Psychosurgery?

[Guest Ella]

Hi all,

Has anyone here been through surgery for ocd such as deep brain stimulation or gamma knife surgery? I saw dr number 6 today, by far the nicest and most helpful dr i have seen (unfortunately he is leaving so number 7 will be next!) and we talked a lot about my medication and therpay history and he believes i am treatment resistant. He told me to think about the option of surgery, i have read about this a lot over the last year but assumed that beacuse none of the dr's had mentioned it that i wasn't suitable. I know this is a last resort and not something to go into lightly which is why i am keen to find others who have been through it and thier experiences, be it good, bad or indifferent.

Any help will be much appreciated as always :original:

[Guest Shar]

Hi Ella, I agree it's not something to be done lightly. It's not a procedure I've had done myself - or ever will do, but that's my opinion - but if you use the search function I'm sure it's been discussed many times before. You should be able to find some useful information. :original:

[Guest brennie]

Ella, this is a touchy subject for me and a bit distressing because this was mentioned to me awhile back and i personally freaked out.

Sometimes i still wonder if i should have gone through with it ... but i am a wimp really.

Never the less it is not something to be taken lightly is it ? think carefully !

Its your decision , your life ..... but i wish you well which ever road you go on.

Brennie x

[Guest Trish]

My psychiatrist suggested psychosurgery, many years ago. It predated the procedures you spoke about, he referred to it as a "sophisticated lobotomy". He refused to treat me further, unless I followed his advice. As my family was extremely worried about the surgery, and my GP absolutely horrified by the thought, I didn't go ahead. More recently DBS has been mentioned by another psychiatrist. I am undecided.

I have a friend who has met people at conferences in America, who have undergone surgery for their OCD. Some had DBS and one had gamma knife. All had improved, but not one was cured. There was a documentary on the BBC, a few years back, where a lady with severe OCD received DBS. Immediately the batteries were inserted to power the electrodes she made a dramatic improvement, but I don't know if it was long-term. I don't know if anyone can say it would be long-term, as yet, because it is a relatively new procedure. Did you see the recent documentary on DBS for the treatment of Tourette's? One man made a huge improvement. However, one nearly died of a brain infection, following surgery.

Many OCD experts consider it to be a barbarous procedure which should never be considered. That is Professor Salkovskis's view and he has made me think more deeply about the prospect of it.

Edited July 5, 2007 by Guest

[Guest Trish]

P.S. Brennie, have you watched deep brain stimulation taking place? You are not a wimp for feeling as you do about it!!!

[Guest brennie]

TRISH, i have only read up on it .... No i've never actually watched it being done ...it scares me too much.

Brennie x

[ACE]

Hi all,

Has anyone here been through surgery for ocd such as deep brain stimulation or gamma knife surgery? I saw dr number 6 today, by far the nicest and most helpful dr i have seen (unfortunately he is leaving so number 7 will be next!) and we talked a lot about my medication and therpay history and he believes i am treatment resistant. He told me to think about the option of surgery, i have read about this a lot over the last year but assumed that beacuse none of the dr's had mentioned it that i wasn't suitable. I know this is a last resort and not something to go into lightly which is why i am keen to find others who have been through it and thier experiences, be it good, bad or indifferent.

Any help will be much appreciated as always :original:

dear Ella,I have read a little about DBS and have thought seriously about having it if it were possible,but I think it's not available here in Australia.I guess i'm just tired of being on so many medication's that haven't helped etc...

[catherine]

The line OCD-UK takes is that psychosurgery is an unknown procedure in terms of effects and side effects and it is not recommended due to too may risks associated with it. DBS or any other procedure is not something which is widely available and there is only one centre in the UK which will consider it. Furthermore it is not a case of your local psychiatrist simply recommending or suggesting it for someone...anyone considered for it has to undergo extensive psychological testing by an independant team.

Catherine

[Guest Ella]

Thanks for your replies. it is interesting to know what ocd as a charity thinks about it all so thanks very much for that.

I have seen 6 psych's in the last year and have been to the Priory. I have been on 7 different medications, am currently now on round 8 and was given the guidleilnes that a patient needs to fall in to even consider surgery. They are,

• The illness must have persisted for longer than five years.

• The case must be extremely severe, inhibiting functioning to a great enough degree that one is unable to care for oneself.

• All other treatment options must have been attempted first and failed to provide relief, or the side effects of medication have been intolerable.

• One must be between the ages of twenty and sixty-five.

• There must be no other complicating brain problems or history of substance abuse.

Since this surgery is irreversible, it must be considered very carefully. It can also have permanent side effects, including hemorrhage, seizures, increased fatigue, apathy, and poor memory.

I know that this is not a common procedure but when your life is as bad as mine and there seems no way out then it is something to consider.

Many thanks for all of your views.

