Anyone managed to get rTMS on NHS (England)?

[Pleiades]

I know that there are clinical trials ongoing, and it's very expensive to fund. Certainly it's not available in my area.

It has shown a lot of promise according to my brief and limited research.

[Midori]

Won't be available till trials are finished, and even then may only be available to a few folk.

Cheers, Midori

[Pleiades in reply to Midori]

Yes, that was what I feared, especially with the NHS in the state it is ☹️

Looking at decades (if ever), not years... 😪

[languageteacher in reply to Pleiades]

Hi Pleiades! You were thinking about whether rTMS is available in your area and how much it could cost. I live in Finland and here the situation is quite complicated because this specific rTMS treatment is not allowed to conduct for OCD because of no official authorization from the National Supervisory Authority. And I could find some sum of money potentially indicative: over $8.000,00. But this sum is ONLY the entry level, and many other expenditures over it.

[Pleiades in reply to languageteacher]

Hi languageteacher, I'm afraid I've seen no updates re: rTMS locally.

I'm sure it's available commercially (especially in London) but at exorbitant prices (certainly several thousand £££s).

With the state of the UK economy, and the NHS in particular, I'm not holding out any hope that there'll be progress in this regard whilst I'm alive 😞

[languageteacher in reply to Pleiades]

Hi! You ended your message with a feeling of hopelessness "whilst I'm alive". I can understand your point of view quite well (at least I think so). In my own OCD history, I remember I had several periods of hopelessness, some times quite long ones. In terms of these neuromodulations(i.e. rTMS, ECT, DBS), I often think there are many varying opinions among researchers - so it can be difficult to make one's own objective opinion. Well, I'll soon write more because this is an interesting topic. Timo

[Pleiades in reply to languageteacher]

I've noticed several commercial products that promise similar results to full scale rTMS eg Flow Neuroscience flowneuroscience.com/shop/ but still relatively expensive and not proven for OCD (and not 100% for depression).

[languageteacher in reply to Pleiades]

Hi! I must ask you whether you know more about this topic of neurosurgery, because I've undergone myself an operation for alleviating my OCD. I've sometimes written here on IOCDF's website on my story, but I'm a bit uncertain of telling this story because there are often persons among the readers who don't want to read about this kind of treatment for a bad OCD. --- What would you think?

[Pleiades in reply to languageteacher]

There's no problem in relating your experiences here; if they are too graphic/offensive I'm sure the mods will be on it quickly!

No-one is forced to read anything here so maybe just preface it with a "spoiler alert" (trigger warning) or something?

I'd like to have neurosurgery but there's no chance of it happening here 😞

[languageteacher in reply to Pleiades]

There are for instance in functional neurosurgery these 4 operation methods used worldwide (they are so called ablative ones). In neuromodulation, there are the ablative DBS + the non-ablative TMS, for instance. TRIGGER WARNING!

You can read about some of these on Google.

Here is one non-entire list of some methods:

1) Capsulotomy

2) Cingulotomy

3) Limbic Leucotomy

4) Subcaudate tractotomy

I've undergone the first one (capsulotomy) in 1992 in Sweden for my bad OCD.

[languageteacher in reply to languageteacher]

Hi! As far as I've understood, these surgical procedures are somehow exceptional if we believe what FDA (= Food and Drug Administration) says in the US. According to their statement, its acceptable to conduct e.g. a DBS for a patient with a severe Parkinson, dystonia or epilepsy. But they relate to surgery for psychiatric diseases being reticent to this treatment. I've read many articles by neurosurgeons from various hospitals around the world and understood that specially regarding OCD there are NOT so many alternatives available.

[Pleiades in reply to languageteacher]

No idea about the NHS here in UK but reckon you'd have to have extreme symptoms for them to consider expensive and potentially dangerous surgery.

My OCD is 'under control' with medication, though the chronic, treatment-resistant depression is debilitating. Anxiety is 'OK' too but that's only because I don't need to do that much in a day...

