost hope, so I seriously considered the
surgery and learned all about the procedures that had been done in Europe and what
the actual surgery would entail.
When I finally decided to go for it, I felt huge relief and hope, even though I was
scared to have the procedure. As it turned out it was not so bad, it was so
incredibly successful and I feel like a walking miracle. What was unbelievable to me
was that on the operating table when they turned the device on, the pain left
immediately and surprised the heck out of me and thrilled the neurology team. It
seriously works! I was ecstatic and felt I had been pulled from a very dark, gloomy
and hopeless place.
The doctors at Loyola have told me that I have made history and that the procedure
I went through will make it possible for people with cluster headaches and any other
headaches in that group of headaches to have the procedure offered as a treatment
that actually works.
I am writing this so that maybe someone out there who is ready to blow their head
off will just hang on... If anyone has any questions for me I am very willing to do
my best to answer all. If there is anyone who wants to get in touch with my doctors
I will give you that information.
I am still struggling to get my life back together. I lost my home, my car and am
finding it difficult to recover from the devastation of the time the headaches took
from my life. One thing I almost forgot: I didn't have insurance when the headaches
started or to pay for the surgery, but the doctors at Loyola donated their time and
the manufacturer of the DBS system donated the equipment, so don't let insurance be
an issue in your getting any kind of treatment for the headaches. There ARE doctors
that do care very much about us and they DO have the power to move mountains.
I have talked to some neurologists who have had patients that have committed
suicide because of these headaches and if this post I am writing can stop just one
person from giving up or killing themselves, then everything I went through is most
definitely worth it. I did the surgery with all of you in mind, I really did and was
willing to be the 'guinea pig'. I would do it all again too...
Don't give up and don't let anyone treat you like crap... You are suffering and
deserve compassion... Demand appropriate care and get rid of anyone in your life who
isn't listening to you!
Kris
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BMoneeTheMoneeMan
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Re: DBS surgery worked for me, pt.1
« Reply #2 on: May 22nd, 2007, 3:52pm » |
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I bet you were so relieved to find out you do not have cluster headaches!!!
Whatever it was that was affecting you, I am glad the docs got it figured out and cured you.
B$
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Annette
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Re: DBS surgery worked for me, pt.1
« Reply #3 on: May 22nd, 2007, 5:10pm » |
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on May 22nd, 2007, 2:07pm, dbsworks4me wrote: Hi, I am 44 years old, female and have what has been determined to be intractable
cluster headaches, or chronic paroxysmal hemicrania. Apparently there are many
similarities and a lot of gray area that can muddle the diagnosis. Both headache
disorders affect the trigeminal nerves and involve the hippocampus part of the
brain.
......
(see my next post for the rest of the story) |
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This is in contrary to what the latest research results done by various neurologists around the world, including the renown Prof Goadsby, which found cluster headaches to be caused by an anatomically abnormal or malfunctioned hypothalamus.
The hippocampus is part of the limbic system and it mainly controls memory and emotion. The hypothalamus on the other hand is the major gland regulating homeostasis from body temperature to blood pressure to hormones to sleep cycles to the circadian rythm of the whole body. A lesion in the hypothalamus would explain the complexity of cluster headaches where so many facets of body functions are affected. The hypothalamus does communicate with the limbic system but to say that cluster headache is caused only by lesion in the hippocampus doesnt explain its complexity.
DBS as a treatment had been compared to ECT ( Electroconvulsive therapy ) for bipolar and major depression. For some it works wonder, for others it was a disaster. For a while it was very popular and psychiatrists would use it on almost everyone presented with difficult depression regardless whether that depression was caused by what condition. However, with time and experience, they are shying away from it now and will only use it for special cases after much careful consideration.
I am not saying DBS doesnt work for cluster headache, I am simply saying that in general doctors and specialists are still having problems making clear cut diagnosis for cluster headaches vs the other hundreds of similar types of headaches, and with DBS still in its infancy, it pays to really learn about your own condition and consider the surgery with serious thoughts and rethoughts prior to committing oneself to it.
Painfree wishes to all.
Annette
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George_J
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Re: DBS surgery worked for me, pt.1
« Reply #4 on: May 22nd, 2007, 6:01pm » |
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Certainly, if you were the first person to receive DBS for CH (or CPH, whichever it may be) on this continent and received such spectacular results, the doctors at Loyola would have published the results of the surgery somewhere. It's difficult to imagine that they would not.
