Jump to content
Sign in to follow this  
Ashley

Deep Brain Stimulation (DBS) for Obsessive-Compulsive Disorder - Your Views

Recommended Posts

So a few weeks ago we had to submit our thoughts on TMS for OCD, and I had hoped that would be the end of this, it seems not.

NICE are now developing a new Interventional Procedures Guidance which is looking at Deep brain stimulation (DBS) for obsessive-compulsive disorder.

Quote

 

Lay summary of the procedure:

Obsessive-compulsive disorder is a mental health condition in which a person has obsessive thoughts (repeated, unwanted and unpleasant thoughts, images or urges). The person feels the need to carry out repetitive behaviours (compulsive), to try to relieve the unpleasant feelings brought on by the obsessive thoughts. Symptoms can be distressing and interfere with normal life. In this procedure, an electrode is put into the brain and connected to a wire that is tunnelled under the skin behind the ear and down the neck. The wire is attached to an electrical stimulator that is put under the skin on the chest. The aim is to reduce the obsessive-compulsive thoughts and behaviours.

 

 

NICE are wanting us to seek our members views on the procedure, these are the three important questions I am asking people with OCD to comment on.

  • What do patients (or carers) think the advantages of the procedure or operation are?       
  • What do patients (or carers) think the disadvantages of the procedure or operation are?
  • Are there any groups of patients who might benefit either more or less from the procedure or operation than others? If so, please describe them and explain why.
     

Please submit by 5pm on Friday 6th December 2019.

The charity have long been critical of this procedure for OCD and the unethical ways some UK researchers have gone about recruiting for trials. However as NICE are reviewing it's also time for us to look at it again, so I will use your comments to help inform our own stance when we review it.

Share this post


Link to post

What I find frustrating is NICE are interested in our opinions but they don't give us any literature to base them on. How are we meant to know who it will benefit more or what the disadvantages or advantages are? 

Share this post


Link to post

I  don't understand how this procedure is supposed to work. If I knew that and a success rate after clinical trials then I might be able to form an opinion. 

Share this post


Link to post

I have to agree with Gemma and Taurean that the request for opinions without much data to base that on is odd.

I do know that DBS has been approved in the US by the FDA for treatment of OCD in limited cases, but I think the research on its effectiveness is pretty limited.

17 hours ago, Ashley said:

What do patients (or carers) think the advantages of the procedure or operation are?

The only advantage would be relief of symptoms for otherwise treatment resistant patients 
 

17 hours ago, Ashley said:

What do patients (or carers) think the disadvantages of the procedure or operation are?

Well its invasive and involves sticking physical objects in the brain.  There's the potential for errors during the procedure and post operative infection.  Additionally you have to deal with any long term effects of having something permanently implanted in your brain.  On top of that, patients who would otherwise benefit from standard or other alternative treatments, might be pushed in to this or see it as a "cure", undergoing the risk without any resulting benefit. 
 

17 hours ago, Ashley said:

Are there any groups of patients who might benefit either more or less from the procedure or operation than others? If so, please describe them and explain why.

As a layperson I don't think I'd generally be qualified to determine. who if anyone might benefit from this given the rather serious nature.

Personally, I would view DBS as a last resort type of treatment that should require significant evidence of treatment resistance to even be considered.  Additionally it should be limited to being performed by only the most qualified personel in supervised facilities/conditions.  It should be hard to get this treatment at best.

Share this post


Link to post

I myself have more faith in common place additional practices on top of  CBT. 

From my own experience CBT on its own may well not be enough, and medication is pretty hit and miss. 

Providing the sufferer has worked through the proper cognitive behavioural therapy for their issues, then I would have more faith, which my personal experience has shown to be beneficial, in a package teaching simple mindfulness techniques. 

Evidence proves that mindfulness practice can reduce the anxiety response. And modern mindfulness teaching combined with CBT for OCD suggests when we focus into mindfulness we switch to using a benign part of our brain, as opposed to the active part of the brain where obsessing and compulsing occurs. 

Again my personal experience of this has suggested this additional benefit is there - but I can't always manage to do it. 

However, I think that approach still has some way to go to satisfy such organisations as our own charity and NICE. 

But anyone can try it, it may work for them, and there is no invasive procedure. The process is all about believing we are "throwing a mental switch" into focusing in the mindful, not the active trying to solve - including obsessive compulsive - state. 

Share this post


Link to post

Consultation of sufferers & carers seems quite bizarre to me in respect of DBS.  How (except for  very tiny number of people who've had the procedure) can anyone give valid feedback other than that which is simply speculative?

