Deep Brain Stimulated New Member

[DRFCno1]

And where is the proof that they wouldn't?

You could say that about any sort of surgery.

[Guest Tricia]

And where is the proof that they wouldn't?

You could say that about any sort of surgery.

How true. Did the surgeon who first performed an appendectomy ask a colleague to cut out his healthy appendix? Unlikely.

Or did Christiaan Barnard decide his pioneering heart transplant technique should also be performed on himself or fellow heart surgeons? Odd that heart patients didn't insist he did!

Edited November 3, 2014 by Tricia

[Caramoole]

The bottom line is that only the individual involved can make the decision, hopefully having considered and researched the information available exhaustively/

Ashley has both a right and a duty to offer an opinion, regardless of whether it conflicts with those who are pro DBS.

Personally, I agree that the dangers posed by medication can be equally severe and also unreversible (in some cases) and that far greater numbers of people are likely to be at risk and affected by drugs than they ever will be from DBS, simply because few people will be offered DBS routinely or easily.

[Ashley]

Their are VERY serious risks with CBT too as people can become very anxious and suicidal just like meds can be too.

Although I do believe meds should be the first line of treatment I also believe that when you feel you've exhausted all avenues then having other options out there to consider is surely a positive. (Especially if you have no quality of life anyway)

You are welcome to consider whatever you like, but please do not come on our forum spouting **** like this, that CBT poses serious risks. Compared to surgery, CBT poses no risk that the illness itself is not already causing.

[DRFCno1]

Ooh very touchy and confrontational, not setting a great example for an OCD charity CEO, think your attitude would be more off putting to users rather than alternative ways to 'possibly' a reduction in their illness.

I think I'll take the hint and leave this forum but thanks everyone for your great advice and interesting posts and hope you succeed in your battle to best this terrible illness. ?

[daisy]

Hello DRFCno1

I am sorry to read that you are leaving the forum as i for one am very interested in all that could help us with this illness.

I really hope that you reconsider your decision.

Best wishes

Gill

[Ashley]

i for one am very interested in all that could help us with this illness.

Hi Gill,

I am more than happy to talk about CBT if you would like to listen to more about it. It is not easy and involves hard work on our part, but I and others can show that it the effort really does show rewards.

Ashley.

[daisy]

Hi Ashley,

Thank you for your offer,but i have over the years had CBT and i have put the hard work in but unfortunately it hasn't helped me,i am still seeking treatment though and have to see someone tomorrow for counselling as i have been told that due to my deep depression and guilt issues that is why CBT didn't work for me.

I do know though that CBT does help a lot of people.

Would you mind if i sent you a PM sometime as i really am in a state at the moment and do not know what to do for the best.

Best wishes

Gill.

[Ashley]

Hi Gill,

I think it is important to remember that CBT is like learning to drive, sometimes a different instructor and course of lessons can help a person pass their test. I would be more than happy to receive a PM from you and happy to help you access more specialist CBT on top of what you may have already had.

Ashley

[daisy]

Thank you very much Ashley,i would appreciate your help.

[Guest Tricia]

Their are VERY serious risks with CBT too as people can become very anxious and suicidal just like meds can be too.

Although I do believe meds should be the first line of treatment I also believe that when you feel you've exhausted all avenues then having other options out there to consider is surely a positive. (Especially if you have no quality of life anyway)

I don't think we are supposed to say that CBT can have a negative effect, and I believe Professor Salkovskis has said it's never been known to make anyone worse. However, that is clearly not true. One of my good friends was almost pushed over the edge by her therapist. Not all therapists are good, something I know this charity does appreciate. Also, we all react very differently to exposure.

Ooh very touchy and confrontational, not setting a great example for an OCD charity CEO, think your attitude would be more off putting to users rather than alternative ways to 'possibly' a reduction in their illness.

I think I'll take the hint and leave this forum but thanks everyone for your great advice and interesting posts and hope you succeed in your battle to best this terrible illness.

I truly hope you don't leave the forum.

