Wednesday, March 07, 2007

More on DBS (and the Neurological/Psychiatric Divide)

"The microdrive behind the sterile curtain will insert probes into my brain a few micrometers at a time." - Steven Gulie in Wired

It seems that deep brain stimulation is in the news these days, particularly DBS for Parkinson's disease. Neurophilosophy (A first-hand account of deep brain stimulation) and Mind Hacks (Deep brain electrodes - from the inside) have covered an article in Wired written by a patient undergoing the procedure at Stanford University:
A Shock to the System

To slow the progress of Parkinson’s disease, doctors planted electrodes deep in my brain. Then they turned on the juice.

By Steven Gulie

I'm lying in an operating room at the Stanford University hospital, head shaved, waiting for my brain surgery to begin. Sure, I feel anxious, but mostly I feel crowded. There are 10 people milling about, tinkering with instruments and examining me. It’s an impressive crew, including a neurosurgeon and his fellow, a neurologist and her fellow, an anesthesiologist, an experimental physicist, and a graduate student in electrical engineering. That’s right, a physicist and an electrical engineer. Directly behind me, out of my sight, is the star of the show, chief neurosurgeon Jaimie Henderson: 44 years old, tall, erudite, and handsome. On my right, flexing my hands, is neurologist Helen Bronte-Stewart: brisk, smart, and beautiful. In fact, nearly everyone is not only brilliant but also pretty enough to play themselves in the movie version of this story. I call them Team Hubris.
The procedure has been remarkably successful, allowing most patients to resume their normal activities after being held captive by tremors, rigidity, and bradykinesia for years:

Today, eight years since the first signs of Parkinson’s and after months of fiddling, my body is almost free of symptoms. With the stimulator turned off, a Parkinson’s test shows 20 significant impairments. With the stimulator on, it drops to two. Add just a touch of L-dopa and it drops to zero.

The last wisps of fog have cleared away. My jokes make people laugh again. I can keep up with conversation. I can ride a bike. I can write. It’s been five months since the surgery, but it has finally all come together: It works. I forget that I even have Parkinson’s most of the time. And last November, I went back to work full-time. It’s a miracle. A second chance at life.

DBS isn't limited to Parkinson's, however. The Neurocritic has previously covered DBS for severe intractable depression and phantom limb pain.

To my knowledge, there have been no protests about conducting invasive brain surgery on people with neurological disorders such as Parkinson's, primary generalised dystonia, atypical tremor syndromes, and epilepsy. However, when the same general procedure (with different neural targets, of course) is used for a psychiatric disorder, rabid virulent critics crawl out of the woodwork to call the procedure "butchery" and those who discuss it "disgusting misguided butchers" (among other unmentionable names).

How about Tourette's Syndrome? Neurophilosophy discussed Deep brain stimulation for Tourette's Syndrome and didn't get any nasty comments from anti-psychiatry trolls. Perhaps that's because Tourette's is now considered an inherited neurological disorder (in most cases), although it had previously been classified as a "psychiatric" disorder, as summarized in this Science commentary:
The cause of Tourette syndrome has been controversial ever since Georges Gilles de la Tourette, a neurologist who shared a mentor with Sigmund Freud at the Salpêtrière Hospital in Paris, first described the condition in 1885. Is the syndrome the result of hysteria (Tourette’s hypothesis), repressed sexual conflicts, or oppressive mothers, which were the favored explanations for much of the 20th century? Or is it an organic defect of the brain, as many neuroscientists and physicians now hold? The ability of neuroleptic drugs, beginning with haloperidol in the 1960s, to reduce tics supported the neurologic position.
Or maybe it's just because DBS for TS hasn't gotten the publicity that DBS for depression has received...

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At March 08, 2007 7:40 PM, Anonymous Anonymous said...

I got here after googling -"hippocampal shrinkage".

Interesting blog.
I shall return anon.

At March 09, 2007 4:32 PM, Blogger The Neurocritic said...

Great! Thanks for dropping by, and hope to see you again soon.

At March 13, 2007 8:18 PM, Blogger NeoNurseChic said...

It's also being considered for cluster headache (two articles with it already being done - one resulted in a significant number of deaths versus trial participants, however!). I have new daily persistent headache (essentially chronic migraine - a headache I've had for over 6 years straight now), and chronic cluster headache - at the moment, I'm getting cluster headache attacks about 3-5x/day or night. I went to a neurosurgeon to consider trying an occipital nerve stimulator implant, but he didn't feel this was a good option for me. First of all, my headaches are largely frontal - with severe pain in the trigeminal nerve areas - and he said the occipital nerve in theory goes over the top of the head and extends down to just above the eye, but in reality only goes to about halfway over the top of the head. When I considered nerve block injections that hit directly on the occipital nerve, I could recall only having numbness to a point on the top of my scalp that aligned with my ears. He also said that the battery pack would be difficult to implant on me, since I'm thin. I took that as a compliment! haha...

