Jump to content

Deep Brain Stimulated New Member


Guest Nasdaq14

Recommended Posts

Guest Nasdaq14

Hello !

I am from Germany and after using the chat since a while I thought why not take part in the forum also.

This espacially because iI got a not " everyday " treatment 10 years ago - I was one of the first patients treated with Deep Brain Stimulation ( DBS ) in Germany and maybe I would someone who has also made this experience ( there are n t so many as you might imagine ).

The treatment was really successfull.

As you may imagine I was a really " Hardcore - OCD " Case, suffering for 35 years on it, with 5 years extremely - having a nearly 20 hour OCD ( Repettive Compulsion mixed with thoughts.

Nowadays I would say that I am 70 -80 % cured - what a feeling - no discussion what that means for the quality of life.

On the other hand I thought I could perhaps help the one or other person, who ist interested in the theme and may answer some questions.

I hope you will show some goodwill on my humbling English there ( and here ) or even better you can send me some advices for, to do better in grammar and formulation.

Last but not least : Let me say DBS is not for everybody and i am not on a mission to make people believe this

So I wish everybody a good time

Nasdaq

Edited by Charlotte
Removed links
Link to comment
Guest BILLY-BIG-BANANAS

I am new today, long long term treatment refractory, nothing really worked for me.

Sorry to make this intro brief but I have ocd to contend with, I hope to have more

Time to do normal things tomorrow,

However I am very interested in what people now from personal experience of dbs and even more interested in cingulotomy surgery, especially personal outcomes and the way the whole process.

Please give your valid honest opinions.

Thank you all

Link to comment
Guest BILLY-BIG-BANANAS

Hi

Just read this but have to do my ocd right now, i am very interested in what else you can tell me

So I will be back in touch very soon.

Thank you

Link to comment

Ok, here is my honest opinion. All of these treatments you mention have been talked about for years, and there is still absolutely no evidence that a) any kind of neurosurgery offers long time recovery from OCD, many that report progress also report it being short lived. b) there are immense risks involved from all forms of neurosurgery.

The risks of neurosurgery are still far too great in my opinion to be considered when the trade off of recovery offers such little evidence that progress will be made.

I don't believe anybody is treatment refractory, I believe it just means they have yet to find the 'right' person to help them move forward. Please do feel free to message me about your past treatment history and I would be happy to make suggestions about further options available to you.

Kind regards, Ashley.

Link to comment
Guest BILLY-BIG-BANANAS

I have suffered for 35+ years

2 2 X IN PATIENT CBT

3 lots of out patient cbt

4 More drugs (all with side affects) than I can list or remember, many of which were augumented, with not pleasent outcomes, including clomipramine,estalalipram and just about every ssri there is and MOAI'S

5 Also paid myself, for hypnotherapy, acupuncture, homeopathy and other out of this world stuff.

6 All while or during medical nhs care.

7 ECT MORE THAN ONCE

8 Many drug trials (official)

9 Many years at a specialist ocd treatment centre (nhs)

10 I also do know of person or persons who have undergone surgery and have had a - in thier words a 97% improvment,six years going well.

11 it does work, maybe not for everyone and maybe not to such a high percentage, but worth considering if like me, your life and families life have been taken away, after all we are all mature concenting adults and if your loved ones / professionals agree who can disagree.

12 The criteria for gaining access to this surgery, I believe is far far tougher than gaining access to your very good and informitive list of specialist ocd centres, which I agree are very good,and do outstanding work and give great support and treatment for us sufferers but not everything works all the time for everyone.

- at my age (not young) there is not much time left to enjoy what is left for

me and my loved ones.

14 If I have not found the right therapist by now, something is wrong with me or the right one has not been trained yet,

15 ALSO not every human is capable of undergoing or being able to complete a Heavy course of Cbt

Not every one is strong minded, dare I say not all can give up smoking, but some can.

16 I lost my wife to cancer many years ago, no this did not contribute to my disease I had it before.

Sorry if I have sounded a bit harsh but times are hard and desperate, if you have more options I hope they work quick as the time at my age I have left to do long term therapy is getting less,

I would like to avoid spending the rest of time in some therapy or another

17 Please bear in mind my ongoing years and what I have been through already.

I am sorry I can not disclose my age,the surgery outcome's I mentioned and any other dates and places

As I am very conscious of other people and places confidentiality, Not to mention my own personal data.

I have also undergone 2 other major surgery events, which were made much harder because of ocd and my contamination part of ocd.

Thank so much for your time and thoughts, I mean this sincerely

Kindest Regards

Link to comment
Guest BILLY-BIG-BANANAS

HI ONCE MORE

I mentioned 2 other surgery events these were nothing at all to do with ocd or nuerosurgery

Just wht some of us have whn age creeps up.

Bye again

Link to comment

Fair comments, but I just hate the thought of someone risking all on a risky procedure with no guarantee of any kind of progress, but lots of risks of increased problems on top of OCD. That's the reality of DBS right now, the risks are very real.

I am reminded of a chap I spoke to on the phone last month, Eric, he is in his 80s, had OCD for 50+ years and was lucky enough to get treatment with an OCD specialist (Brynjar) at the Centre for Anxiety Disorders and Trauma (CADAT) this year. Brynjar helped this chap so much, his OCD is no longer impacting on him at all, he even leads walks through London now for people of his age group.

Before you go down the surgery route I encourage, even urge you to please try and access more CBT through specialists in London and Bristol.

Link to comment
Guest BILLY-BIG-BANANAS

THANKS FOR CONCERN,

SO FAR NO DEATHS FROM CINGULOTOMY, AS FAR AS I KNOW.

SOME SIDE EFFECTS, GENERALLY ONLY LAST FOR A FEW DAYS, AND DEALT WITH UNDER POST OP CARE.

THESE MAY BE HEADACHE, TO BE EXPECTED I WOULD THINK!! / SLIGHT CONFUSION / MILD BLADDER CONTROL, (LACK OF)

SLIGHT MEMORY LOSS, BUT AS I SAID FROM DATA READ THESE AND MAYBE SOME I FORGET ONLY LAST FOR A SHORT TERM!!

THERE ARE OBVIOUS SERIOUS ONES, LIKE BLEEDING ON OR OF THE BRAIN WHICH COULD AMOUNT TO DEATH, BUT NOT YET AS

FAR AS I KNOW.

I ALSO BELIEVE DEPENDIND ON PERSONAL CIRCUMSTANCES, YOU MAY ALSO HAVE TO BE INVOLVED IN AN IN OR OUTPATIENT

CARE PROGRAM, WHICH WOULD CERTAINLY INVOVE CBT, SO TO HELP ADJUSTMENT AFTER A LONG TERM ILLNESS, (POST OP)

DEATH CAN AND SERIOUS PROBLEMS CAN RESULT FROM ANY MAJOR SURGERY, THATS WHY WE SIGN A CONSENT FORM,

ITS A RISK WE TAKE WITH ANY OP BIG OR SMALL.