[Guest BILLY-BIG-BANANAS]

HI EVERYONE,

I Must applaud the guys who are holding their ground on other forms of treatment for OCD, Especially TRICIA and DRFCn01 who I hope reconsiders and returns to this forum,

you are both putting up a very good case and I totally agree with all you say.

I Also have been reprimanded for using caps which for my ILLNESS is much easier, also been told of for being rude not sure where that came from just expressing my views

as everyone does on this forum especially when we don't all agree.

And no doubt I will be told of again!!

I Believe we should all be able to express our views as we see them, without being told in no uncertain manner that the site does not AREE!

I HONESTLY thought these sites where open to a full blown discussions, OBVIOUSLY with no swearing and personal remarks.

Well done to all those who stand up for what they believe in.

I Must end soon MR OCD is forcing me to do the stuff he makes us DO.

ONE last thing, I HOPE TO be having SURGERY within 3 months the ball has been rolling for over 2 years, there were unforeseen setbacks nothing to do with me, but basically

the clinical pathways had to be secured and as have been said it was really a step to making this option even more of an option. (I mean they keep making it a safer better option as technology gets better)

My surgery is now IMMINENT and NOTHING in this world including forums will make me change my mind, you see its not just my life its my 2 daughters as well, they want their DAD

back AND ARE 100% behind me.

Another reason my wait has been so long is they DO NOT do this procedure at the drop of a hat, they take a great deal of time and care in accessing the individual's circumstances and suitability,

I have had to put my case to many PROFESSIONALS along the way.

MY Preferred option is A CINGULOTOMY BUT I have a meeting which may or may not give me an option of DBS or other procedures.

Personally I am SCARED BUT also EXCITED.

Obviously along the way I have picked up on lots of info and experiences and am sure in what I am doing, one last meeting I hope, that I believe is just to get my final personal requirements.

I also am not doing this at a drop of a hat, some of the anti comments said (being someone who has asked the same thing to the people who do know) I find laughable.

Please let me say sorry if I have used to many caps or been rude I sincerely don't mean to, just having my views.

I will be back

B-B-B

PS - DRFCn01 DO come back you make a lot of sense, and also NASDAQ14 our German friend come back you have the knowledge! Hello TRICIA :original:

[Guest Tricia]

Hello Billy, So good to hear from you again!

All the very best of luck to you and your lovely girls.

I shall be thinking of you and please do keep in touch.

[Caramoole]

I Believe we should all be able to express our views as we see them, without being told in no uncertain manner that the site does not AREE!

The one little word in there that should be pointed out is ALL. So far as I can see no-one's opinion or posts have been censored, they have all had the benefit of view on a public forum....but if ALL should be able to express their views that also includes those who may not be in accord with you, don't you think? I also believe it is perfectly right and acceptable for the charity to state it does not agree if that is its belief.

There seems to be somewhat of a bias in what you feel is the right to express views.

Caramoole

[Guest BILLY-BIG-BANANAS]

O DEAR ME

IT was just meant (ALL) in general terms, I also never said anything had been disallowed.

How can I be bias, I have already done CBT Many years at many places with many therapists

sorry it does not work for me, and lots of others, But I believe it does work for others.

I try to put it in a mild way, by saying some can give up smoking some never can, and by the way

I did manage to give it up.

And I did say sorry before hand in my post just in case it got took the wrong way.

Kind regards

B-B-B

[Guest Tricia]

Billy, it's interesting you mentioned smoking, because my husband promised he'd quit before we married (35 years ago). He still smokes, but what I find so hard to bear is that he lies about it. Also, he said, in the past, if he stopped smoking I should stop my obsessions. I said the two are very different. One is an addiction and the other is fear-based obsession. Saying that reminds me of a therapist who told me he understands how it must feel to have OCD, as he has 'an obsession with Formula 1'. I asked if he dreaded facing it each week...! I know smoking is different, you become addicted and often there's no real pleasure (as with Formula 1, I presume) but just an awful craving. However, if the therapist was 'driven' to watch the programme it would be classed as addiction rather than obsession (unless he truly did fear it?!)

