An Interview with an English OCD Patient, who got Deep Brain Stimulation in Germany: His life, experience with surgery and first effects
This is a pretty long interview, which was thankfully given to us by John and his wife about John s life with OCD, about his surgery and first effects.
We decided not to shorten it, because Deep Brain Stimulation in England is nearly unknown ( beside one study ), so that people get an impression of it.
We had nearly 1 / 2 year of contact to Jane and John, saw them at the hospital and so a kind of friendship developed by time.
They searched for information - and had got already much - and asked us for more, and we did what we can.
Thank you both for your following words !
John, you choose DEEP BRAIN STIMULATION / DBS against OCD as a nearly last treatment options.
QUESTION
Can you tell us the story of your illness and what problems it caused to you in daily life ? ANSWER:
I began suffering with OCD at age 5. I am now 40. I was misdiagnosed until 2012.
With a YBOCS of minimum 37, I was close to suicide for many years as I tried to find Doctors and answers.
I was misdiagnosed as generalised anxiety disorder, chronic fatigue syndrome and bipolar and put on many many medications which increased my OCD symptoms.
My OCD is "harm ocd" so I am constantly terrified I will do or have done something "wrong". From sending the wrong work colleague an email accidentally to re tracing my driving route to make sure I didn't hit a cyclist or pedestrian.
I also suffer from "flashes" a term I coined where I get up to 50 visual intrusions during my day (I might see a car or a house or a face in my mind) and I then spend hours and hours obsessing over whether they are "real memories" with importance or "false memories". 99% of the time they are false memories and nothing to worry about but this takes a long time for me to accept.
I had to leave school age 15 because of my OCD.
I was mentally and physically destroyed by the illness. I was misdiagnosed as having chronic fatigue syndrome as I was very physically affected with tiredness.
I was ruminating over thoughts for an average of 15 hours per day.
I was bed bound and house bound until 22 (7 years) with no appropriate Doctor care and I spent all of those 7 years indulging my OCD by ritualising my thought patterns from when I woke up to going to sleep.
At 22 I started to improve by 5 or 10 percent and began a self taught career in TV as a producer and editor. I worked very hard (too hard) to improve my life whilst suffering horribly from the OCD still.
This continued for 10-13 years where I would work freelance in different TV companies with no one aware of the hell that was going on inside me. I would cry before work and on the way to work and have to hide in the work toilets up to 12 times per day to "ritualise about my intrusive thoughts". It was the only quiet place I could find.
I became the very worst at age 34 whilst holding a very senior position at a TV production company where the deadlines were too tight and the stress was too high.
I crashed and broke down completely.
How long do you suffer with your problems and what options did you try before deciding for DEEP BRAIN STIMULATION / DBS ( meaning therapies, cures, medications )
I suffered in reality for 35 years but officially being diagnosed in 2012, I had OCD for 5 years before DEEP BRAIN STIMULATION / DBS. I saw many therapists, a mindfulness coach, 4 psychiatrists before I was hospitalised age 35 as an inpatient at a OCD ward. I had 3 extensive inpatient stays and was treated by ERP (exposure response prevention). This treatment did not help and worsened my symptoms in many cases. As did talking therapy. I saw a psychologist twice a week for many months who was trained in a psychodynamic model. This approach of looking at all thoughts and trying to "unravel the onion" made me extremely ill and I worsened with each session. I was a patient at the Maudsley hospital (out patient) and this therapy helped me greatly. They are world class. Regarding medications - I have been on over 2 dozen treatments and currently am on 12.5 mg diazepam per day which I will slowly reduce post DEEP BRAIN STIMULATION / DBS.
QUESTION Besides DEEP BRAIN STIMULATION / DBS you suffered on other problems, is that right ?
( I mean the depressions and anxiety disorder )
I see these as one and the same. The anxiety and depression was a byproduct of OCD.
QUESTION
So you choose Prof Maarouf at Cologne - Merheim.
Can you tell us how the procedure of the pre - operative examanition worked ?
ANSWER:
After much research by my wife and I, we decided Prof Maarouf was a good "fit" for me.
His pre op examination included physical tests such as MRI and bloods.
He had a full and detailed understanding of my life from age 5 and was convinced DEEP BRAIN STIMULATION / DBS would work for my OCD on the first day we met.
We found Prof Maarouf after talking with Horst and doing much much online research.
There are only a handful of DEEP BRAIN STIMULATION / DBS options available and we tried to speak to as many people as we could before deciding on the surgery.