If so, I would be interested in reading the published results.
If not, perhaps you would tell us who was on the surgical team and how to contact them--if anyone here were to seriously consider this option, I'm sure they'd like to know with whom they could discuss this. I do not see any reason why this could not be public knowledge.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
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Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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thebbz
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Re: DBS surgery worked for me, pt.1
« Reply #5 on: May 22nd, 2007, 9:00pm » |
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 When pigs fly. But that is just me.
I am happy though, that you found relief from your pain.
all the best
jb
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MR_FLOOR
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Re: DBS surgery worked for me, pt.1
« Reply #6 on: May 22nd, 2007, 9:26pm » |
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Winner,Winner,Chicken Dinner.If it works I'm all for it.But I agree with george why is it not public knowledge.Anyway Good Luck with your new found pain freeness.
Dave
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Jonny
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Re: DBS surgery worked for me, pt.1
« Reply #7 on: May 22nd, 2007, 10:00pm » |
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24/7?.......LOL!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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dbsworks4me
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Re: DBS surgery worked for me, pt.1 (to Annette)
« Reply #8 on: May 22nd, 2007, 10:04pm » |
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Hey, I used the wrong word when I wrote hippocampus, it was meant to say hypothalamus... Big whoops!  So sorry...
Also, my neurologist spoke with Dr. Goadsby regarding my procedure. I am very familiar with his amazing work.
For what it's worth, here are a couple of quotes from Dr. Goadsby that I found interesting and that my doctors pointed out to me:
These are quotes from Dr. Peter Goadsby, a world-renowned authority on headache disorders:
…The relationship between CPH and cluster headache is uncertain. The many clinical similarities between cluster headache and chronic paroxysmal hemicrania argue that the disorders should be broadly classified together. CPH is distinguished from cluster headache primarily by the shorter duration and higher frequency of headache attacks, by the female preponderance of the disorder and by the selective response to indomethacin. As cases have emerged (Price and Posner, 1978; Russell et al., 1978; Hochman, 1981; Rapoport et al., 1981) the clinical boundaries have become somewhat less distinct. It seems inappropriate at a biological level, and perhaps a clinical level, to insist on the absolute response to indomethacin as a diagnostic indicator. This would be better reduced to a strong indicator to the diagnosis until the biological basis for that response is better understood…
…There is little to suggest a fundamental neurobiological separation between CPH and cluster headache in regard to the final common pathways activated…
As far as my response to indomethacin, it was limited and finally useless.
Thanks for responding to my post!
Take care
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George_J
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Re: DBS surgery worked for me, pt.1
« Reply #9 on: May 22nd, 2007, 10:27pm » |
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Hm.
Goadsby notwithstanding, it would sure be nice if we knew some specifics about the procedure performed at Loyola. Like a published citation. And who was on the surgical team. Just so we have some information about it, you understand.
Unless that's you again, John. John's always been fond of DBS.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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dbsworks4me
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Re: DBS surgery worked for me, pt.1
« Reply #10 on: May 22nd, 2007, 10:34pm » |
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Thank you to those of you who have been kind, I appreciate it more than you know!
I want to clarify one point. The headaches I had before surgery were intractable, unable to be managed by any medication that was tried, and we tried everything, including oxygen. The headaches came in attacks or episodes and it was estimated that I had 200 or more within every 24 hour period. The doctors that treated me at Loyola are some of the best in the world, so they would know.
The attacks happened day and night and some lasted for minutes and others for much longer than that, then after one attack it would start over again. This went on for nearly 2 years and to me it seemed it was 24/7 because it hurt like hell and they just kept coming.
In addition, I, too, would like to see the paper on the surgery that I had, and I would like to see it made public knowledge. I have no control over this, so I posted my story here on this message board. I am only 6 months out from the surgery and apparently it takes time to put the data together to write the paper.
As soon as I get the exact contact information I will post it here so anyone who cares to can look into it.
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| « Last Edit: May 23rd, 2007, 12:59pm by dbsworks4me » |
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Annette
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Re: DBS surgery worked for me, pt.1
« Reply #11 on: May 22nd, 2007, 10:59pm » |
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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 ?
2- How did the doctors explain to you about the procedure?
3- What preparations were done prior to surgery?
4- How does DBS work for CH ? as was explained to you?
5- What meds had you try prior to the surgery?
6- Are you still on any meds now?