So anyway - we talked about other options. One would be to implant a stimulator just above my eye - but that would be an ugly surgery for a then-24 year old girl. He felt that DBS would be the best option for someone like me, but he said they weren't ready to perform this surgery for headache in the US just yet. I'm dying for the day they are ready - as long as it will be paid for by scientific study or insurance, since health problems have broken my piggy bank a long time ago! I do hang onto research on the DBS - I really feel like this might hold some hope for me - someone who hasn't been helped by anything else really - and I could really use something that would actually help! But I'm not so foolish to believe taht this would be my cure-all - I don't even know if it would work at all, and the risks of implanting it are also there.

All that being said, I don't find it barbaric - not for neurology, not for psychiatry. We're talking about people who have failed all other treatment options. Nobody just jumps to brain surgery first! lol When I got my headache over 6 years ago, I didn't say, "Oh quick let's go to the neurosurgeon for a cure!" I have been hospitalized 8 times or so for headache, as well as done outpatient IV therapies, have had many nerve blocks (just had 18 injections today, actually - in the face and head...boy did that hurt!), and so on. I'm desperate. People with severe depression and other psychiatric disorders that have not responded to meds are also desperate. People with Parkinsons that isn't responding to mediation are desperate. People with tourettes that totally devastates them and doesn't respond to meds are desperate. So what's the difference?

It's simply the view that psychiatric disorders are not real. But would those same people who argue against the DBS for psychiatric reasons really look at someone who is suffering to the point where they have no life whatsoever - and deny that person the one thing that might help them? It's not barbaric - it might just be heaven-sent for those of us who have not found relief for our conditions elsewhere. I know for my headaches, I've tried everything under the sun - including all sorts of alternatives....but am still in excruciating, debilitating pain. If someone told me they were ready to try the DBS, I'd seriously consider it.

I'm keeping my fingers crossed!!!

Great blog post!! I got here from Shrink Rap.

Take care,
Carrie :)

At March 14, 2007 4:03 PM, Blogger The Neurocritic said...

Hi Carrie,

Sorry to hear you're suffering so much from chronic cluster headaches! I hadn't heard of DBS as a potential treatment. Heading over to PubMed, I found some of the failed experimental therapies, like radiosurgery:

McClelland S 3rd, Tendulkar RD, Barnett GH, Neyman G, Suh JH. (2006). Long-term results of radiosurgery for refractory cluster headache. Neurosurgery 59(6):1258-62; discussion 1262-3.

... Previous reports involving short-term follow-up of CH patients have reported modest degrees of pain relief after radiosurgery of the trigeminal nerve ipsilateral to symptom onset. With the recent success of deep brain stimulation as a surgical modality for these patients, it becomes imperative for the long-term risks and benefits of radiosurgery to be more extensively delineated. ...
RESULTS: After radiosurgery, pain relief was poor in nine patients and fair in one patient. Six patients with poor to fair relief initially experienced excellent to good relief (range, 2 wk-2 yr after treatment) before regressing. Five patients (50%) experienced trigeminal nerve dysfunction, manifesting predominantly as facial numbness after treatment. ...

On a somewhat more positive note, I'm sure you've seen this interesting review article by Stefan Evers in Lancet Neurology discussing DBS for cluster headache:

Reports on the efficacy of deep-brain stimulation of the hypothalamus in cluster headache are a good example of innovative therapeutic strategies based on pathophysiological and brain imaging studies in primary headache. However, critical commentaries have been published showing that this method is still far from being a routine procedure in the treatment of cluster headache. May and colleagues were able to show the specific mechanisms of the hypothalamic stimulation in patients with cluster headache by using functional MRI and PET imaging. These data suggest a hitherto unrecognised functional modulation of the pain-processing network as the mode of action of hypothalamic deep-brain stimulation in cluster headache.

Wow, hypothalamic DBS! And as you noted, in Germany, not the U.S.

A May, M Leone and H Böcker et al. (2006). Hypothalamic deep brain stimulation in positron emission tomography. J Neurosci 26: 3589–3593.

I admire you for retaining a positive outlook under such challenging circumstances. I hope you find something that works.

And thanks for the supportive comments on the possible use of DBS for severe intractable psychiatric illnesses.

At March 14, 2007 5:03 PM, Blogger NeoNurseChic said...