Share this post


Link to post
1 minute ago, Caramoole said:

Consultation of sufferers & carers seems quite bizarre to me in respect of DBS.  How (except for  very tiny number of people who've had the procedure) can anyone give valid feedback other than that which is simply speculative?

I hope it's not just a consultation exercise, with the decision to recommend it already being made.... call me cynical, that's my fear.

But, I think the key message we can try and get across is what do those of us with OCD actually think in terms of would we be prepared to risk the procedure? Would we want it?  The NICE consultation earlier in the year tried to suggest there was an increase in demand for the procedure, which I simply do not believe. I guess the consultation of our members may help show a trend for demand or not I guess.

Share this post


Link to post
1 hour ago, Ashley said:

I hope it's not just a consultation exercise, with the decision to recommend it already being made.... call me cynical, that's my fear.

I know you do worry that they are just box ticking.

 

1 hour ago, Ashley said:

But, I think the key message we can try and get across is what do those of us with OCD actually think in terms of would we be prepared to risk the procedure? Would we want it?

It would be great if as many people as possible answered this question, we need to at least indicate to them if we really do want this sort of treatment. 

Do I want an electrode put in my brain and have wires tunnelled under my skin?

Absolutely not!

Share this post


Link to post

For me the concept would be better if the electrode was inside a special cap, not invasively inserted.

I would simply wear the cap for say sessions in the morning or evening with a box of gizmos say attached to my belt. 

Or maybe they could link via Bluetooth 😁

Share this post


Link to post

This is mad. How are NICE expecting us to form any opinions without scientific literature to inform our thinking? A bit Brexity if you ask me!

Plus I do fear the ‘ethics’ behind the clinical trials.  What about the follow up care 1 month later, 1 year later, 10 years later after the trials are done, the big bucks are made and the researchers have made their name?

-What do patients (or carers) think the advantages of the procedure or operation are?       

A reduction in ocd thought patterns leading to an increased quality of life and disabling the disability.

-What do patients (or carers) think the disadvantages of the procedure or operation are?

We don’t know what we are playing with in terms of the human brain. Will this affect personality, memory or ability to function cognitively and/or biomechanically? Will the electrical stimulation bring on seizures or disrupt the heart’s electrical function. And what about 1 monty/year/10 year’s down the line? Who will help participants recover from detrimental side effects? Whatever those may be?

-Are there any groups of patients who might benefit either more or less from the procedure or operation than others? If so, please describe them and explain why.

These groups could be adversely affected I think: People with co morbid problems alongside ocd like epilepsy (seizures due to brains’ electrical malfunction) or schizophrenia (opposing levels of dopamine and serotonin in schizophrenic brains compared to ocd individuals’ brains giving rise to this condition). How would the treatment be safe for these individuals?

Plus for those who are neurodiverse (autism, aspergers), and whose brains have a different architecture, so different neuronal wiring, would this treatment not potentially be detrimental? Again, a risky unknown.

And are these electrodes to stay implanted for life? What about airport security scanners, or scanners in daily work (finance companies and government agencies have full body scanners). Would people not be limited? How do you explain that you have a wire in your brain? It’s not quite like saying you have a pacemaker!

Share this post


Link to post
8 hours ago, Ashley said:

I hope it's not just a consultation exercise, with the decision to recommend it already being made.... call me cynical, that's my fear.

The NICE consultation earlier in the year tried to suggest there was an increase in demand for the procedure, which I simply do not believe.

I guess the consultation of our members may help show a trend for demand or not I guess.

I think you might be right Ashley. They just want the ‘market research data’ - ocd sufferers views - post hoc to help promote a sales pitch. 

I think our collective views are to be part of the proposal package that will go to whatever ethics committee who will give the go ahead for clinical trials, as the ‘demand’ is sufficient.

Share this post


Link to post

6 patients is too small a sample size. What will these patients be like one year from now? Will they regress? Will their ocd get worse? If their ocd stays improved and they have not been affected adversely in any other way, only then would I see it as a viable treatment, because at least then we would know what the risks are in order to decide upon that treatment or not

Share this post


Link to post
7 hours ago, Gemma7 said:

Do I want an electrode put in my brain and have wires tunnelled under my skin?

Absolutely not!

Neither would I.  Having said that (and I know very little about it) but I believe DBS is used sometimes for sufferers of severe Parkinson's Disease.  People who's life is so severely compromised by shaking that can be switched off/on by using this procedure.  I might think differently under those circumstances but not for OCD which responds well to other methods where Parkinsonism often doesn't.

