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. 

 

I would like to suggest that any seriously obsessive-compulsive patient should have the right to be informed neutral in order to meet the decision pro or con DBS by himself after neutral informed by the clinical doctors – and naturally if they give their Okay

For further information do not hesitate to contact me at 

sgsunnyday@gmail.com