Hiya :)

Thanks for posting the info. Yep, I've looked into this quite a lot! I'm actually a trainee member of the American Headache Society, and potentially plan to become a pediatric neurology nurse practitioner. I'm on hiatus from school for now, however! I went to the 47th Annual Scientific Mtg of the American Headache Society in Philadelphia, and in September I went to the public session for the Migraine Trust (London) and the annual general mtg of the International Headache Society. They were great! I really have a passion for learning about all things headache.

This might be hard to believe, given the nature of cluster headaches, but my constant migraine is actually far more disabling to me. The clusters are more painful, in the moment, but the constant migraine (for over 6 years now) never ever goes away. That's the one that gets me down and depressed the most. I have things that abort the clusters, but nothing that really helps the chronic migraine. I've been on and off over 100 different meds, and I've been hospitalized about 8 times for headache - the last one was 17 days long. They've included time in the ICU, having DVTs in my arm from a PICC line, and a whole host of not very good things. It's difficult to stay positive and hopeful, but I have to go on - keeping some hope is all I have left! Especially after days like yesterday, where I cried through my neuro NP appt, and had 18 nerve block injections in my face and head! Bleh!

I was actually recently a subject of a case study that will soon be published in "Headache". The case study is on steroids and avascular necrosis for those with severe headache disorders. I have bilateral avascular necrosis of the femoral condyles from steroids used to treat headache.

Here's the part published about my case (part of the online early articles on Headache)....

...Case 3.—
A 21-year-old woman presented with new daily persistent headache and mild hypertension in 2001 and cluster headache in January 2004. In 2002, in addition to sumatriptan, nortriptyline, and gabapentin, she was treated with intermittent steroid tapers for her intractable headaches. Brain MRI showed 9 typical migraine white matter lesions. She was hospitalized once within the year prior to AON diagnosis. About 8 months before AON diagnosis she received 200 mg methylprednisolone IV q 12 hourly for 4 days. She also received 26 mg dihydroergotamine and 252 mg dexamethasone (≈1344 mg methlyprednisolone) within the year prior to diagnosis of AON. The total burden of steroids she received was equivalent to 2944 mg of methylpredonisolone within the year prior to diagnosis of AON. About 2 weeks prior to the diagnosis of AON, she took a dexamethasone taper of 36 mg over 4 days (≈192 mg methylprednisolone). Although she had pain in her knees since childhood, in August 2004, bilateral knee pain worsened and swelling was noted. MRIs of the knees demonstrated bilateral AON. She used a total of 7 dexamethasone taper courses during the year AON was diagnosed. The dose per course was 36 mg (≈192 mg methylprednisolone) and each course lasted 4 days. She also used topical and inhalation corticosteroids intermittently for nasal allergy and seasonal asthmatic attacks, respectively, but their use was on as-needed basis and only once per day. She developed deep venous thrombosis in the arm after a PICC line inserted in 2004. She was then screened for coagulation disorder and only factor VIII assay was 1.37 U/mL (Normal: 0.55 to 1.28 U/mL) and cardiolipin IgG antibodies result was equivocal. RPR and lupus anticoagulant were negative. In September 2004, she was also diagnosed with osteopenia of lumbar spine and left hip....

Article hasn't been published yet, but it's called "Steroids and Aseptic Osteonecrosis (AON) in migraine patients" by Aamir Hussein, MD, and William B. Young, MD; Published article online: 7-Dec-2006
doi: 10.1111/j.1526-4610.2006.00636.x

The entire read is interesting. Apparently, I'm the only one of the 3 patients studied who also has the WMLs in the brain - and they're speculating about CADASIL, which I better not have - cuz that's just very very depressing...and I'm not sure I could uphold my positive outlook in the face of that, too! But anyway.....

It's been an interesting ride, at any rate!

Thanks for posting those articles there! There are times when I wish I could have the surgery that would obliterate my trigeminal, but frankly evidence has shown that it's not that successful and can have nasty side effects. I would not want to be left with hemiparalysis of the face for the rest of my life.... I'm holding out hope that they can gain more positive results with the DBS and the hypothalamus... Something's gotta give someday!

Take care,
Carrie :)

At March 15, 2007 4:27 PM, Blogger The Neurocritic said...

The nerve block injections (and many other treatments) sound completely awful, and on top of it you have osteonecrosis from "short-term, intermittent pulse doses of corticosteroids"! I found the article in Headache. As if you haven't gone through enough already! Good luck on your quest for pain relief, and your training to become a pediatric neurology nurse.

At March 15, 2007 5:55 PM, Blogger NeoNurseChic said...