How did you feel while this period and how did you assess the planning from the first examination till now ? ANSWER:
I was excited to have a chance at a new life..or even a bad life but slightly less painful. After we were approved for surgery, we funded the operation and began preparing for life with DEEP BRAIN STIMULATION / DBS by much research. We importantly went into the operation with VERY low expectations and hope for just 1% improvement. This was imperative as to not raise my anxiety and depression more than it already was. This was my last chance and I was ready to experience whatever benefit (if any).
QUESTION
Dr. Maarouf explained you, how the surgery will be done - can you give us an explanation in your own words ? ANSWER:
Prof Maarouf gave us lots of his time to explain the surgery and show us the electrodes that would be inserted. He was open to any question no Johner how "dumb" and we felt very confident it would be nothing more than routine surgery for his team.
QUESTION
You werde anaethezid during the full surgery , weren t you ?
Yes full general.
QUESTION
Also you were surged with the help of robotic operation surgery system ?
Yes ROSA was used and cut the surgery time by hours (it was approx 6 hours start to finish) and wood have been much more with ROSA I was
informed. Were you shown this system and how did you feel about that - is it something which gave you a plus in safety ?
Yes we saw videos and felt it helped with precision and less time on the operating table.
QUESTION
Now when surgery was done and the system implanted - do you feel any pain or would you say it is good to handle / deal / with it ?
I was surprisingly well the day after surgery aside from normal pain.
The pain worsened on day 2 until day 5 and I was not able to tolerate morphine and therefore used very few pain tablets. I was up and moving on day 2 and generally I would say my recovery was excellent.
I experienced numbness in the top of my head after surgery and this continues to this day (2-3 months post surgery). It is not painful and it has decreased massively in the past 4 weeks.
QUESTION
ANSWER:
Yes when he turned on the device I was in pure joy.
It worked immediately and I began to laugh!
I felt well for the first time in 35 years.
The DEEP BRAIN STIMULATION / DBS benefits only lasted a couple of days and then I returned to normal.
Within 2 weeks we found the setting that worked for me and I left hospital with the DEEP BRAIN STIMULATION / DBS working very well and feeling good. Soon returning home this benefit disappeared after 7 days. We returned to see Prof Maarouf 3 weeks later and he gave me new settings which have worked much better than the first time and as of the date of this email have lasted for 12 days with no sign of benefit decreasing.
Here is a picture of when the device was turned on the first time and I began laughing.
What did you feel, when you were put " on " - we heard you had an inital reaction ?
I laughed!
It was wonderful.
It was like someone just took my depression away A very emotional time.
As further settings were changed, I began to feel far less tired and no loner needed a wheel chair.
QUESTION
( And, if yes ) such an initial reaction so short after the stimulation is not in every case to
expect - it s rather the exception - but how Dr. Maarouf told us / you that it is anyway a good sign that the right targets in the brain were
reached.
Prof Maarouf was certain the target was correct as soon as John laughed for the first time.
QUESTION
Jane, you told us, you triggered John. ANSWER:
Yes I did trigger John with OCD harm doubts that he was not aware of. It did not seem to be of great benefit as John soon became aware I was testing him and they were not "usual ocd".
He soon decided to stop being triggered and listened to his body for answers. If he didn't feel better he said so.
If he felt better he said so. John was very strict about any progress and didn't want to "wish or hope" he "might" be feeling better.
Watching him in hospital for the next two weeks he reacted far better to natural triggers and even though he still had bad OCD he was dealing with it so much better.
I think doctors may have told you that there COULD be a step backwards for a while at some time, what did they tell you how to handle with
it.
( I am asking this, because some patients had this experience, but after a while recovery went on - so no reason to get nervous ! ) ANSWER:
We had different experiences talking to drs (before choosing Maarouf). Some said I could get far worse and this worried me a great deal. It felt very negative and it was pressured on me how this is very new and experimental treatment.
I felt very comfortable with Prof Maarouf and knew that if I worsened we would be able to find settings that worked again.
I always held onto the memory of me laughing the first time the DEEP BRAIN STIMULATION / DBS was switched on...if it worked once, it could work again!
QUESTION
Now John, we heard you feel better, dou you have remarked any unpleasant side - effects ?
My only side effect is slight numbness in top of head and some short term memory loss but nothing significant.
