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Topic: DBS? Got any info? (Read 604 times) |
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Gottaride
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DBS? Got any info?
« on: Nov 28th, 2007, 1:30am » |
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I am new to this site -- I'm not sure why I haven't found my way to you before, but I guess I thought I had things "under control" til now -- Yeah right! I have suffered from CHs since 1997, but wasn't diagnosed until 1999. My chs are chronic, usually 3 or 4 a day when in a cycle. Like many of you, I have been through most of the standard treatments -- sumatrips, calcium blockers, beta blockers, lithium, verapamil, topamax, oxygen therapy etc. In 2001 my neurologist put me on prednisone -- what a godsend! At 30-40 mg day, I am completely headache free. At less than 25 mg/day, I am in hell. So I stayed on the predisone. Six years later, it caught up to me. In the last year I have been diagnosed with diabetes and osteoporosis and am presently suffering from three vetetrbal compression fractures in my back and two fractured ribs, but no one can pinpoint a time when I actually hurt myself. The gist of it is that my bones are falling apart, which would be bad enough for the average joe, but my problem is that I make my living as a horse trainer and rider and have no been told by my orthos that I am forbidden from riding or handling horses for fear that, should I suffer any kind of actual trauma like a fall, I might end up in a wheelchair. So, in an effort to get off the prednisone, I underwent peripheral nerve surgery this past June at Georgetown Univ Hosp. They severed my lower occipital nerve and "decompressed" the greater occipital nerve. Unfortunately, the surgery did not work. Now, I am back on the prednisone to survive the short term, but am still destroying my body for the long term. I have been doing a ton of research on DBS and, for whatever reason, have it in my head that this sounds like the answer to a problem that has been completely unresponisve to anything else. Does anybody have any suggestions as to where to seek more info on DBS? I am scheduled for a work-up at Mayo Clinic in the next few weeks. Any other thoughts.
Thanks in advance to anyone who has the time and energy to read this and to care enough to respond. I hope that I will be a productive member of this group. Perhaps my experiences will help someone else as well.
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George_J
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Re: DBS? Got any info?
« Reply #1 on: Nov 28th, 2007, 1:56am » |
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Sounds as if the pred has really taken its toll on you. It can certainly do that. My mother has been on low doses of prednisone for years, to treat lupus. It's been a godsend to her, but the side effects have been quite serious.
Consider your next move carefully. I don't want to be in the position of dissing DBS surgery, but it's very much experimental in the treatment of CH, from everything I've seen.
You say that you've tried oxygen therapy, but have you done 10 to 15 liters per minute with a non-rebreather mask? The experience of many folks here has shown that it may be ineffective at lower flow rates and with the wrong sort of mask. I know it didn't work for me at 8 lpm with a rebreather mask. I intend to try it next cycle at the proper flow rate and with the proper mask.
Personally, I would exhaust all possibilities, including those with which I have reservations, before considering deep brain surgery--but that's just me. I've always erred on the side of conservative treatments, and that's not necessarily the path that everyone might follow.
Ultimately, you have to do what is right for you. If you are convinced that there is a reasonable chance of success with a reasonable risk, then perhaps you should look at it further.
As far as I'm concerned, the risks that I've seen connected with DBS surgery do not justify the questionable benefits. You may see it differently.
Welcome, and best wishes,
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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E-Double
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Re: DBS? Got any info?
« Reply #2 on: Nov 28th, 2007, 5:51am » |
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Welcome and sorry that you have gone through the wringer.
It sucks and you are not alone.
I'll try to dig up some statistics regarding the ephicacy of DBS but for now I'll speak loosely....
The research suggests that it is not the answer and has limited success..
This is not to say that it would not work.
It is to say that while everything we do or use has limited success for many, most treatments do not come with the immediate possibility of death or brain damage.
That is my opinion.
I would exhaust all other options first.
I would try "busting" read up on it.
I would try going in patient for DHE infusion (that nearly broke a 3+yr cycle for me and made life MUCH easier!)
You also stated that you get 3-4 attacks when in cycle but that that you are chronic.
This suggests that you are episodic?
OR do you mean that you have high and low periods throughout the years since 1997?
I ask because if episodic then there is no way in hell I would even consider DBS.
As a chronic I still wouldn't consider it but that is me.
I wouldn't begrudge anyone who does I just hope they are completely educated and have gone to many of the top docs and that they suggest it and are in agreement.
Good luck.
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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rolo65
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I find it hard to believe any doc would just leave you on prednisone for 6 years straight. The long term side effects of prednisone have been known for years now.
