For PD patients, what symptoms and any other relevant criteria are considered before a PD patient to be considered a good or suitable candidate for a DBS operation on the NHS?
Also I wonder how that varies with a country / health care system that is funded privately?
Speaking only from personal experience and as a U.S. citizen, those with tremor dominant PD and who are otherwise generally healthy are good candidates. Also one must pass the neuro psyc testing. Age is not a factor. I was 77, a runner, with AFib and high blood pressure. 27 months post surgery, I have no tremor, but now have balance and falling issues that I did not have before the surgery. My quality of life is better, but I'm now having memory issues and no longer drive. There are pluses and minuses.
My experience is with a movement and disorder clinic in Wisconsin, USA. I had DBS surgery in April 2012. I had to pass a series of Neuro mental testing and had to react well to the medicine Sinement. While the DBS did as designed --it stop the shaking, I m in constant battle with my meds and Parkinson symptoms. I m 57 the PD daily battle is tiresome, but nothing compared to the shaking!!!
Thank you Jash and Kadie. I suspect that here in the UK, although the DBS operation may be free, it might simply be unavailable for all except the worst cases depending upon how much is left in the hospital's budget for the current year.
It does seen that in the US, by contrast, that though you may have to pay for a particular treatment it is likely to be available almost upon a pay and demand basis. That is if you have the money you may be sure to access the appropriate treatment upon the basis of clinical need. only.
My surgery was expensive however I had ins. with a high deducible. I had friends & family support with a fundraiser. They day of this special event I had two High school friends that I had not seen in 30 yrs pay the out standing amount on my deductible. I was humble and thankful.
please excuse the Freudian slip– I should have said "dispersible" Madopar!
Hi Pete. I seem to be in a similar position to you. I was diagnosed almost 9 years ago and, until recently, my symptoms were not too noticeably deteriorating but, for approximately six months, I can feel that my symptoms are deteriorating more quickly and, in particular, are outpacing my medication, thus causing longer and more depressing off periods.
Although my symptoms are rigidity as opposed to tremor, my consultant thinks that I am good candidate (I am 58 years old) for DBS whilethe same time he thinks I should be trying to relieve the early-morning symptoms with self injected apomorphine instead of dispensable Madopar. I went into hospital on Monday as a day case to try out the apomorphine pen but unfortunately it and the opposite effect to what was desired leaving me with the feeling that I had been injected with embalming fluid.
I am under the care of Salford Royal Hospital which is a centre of excellence for neurology and now been referred to Dr Monty Silverdale who heads the DBS programme. Although my consultant is referring me immediately to Dr .Silverdale, I understand that it can take anything between six and nine months to prepare me for DBS.
I have also looked at the possibility of having the operation abroad but, apart from the logistical problems, the cost is prohibitive say the least.
I have no real complaints about my care other the fact that it is always very difficult to get hold of my Parkinson's nurse or anyone else who can discuss things with me over the telephone. I have also been advised to consult a Professor Lees in London I am told he is top person in the country for Parkinson's. have you or anyone else come across him and if so, do you have an opinion?
I was referred to Prof. Andrew Lees about 14 years ago. I had been aware of PD like symptoms for 6 years by then, but did not have a diagnosis. Following a couple of out-patient visits, I was sent to Queen Square for a week as an in-patient for a barrage of tests. I met Prof. Lees only twice - and the second time was a training exercise for a group of young trainees. All other contact was with his registrars.
If you go to Queen Square as an in-patient, don't let them give you a lumbar puncture on the day of your discharge! I had one just 3 hours before embarking on a train journey home and it literally nearly killed me. I was in bed for ten days with the most excruciating headache imaginable.
I also came away with a positive diagnosis of PD following a DOPA challenge. The attitude of the doctors, following this result, seemed very flippant: "Oh ... we'll get you onto Levo-DOPA and you'll be fine" ..... I was 46 then with two children under ten, self employed in a one man, heavy labouring career, yet I was offered no advice, explanations or alternatives.
Verdict: unimpressed.