The reason I liked the idea of rTMS is its non-invasive nature (though there are forms where wires do need to be inserted into certain parts of the brain, haven't researched all the variations, doesn't seem much point 😞)...

[languageteacher in reply to Pleiades]

Yes, and here you can read about capsulotomy:

karger.com/sfn/search-resul...

[languageteacher]

Hi again! How is it today in the UK? - We have here in Finland an extremely cold weather, e.g. in my computer screen I can see that in my home area we have just now - 33 degrees Centigrade. The authorities have warned on TV for it by saying "Don't go out if not necessary!"

But the link I gave to you - it has information on the operation I've undergone. And there are similar links for those other operations I've told you. I think you certainly are more capable of reading them because English is your mother tongue.

Have a nice weekend.

[Pleiades in reply to languageteacher]

It's wet but not particularly cold here in UK, can't imagine -33c! I've had a brief look at those operations; not something I'd be eligible for here AFAIK.

Still holding out hope for non-invasive treatment but immediate future doesn't look that rosy 😞

[languageteacher in reply to Pleiades]

Hi! I'm aware of another treatment method used in the world for treatment resistant OCD or major depression, and it's called MRgFUS ultrasound capsulotomy. And it's NON-INVASIVE.

The first time I got to know about it was about a year ago when I contacted the university of Seoul in South Korea. There are some neurosurgeons who have conducted MRgFUS also for psychiatric indications. Of course, I don't know how much it would cost there, but on the other hand I also know there are some medical centers perhaps also in the US.

Well, overall this topic is a bit difficult to understand.

[languageteacher]

And I don't know how it is in the UK. I know there are some high-tech universities in the UK, though. Perhaps, there are so these high-tech hospitals. It would be best to start with the expenditures.

[Pleiades in reply to languageteacher]

There are only a couple of UK based hospitals that are conducting rTMS clinical trials and they aren't anywhere near me.

MRgFUS ultrasound capsulotomy sounds very interesting, not heard of it before. Apparently NICE (National Institute for Health and Care Excellence) here has approved it for 'essential tremors' and Parkinson's disease, but not AFAIK for OCD.

[languageteacher in reply to Pleiades]

Good morning! Yes, you are right. It can also be here so that this new method has been accepted for 'essential tremors' and 'Parkinson's disease'. As I've told we also have in Finland this quite an unfair situation which always seems to mean that those somatic problems come first. I've got this impression when reading about the history of psychiatry where you can see that the biggest reason has been for decades the infamous lobotomy which frightened psychiatrists at the time - they simply don't want to refer patients to these treatments. I discovered that the professor who invented this MRgFUS works at the University of Toronto. It's far away as I had been thinking earlier.

[languageteacher]

Related to my previous post, I can say that we here in Finland also have the problem to tempt young doctors to specialise in psychiatry. I just read an article today on it. There were some professors who said they have seen this tendency for a long time. In the article, one reason was, I think, the most dramatic - young doctors like to choose their specialties on the medical field thinking how overloading they are. And in terms of psychiatry, it really is more demanding than many other alternatives, because it's often interpersonal work and care-relationships can be long-term.

And today, I borrowed a book written by a Finnish neurosurgeon Juha Hernesniemi. I just like to check whether there is some new information in this book.

[Pleiades in reply to languageteacher]

Interesting. My experience of UK NHS psychiatry is that care relationships are kept very short term (eg they rotate the therapist, so you never get to feel 'comfortable' with them) - it's decision I can sort of understand - there are obvious drawbacks to having too close a contact; but frustrating because then the patient *never* gets to have a deep and trusting relationship with any one professional, and has to start again from scratch every few months or less.

No idea what the research says, I'm guessing it must be mandated from on high. IMHO It's entirely the wrong concept and I've stopped engaging due to this. The new therapist always want to go over the same old things again and again, it's just tiresome and pointless...

[languageteacher]

Hi!