THE PRECISION TOOLS AND EXPERTISE INVOLVED TODAY ARE FAR BEYOND MY SCOPE BUT ARE THE BEST THERE IS, AND ARE

USED TO MAKE THE OP AS SAFE AND WITH THE BEST OUTCOME POSSIBLE.

NOW SORRY TO BE BLUNT NOBODY WANT AN INCISION MADE IN THEIR HEAD BUT OCD AT ITS WORST (ME) IS AS BAD AS ANY PHYSICAL

ONE.

ALSO YES YOUR MAN 80+, I'M NOT SURE I CAN WAIT THAT LONG OR EVEN LIVE THAT LONG AND IS JUST ONE MAN , TRUST ME I AM NOT BEING NEGATIVE, I HAVE SEEN

MANY THERAPISTS ALL AGES ALL SEXES FROM MANY COUNTRIES, AND BECAUSE SOME PEOPLE GET A GOOD RESULT FROM A CERTAIN ONE

IT DOES NOT MEAN IT WILL WORK FOR THE NEXT POOR SOUL, BELIEVE ME I HAVE BEEN THERE AND BEEN DEVASTATED AT NOT BEING HELPED!!

BY A RECOMMENDED AND PROFESSIONAL SOURCE, NOT TO MENTION CURED. (THIS ACTUALLY MADE ME WORSE) AND FELT LET DOWN AGAIN.

ALSO THERE IS, AS A LOT OF PEOPLE WILL HAVE THOUGHT THE POSSIBILITY OF NOT COMING OUT OF THE OP -- WELL NOT AS THEY WENT IN -- SAY NO MORE.

A RISK I ADMIT BUT AS I HAVE SAID SO IS LIFE.

I HAVE NOT BEEN ABLE TO HUG MY KIDS SINCE (I CAN NOT REMEMBER) - CONTAMINATION

I AM LIMITED TO 3 ROOMS IN OUR HOME - FEAR OF CAUSING DAMAGE OR SIMILAR

I CAN NOT USE MANY NORMAL EVERYDAY ITEMS

I HAVE NOT BEEN NEAR MY FRONT DOOR FOR MANY MONTHS LET ALONE THROUGH IT

I SPEND COUNTLESS HOURS EVERY DAY CHECKING COMPLETELY UNNECESSARY SAFETY ASPECTS

MY KIDS CARE FOR ME BEST THEY CAN AND HOLD DOWN FULL TIME WORK. AND ARE NOW MATURE ADULTS

AND YES IT HAS GREATLY LIMITED THEIR LIVES AS WELL, BUT THEY ME LOVE ME AS I DO THEM AND THEY WOULD HAVE IT NO OTHER WAY

SO AFTER IN MY HUMBLE OPINION A TORTUROUS LIFE OF TRYING JUST ABOUT EVERY THING TO BEAT THIS DISEASE, I AM

TRYING TO GET OTHER OPINIONS ON MY VENTURE THATS ALL.

THIS OP I SPEAK OF IS MAINLY ABOUT CINGULOTOMY,BUT DBS AND THE REST HAVE VERY MUCH THE SAME OUTCOME

AND IS NOT CLASSED AS A CURE UNLESS YOU ARE VERY VERY LUCKY,

BUT A POSSIBLE REDUCTION IN SYMTOMS, WHICH COULD ENABLE ONE TO GO ON AND MAKE A POSSITIVE RESULT OF CBT.

AS WITH ALL OPERATIONS, SOME ARE MIRACLES, SOME ARE JUST GOOD, SOME ARE OK, SOME ARE NOT SO GOOD, AND SOME ARE BAD.

THANK GOODNESS WE LIVE IN A COUNTRY WHERE WE HAVE SOME CHOICE.

MY KINDEST REGARDS TO EVERY ONE.

I WILL BE BACK

Link to comment
Guest Nasdaq14

Hello , I mentioned myself some posts ago, it seems that there are no links allowed here.

I have been treated by DBS 10 yeras ago, and i am around 80 - 90 percent free of it since some years.

I have tried to translate the two main sites about it, and will now post them here , instead of the link, hope it helps you to get an idea of it and for your personal decision.

Part 1 is my own story - Part 2 an interview with the leading german neurosurgeon.

This ist he first version oft he translation of my own 10 –years- experience in Deep Brain Stimulation in case of Obesessive – Compulsive Dosorder.

Please be patient about the mistakes in writing an grammar and send me a note how to do it better.

Maybe you are a translator or professional I would be very glad about any help to translate the other Sites , too.

Thanks to everybody helping.

There are many videos and pictures on the German Sites, which are self - declaring - please use them.

Me – A Deep Brain Stimulation Prototype

Hello , my name is Mr. N.

Today I am 50 years old, I have mixed obsessions and compulsions for 35 years and live lived since 10 years with a probe in the brain against OCD.

In my case OCD onset was at he age of 14.

It began with pronounced washing compulsions , later, the symptoms changed over and over again , sometimes I had under control compulsions , obsessions and almost always suffer with repetition compulsions.

The course has always been highly variable , sometime in the 90 years I consulted for the first time a therapist , but find no promising way by their advices.

Finally , from 1999, my OCD “ exploded “ and forced their way into more and more areas of my life :

There followed the usual path : antidepressants, 10 different SSRI , 6 weeks stationary treatment ( very humbling ) , immediately followed by two years outpatient therapy site (which really followed all the rules of art) but it went steadily downhill .



In 2002, my compulsions looked like this:

• Every day 18 to 20 hours obsessions and compulsions

• A maximum of 5 minutes between individual compulsions

• I could only watch one TV channel

• Almost every food was “ forbidden “, because it was connected with negative thoughts..

• For a walk of 200 meters I “ kneed “ up 50 times or walked back because of obsessive thoughts.

• I slept only without undressing, because it was too strenuous to do this because of my repetitive compulsions

• getting dressed in the morning before going to work up to 20 reps per garment , a total of 2 hours.

• Driving in a section of 15 km took 2 hours, and in record 6 hours. As a consequence, I could not drive a car the next 5 to 6 years.

• There really was no area more (even to burn a simple CD) , which was still working without force .

Some time later , the system totally changed in a kind of avoidance behaviour:


• Instead of two hours to take a shower , I did not take a shower for eight weeks , I no longer shaved and had a 20 cm long beard. A little earlier I had started drinking to get some rest in my thoughts.

In my worst time, it was half a bottle of brandy a day.

First Informations - A New Method s Starting Up

End of 2002, I saw on TV a report on the first deep brain stimulation (DBS ) in Europe , and read a short time later that the University Hospital of Cologne offered for the first time DBS for appropriate patients suffering in OCD in a study.