Share this post


Link to post
11 hours ago, Ashley said:

But, I think the key message we can try and get across is what do those of us with OCD actually think in terms of would we be prepared to risk the procedure? Would we want it? 

In my current situation where my OCD has responded very well to medication and CBT?  No I would not even begin to consider this procedure.  Even if it meant I never had to take drugs again.  Permanent surgical modification of my brain?  Thats a HUGE risk.

In a situation where I had tried every other safer alternative  and gotten little to no relief?  Honestly I'm guessing I would.  But in extreme distress like that I'd probably also be thinking emotionally and so should definitely not be allowed to make the decision on my own.  

If/when this treatment is allowed my opinion is that it should be subject to strict criteria and done extremely rarely.  Non-invasive alternative treatments should definitely be preferred over this one.

Share this post


Link to post
5 hours ago, dksea said:

In a situation where I had tried every other safer alternative  and gotten little to no relief?  Honestly I'm guessing I would.  But in extreme distress like that I'd probably also be thinking emotionally and so should definitely not be allowed to make the decision on my own.  

This is the charity's concern. Desperate vulnerable people will be making such a decision, and I am not sure all health professionals would do enough to ensure a) they had accessed the best quality psychological therapy first (i..e at least two OCD specialists)  and b) explain the risks to them.

I have read a lot about DBS for depression too, and some of the blogs coming out of the US make for grim reading.....  trial data not published, suicides.  Then I stumbled on the tragic case of two twin girls with chronic OCD who both went down this route, claimed it gave their life back but three years down the line both took their own lives. Hard to say if the DBS helped or somehow led to the tragic consequences, but the point being with all those cases I don't know how much of the research data is actually being published. The good obviously is, but is all the bad stuff? A question we may never know the answer to.

 

Share this post


Link to post

My knee jerk reaction to this is, that I don't want anything to do with it, so I have sat and let it stew for a day, and I still have concerns.

I feel being consulted on this is a bit of a stunt as my (our?) Opinions could easily be discounted as uninformed if they don't fit the bill,  after all most serious medical procedures sound scary and a bit mad if you don't understand what's going on. Me not liking it didn't mean it won't work.

So I fear that if I say I'd like it I'll be taken seriously, "look.at the demand", and if think it's not for me it will be seen (rightly) as uninformed.

I'm also worried about distressed and vulnerable people being "helped" to make poor decisions.

Several comments have said that they don't want a wire in their head, neither do I. But I think we have all done things that we wouldn't want to do weather as a result of an obsession, or even as part of our ERP. 

I really didn't want to spend time this week digging in a bin like an urban fox, trying to find a bit of wire, I didn't even believe it would bring much relief, but I did it any way. On that basis I can easily see myself being pursusded that any treatment that is suggested is worth a go.

I think we all would like a magic bullet solution to our problems, and I'd hate to be dog in a manger about a genuine break through, but I think more needs to be done before we throw away our CBT worksheets.

Share this post


Link to post

Since I'm not from the UK I cannot really contribute but it's done here and they publish that it's only done as last measure if nothing else helps. It further says that for 2 out of 3 patients the symptoms could be reduced by at least 25%. I did not do research in detail so I don't know if the site I found and quoted gives an overall picture.  But if above figures are halfway correct then it's not very encouraging in my eyes. But then I don't know if the treatment would be exactly the same in the UK as it's done here.

Share this post


Link to post

I wonder why the NHS/ nice are suggesting going down this route. Would it not be better, safer, more cost effective, ethical and easier to open small residential specialist CBT clinics in each U.K. city. If 1-2% of the population is suffering with this at some level and they already have evidence based treatments that just aren't easily accessible to many people in the UK.

Edited by Eternal Sunshine

Share this post


Link to post

This all sounds ABSOLUTELY TERRIFYING to me. ;*( Even if my OCD was compelling me to eat partially eaten food from out of gutters (I hope it won't take this idea seriously), or run around on all fours biting postmen like a dog to save the world from bombardment by asteroids, I wouldn't go through this procedure, NOT IN A BILLION YEARS!!!!