Thanks - did you get a chance to read through the entire article? It was kinda depressing once I read it, to tell the truth! I knew the picture was bleak, but it was a little more depressing once I read it there! I had IV steroids a few times, and I think there is some error in the type of steroids I had. I know for a fact that after October 2003, I was given prednisone tapers to take at home - but when the one author (AH) went back into the computer system at the doc's office, he said it was documented that I took the dexamethasone tapers. I used to take those, but I know it changed once I started seeing a different neuro after mine moved to Singapore. Don't know why the documentation is different between his and my notes. I almost wish I'd saved the packaging! Oh well....

I've finished my training to become a nurse - and I work in neonatology. I've actually had some special training lately on some of the brain monitoring devices we use, which is very exciting as neuro is basically my favorite topic! My masters was to work to become a nurse practitioner - and then I'd have prescribing rights and be able to see patients - under the supervision of a physician. I will get there eventually, but the program I was 2/3 of the way through is having some bumps in the road right now. So my plan is to apply to transfer to Penn and start over. We'll see - for now, I'm just taking some time off.

Today I worked a 12 hour shift at the hospital, and my head was absolutely awful. I actually took 2 amerge doses, 1 frova dose, and 3 aleve tabs twice. And still, it raged on. I guess I will be calling them tomorrow to talk about getting more nerve block injections. I had about 16-18 of those injections on Tuesday, but after today, I had such a bad time with the headaches again that maybe I need to do them again. I had other plans for how I wanted my med regimen to go on Tuesday, but my neuro decided that I should try to increase mexiletine (a sodium channel blocker given PO because I responded to continuous IV lidocaine twice for headache) - but I haven't been able to increase because of the extreme nausea it causes - and then come back in a few days for more nerve block injections if those wore off. And then whenever I next have a few weekdays in a row off, I have to go into the infusion center for 3 days of outpatient IV infusions. I did 2 days at Christmas time, and it did help - but left me vomiting my brain out of my head... LOL If I had any kind of savings and the ability to miss work for a few weeks, I'd do an inpatient admission with how bad my head has been lately, but I can't financially hack that right now. So carry on, I guess I must!

Anyway - sorry to bitch and moan - it's been a bad time with the headaches lately! I'm trying to keep on keepin on... ;)

Take care!
Carrie :)

At June 09, 2007 4:10 PM, Anonymous Anonymous said...

(This is for neonursechic)
My name is Kris, I am female, just turned 44 and after having intractable cluster headaches/chronic paroxysmal hemicrania for 21 months straight with no treatment working, I had the deep brain stimulator implant done this past November.
Cluster headaches, chronic paroxysmal hemicrania and SUNCT syndrome are in the same group of primary headache syndromes called TAC.
I have tons of info on it all and if you want to read my story I have posted on the message board under 'Getting to know ya' and on the 'Medications, Treatments, Therapies' sections. Just look for my topics wchich have DBS in the title. My user name on that site is: dbsworks4me My email address is on the site or you can send me a message.
There has been a link between 'typical' migraine and the pain of the TAC group of headaches. The trigeminal nerve is involved in all.
I hope you have been getting some relief from your pain. I know that it sure hurts like crazy, actually there are no words to describe it, as you know.
Incidentally, I started out having migraines years ago but then it turned into the non-remitting, intractable pain from the TAC kind of headache.
There have been reports from all over the world of the DBS working and not working. All I can say is that it is working for me and I have been getting my life back together.
Don't hesitate to contact me! Hang in there girl!
Kris from Chicago

At December 30, 2009 7:37 PM, Blogger deselby said...

I realize this comment is almost 2 years late, but maybe you get reminders when people write something. Anyway, I am in the DBS trial for severe t-r depression at UPenn. I can't say it's all been good. I'm pretty sure I was in the active group during the blinded period, with no improvement. With more freedom, I've had some really bad settings (ended up in hospital once, turned pre-manic without any of the good stuff the other time), but I've also had some of the best days I've had in more than 5 years. I've laughed without faking it. There is a lot of trial and error. I'm nowhere near remission. But if you tried to take it away from me, I'd fight as hard as if I were fighting for my life, which I've already largely lost... Just thought you might enjoy a first-hand account.

At December 30, 2009 7:44 PM, Blogger deselby said...

Meant almost 3 years... Also: to the anti-psychiatry peeps out there. Walk a BLOCK in my shoes. If you could, you'd shut up whether you wanted to or not.

At December 30, 2009 8:00 PM, Blogger The Neurocritic said...

Thanks for your comment, deselby. I hope you can find the right settings to produce an even greater improvement. Good luck!


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