4 months later it was done: I called the neurosurgical department in Cologne, got within 14 days of a date for a preliminary discussion with the Director, Professor Sturm.

Professor Sturm explained the operation and that that the chances of success would be between 60 to 70% , and I had previously to undergo a series of tests in psychiatry.

My decision to try out this method, as a way calming the OCD, was already made on the same day.

The first point was, that I had tried out all the other methods already unsuccessfully - and OCD even had dramatically worsened.

An important criterion was the question, whether I and my family would hold this state for a how long ?

Specifically , the aspect : Would I ask me later not always the question of what would have been, if I had the surgery been carried out ?

On the other hand Prof. Sturm was a personality who awakened in me the greatest confidence:

All I had read about him, was that he was a brilliant neurosurgeon.

Besides that he understood the psychic aspects better than a lot of psychologist I had met over the years.

And a very important aspect: He was very empathic, I got the feeling that there was a person who really understood the suffering, and not only a high – class researcher.

Here, you have to know that I 'm really not a person who uncritically accepts immediately what is being said.

Then , unfortunately, still followed a one-year waiting period : On the one hand , it took a half of a year until I got an appointment in psychiatry for the testing, on the other hand , because the operation had to be approved by the Ethics Board.

After a battery of tests from 1 week in the summer of 2003 in February 2004 I got the call : After further testing and meet the qualifications I would be operated.


The Criteria to become a DBS patient here ( in Germany ):

The patient must be beyond treatment , all other therapeutic options must have tried out and failed.
There must have been a minimum of two inpatient treatment attempts .
It must have been tried on an outpatient therapy.
It must have sufficient drug tests be carried out , which means 2-3 different medications over a sufficiently long period of time (minimum 3 months) and a combination of two drugs .

The disease must be severe , according to a YBOCS - value around 30.

There should be no suicidal thoughts.

The most important advantages of DBS: Exact Regulation and complete Reversebility

Very impressing for my decision for the DBS was the fact that it is a reversible procedure that does not cause tissue damage.

In addition, there are several configuration options with which the effect and side effects may also be regulated.

After setting up, following the surgery , the doctors have the ability to change the operation of the probe from the outside with a programmer: So the four poles can be controlled differ depending on the probe and the result can be optimized. The current can be adjusted to different degrees .

The patient is given a handheld device, with which the patient could regulate the strength od stimulation by himself ( within specified limits ) or even turn the stimulation on and off

Especially this point is important for me, because I can decide for myself what is currently "right" for me. The feeling of being able to influence the action itself, gives me great security.


The Operation s Day

It has been implanted into the deep brain , a probe with a small bore, for me in the vicinity of the nucleus accumbens , as at a depth of 15 cm.

The probe is powered by a battery with the continuous current pulses , wherein the battery is located above the chest muscle and is attached to a cable under the skin with the probe.

The OP took a total of just under 8 hours with me still fully conscious, today on request under anesthesia.

In fact, eight hours listen much worse than it actually is , because most of the time is spent on preparation for the operation and, very important the evaluation of the brain images to find the optimal path towards the target.

In my impression the implant of the probes itself took about half an hour.

The next step, the implant of the stimulator in the chest and attaching the cable and connecting it to the probes is done under anesthesia.

Anyway: Two hours after surgery I was on my feet again without any pain.

The operation and it s effects

Each patient wishes that an effect will occur immediately.

However, this was not the case, could hardly be the case when I am looking back upon the special circumstances in my case

Because this was a study in the following first six months the stimulation was turned on and off every six weeks, without anybody knowing, when which phase took place.

This was done, to look, if there were any placebo – effects or not.

This also meant that no optimization of the parameters ( like strength of stimulation or rate of impulses and different use of the four poles of the probe ) could be done.

For me, more mental stress were added:

The health insurance forced me immediately before the operation to apply for retirement (which also took place ) , which resulted in a fully change of my daily life from 60 hours per week employment to zero.

Everyone suffering in OCD may be able to guess what happened:

There was a “ vacuum “ which was like a gift for my obsessions and they filled it thankfully out at once.

And if this was not enough:

My therapist finished immediately after surgery , against the advice of the clinic, its treatment , since he , in his words, " not wanted to be instrumentalized by the clinic ".

This was particularly notable, because the hospital had made no specifications, but fully approved to continue threapies for better success.

Under this special circumstances the following two years showed no improvement in my case.

On the other hand I heard from fellow patients , they were able to drive for the first time after 15 years 3 months after surgery.



The Brain – Revolution Begins

Approximately 3 years after the surgery I took a first radical attempt to try something , and after 5 years of " non-car - driving - ability " , I completed a distance of 120 kilometers alone.

It was the first , but huge success , even if I do the following day had a terrible aching muscles in the hands . From then on, I noticed car driving became much easier day by day.

The best words I can find to describe felt less and less " initial obsessive pressure " and after about 3 months there were only about maybe 10 % of the compulsions.

Freed from this, the other obsessive compulsions continued to exist in full strength.

The next thing came in, was that I could eat food without obsessive thoughts , a little later, I was also able to watch TV shows that had previously triggered a compulsion immediately.

The longest I needed to get the reps by walking on the street under control.

The strangest thing about this type of improvement was that each individual obsessive / compulsive area had her “ own time “ but then fell in a relatively short time

I often get asked the question if my "personality" has changed , this I can fully deny .


Today's condition is that I am about 75% free from OCD.

Outside the house , or when I am among many people , I feel only two hours after a certain compulsion urge.

The general success rate according to my research is between 60 and 75 % of an improvement , which is a veritable opportunity when you consider that DBS is only practiced to patients who had no success in several therapy and medicamental treatment – so called “ treatment –resistant “ persons AND which suffer dramatically.

By the way “ Improvement “ is defined in the way, both when using the Cognitive Behavioral Therapy and the DBS by reduction in OCD at minimum of at least 35 %.



And people who don ´ think an evaluation of 35 % is a success, are , in my opinion not sufficiently sick enough.

35 % fewer OCD meant for me alone at the time measured at 6 hours without OCD and a huge profit, just from zero hours before.

The win of the so – called “ Quality - of - Life “ is several times higher than the percentage of improvement does express it.

Todays Technological And Scientific State Of Art

Taking the technical surgical experience , around 100,000 DBS were made (Source: Medtronic ) mainly in the area of origin of DBS , Parkinson disease, until 2014.

In psychosurgery area, numerous universities around the world work with this method, which are estimated to be around 400 to 500 cases. The success rates there is also 65 to 75%.

In the meantime operation techniques and methods have been further developed and also the technical hardware - the stimulators and the probes have.

I got implanted only one probe ( unilateral ) , nowadays worldwide the implantation of two probes ( bilateral ) method is used.

The devices have become smaller, and there are more possibilities in programming them than before.