Reading this thread, I distinctly remember once reading a case of a person maybe getting an implant like that in his brain, and also having some kind of "volume knob" type contraption to go with it, where he could increase the setting depending on his anxiety levels to send a stronger electrical current to his brain in order to quell his anxiety!!!!! I can't remember whether it was anxiety, depression, OCD or not, but a lot of these neurological conditions kind of interlink with each other anyway, don't they????? I thought this particular story sounded ABSOLUTELY HORRIFYING, the way how the person in question would talk about the "volume knob of electrical current" being raised to a certain level, like say "3 out of 10" giving him total relief from his symptoms for three months or so, ONLY FOR THEM TO COME BACK AS SEVERE AS EVER at the end of the three months!!!!! Then there'd come a time where in order for him to get the same level of relief again, he'd have to move the "volume knob of electrical current" all the way up to like, 9 or so, and leave it there LONGER, like his mind was developing a tolerance to it, needing greater and greater exposures each time!!!!! And somehow I don't think exposing the brain to greater and greater electrical charges over a few years is a very healthy thing to do!! Of course, this instance I'm referring to might not be the EXACT SAME PROCEDURE, but it sure does sound awfully similar!!!!

As a few people here have stated, I'd say just about the only benefit of such a procedure would be OCD thought patterns being dampened significantly, or maybe even totally cancelled out within the brain. But what follows are the reasons why I believe having an ELECTRODE, and wires implanted into my brain is FAR TOO HIGH A PRICE TO PAY FOR A CURE!!!

I feel like the WORST POSSIBLE disadvantage to an invasive surgical procedure like this is the worry that such an implant might be looked upon as "the mark of the beast". By God. Is it honestly worth throwing away your chances of getting into Heaven simply because you want to live a life free of OCD-related fears, stresses, worries and compulsions???? I feel it's FAR PREFERABLE to suffer constantly in our Earthly lives, which are tantamount to the blink of an eye compared to the afterlife. We live in an era where duplicitous technologically-driven corporations and scientific elites seek to invade our bodies with various gadgets such as microchips and the like, all with the promise of heightened quality of life, greater social standing, and the pride of SETTING FOOT INTO THE FUTURE before your neighbours, but I ask, DOES ANYTHING EVER REALLY COME FOR FREE?????? Do these scientists and corporations really want to do it out of compassion, love and generosity, or is it because they stand to GAIN AND PROSPER from doing such things?????

Others here have surmised that given how little is known about the complex functioning and operations undertaken by our powerful minds, that tampering and tinkering around with them with crude, artificial implants is DOWNRIGHT FOOLHARDY, and I'm most definitely inclined to agree on that!!!!! Furthermore, what if such implants begin to "rot" or degrade in time, possibly running the risk of "leaking" mechanical fluids or such things into our fragile, precious brains?????? How are we expected to belief the "professionals" will know exactly when the devices will begin to rot or deteriorate, and when their removal and replacement will be necessitated?????? These are OUR LIVES AND BODIES they're playing around with, after all, and considering it's common knowledge that our minds and bodies all vary and differ exponentially from one another, I feel like there's FAR TOO MANY VARIABLES to take into consideration when weighing up the options as to whether or not this kind of undertaking TRULY IS SAFE AND HELPFUL to OCD victims. And how will we know how well electrodes implanted into peoples brains will react with other bodily implants people might have, such as pacemakers and what not???? Will they coexist harmoniously, or will there be conflicts????? Will ALL OCD BRAINS readily accept the implants, or will they reject them, essentially leading to unforeseen consequences, panic, and possibly deaths on the operating tables????? These are all worrisome prospects that I feel must be taken into consideration on the ethical front!!!!

Share this post


Link to post
On Wednesday, October 09, 2019 at 10:35, Ashley said:

1)What do patients (or carers) think the advantages of the procedure or operation are?       

2) What do patients (or carers) think the disadvantages of the procedure or operation are?

3) Are there any groups of patients who might benefit either more or less from the procedure or operation than others? If so, please describe them and explain why.
 

Please submit by 5pm on Friday 6th December 2019

I can't believe this day has come - I'm so happy! 1) It might help ppl who can't manage their lives due to OCD who have tried everything else available. It could give hope to sufferers & their families. It is relatively painless. Its efficacy does not depend on the relationship between the therapist & pt. The waiting lists might be significantly lower than for psychological therapy. Unlike ketamine, you can leave the clinic immediately and can drive immediately. Having it available on the NHS all around the country would be amazing - private treatment costs a fortune and is only available in limited places. It could reduce suicides.

2) You really need to live near a clinic because you need to go 5 days a week for 4-6 weeks. It is difficult to access for ppl who don't live near a clinic - you would have to devote 4-6 weeks to commuting for the treatment so only suitable for non-working pts. Current disadvantages are high costs and limited locations. It can cause headaches. The treatment might not result in an improvement.

3) Already covered this really. Benefit more: pts who have tried everything else without success, suicidal pts / desperate pts, ME. Benefit less: if the treatment doesn't work for you.

I would try this tomorrow. If you hear of any clinical trials please let me know.

Share this post


Link to post

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...