[Ashley]

I have seen 6 psych's in the last year and have been to the Priory. I have been on 7 different medications, am currently now on round 8 and was given the guidleilnes that a

Hi Ella, if you don't mind me asking, why have you seen so many therapists in such a short space of time? What period was the different medications over, was that over the last year or over a much longer period?

Thanks, Ashley.

[Guest Ella]

I have seen so many dr's because basically they either leave the service, as in the case of 3 of them, i went to see one privately who said i was too bad for him to be able to help me and the other two said that i needed to see a specialist as they had never encountered someone with my problems, which made me feel fab-not! As for the medications, since last March i have been on all of them, they get stopped for many reasons, never my choice except for Sertraline, as my heart can't cope and i also have an e'd (apparently) which the tablets just encourage. /no-one seems to know what to do with me so just pass me around, i have been seen in 3 different counties so far! I have a wonderful psychotherapist but even she feels stuck and frustrated, we both agree i need to be on medication to allow me to dampen down the ocd enough to talk about it but it either makes the ocd worse or makes my heart and appetite worse. I have been on fairly high doses of them all.

Hope that helps!

[Ashley]

I have seen so many dr's because basically they either leave the service, as in the case of 3 of them, i went to see one privately who said i was too bad for him to be able to help me and the other two said that i needed to see a specialist as they had never encountered someone with my problems, which made me feel fab-not! As for the medications, since last March i have been on all of them, they get stopped for many reasons, never my choice except for Sertraline, as my heart can't cope and i also have an e'd (apparently) which the tablets just encourage. /no-one seems to know what to do with me so just pass me around, i have been seen in 3 different counties so far! I have a wonderful psychotherapist but even she feels stuck and frustrated, we both agree i need to be on medication to allow me to dampen down the ocd enough to talk about it but it either makes the ocd worse or makes my heart and appetite worse. I have been on fairly high doses of them all.

Hope that helps!

Hi Ella,

With your permission I would like to have a chat with you about all this, either via PM/email or I can call at a suitable time, certainly 7 different medications, in what 15 months? I think is too many, especially when it is suggested you give each course of medication at least 4-6 months before changing (unless of course you have severe side effects). If you don't mind me asking, who was the private therapist who said he could not help you? I have a reports of one private therapist saying this to at least two other patients of late and it is always the same person, so just interested to see if that is this is the same chap.

Again, the chop and change of therapists is not your fault but it is equally not acceptable for your long term care, so we need to ensure this does not continue, that you receive long term care from a team who will be consistent.

Ashley

[Guest Ella]

Thanks Ashley, there is no problem with you contacting me by PM, im afraid i can't talk on the phone, one of my many rituals i'm afraid! Plus, i think you should know some of my other things that have complicated the issue but i can't post as they are too private so if you are appyto and have the time then please feel free to Pm me.

Thanks for the help, it is much appreciated.

[ACE]

I've been on many different med's in the last 15 months myself some have been luvox,lexapro,lovan(prozac),Parnate,Avanza,Valpro and now back on Anafranil.The reason behind trying different types was that each med after sufficient time was having no effect on me,so my pdoc decided to put me back on Anafranil in the hope of trying to reduce the Ocd as it was very severe.

I also have looked into DBS as I'm just finding thing's far to overwhelming. :helpsmilie:

[Ashley]

I've been on many different med's in the last 15 months myself some have been luvox,lexapro,lovan(prozac),Parnate,Avanza,Valpro and now back on Anafranil.The reason behind trying different types was that each med after sufficient time was having no effect on me,so my pdoc decided to put me back on Anafranil in the hope of trying to reduce the Ocd as it was very severe.

Hi Ace,

I am amazed that your doctor changed your meds so often, for some people a medication can take anything from 4-8 weeks to start making a difference, and it is thought a minimum period of 6 months per medication should be tried. I am not even sure what a couple of those medications you listed actually are.

[ACE]

Hi Ace,

I am amazed that your doctor changed your meds so often, for some people a medication can take anything from 4-8 weeks to start making a difference, and it is thought a minimum period of 6 months per medication should be tried. I am not even sure what a couple of those medications you listed actually are.

hi ash,I've also been on Seroquel and Xanax in that time and still take Xanax at times for my anxiety and depression when I need to.My pdoc did give ample time to each med and even on high doses the fact was that I've been very resistant to pretty much all the med's I've tried and my depression and ocd was very deep so my Pdoc was trying his best to hopefully find something that would help me.

I'm back on Anafranil after it was one of the med's I tried year's back and I cant remember the doseage I was on back then as I was with another Psychiatrist.Today I saw my pdoc and have had my doseage increased from 225mg to 250mg in the hope I can get out of the depression alot quicker and the Ocd.

P.S Sorry ella it feel's like I've hijacked your thread.

[Guest Ella]

Ace, hijack away, i'm not posting on this site anymore anyway, good luck to you though, i hope something works out for you soon!

Take care.