In case of the probes there are new models, different in material, there are models of probes with eight instead of the former four contacts.

And, the major success in technique is, that nowadays it is possible to control and program each single contact differently.

All together means more possible options and maybe looking forward to a higher number of successful operations with a faster evaluation.

In November 2013 the first DBS – System was implanted at the University of Würzburg, which not only stimulates the brain region, but also sends back information to the device for further research.

Obviously this was a patient with essential tremor, OCD is explicitly named as one of the future areas of application.



Meanwhile, depression, alcoholism and drug addiction are treated with early successes in the research stage . Initial studies on Alzheimer's treatment are planned in Toronto and success in the treatment of anorexia could be achieved.


Important to Know

Deep brain stimulation and the classical therapies or drug treatment do not compete : only when all other options have been exhausted DBS is an option.


Even after surgery is another therapeutic support and even a first retaining a possible medication desirable since the OP can not just flip the "Forced Switch".


That I today assess the decision to DBS very positively is crystal – clear.

But there is one fact that annoys me very much and partly makes me really angry

Still, 10 years after starting research in DBS for OCD a lot of “ professionals “ – most of them psychologists - reject the method and worse - for no reason.

They advise against the method to their patients without knowledge of the results, or even when knowing them, in defiance of research results.

In many cases, I got the feeling they just see sometimes DBS as a competitor to their “ classical “ methods but as we learned, this is not correct: It is an additional method, when other treatments are tried out without success.

The tragic component for me is that according to a study , one in six hard forced OCD patients kill themselves ( Nuttin 1999) and I have made this experience twice before surgery and would probably not be here
today , if no improvement had taken place.

Part 2

Interview with Professor Sturm, Senior Professor of Neurosurgery and Stereotaxy at the University Hospital Würzburg and one of the leading surgeons in the context of Deep Brain Stimulation in Europe.

He was the clinical director of the Department for Neurosurgery and Stereotaxie at the University of Cologne for more than 20 years.

Professor Sturm was one of the world's first medical doctors who performed DBS in Obsessive-Compulsive Disorder ( OCD )

He was awarded the Erwin Schrödinger Prize 2007 for further development of Deep Brain Stimulation ( DBS ).

The Interview was made in August 2013

“The bright future of brain stimulation is according to Prof. Sturm in the treatment of severe psychiatric disorders, which are non treatable with conventional methods, as well as obsessive-compulsive disorder, depression, Tourette's syndrome, dementia and addictions. “



Quote from the press of Jörg - Bernard - Foundation

---------------------------------------------------------------------------------------------------------------------------------------------

Question:
Professor Sturm, how long do you treat OCD using Deep Brain Stimulation ?

Prof Sturm:
Personally I look back on 11 years of experience in the field, added about 1000 Deep Brain Stimulations in Parkinson's Disease.

Question:
What are your experiences according to the rate of success of a DBS in OCD.

Prof Sturm

The success - rate of a significant improvement is about 65-70%.

It must be borne in mind in particular that it corresponds to a measured symptom improvement by let's say 35% of an incomparably higher quality of life.

One can say that, if successful, the patient again is suitable for everyday use, but we also had cases of complete healing.



Question:
What conditions must be present for a patient for a DBS is in Question?

Prof Sturm:
A long-standing severe obsessive-compulsive disorder.

Furthermore, intensive cognitive behavior therapies must have taken place, both in form and in an outpatient of a recognized, high-quality inpatient therapy.

In addition, drug treatments with SSRI's and antidepressants at a sufficient dose and duration must have been tried.

Question:
How to you determine whether a DBS can be done or not?

Prof. Sturm
This is done in close cooperation with our psychiatric department, which also conducts the preliminary investigation and decides on the basis of their investigations on the suitability of the patient and accompanied the therapy optimization closely.

The neurosurgeon never has too meet - an also cannot meet – this decision alone.

In addition, an indication is given by the clinic is a legal requirement in Germany and not questioning the competence of the referring physician.


Question:
How can we imagine the effect of the DBS?

Prof. Sturm:
The brain works mainly in the form of networks and control circuits.

These control loops function due to a possible predisposition and environmental influences - even psychological - no more in a correct way.

Based on our operating results, we have the hypothesis that certain circuits - are highly “over - synchronized “ and thus "over-react" - in this case between the deep brain and the frontal lobe.

What we do is this sickening rhythm to replace by our stimulation at 130 Hz - without destroying this circuit or even any brain tissue.

Question:
Since the beginning of research and first DBS more than 10 years have passed.
What technical / operational developments there since the first time and today?

Prof. Sturm:

At the beginning of the research around the millennium we have explored in the research network with other hospitals of different variants of the DBS in studies.

This we succeeded, by determining the best target area, by varying the flow parameters and the turning of the unilateral brain stimulation for implantation of two probes to improve the duration and quality of onset significantly.



Question:
Meanwhile, the health insurance companies in Germany cover the cost of DBS in obsessive-compulsive disorder: What does this mean for you?

Prof. Sturm:
This is a very big step forward and shows that the assessment, validation and recognition of the method has very positive developed.



Additional Question:
Would you evaluate this as a kind of seal of quality with regard to the method?

Prof Sturm:
Sure



Question:
Is the part of the DBS postoperative care in the context of therapies desirable, and are there any guidance from the clinics.

Prof. Sturm:
This is a very important question and I am glad that you ask for it.

This is more than desirable.

The brain pacemaker creates the conditions that the control loops function again.

Behavior therapy can then work again, even if it wasn ´ t successfull before, because the neurophysiological conditions are newly created to allow this to take effect again.

That would promise a significant acceleration of healing.

It is roughly comparable to a hip - operation: Here we got regularly a rehabilitation - phase around to build the muscles again and to optimize the recovery process.

The behavior therapist is absolutely free in his treatment – there are no “ orders “ of how he has to work by the clinic.

Prof. Sturm, thank you very much for this interview.

--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

In my personal opinion most critics are about the risks, which be the way are very much lower than using cingolotomy, because DBS is completely reversible.

Then some authors ( mostly psychologists ) target, that there are no controlled long term results - on the other hand i ask myself if there are any long term studies for a CBT ?

Yes a brain surgery is not without risk, ( the rate of comolication is around 0,4 % inclusive those of corrupted cable, allergy and not only death cases ) BUT living with an extreemly OCD has also risks, if you know what I mean - I had myself undergoene this " risks " two times before surgery.

Possibly you might find teh original site by Google - in German we call DBS - Tiefehirnstimulation.

Don ´ t now, if you can answer me here directly via email or whether it ist allowed to post my email here - if not i try to have look at this post.

If it is possible to mail me, i surely will answer you every question I can answer.

Take care of yourself !