Sorry, I have not been able to answer earlier. And now referring to your last message, I can say I think I can understand you. I've also seen the same: it's tiresome to change your therapist too often. Actually, I don't know why the system is that. But nowadays the Finnish state economy is in such a bad condition that for instance our Prime Minister comments the situation by saying almost every day: "The national debt is so many billion Euros that we have to cut the social benefits, we don't have any other way." And it was last week, he added that they (in the government) have come to the conclusion that the budget framework for this year would not cut enough - they WILL HAVE TO FIND MORE TARGETS TO SAVE. And that comment was interpreted that again we will have more people who get down under the poverty line.

This mundane realism seems to be awful if so many people need to calculate in their every day life whether they have money to EITHER buy food OR their medicine - maybe not both.

Well, I have to say that my OCD triggers are today more apparent than about 5 years ago. It means that things like negative domestic news (as above), threat of the climate change, the war between Russia and Ukraine because we have our border line (over 1000 km) with Russia, health issues ( like my respiratory problem) etc.

One positive issue can be mentioned: last week I received an invitation to attend the European Conference on Mental Health 2024 in Poland, Krakow. This would be my fourth time in this annual conference series. Well, I don't remember if I've told you that I became sick (a pneumonia) last year in Slovenia at the ECMH 2023, so my chances are about fifty-fifty to travel there.

[Pleiades in reply to languageteacher]

Oh I hope you are able to attend conference! It must be very difficult to do anyway with your condition, not sure I could bear the anxiety and large crowds!

Can understand about the depressing news about Russia etc. Not much good weather/sun over there I imagine either! It's pretty miserable in the UK at the moment, we don't get sub-zero temperatures that much but it has been extremely frigid recently 🥶

Funnily enough, we tend to look at Scandinavia and Finland and wish we had the social fabric and security you are thought to have; our welfare state has been hollowed out by 14 years of right wing 'austerity' cutbacks, people are having to choose between heating and eating 😞

[languageteacher]

Thank you for your answer. It's somehow good that there will be plenty of time before the conference. But even if I don't need to decide just now I can say my OCD thoughts are already here reminding me that I one day will have to make my decision. And I do remember how I was thinking last autumn when I had to be there in a hospital in Ljubljana for two weeks: it made me think that I'll never again travel abroad after this experience.

I understand this journey will be totally a different issue, BUT because I have this vicious circle of obsessive thoughts my mind will for ever be like it's now. That's sad I think so, but can't avoid thinking in that way.

Regarding the 'austerity' cutbacks you mention, I think today people in many countries have it quite bad just because of the high costs of living and inflation. And I'm following the war in Ukraine just because many people in Finland are as afraid as me of the near future, what will happen there in Putin's Russia. I can say that we here have been afraid just after the outbreak of the war. For instance this evening (like many other evenings), our broadcasting company had in their news as the first subject how we could TOTALLY close our Eastern boarder meaning that NOBODY from Russia could come to Finland any more.

And the president of Ukraine, Volodymyr Zelensky, said at the World Economic Summit in Davos that they can't think of any ceasefire. And on the other hand, Mr Putin has intensified the bombings e.g. in Kiev.

The new weather forecast for Europe (on Google) says we will get a warmer weather quite soon. So, please enjoy you also it.

[Pleiades]

I think existential threats exist to all of us on the planet, in different ways (and obviously more acutely for some than others). It adds to the generalized anxiety that pervades societies, though I doubt this is something new, just that we know about it more due to the internet and social media.

I don't think people in the past were necessarily 'hardier' - they just had no choice about venting their frustrations, there were few outlets apart from physically protesting I guess...

The big freeze here is actually not that bad, and would be normal 20-30 years ago, but we've become accustomed to much warmer winters recently. Now we'll get major rain and thunderstorms - I'm not sure which is worse!

[languageteacher]

Hello!

I was searching on Google for possible answers to "residential care/help regarding severe OCD".