QUESTION
So, we just wanted to get an impression, which are the reasons and the life with OCD lead to your decision,
how the process of decision of the clinic works and - naturally - how it feels from a from person directly after surgery.
ANSWER:
I had no choice but to get this surgery. It was very expensive and our family supported us financially so we were incredibly lucky. I estimate I would have not reached 45 years of age without the surgery.
QUESTION
It s clear, that in the next months the development will be very exciting and interesting. we will keep in contact and ask - if you
allow us - what s the state of things is.
ANSWER:
Right now I feel great! I don't get me wrong, the OCD beast is very much still there.
I get around 20 attacks a day and many are still very serious.
However my depression has lifted by over 50% and I am far more engaged in life.
I now talk to friends and read articles on things I find interesting.
The world has gone from black and white to colour.
QUESTION
Is there anything , what you would like to tell people, what you evaluate - till this point - as
especial positive or eventually negative ?
There is no guarantee this will work for everyone. I am well aware I may stop feeling good in a week as it has happened before.
But I have enough life back in the past few weeks that I could die happy with the benefit and clarity I have received so far.
What should people in general do, make up their decision ?
ANSWER:
If you can avoid a trial I would recommend you go private.
Telling a dr if the DEEP BRAIN STIMULATION / DBS is working is stressful enough without the fear of being on a placebo. If your life has not improved after hospital stays and hundreds of hours of OCD treatment, I say go for it!
|
QUESTION
( And, if yes ) such an initial reaction so short after the stimulation is not in every case to
expect - it s rather the exception - but how Dr. Maarouf told us / you that it is anyway a good sign that the right targets in the brain were
reached.
Prof Maarouf was certain the target was correct as soon as John laughed for the first time.
QUESTION
Jane, you told us, you triggered John. ANSWER:
Yes I did trigger John with OCD harm doubts that he was not aware of. It did not seem to be of great benefit as John soon became aware I was testing him and they were not "usual ocd".
He soon decided to stop being triggered and listened to his body for answers. If he didn't feel better he said so.
If he felt better he said so. John was very strict about any progress and didn't want to "wish or hope" he "might" be feeling better.
Watching him in hospital for the next two weeks he reacted far better to natural triggers and even though he still had bad OCD he was dealing with it so much better.
I think doctors may have told you that there COULD be a step backwards for a while at some time, what did they tell you how to handle with
it.
( I am asking this, because some patients had this experience, but after a while recovery went on - so no reason to get nervous ! ) ANSWER:
We had different experiences talking to drs (before choosing Maarouf). Some said I could get far worse and this worried me a great deal. It felt very negative and it was pressured on me how this is very new and experimental treatment.
I felt very comfortable with Prof Maarouf and knew that if I worsened we would be able to find settings that worked again.
I always held onto the memory of me laughing the first time the DEEP BRAIN STIMULATION / DBS was switched on...if it worked once, it could work again!
QUESTION
Now John, we heard you feel better, do you have remarked any unpleasant side - effects ?
My only side effect is slight numbness in top of head and some short term memory loss but nothing significant.
QUESTION
So, we just wanted to get an impression, which are the reasons and the life with OCD lead to your decision,
how the process of decision of the clinic works and - naturally - how it feels from a from person directly after surgery.
ANSWER:
I had no choice but to get this surgery. It was very expensive and our family supported us financially so we were incredibly lucky. I estimate I would have not reached 45 years of age without the surgery.
QUESTION
It s clear, that in the next months the development will be very exciting and interesting. we will keep in contact and ask - if you
allow us - what s the state of things is.
ANSWER:
Right now I feel great!
I don't get me wrong, the OCD beast is very much still there.
I get around 20 attacks a day and many are still very serious.
However my depression has lifted by over 50% and I am far more engaged in life.
I now talk to friends and read articles on things I find interesting.
The world has gone from black and white to colour.
QUESTION
Is there anything , what you would like to tell people, what you evaluate - till this point - as
especial positive or eventually negative ?
There is no guarantee this will work for everyone. I am well aware I may stop feeling good in a week as it has happened before.
But I have enough life back in the past few weeks that I could die happy with the benefit and clarity I have received so far.
What should people in general do, make up their decision ?
ANSWER:
If you can avoid a trial I would recommend you go private.
Telling a dr if the DEEP BRAIN STIMULATION / DBS is working is stressful enough without the fear of being on a placebo. If your life has not improved after hospital stays and hundreds of hours of OCD treatment, I say go for it!
|