Best Wishes

Nasdaq

Edited by Nasdaq14
Link to comment

There is a lot of text there, I do not have time to go through all of it but I want to pick up on two parts of the text.

The Criteria to become a DBS patient here ( in Germany ):

The patient must be beyond treatment , all other therapeutic options must have tried out and failed.

There must have been a minimum of two inpatient treatment attempts .

This is perhaps a similar criteria for trials here in the UK recently. However, it is a loophole that I intend to challenge with the NHS to ensure the wording is changed. A patient may have had inpatient and outpatient treatment, but that does not mean anything if the treatment providers are not experts in OCD.

Before a desperate and vulnerable patient undergoes this expensive and DANGEROUS procedure, we need to make sure they have undergone safer and less invasive psychological treatments with (IMO at least three) specialist OCD clinics.

Now the reason I am so against all neurosurgery is the rubbish reported by the Dr's that it is a relatively safe procedure. Even Dr Matthews in Dundee who do conduct these procedures wrote in a report to the Scottish health board that it should not be taken so lightly.

DBS has been around years now, and different surgeons target different parts of the brain. The fact is they simply do not know if or why this works. If it was successful over the last 10-years, trust me we would know more about it.

The most important advantages of DBS: Exact Regulation and complete Reversebility

Very impressing for my decision for the DBS was the fact that it is a reversible procedure that does not cause tissue damage.

In addition, there are several configuration options with which the effect and side effects may also be regulated.

It is not reversible. If the procedure causes bleeding on the brain, epilepsy or seizures, you can't always reverse those. I understand there is some drilling into the skull, so to suggest there is no tissue damage I find hard to believe.

If you are lucky enough to survive the original operation then you then face further problems when the battery needs replacing.

In my view there is not enough evidence yet to justify DBS.

Link to comment

Just a note BILLY-BIG-BANANAS,

I am not sure if you are aware, but typing in ALL CAPS is considered shouting. Can I ask you to please use lowercase letters when typing which makes it much easier for those reading.

Thanks :)

Link to comment
Guest BILLY-BIG-BANANAS

PLEASE Lets not be picky and trivial, I am aware of this unwritten rule I am sorry if you think I am shouting at you or any body

I find it far easier to type in caps for personal reasons, MY daughter has told me about this, but does not mind

me using caps to speak on line with them, and you are the very first to pull me up on this. And I am exchanging mail daily with

all sorts of people. Never to be questioned on my computer skills.

I will however try! when speaking with Ashley to be very computer friendly.

But I CAN NOT do it all the time as typing in a computer friendly way takes me so much longer as did this note.

A NOTE to all other members if I type in caps I am NOT in any way meaning to shout raise my voice or anything similar

I am sorry if any one has been offended, but some of us are not as computer literate as Ashley is.

I do hope we are not to be pulled up on our spelling//grammar/punctuation/English language and general every day phrases and

abbreviations.

So if this is a new rule I will probably not write or post so much, never mind I was just getting the hang of this site.

Good bye and thanks

Link to comment

PLEASE Lets not be picky and trivial, I am aware of this unwritten rule I am sorry if you think I am shouting at you or any body

I was not being picky. It is not a new rule, it is a long-standing rule across most websites. Writing all in CAPS is really difficult to read on a computer, so many people may not attempt to read it at all. By pointing it out I was trying to help you which in return may help you receive more replies for future posts you may make.

Link to comment
Guest BILLY-BIG-BANANAS

Hello Nasdaq

Thank you so much for all your effort putting your info to us, I will read with very great interest, your input is just what I am interested in.

Please bear with me I need to get on with my ocd tasks right now, I know you will understand.

And I really hope you keep on top of things.

Thank you once more and have a good day.

B-B-B

Link to comment
Guest BILLY-BIG-BANANAS

I was not being picky. It is not a new rule, it is a long-standing rule across most websites. Writing all in CAPS is really difficult to read on a computer, so many people may not attempt to read it at all. By pointing it out I was trying to help you which in return may help you receive more replies for future posts you may make.

OK Fine

Link to comment
Guest Adam Samson

Hello Nasdaq,

Thank you for telling us about yourself and your experience of DBS. I am fascinated to read your story. Thank you. I am very pleased it made a big improvement for you. I wish you well with the rest of your life! :original:

Hello Billy,

I am intrigued that you had some ECT. I'm being very nosey but I would be very interested to hear more about that please. I'm not considering it for myself - I'm just very curious about the concept. Thanks.

Hello Ashley,

Billy's original question also mentioned cingulotomy. Is that procedure regarded in the UK as safer and more successful than DBS for treating OCD? Thanks.

Edited by Adam Samson
Link to comment
Guest BILLY-BIG-BANANAS

Hello Nasdaq,

Thank you for telling us about yourself and your experience of DBS. I am fascinated to read your story. Thank you. I am very pleased it made a big improvement for you. I wish you well with the rest of your life! :original:

Hello Billy,

I am intrigued that you had some ECT. I'm being very nosey but I would be very interested to hear more about that please. I'm not considering it for myself - I'm just very curious about the concept. Thanks.

Hello Ashley,

Billy's original question also mentioned cingulotomy. Is that procedure regarded in the UK as safer and more successful than DBS for treating OCD? Thanks.

HI Adam

thanks for your interest, I had ect about 30 years ago at my local hospital then, I enquired about with my then psychiatrist who was very amicable, and was open to suggestion's

even then I had jumped through may hoops and was keen to try what ever was on offer, it was generally used for depression but had helped small minority of ocd sufferers.

they put you to sleep, give a muscle relaxant, plug you in and that's about it, the idea is (I think is to Jump start you back to a better place, but please do not take this as FACT)

I Believe it works better for depression, it did not help me, BUT on one or two brief moments I felt like the world had been lifted of my shoulders, very short lived but a good feeling.

Just in case you wondering they give a muscle relaxant to stop you hurting your self as when they throw the switch your body has a violent kick a bout, I think I remember they also

strap you down, yes it does sound and probably is a bit barbaric but hey if it helps some one let it be.

I like to keep my options very open and non biased if I can, and try my best to see every body's point of view and with out doubt take on board other people's plight and try not to influence them

in any way, because at the end of the day I am just Joe Public Just like most of us.

your Q on Cingulotomy I have done and have good reason to have done a lot of research into this procedure and have met and talked more than once to more than one Medical Professional

on this and other types of invasive and non invasive procedure's and have made up my own opinions on lots of Q's and A'S, I won't answer your Q with my thoughts as you asked

some one else. But glad to help if I can, I may not reply very quick as I am very DOWN at present.

Please bear in mind some info might be limited as to my personal confidentiality and obviously Others.

All the very best AND sorry if I went on a bit

B-B-B

Link to comment
Guest BILLY-BIG-BANANAS

Hello , I mentioned myself some posts ago, it seems that there are no links allowed here.