Anyway, I now know four people with OCD who have given up smoking and all said if only 'giving up' obsessions and compulsions were as easy. I realize quitting smoking is tough, but they meant compared with leaving fear and compulsions behind.

Over the years some people (without OCD) have compared smoking with OCD, and have said it's no different giving up either. Maybe you can explain better than I how different it is, as I've never smoked?!

Edited November 8, 2014 by Tricia

[Caramoole]

How can I be bias, I have already done CBT Many years at many places with many therapists

Sorry you've misunderstood me I wasn't referring to being biased about DBS v CBT. I was simply pointing out that others (including Ashley/the charity/whoever) also have the right to voice their opinion, even if it's not in accord with your own.

[Guest BILLY-BIG-BANANAS]

I don't think!I suggested otherwise, everyone is entitled to their own opinion.

I think you might have misunderstood my comments!

Regards

B-B-B

[Guest Nasdaq14]

English Version

Hallo !

I haven t had a look at this site for a long time, until someone " found " me and my website in the internet and told me about it.

So I will try to clear some things.

Nobody who doesn't ´ t need an option and can be helped by CBT and / or medical treatment, should choose this way first.

But even in the German OCD Organization ( DGZ ) there is a mentioned a success rate of 80 % to the conventional therapy, even if completely used with best standards.

For only medical treatment , as also for single CBT the rate is about 60 - 65 %.

For those who don t benefit from these two ways and suffer for a long time AND very harmful, for those DBS is a real option.

And nobody should have the right to discriminate this people.

In my opinion this should be the right view, when thinking about DBS:

Everyone has to decide on his own what he is going to do, but for to get the right decision we need the right on fully information

- and this is what we should keep in mind thinking about DBS.

But it is also a matter of perspective, how to classify these risks.

The DBS is mainly applied in Parkinson's disease, essential tremor, dystonia and Tourette's.

The risks of DBS are the same in all of these diseases.

Hardly anyone had objections here to use them because they are organic diseases.

It is hard for many people apparently difficult to equate a mental illness in their effects a physical, and far more it is hard to understand, why people have this point of view, when having self this illness or deal with it.

This is unfortunate, because the agony can be equal.

When we talk about risk, then the risk of surgery is meant.

But is offset by the risk of doing nothing.

The psychiatrist Nuttin (1999) refers to the suicide - risk of extremely severe obsessive-compulsive neurosis with 20%.

Even psychiatrists of two very renowned German hospitals are following opinion:

"There are so bad cases of therapy-resistant obsessive-compulsive disorder, I would not hesitate to use the DBS"

(Source: German doctors Journal / Deutsches Ärzteblatt 2004 / 101 ( 39 ) Dr Pawelcik Chstoph - Dornier - Private CBT - Clinic Münster - Prof Kordon -- University of Lübeck).

Of course, there are at DBS also risks - as with any surgical procedure .

Much is talked about the risk of bleeding in the brain, called Intracranial hemorrhage ( ICH ).

Now, when you read, as some people mention, there is a risk of 2 % , you have to know not every bleeding is a serious bleeding, as in other surgeries also occur.

The question is, which of these ICH are dangerous and have permanent outcomes ?

The risks of DBS were published in two large studies - the one with the full text you can find here: It covers about 487 surgeries.

There are 2 large studies of German hospitals, one covering 5 centers with about 1.200 patients published in 2006 , and one covering the University of Cologne from 1996 - 2003, covering 497 surgeries

Remember that this is a long time ago, and that surgical techniques have become even far better:

For those , who don ´t want to read the full study - In the Cologne study there was only one serious adverse effect with ICH, which even had nothing to do with the surgery itself.

Read in English here:

J Neurol Neurosurg Psychiatry. Jul 2006; 77(7): 868–872.

Published online Mar 30, 2006.

doi: 10.1136/jnnp.2005.081232

PMCID: PMC2117492

Deep‐brain stimulation: long‐term analysis of

complications caused by hardware and surgery—

experiences from a single centre

J Voges, Y Waerzeggers, M Maarouf, R Lehrke, A Koulousakis, D Lenartz,

and V Sturm: Complications Caused by hardware and surgery-
experiences from a single center

For those , who don t want to read the full article.

