DBS - Private or NHS?

About Parkinson's and health Treatments and therapies
1

Hello everyone :slight_smile:

My name is Emma, I am 51 yo, solo mum to 2 teenagers, symptoms since 2016, diagnosis YOPD 2020

I currently take 50mg Sastravi 4 x daily plus recent (literally yesterday) addition of Amantadine for dyskinesia. I have left sided deficit - tremor, bradykinesia, rigidity. Ldopa induced dyskinesia and agitation are troublesome, distressing and exhausting.
Alongside this I exercise very well, nutritional supplements and generally keep an adaptive mindset regarding PD

I’ve done a lot of research on DBS and whilst my neuro seems to be less than encouraging about referring me, I believe that given my age, level of fitness and high psychosocial demands, that DBS in the earlier stages of PD would be more beneficial sooner rather than later. I mean if it’s a treatment that could improve QoL by 80-90% why wouldn’t it be an early intervention option? especially as the procedure is evolving and improving.
I’m aware of the rigorous and not guaranteed assessment process - it doesn’t put me off.

I intend to continue to state my case within the NHS; however being familiar with the sometimes arduous and uphill nature of that system, I am exploring other options.

So my question is - have you had DBS with the NHS or did you go the private route?

I would love to hear your experiences - what led you to the decision to go private? how did you fund private treatment? what stage of PD were you in? do you have any hard won wisdoms to share?

Thanks for listening :slight_smile:

Emma

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Hi Emma,

We just wanted to take a moment to welcome you to our community forum, and to make sure you’re aware of a few of the resources we can provide. In addition to the supportively shared wisdom of our members, we have a free and confidential helpline on 0808 800 0303. This is a great place to direct your questions, as our advisors have access to loads of helpful information and are happy even just to listen, if that’s what you need. Added to this we have a website where you can search our expansive information banks on any subject about which you can think to ask. This page is just the tip of the iceberg when it comes to DBS info: DBS and Me | Parkinson's UK.

We hope this helps, and with our warmest welcome,

Jason
Forum Moderator

1 Like
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Hello Emma

51 years old and still a mum to teenagers, my heart goes out to you. I felt really badly done by getting pd at 55 with grown up kids.

I had my DBS three weeks ago at Queen’s Square, London, on the NHS. I think to self fund must be £20,000 at least, other expense is the programming appointments. I have had two so far, plus telephone consultations. I think I will be checked regularly until I am at the best they can realistically achieve.

I would ask for a referral from your gp or consultant to your nearest hospital which offers DBS and see if you are a suitable candidiate.

Best wishes

Lindsay

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Hi Emma,

I think you can request a referral on the NHS to any hospital in the UK that performs the procedure. Do you also have a Parkinson’s nurse you could ask about this?

I had surgery on the NHS at the end of July and will have the device switched on at the end of August. Interestingly my neurologist was the one who pushed me to have the procedure now on the grounds that I will need to have it at some point because I was diagnosed so young (32) so I might as well have it now as I will recover more easily and will get the benefits for longer. I was initially reluctant when he suggested it but soon came round. The wait was about 1 year from initial discussions about DBS to having the operation.

As Lindsay says I think self funding would be very expensive - I have seen a higher figure quoted in the region of £40k, but unsure how reliable this is and I assume this will vary based on which DBS system you want to get installed (I was given a choice of 4).

I’m 10 years post diagnosis and started experiencing problems with dyskinesia and off periods early last year.

Feel free to send me a PM if you want to know more.

Paul

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Hello, I am due for DBS, I am 52 on duodopa pump for 7 years. Had so far one appointment with professor in Queens Hospital. Next is telephone appointment in January 2025, seems to be a very long awaiting list…

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Thank you Jason, sorry for the late reply life happened and I forgot I posted this! :slight_smile:

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Thank you Lindsay

Yes it’s been tough at times. More about the sadness I have that my children, 15yo and 13yo have to live with a Mum with PD, I feel it robs them of so much especially as I was so active before. We had lots of adventures :slight_smile:

How are you finding the DBS? I would love to hear your experience if you are happy to share it.

Emma xx

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Thank you Paul, I would like to know more

Emma xx

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Hi LLL

I’ve heard the waiting time is significant, 1year to 18months. Good luck with your own journey

Emma xx

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Thank you for your respond to my question.
LLL

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Hi Emma
I intended to write an account of my DBS experience, not least because there is so little ‘out there’ of peoples experience.

DBS is something you decide to have done when you realise there is nothing else. Medicine not working, life being a compromise. I waited two years for my operation at Queen’s Square in London, Nothing scary at all, tests, MRI scan, pre-operation assessment, then admission to a ward. I just took it a day at a time. Operation was straightforward, although I did have a small bleed to the brain during the operation, but this didn’t cause any problems.

Post operation I was on a high, I felt great, taking no meds at all. This is called the honeymoon period. Somehow sticking wire probes in your brain, stimulates something that produces this effect.

I was good for a while, but as my scars healed and I ‘got better’, my Parkinson’s symptom returned. I started taking Sinemet again, but discovered it didn’t work as well as before, but also I had lost my dyskinesia. I have had three long sessions of programming, and am now reasonably stable. I am almost medicine free, only taking the very occasional half a sinemet tablet, mainly to help with fatigue, which is a new thing to me.

I don’t particularly look like I have PD now, but it is there. I am still a bit stiff, my balance is definitely affected and afternoon fatigue is common. However, I haven’t had my six month check up yet, so it is early days. Staff at Queen’s Square are very pleased as I am virtually drug free.

I understad why ‘it is not a cure’ is always stressed, but without doubt I would do it again.