I have been treated by DBS 10 yeras ago, and i am around 80 - 90 percent free of it since some years.

I have tried to translate the two main sites about it, and will now post them here , instead of the link, hope it helps you to get an idea of it and for your personal decision.

Part 1 is my own story - Part 2 an interview with the leading german neurosurgeon.

This ist he first version oft he translation of my own 10 –years- experience in Deep Brain Stimulation in case of Obesessive – Compulsive Dosorder.

Please be patient about the mistakes in writing an grammar and send me a note how to do it better.

Maybe you are a translator or professional I would be very glad about any help to translate the other Sites , too.

Thanks to everybody helping.

There are many videos and pictures on the German Sites, which are self - declaring - please use them.

Me – A Deep Brain Stimulation Prototype

Hello , my name is Mr. N.

Today I am 50 years old, I have mixed obsessions and compulsions for 35 years and live lived since 10 years with a probe in the brain against OCD.

In my case OCD onset was at he age of 14.

It began with pronounced washing compulsions , later, the symptoms changed over and over again , sometimes I had under control compulsions , obsessions and almost always suffer with repetition compulsions.

The course has always been highly variable , sometime in the 90 years I consulted for the first time a therapist , but find no promising way by their advices.

Finally , from 1999, my OCD “ exploded “ and forced their way into more and more areas of my life :

There followed the usual path : antidepressants, 10 different SSRI , 6 weeks stationary treatment ( very humbling ) , immediately followed by two years outpatient therapy site (which really followed all the rules of art) but it went steadily downhill .

In 2002, my compulsions looked like this:

• Every day 18 to 20 hours obsessions and compulsions

• A maximum of 5 minutes between individual compulsions

• I could only watch one TV channel

• Almost every food was “ forbidden “, because it was connected with negative thoughts..

• For a walk of 200 meters I “ kneed “ up 50 times or walked back because of obsessive thoughts.

• I slept only without undressing, because it was too strenuous to do this because of my repetitive compulsions

• getting dressed in the morning before going to work up to 20 reps per garment , a total of 2 hours.

• Driving in a section of 15 km took 2 hours, and in record 6 hours. As a consequence, I could not drive a car the next 5 to 6 years.

• There really was no area more (even to burn a simple CD) , which was still working without force .

Some time later , the system totally changed in a kind of avoidance behaviour:

• Instead of two hours to take a shower , I did not take a shower for eight weeks , I no longer shaved and had a 20 cm long beard. A little earlier I had started drinking to get some rest in my thoughts.

In my worst time, it was half a bottle of brandy a day.

First Informations - A New Method s Starting Up

End of 2002, I saw on TV a report on the first deep brain stimulation (DBS ) in Europe , and read a short time later that the University Hospital of Cologne offered for the first time DBS for appropriate patients suffering in OCD in a study.

4 months later it was done: I called the neurosurgical department in Cologne, got within 14 days of a date for a preliminary discussion with the Director, Professor Sturm.

Professor Sturm explained the operation and that that the chances of success would be between 60 to 70% , and I had previously to undergo a series of tests in psychiatry.

My decision to try out this method, as a way calming the OCD, was already made on the same day.

The first point was, that I had tried out all the other methods already unsuccessfully - and OCD even had dramatically worsened.

An important criterion was the question, whether I and my family would hold this state for a how long ?

Specifically , the aspect : Would I ask me later not always the question of what would have been, if I had the surgery been carried out ?

On the other hand Prof. Sturm was a personality who awakened in me the greatest confidence:

All I had read about him, was that he was a brilliant neurosurgeon.

Besides that he understood the psychic aspects better than a lot of psychologist I had met over the years.

And a very important aspect: He was very empathic, I got the feeling that there was a person who really understood the suffering, and not only a high – class researcher.

Here, you have to know that I 'm really not a person who uncritically accepts immediately what is being said.

Then , unfortunately, still followed a one-year waiting period : On the one hand , it took a half of a year until I got an appointment in psychiatry for the testing, on the other hand , because the operation had to be approved by the Ethics Board.

After a battery of tests from 1 week in the summer of 2003 in February 2004 I got the call : After further testing and meet the qualifications I would be operated.

The Criteria to become a DBS patient here ( in Germany ):

The patient must be beyond treatment , all other therapeutic options must have tried out and failed.

There must have been a minimum of two inpatient treatment attempts .

It must have been tried on an outpatient therapy.

It must have sufficient drug tests be carried out , which means 2-3 different medications over a sufficiently long period of time (minimum 3 months) and a combination of two drugs .

The disease must be severe , according to a YBOCS - value around 30.

There should be no suicidal thoughts.

The most important advantages of DBS: Exact Regulation and complete Reversebility

Very impressing for my decision for the DBS was the fact that it is a reversible procedure that does not cause tissue damage.

In addition, there are several configuration options with which the effect and side effects may also be regulated.

After setting up, following the surgery , the doctors have the ability to change the operation of the probe from the outside with a programmer: So the four poles can be controlled differ depending on the probe and the result can be optimized. The current can be adjusted to different degrees .

The patient is given a handheld device, with which the patient could regulate the strength od stimulation by himself ( within specified limits ) or even turn the stimulation on and off

Especially this point is important for me, because I can decide for myself what is currently "right" for me. The feeling of being able to influence the action itself, gives me great security.

The Operation s Day

It has been implanted into the deep brain , a probe with a small bore, for me in the vicinity of the nucleus accumbens , as at a depth of 15 cm.

The probe is powered by a battery with the continuous current pulses , wherein the battery is located above the chest muscle and is attached to a cable under the skin with the probe.

The OP took a total of just under 8 hours with me still fully conscious, today on request under anesthesia.

In fact, eight hours listen much worse than it actually is , because most of the time is spent on preparation for the operation and, very important the evaluation of the brain images to find the optimal path towards the target.

In my impression the implant of the probes itself took about half an hour.

The next step, the implant of the stimulator in the chest and attaching the cable and connecting it to the probes is done under anesthesia.

Anyway: Two hours after surgery I was on my feet again without any pain.

The operation and it s effects

Each patient wishes that an effect will occur immediately.

However, this was not the case, could hardly be the case when I am looking back upon the special circumstances in my case

Because this was a study in the following first six months the stimulation was turned on and off every six weeks, without anybody knowing, when which phase took place.

This was done, to look, if there were any placebo – effects or not.

This also meant that no optimization of the parameters ( like strength of stimulation or rate of impulses and different use of the four poles of the probe ) could be done.

For me, more mental stress were added:

The health insurance forced me immediately before the operation to apply for retirement (which also took place ) , which resulted in a fully change of my daily life from 60 hours per week employment to zero.

Everyone suffering in OCD may be able to guess what happened:

There was a “ vacuum “ which was like a gift for my obsessions and they filled it thankfully out at once.