7- Did it work straight away or did they have to adjust things for a while?
8- What are the side effects and which ones have you experienced?
9- Is there any precautions you need to follow now?
10- What was the risk of relapse that was explained to you ?
11- Is there any follow up post surgery?
12- Where are the electrodes placed?
Thank you very much for sharing the experience from a patients point of view, until we can get any official information on the clinical/professional side.
Annette
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MR_FLOOR
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Re: DBS surgery worked for me, pt.1
« Reply #12 on: May 22nd, 2007, 11:03pm » |
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No offense.Nobody here is trying to be mean. I personally am glad you feel better . It's just that everybody is skeptical of procedures that are not documented .I think I speak for everybody when I say"Whatever you had done I'm glad you feel better,truly" Hope you stay pain free and good luck.
Dave
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BMoneeTheMoneeMan
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Re: DBS surgery worked for me, pt.1
« Reply #13 on: May 23rd, 2007, 12:09am » |
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on May 22nd, 2007, 2:07pm, dbsworks4me wrote:
The headaches struck me out of nowhere in April 2005 and continued 24/7 for a
little over 21 months |
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on May 22nd, 2007, 10:34pm, dbsworks4me wrote:| The headaches came in attacks or episodes and it was estimated that I had 200 or more within every 24 hour period. |
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Damn, you got clusters BAD. If I had 200 or more clusterheadaches per day, I would prolly get surgery too.
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Re: DBS surgery worked for me, pt.1
« Reply #14 on: May 23rd, 2007, 9:28pm » |
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Glad you found relief fro whatever it was.
Sincerely!
200 or more eliminates both Cluster Headache and Paroxysmal Hemicrania by IHS criteria.
SUNCT or Idiopathic stabbing Headache are closer to that description.
SUNCT is a difficult Mother F-er.
Idiopathic Stabbing HA is a bitch but responsive to Indomethacin (as is PH to nearly 100% according to the research)
I surely hope you remain PF.
good luck
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dbsworks4me
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Re: DBS surgery worked for me, pt.1
« Reply #15 on: May 24th, 2007, 11:05am » |
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Thanks everyone!
I am in the midst of getting all of my medical records so I can sort it all out and get all the details that some have asked for.
Since I posted here I have many questions myself after reading the responses. I am questioning where the heck I fit in all of this... All I can go by is what I was told about my condition and the surgery. My impression is that medical science has MUCH to learn about the brain and about headaches. The brain is kind of like the 'final frontier'.
After listening to the many opinions and theories from the neurology team at Loyola I believe they are actively looking for answers with open minds, are collecting data that will lead to effective treatment, and they do question and study what is known at this time in order to develop safe, effective treatment for these terrible headaches. They consider all of the possibilities and they do consider research that is being done all over the world. It is complicated, to say the least.
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MR_FLOOR
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Re: DBS surgery worked for me, pt.1
« Reply #16 on: May 25th, 2007, 3:58pm » |
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I personally looking forward to reading your next post.Again,Good luck.
Dave
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dbsworks4me
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Re: DBS surgery worked for me, pt.1
« Reply #17 on: May 25th, 2007, 11:06pm » |
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Thanks Dave and I like the photo of what I assume is you and your kids! 
I spoke with the neurosurgical nurse at Loyola today and she told me that the DBS procesure is in the process right now of approving the procedure for treatment of cluster headaches. To me, on this side of it, that is a VERY good thing!
Maureen, the surgical nurse at Loyola, told me that they did not have any time table as to when the procedure will be approved, but Mayo clinic has done a study with two patients with CH where they did DBS and that has gotten the attention of the FDA. According to the Mayo clinic study, they did the procefure on a man of 51 two years ago. I did not know this until today. The results are promising and the link to the article about it is"
http://www.mayoclinic.org/news2007-rst/4044.html
Apparently I am not the very first person with the brain implants for headaches in this country as I was told... I am curious now, even more. about how the medical community works... As I said, I only know what they tell me!
Regardless of who did what, when, my message is the same regarding having hope and the fact that doctors are, all over the world, looking for an effective treatment and/or cure. I am trying to just put the info out there... And I don't see anyone else that had the procedure writing about it, trying to get the word out.
I am thinking of posting the actual information regarding the doctors at Loyola, the parameters and details about my particular implant on the furum here having to do with treatments and such. I don't want it to get lost her on this particual forum.