We have no residential centre in Finland, but in Sweden they have such a centre in the city of Uppsala. There OCD sufferers can "live"3-6 months continuously having e.g. ERP almost every day.

And in Norway, they have developed "a four-day Bergen model" which means you can live those 4 days in their centre. In Finland, the psychiatric unit in Helsinki will begin this kind of treatment this year.

In the USA, there are some centres which also offer residential help. And in the UK, I found one example: The OCD Treatment Centre, York House, 27 Canon St, TauntonTA1 1SW

It's possible to contact them at [e-mail]

[Pleiades in reply to languageteacher]

Thanks for that. Taunton is the other side of the country to me. ATM the OCD is not as bad as the Depression in my case. Not sure how much it would cost either and I don't have funds for even short term residential care... Even the 50 minute "Assessment" is £150!

I was looking at this again: seems fairly cheap, if it's actually effective flowneuroscience.com/shop/

[languageteacher]

Hi and sorry it took time to answer - I've had a bad week mentally, but now I write to you about a book by an American woman, Gerry Radano. She has undergone almost the same neurosurgery as me. I've asked myself a British neurosurgeon Marwan Hariz and he said to me that: "The surgery Gerry Radano had (Gamma Knife surgery) was practically the same method as my surgery even though my surgery had a different name (Thermocoagulation Capsulotomy)".

You can find the book here:

amazon.com/Contaminated-Jou...

And you can read about Gerry Radano here:

freeofocd.com

[Pleiades in reply to languageteacher]

Thanks for that link. Not a book I'd buy, personally - the reviews are varied and it's expensive.

Do you think your surgery has had more effect than hers? It does sound a very drastic procedure to undertake 🤕

[languageteacher in reply to Pleiades]

Yes, I do understand what do you think of that book. I remember when I saw the article on it at the website of the International OCD Foundation, it also was for me something I had to think twice before I decided to order it. And honestly, I have to say here that luckily there are no pictures of conducting this operation in this book - those pictures I've seen in other publications have sometimes been awful. And I think it made me easier to accept this surgery for me, because I only had a vague idea of what I would have in that hospital in Stockholm.

And your second comment. I've read many books and articles on this neurosurgery, but to my annoyance the language has often been quite medical and so difficult to understand.

And here I come to my main point - my need to meet one day somebody who ALSO has gone through a neurosurgical operation for severe OCD.

It's very interesting to chat with you here, I do appreciate it. I think I don't know how much this woman in New York has (in reality) benefited from her operation. But for the time being, she has been the first person alive with the same experience of an operation - so I don't know if I never meet this kind of person face-to-face.

[Pleiades in reply to languageteacher]

Yes, it would be great if you could meet up with her. Maybe in a few years, there will be enough people who've had the operation to have an in-person seminar with maybe some professional speakers who can talk about it.

BTW Here is more info about the Flow device: flow-cms-prod.s3.amazonaws....

Some good results reported but not enough data as yet to say for definite that it is a game changing treatment.

[languageteacher]

Yes, I found this tDCS on the internet. And as far as I understood correctly, this treatment is available in the EU and the UK for depression.

I'm a bit hurry now but will contact you some other time.

[languageteacher]

Do you know any difference between rTMS and tDCS?

[Pleiades in reply to languageteacher]

I haven't researched it in depth yet, no.

[languageteacher]

Hi! I'm again sorry for not writing for a while, but I'll do it some day. My greetings for yesterday's Valentine's day.

[Pleiades in reply to languageteacher]

No worries. I don't celebrate Valentine's Day (or any holiday, including Xmas and my birthday LOL) but thanks anyway! 😉

BTW My limited research so far suggests tDCS is far less effective than rTMS but is more readily available to the general public. Really early days for non-invasive magnetic therapy still....

[languageteacher]

Thank you for your message. I have found that this new MRgFUS is widely used (also in the UK) for Essential Tremor. But I have not yet had time to read the article one Swedish professional sent me this week. I'll do it.