And if this was not enough:

My therapist finished immediately after surgery , against the advice of the clinic, its treatment , since he , in his words, " not wanted to be instrumentalized by the clinic ".

This was particularly notable, because the hospital had made no specifications, but fully approved to continue threapies for better success.

Under this special circumstances the following two years showed no improvement in my case.

On the other hand I heard from fellow patients , they were able to drive for the first time after 15 years 3 months after surgery.

The Brain – Revolution Begins

Approximately 3 years after the surgery I took a first radical attempt to try something , and after 5 years of " non-car - driving - ability " , I completed a distance of 120 kilometers alone.

It was the first , but huge success , even if I do the following day had a terrible aching muscles in the hands . From then on, I noticed car driving became much easier day by day.

The best words I can find to describe felt less and less " initial obsessive pressure " and after about 3 months there were only about maybe 10 % of the compulsions.

Freed from this, the other obsessive compulsions continued to exist in full strength.

The next thing came in, was that I could eat food without obsessive thoughts , a little later, I was also able to watch TV shows that had previously triggered a compulsion immediately.

The longest I needed to get the reps by walking on the street under control.

The strangest thing about this type of improvement was that each individual obsessive / compulsive area had her “ own time “ but then fell in a relatively short time

I often get asked the question if my "personality" has changed , this I can fully deny .

Today's condition is that I am about 75% free from OCD.

Outside the house , or when I am among many people , I feel only two hours after a certain compulsion urge.

The general success rate according to my research is between 60 and 75 % of an improvement , which is a veritable opportunity when you consider that DBS is only practiced to patients who had no success in several therapy and medicamental treatment – so called “ treatment –resistant “ persons AND which suffer dramatically.

By the way “ Improvement “ is defined in the way, both when using the Cognitive Behavioral Therapy and the DBS by reduction in OCD at minimum of at least 35 %.

And people who don ´ think an evaluation of 35 % is a success, are , in my opinion not sufficiently sick enough.

35 % fewer OCD meant for me alone at the time measured at 6 hours without OCD and a huge profit, just from zero hours before.

The win of the so – called “ Quality - of - Life “ is several times higher than the percentage of improvement does express it.

Todays Technological And Scientific State Of Art

Taking the technical surgical experience , around 100,000 DBS were made (Source: Medtronic ) mainly in the area of origin of DBS , Parkinson disease, until 2014.

In psychosurgery area, numerous universities around the world work with this method, which are estimated to be around 400 to 500 cases. The success rates there is also 65 to 75%.

In the meantime operation techniques and methods have been further developed and also the technical hardware - the stimulators and the probes have.

I got implanted only one probe ( unilateral ) , nowadays worldwide the implantation of two probes ( bilateral ) method is used.

The devices have become smaller, and there are more possibilities in programming them than before.

In case of the probes there are new models, different in material, there are models of probes with eight instead of the former four contacts.

And, the major success in technique is, that nowadays it is possible to control and program each single contact differently.

All together means more possible options and maybe looking forward to a higher number of successful operations with a faster evaluation.

In November 2013 the first DBS – System was implanted at the University of Würzburg, which not only stimulates the brain region, but also sends back information to the device for further research.

Obviously this was a patient with essential tremor, OCD is explicitly named as one of the future areas of application.

Meanwhile, depression, alcoholism and drug addiction are treated with early successes in the research stage . Initial studies on Alzheimer's treatment are planned in Toronto and success in the treatment of anorexia could be achieved.

Important to Know

Deep brain stimulation and the classical therapies or drug treatment do not compete : only when all other options have been exhausted DBS is an option.

Even after surgery is another therapeutic support and even a first retaining a possible medication desirable since the OP can not just flip the "Forced Switch".

That I today assess the decision to DBS very positively is crystal – clear.

But there is one fact that annoys me very much and partly makes me really angry

Still, 10 years after starting research in DBS for OCD a lot of “ professionals “ – most of them psychologists - reject the method and worse - for no reason.

They advise against the method to their patients without knowledge of the results, or even when knowing them, in defiance of research results.

In many cases, I got the feeling they just see sometimes DBS as a competitor to their “ classical “ methods but as we learned, this is not correct: It is an additional method, when other treatments are tried out without success.

The tragic component for me is that according to a study , one in six hard forced OCD patients kill themselves ( Nuttin 1999) and I have made this experience twice before surgery and would probably not be here today , if no improvement had taken place.

Part 2

Interview with Professor Sturm, Senior Professor of Neurosurgery and Stereotaxy at the University Hospital Würzburg and one of the leading surgeons in the context of Deep Brain Stimulation in Europe.

He was the clinical director of the Department for Neurosurgery and Stereotaxie at the University of Cologne for more than 20 years.

Professor Sturm was one of the world's first medical doctors who performed DBS in Obsessive-Compulsive Disorder ( OCD )

He was awarded the Erwin Schrödinger Prize 2007 for further development of Deep Brain Stimulation ( DBS ).

The Interview was made in August 2013

“The bright future of brain stimulation is according to Prof. Sturm in the treatment of severe psychiatric disorders, which are non treatable with conventional methods, as well as obsessive-compulsive disorder, depression, Tourette's syndrome, dementia and addictions. “

Quote from the press of Jörg - Bernard - Foundation

---------------------------------------------------------------------------------------------------------------------------------------------

Question:

Professor Sturm, how long do you treat OCD using Deep Brain Stimulation ?

Prof Sturm:

Personally I look back on 11 years of experience in the field, added about 1000 Deep Brain Stimulations in Parkinson's Disease.

Question:

What are your experiences according to the rate of success of a DBS in OCD.

Prof Sturm

The success - rate of a significant improvement is about 65-70%.

It must be borne in mind in particular that it corresponds to a measured symptom improvement by let's say 35% of an incomparably higher quality of life.

One can say that, if successful, the patient again is suitable for everyday use, but we also had cases of complete healing.

Question:

What conditions must be present for a patient for a DBS is in Question?

Prof Sturm:

A long-standing severe obsessive-compulsive disorder.

Furthermore, intensive cognitive behavior therapies must have taken place, both in form and in an outpatient of a recognized, high-quality inpatient therapy.

In addition, drug treatments with SSRI's and antidepressants at a sufficient dose and duration must have been tried.

Question:

How to you determine whether a DBS can be done or not?

Prof. Sturm

This is done in close cooperation with our psychiatric department, which also conducts the preliminary investigation and decides on the basis of their investigations on the suitability of the patient and accompanied the therapy optimization closely.

The neurosurgeon never has too meet - an also cannot meet – this decision alone.

In addition, an indication is given by the clinic is a legal requirement in Germany and not questioning the competence of the referring physician.

Question:

How can we imagine the effect of the DBS?

Prof. Sturm:

The brain works mainly in the form of networks and control circuits.