But if you are reading this and want to contact Loyola, what I was told was that the neurosurgeon, Dr. Douglas Anderson, is not planning on doing any more DBS implants until the whole thing is approved by the FDA. The company that gave the equipment is Medtronic.
Their address is:
http://www.medtronic.com/
They are very hopeful regarding the FDA approval.
I will post, tomorrow, the details that Annette asked for a few posts ago, to the best of my ability, from my experience as a patient, in the forum about treatments and will copy it here as well.
Thank you again to those of you who have been kind and thank you to those of you who have written me privately, I have much to share about my experience with the procedure, recovery and what it is like now.
In case anyone reading this wants to know what the settings are on my DBS system right now the settings are:
Amplitude (V): 1.8
Pw or pulse wicth: 60
Rate (Hz): 145
I hope I will have information that will be of use to someone. That is why I am here.
To the guy who thought I may be 'John' and an affecianado of DBS, I assure you that I am not, I am all woman! 
Take care everyone and rest assured that there are effective treatments coming, even if they are not DBS!
Much love,
Kris
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Annette
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Re: DBS surgery worked for me, pt.1
« Reply #18 on: May 26th, 2007, 12:52am » |
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on May 25th, 2007, 11:06pm, dbsworks4me wrote:
I will post, tomorrow, the details that Annette asked for a few posts ago, to the best of my ability, from my experience as a patient, in the forum about treatments and will copy it here as well.
Kris
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Thank you very much Kris and I will deeply appreciate your infos to the questions that I asked earlier.
Most times when you go to see the specialists they explain to you the way they see it ie its effective or not, this is the common side effects etc but they can not tell you what is it like from a patients point of view.
Its invaluable to learn through the perspective of someone who had been at the receiving end.
Again thank you and hope the treatment works forever for you.
Annette
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Re: DBS surgery worked for me, pt.1
« Reply #19 on: May 26th, 2007, 10:40pm » |
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Very informative article thank you.
Dave
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dbsworks4me
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Re: DBS surgery worked for me, pt.1
« Reply #20 on: May 28th, 2007, 7:10pm » |
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Sorry for not posting the answers to the questions asked about my experience as a patient having the DBS implant. I have been sicker than I thought possible with either food poisoning or a really bad digestive system illness.  I am still weak and will get to the questions as soon as I can... I have so much I want to tell about my experience...
I'll be back soon!
Health to all,
Kris
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Annette
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Re: DBS surgery worked for me, pt.1
« Reply #21 on: May 28th, 2007, 8:05pm » |
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Sorry to hear you havent been feeling well. Hope you get better soon.
Take care
Annette
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dbsworks4me
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Re: Annete's questions about my DBS surgery
« Reply #22 on: May 31st, 2007, 10:33pm » |
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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: Annete's questions about my DBS surgery
« Reply #23 on: May 31st, 2007, 10:36pm » |
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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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| « Last Edit: Jun 1st, 2007, 3:54pm by dbsworks4me » |
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dbsworks4me
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Re: DBS, I would want to know...
« Reply #24 on: May 31st, 2007, 10:38pm » |
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Here’s a question I would want answered, among many other questions, if I were considering looking into this surgery: Did it hurt like hell? Yes and no. A different kind of pain than the headaches and I can say that it was never as bad as the headaches. The worst part was the pain of the bruising ad swelling from the incisions and the fact that they shaved half my head and didn’t tell me! They also didn’t tell me about the burr hole cap or the lump where the connector was installed. The connector goes between the wires that run from the back of my head to the electrodes in my brain and then connects that to the wires that run down my neck, shoulder, over the collar bone and plug right into the battery/neurotransmitter. Also, I have a device that I can use to check the status of the battery, whether the system is on and also so I can turn it off if I need to or turn it on if I need to. It has never gone off by itself and I only had to turn it iff once when the settings were wrong and I had to go get it adjusted the next day. This was within two weeks of surgery and hasn’t happened since then.
The worst part of it, remember that I was off all pain meds within days of going home after surgery, was that I am so vain about my hair and couldn’t really wear a hat comfortably. So I had very short hair for a while, but now it has grown in again, so no worries. I felt extreme happiness and hope after the surgery and am still amazed every day at how precious each moment is to me. I am still picking up the pieces of my former life but I certainly wouldn’t have been able to do that without the surgery!
If anyone has any further questions, I will be happy to answer them here.
Thanks!
Kris
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