In all the surgeries done, there was only 1 ICH, which even was NOT caused by the DBS itself.

For the German multicenter - Study I talked to the leading neurosurgeon here in Germany, Professor Volker Sturm, former Director of Neurosurgical an Stereotactic Clinic at the University of Cologne, who was involved in the study, and I quote him:

" The cases of mortality ( 5 of 1.200 ) in the multi - center German Study were all cases of very old Parkinson Patients ( means 80 plus ) and one case of very complicated multiple Sclerosis - cases where this was the only chance, and with patients we would accept today no more - according to their overall condition, especially regarding their brittle blood vessels. "

"The risk of bleeding is extremely low - it
lies in our clinic at 0.4 percent. And
the history of bleeding were almost exclusively
affected elderly patients "

( Source: Gehirn und Geist 2008 -- Interview Professor Volker Sturm )

I wish everybody the best treatment.

Nasdaq

Edited April 19, 2015 by Nasdaq14

[Guest Tricia]

So good to hear from you, Nasdaq! I hope you are doing as well.

I don 't have time to reply as much as I'd like today, but will return tomorrow.

I wonder why the suicide rate is played down so much. I know of three people who have taken their lives due to OCD and I certainly made several attempts on my life. And yet so many professionals insist it's rare.

For the first time in many years I have hope, and the neurosurgeons I have spoken to seem optimistic that DBS is effective for OCD. However, hearing your experience is even more valuable

Somewhere on this forum it was claimed that the risk of haemorrhage was 10 percent. I knew this figure was incorrect.

I have no life now and haven't had for over fifty years. Some refer to such a procedure as barbarous. I could not disagree more. It can give people a life and end the torment.

Thank you, Nasdaq!

Best wishes,

Tricia. .

[daisy]

Thank you Nasdaq for this information.

How are you?

Warmest regards.

Daisy.

[Guest Nasdaq14]

Have to add something to the reports from the releases I mentioned .

Since that time ( 2006 ) technique has bettered in several factors:

The methods, the techique and the knowledge have developed very much:

- 2 probes now versus 1 probe former times

- every probe covers 8 elctrodes instead of 4

-every electrode now can be not only turned ON / OFF but can be programmed to work in percentage changes ( i.e 50 % , 55 % )

- better sreening ( MRT ) methods

- better targeting, when it comes to a mixture of several problems ,i.e OCD and Aanxietxy disorder is a slighltly other target than only OCD.

This should also mean that chances have become better and riskd lower -. and that the success even appears faster and / or better.

" Now one guarantees that it will work in your case , but without it,but a fewteratment - resistant people are nearly guaranteed that nothing will get better "

Best Wishes

Nasdaq

[Guest Nasdaq14]

Thanks Daisy !

Accordingly to OCD I am very well - best standing sincs 35 years.

Sometimes there are " little " attacks - which I mostly can withstand.

But overall Daily Function dealing on DBS is very fine.

Best Wishes

Nasdaq

[Guest BILLY-BIG-BANANAS]

Welcome Back Nasdaq

I AM RIGHT BEHIND YOU!! my pals, and yourself know exactly what i mean by that!

Incredibly some not a million miles away want to campaign against DBS in the UK. - My opinion to that is EVOLVE!

There are more success stories to be told I'm SURE!!

I know i am not alone when i say THANK YOU for your time,knowledge and first class input.

How does it go - VORST-SPRUNG-DIRK-TECNIQUE How's that for my limited German

Out of 10 please.

Good luck my friend

I WILL BE BACK

BILLY-BIG-BANANAS

[Caramoole]

Incredibly some not a million miles away want to campaign against DBS in the UK.

I don't think it's so incredible that some want to be certain that a balanced view, considering all aspects of treatment, is shared. Just as some contributors wish to air their opinion, it baffles me that they complain when others do likewise.