My uncle was on the stuff for years (70’s) for repertory illness and it destroyed his bones. He got a cold and sneezed hard enough to fracture 3 vertebrae in his mid back and had to spend two weeks in a hyperbaric chamber just to get enough oxygen in his blood to keep him alive.
I think your doc needs a little DBS for leaving you on the prednisone for such a long time. I gave up on the prednisone after the 7th taper had no effect and went to DHE for high activity periods. I am chronic and get hit almost every day with spring and fall being the worst, sometimes 10-12 hits a day. I finally ended up on lithium and I feel the reason it worked is because I quit all the other crap that didn’t work before I started on the lithium.
I tried the RC seed thing which helped get me off all the other crap I was on and now I am managing to get by on just 450 mg of the lithium per day.
I am so sorry that you had to wreck your body to find out what the dreaded pred can do.
PFW, Rolo.
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Bob_Johnson
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Re: DBS? Got any info?
« Reply #4 on: Nov 28th, 2007, 8:03am » |
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Brain. 2005 Apr;128(Pt 4):940-7. Epub 2005 Feb 2.
Hypothalamic stimulation in chronic cluster headache: a pilot study of efficacy and mode of action.
Schoenen J, Di Clemente L, Vandenheede M, Fumal A, De Pasqua V, Mouchamps M, Remacle JM, de Noordhout AM.
Headache Research Unit, University Department of Neurology, CHR Citadelle, Bd du XIIeme de Ligne, B-4000 Liege, Belgium. j.schoenen@ulg.ac.be
We enrolled six patients suffering from refractory chronic cluster headache in a pilot trial of neurostimulation of the ipsilateral ventroposterior hypothalamus using the stereotactic coordinates published previously. After the varying durations needed to determine optimal stimulation parameters and a mean follow-up of 14.5 months, the clinical outcome is excellent in three patients (two are pain-free; one has fewer than three attacks per month), but unsatisfactory in one patient, who only has had transient remissions. Mean voltage is 3.28 V, diplopia being the major factor limiting its increase. When the stimulator was switched off in one pain-free patient, attacks resumed after 3 months until it was turned on again. In one patient the implantation procedure had to be interrupted because of a panic attack with autonomic disturbances. Another patient died from an intracerebral haemorrhage that developed along the lead tract several hours after surgery; there were no other vascular changes on post-mortem examination. After 1 month, the hypothalamic stimulation induced resistance against the attack-triggering agent nitroglycerin and tended to increase pain thresholds at extracephalic, but not at cephalic, sites. It had no detectable effect on neurohypophyseal hormones or melatonin excretion. We conclude that hypothalamic stimulation has remarkable efficacy in most, but not all, patients with treatment-resistant chronic cluster headache. Its efficacy is not due to a simple analgesic effect or to hormonal changes. Intracerebral haemorrhage cannot be neglected in the risk evaluation of the procedure. Whether it might be more prevalent than in deep-brain stimulation for movement disorders remains to be determined.
Publication Types:
Evaluation Studies
PMID: 15689358
=========================
Neurol Sci. 2005 May;26 Suppl 2:s138-9.
Deep brain stimulation and cluster headache.
Leone M, Franzini A, Felisati G, Mea E, Curone M, Tullo V, Broggi G, Bussone G.
Headache Centre, C. Besta National Neurological Institute, Via Celoria 11, I-20133, Milan, Italy. leone@istituto-besta.it
In recent years, neuroimaging data have greatly improved the knowledge on trigeminal autonomic cephalalgias' (TACs) central mechanisms. Positron emission tomography studies have shown that the posterior inferior hypothalamic grey matter is activated during cluster headache attacks as well as in short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT). Voxel-based morphometric MRI has also documented alteration in the same area in cluster headache patients. These data suggest that the cluster headache generator is located in this region and leads us to hypothesise that stimulation of this brain area could relieve intractable cluster headache just as deep brain stimulation improves intractable movements disorders. This view received support by the observation that high frequency stimulation of the ipsilateral hypothalamus prevented attacks in an otherwise intractable chronic cluster headache patient previously treated unsuccessfully by surgical procedures to the trigeminal nerve. So far, 16 patients with intractable cronic cluster headache (CCH) and one intractable SUNCT patient have been successfully treated by hypothalamic stimulation. The procedures were well tolerated with no significant adverse events. Hypothalamic DBS is an efficacious and safe procedure to relieve otherwise intractable CCH and SUNCT.