These control loops function due to a possible predisposition and environmental influences - even psychological - no more in a correct way.

Based on our operating results, we have the hypothesis that certain circuits - are highly “over - synchronized “ and thus "over-react" - in this case between the deep brain and the frontal lobe.

What we do is this sickening rhythm to replace by our stimulation at 130 Hz - without destroying this circuit or even any brain tissue.

Question:

Since the beginning of research and first DBS more than 10 years have passed.

What technical / operational developments there since the first time and today?

Prof. Sturm:

At the beginning of the research around the millennium we have explored in the research network with other hospitals of different variants of the DBS in studies.

This we succeeded, by determining the best target area, by varying the flow parameters and the turning of the unilateral brain stimulation for implantation of two probes to improve the duration and quality of onset significantly.

Question:

Meanwhile, the health insurance companies in Germany cover the cost of DBS in obsessive-compulsive disorder: What does this mean for you?

Prof. Sturm:

This is a very big step forward and shows that the assessment, validation and recognition of the method has very positive developed.

Additional Question:

Would you evaluate this as a kind of seal of quality with regard to the method?

Prof Sturm:

Sure

Question:

Is the part of the DBS postoperative care in the context of therapies desirable, and are there any guidance from the clinics.

Prof. Sturm:

This is a very important question and I am glad that you ask for it.

This is more than desirable.

The brain pacemaker creates the conditions that the control loops function again.

Behavior therapy can then work again, even if it wasn ´ t successfull before, because the neurophysiological conditions are newly created to allow this to take effect again.

That would promise a significant acceleration of healing.

It is roughly comparable to a hip - operation: Here we got regularly a rehabilitation - phase around to build the muscles again and to optimize the recovery process.

The behavior therapist is absolutely free in his treatment – there are no “ orders “ of how he has to work by the clinic.

Prof. Sturm, thank you very much for this interview.

--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

In my personal opinion most critics are about the risks, which be the way are very much lower than using cingolotomy, because DBS is completely reversible.

Then some authors ( mostly psychologists ) target, that there are no controlled long term results - on the other hand i ask myself if there are any long term studies for a CBT ?

Yes a brain surgery is not without risk, ( the rate of comolication is around 0,4 % inclusive those of corrupted cable, allergy and not only death cases ) BUT living with an extreemly OCD has also risks, if you know what I mean - I had myself undergoene this " risks " two times before surgery.

Possibly you might find teh original site by Google - in German we call DBS - Tiefehirnstimulation.

Don ´ t now, if you can answer me here directly via email or whether it ist allowed to post my email here - if not i try to have look at this post.

If it is possible to mail me, i surely will answer you every question I can answer.

Take care of yourself !

Best Wishes

Nasdaq

HI AND HELLO

I have replied to you in the recent past only briefly to say what a great posting certainly worth the effort to read for me any way THANK YOU !

I have one question for now, I have done and have some documents on this procedure and and how they planned to do the trials in London UK.

my understanding was that the op was done in 2 or 3 stages.

1 - make the implant in the brain

2 - make the implant in the chest

3 - and then connect them up via the neck up or near the ear area.

I also believe that the trials in UK were to do both sides or similar to the required area of the brain, as with yours it was just the appropriate left or right side.

SORRY missed the main Question DID you have all the surgery in one go or was it spaced out as above

PLEASE feel free to CORRECT me as you see fit.

Thank you so much for your time and effort.

B-B-B

Link to comment
Guest Adam Samson

Hi B-B-B,

Thank you very much for your reply. I really appreciate you taking the time to describe your experience of ECT in detail, especially as you said earlier that typing in lowercase letters is a bit of an effort for you. I am intrigued by the process of ECT. I'm amazed that anyone originally thought up the idea as a possible form of treatment, and I'd love to know more about the science of how and why it works in those patients who do benefit, ie. in what ways does it change a person's brain cells. And I admire anyone willing to subject themselves to it. I'm glad it helps a few people but very sorry it didn't help you, B-B-B. But maybe your willingness to have a go has helped the docs to refine and improve the technique for future patients, so it may not have been totally pointless. One further question I would like to ask is, did you have a gag stuffed inside your mouth to stop you biting your tongue when they threw the switch?

I first heard about DBS as a treatment for Parkinsons Disease. My mum has severe Parkinsons. Only afterwards did I discover that DBS is sometimes used to treat OCD. Despite the risks and the drawbacks, it sounds to me as if it is a technique that could be improved over time and may become increasingly beneficial for OCD sufferers, just like the first heart transplants were disappointing but nowadays they are much more successful. If you have tried all else to beat your OCD and if every day for you is non-stop distress & misery and you haven't got many decades left to live, then if I were in your shoes I would consider DBS for myself. If anything went drastically wrong, I wouldn't really have lost anything.

I'm sorry to hear you're very down at present, B-B-B. I do wish you a better future. And I hope you stay around on the forum. I would love to keep in touch and know how you get on.

Adam

Link to comment
Guest BILLY-BIG-BANANAS

Hi Adam

Sorry can not remember if they gagged me or not, does make sense that they would for your reason of the tongue biting or just to keep ME quite!!!.

I will gladly keep you updated, I am rigorously pursuing alternative action and have moved on from the negative approach to this.

I would like to think I am further down the line to this action than one would think, however time will tell, I agree with your views on the beginning of heart surgery and a lot of other views you give.

I have done a lot of brain scans for different researchers, mainly at Addenbrook Hospital linked with Cambridge university, They gave me a scan of my brain once, WELL at least I know I have one, I put it on our computer as a screen saver, original I thought, my kids made me take it off.

All this helps the pro's get on with finding out how the brain works and what they can do to help us.

I myself have had a quad bypass all went well to this day, 4 days in hosp then home.

To prove im not just one sided in the my approach, ive also done quite a few drug trials, run support groups,

And telephone support. And most certainly agree that CBT works well in most cases BUT NOT all.

As you are, im quite interested in Nasdaq our German friend who I believe has put a lot of effort into

His posts.

I am intouch with an ex Cingulotomy patient, and become good pals, very good for 1st hand info, Can Not say any more on this for now hope you understand, (But Time will Tell) Thanks.

(Cingulotomy being my preference at this moment in time but things can change quickly)

All the best for now

BILLY-BIG-BANANAS

Link to comment
Guest imalright

Hello

I'm also really interested in your experience :-) not something i've considered myself...and unlikely that I will try it (too scared lol)....but still interested in what exactly that involves for my own development :-)

Link to comment

Hello Nasdaq,

Welcome to the forum. Good to see you here and I'm very pleased your deep brain stimulation went so well.

A friend of mine in America knows a couple of people who have had the procedure and both experienced positive results.

It doesn't seem to be accepted by many OCD specialists in this country (one says it's barbarous) but my doctor wants me to have it and I would if I could.

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...