Publication Types:
Review
PMID: 15926012 [PubMed]
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Bob Johnson
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Jill
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Re: DBS? Got any info?
« Reply #5 on: Nov 28th, 2007, 11:21am » |
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Hi there..
I am sorry that you are going through all of this. A friend of mine is also having many complications due to be on steroids for too long. It is a tough road to travel. I am also sorry to hear that you cannot work with the horses anymore... I know what a gift it is to work with them.
As to the surgery, I am also unresponsive to everything and this DBS surgery has been recommended to me by my neurologist. I have put the idea on hold right now, consultation and all, because it is such a big decision. The surgery has been found to be very effective for other disorders such as parkinsons but the research with clusters is still on going.
Before you consider this surgery, there are two others that are possibilities. They are much safer and you would have trials first so that if it does not work, you do not have anything permanent. I have had them both done and, though they did not work for me (my doctor says I need to try it longer), I have heard that they have had good results with others.
The first one is the occipital nerve stimulator and the other is the super-orbital nerve stimulator. They both consist of a wire that either goes into the back of the head (the occipital nerve) or right above the eyebrow (the super-orbital nerve). The stimulator provides a kind of stimulation to the nerve that reminds me of a bee buzzing, that vibration type of feel.
When done permanently, no one can tell that you have any wires or anything. The risk of surgery is minimal, about the same as giving yourself a shot. They do not sedate you all of the way as they need you awake so that they place it in the right spot.
I think that surgery has to be a last resort but it is an option for some to consider. If you have any questions, feel free to pm me or email me and I will try to help in anyway that I can.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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fubar
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Re: DBS? Got any info?
« Reply #6 on: Dec 4th, 2007, 5:26pm » |
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I am also considering DBS. I have had 2 neurologists tell me that I have exhausted all pharmacological remedies, and I should consider a Trigeminal Nerve Rhizotomy or DBS. Since the rhizotmy is destructive, I am not going to consider it. The DBS sounds like a major surgery, but the upside is it is completely reversable, and you can turn it off if it isn't working. Only one patient has died during the surgery... I'd hate to be the second. So, of course that is a worry.
The real problem is insurance will not pay for it. DBS is 'experimental'... What to do?
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Bob_Johnson
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Re: DBS? Got any info?
« Reply #7 on: Dec 4th, 2007, 7:09pm » |
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Lancet Neurol. 2006 Oct;5(10):873-877.
Deep brain stimulation in headache.
Leone M.
Department of Neurology and Headache Centre, Istituto Nazionale Neurologico 'Carlo Besta', via Celoria 11, 20133 Milano, Italy.
BACKGROUND: The therapeutic use of deep brain stimulation to relieve intractable pain began in the 1950s. In some patients, stimulation of the periaqueductal grey matter induced headache with migrainous features, indicating a pathophysiological link between neuromodulation of certain brain structures and headache. RECENT DEVELOPMENTS: Neuroimaging studies have revealed specific activation patterns in various primary headaches. In the trigeminal autonomic cephalgias, neuroimaging findings support the hypothesis that activation of posterior hypothalamic neurons have a pivotal role in the pathophysiology and prompted the idea that hypothalamic stimulation might inhibit this activation to improve or eliminate the pain in intractable chronic cluster headache and other trigeminal autonomic cephalgias. Over the past 6 years, hypothalamic implants have been used in various centres in patients with intractable chronic cluster headache. The results are encouraging: most patients achieved stable and notable pain reduction and many became pain free. All deep-brain-electrode implantation procedures carry a small risk of mortality due to intracerebral haemorrhage. Before implantation, all patients must undergo complete preoperative neuroimaging to exclude disorders associated with increased haemorrhagic risk. No substantial changes in hypothalamus-controlled functions have been reported during hypothalamic stimulation. Hypothalamic stimulation may also be beneficial in patients with SUNCT (short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing)-a disorder with close clinical and neuroimaging similarities to the cluster headache. WHERE NEXT?: Neuroimaging findings in patients undergoing posterior hypothalamic stimulation have shown activation of the trigeminal nucleus and ganglion. This evidence supports the hypothesis that hypothalamic stimulation exerts its effect by modulating the activity of the trigeminal nucleus caudalis, which in turn might control the brainstem trigeminofacial reflex-thought to cause cluster headache pain. Future studies might determine whether other areas of the pain matrix are suitable targets for neuromodulation in patients with cluster headache who do not respond to hypothalamic modulation.
PMID: 16987734 [PubMed
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Bob Johnson
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