Hi, I am really sorry to hear of your very negative experience with Prof Lees, although you do say that it was 14 years ago – I assume that you went as an NHS patient. 14 years on I believe he has now retired from the NHS and only does private work. Although there is absolutely no way that I can afford private treatment, I am prepared to pay for a consultation with Prof Lees if he can, on the basis of his examination of me and my medical notes if necessary, re-assure me either that I am receiving the appropriate treatment or otherwise as the case may be.
Whilst I do not relish the prospect of what I will have to undergo to receive DBS, I can bear it if I know it is likely to lead to some form of longer lasting improvement so that I can get on with the rest of my life without constantly thinking about PD and what it is doing to me and others in my position.
On that basis, and what you may know now about Prof Lees as opposed to what you felt about him 14 years ago, do you think that it would be worth the time and money to go and see him?
Thanks for your help.
It wasn't Prof. Lees as much as his team I was unhappy with - he was far too busy to watch over every patient in his team's care. The point I was trying to make is really irrelevant to you I realise now - that was that you would be under the care of his team rather than the man himself. Clearly that will not apply to you.
I am not medically qualified, neither have I had DBS or been considered for it, so I am extremely reluctant to give advice on a matter that is so important. I will make an observation though; in my opinion, the best man to decide whether DBS is for you is the one who will be doing the operation if you were to have one.
Two names spring to mind of surgeons who have been at the forefront of DBS surgery - I do not know if they are still performing DBS today though. One is Tipo Aziz from Oxford; the other is Stephen Gill from Frenchay Hospital, Bristol. I know one patient of each of them and understand they are both highly thought of.
Finally, since Salford Royal is a centre of excellence in Neurology, I think I'd put my trust in them. But that is for me - I am not advising you to do the same. I'm afraid that decision has to be yours.
Sorry I can't be more helpful - maybe someone else can. Best wishes
Peter.
From Pete-1,
Please note forum members that the post from Moodyblue is not from Pete-1. I have never encountered Prof. Lees at any time.
It seems that I and Moodyblue are both Peters and a little confusion has occurred at least in my mind about who has written what.
I'm sure our readers will have spotted the difference, but, if I have caused any confusion with my carelessness I tender my apologies.
Peter (Moodyblue)
Hi yitzbendovid,
Just seen your post and thought I'd respond as I'm nearing the end of my assessment for DBS at Salford Royal. Very similar situation/ symptoms as you, 56 yrs old, 9 yrs diagnosed, rigidity no tremor etc. from being referred to Dr Silverdale the process has taken about 9 months but I've had a number of appointments, one after the other and the time has gone really quickly. There are a series of assessments, firstly with Dr silverdale who explains the process, then psychiatric appointment ( an hours chat); Levodopa challenge which was an overnight hospital stay during which I was videoed doing simple motor tests eg walking, foot tapping, sitting and rising from a chair etc, without medication and then with medication; psychology assessment included 2 seperate chats and an afternoon of doing memory tests which I found quite enjoyable. Then, back to Dr silverdale who said I was suitable and I'm now waiting an appointment to see Mr Evans the surgeon in a couple of weeks which will be followed by a scan under general anestheitc with surgery a couple of days later although I've been told I'll have the option of waiting until after Christmas for the scan and surgery. They do two operations a month, on a Monday with expectation you're out on the Wednesday or Thursday at the latest. That's as much as I know, having not yet spoken to Mr Evans so not sure about the next step although I think you return after 10 days to have the monitor fitted into your chest.
Hope this helps, once the process starts its pretty full on!
Hi Cyrano,
Thanks for getting back to me – it is certainly interesting to speak to people who have very similar symptoms and are at a similar stage with PD. I mentioned in my last message that the Apomorphine pen challenge had gone horribly wrong, although that is not to say that it would not have a more positive effect at later stage. Did you try this? If so, did it benefit you?
You seem very positive about DBS and I sincerely hope that it works for you. As we are both under the same hospital and the same consultants, please keep me informed of your progress towards DBS and/or feel free to suggest a chat at any time.
Just one disturbing thing which I heard recently and hopefully is not the case (although it did come from an orthopaedic consultant) is that allegedly many neurosurgeons are persuading their patients to undergo DBS because much of the work previously carried out by neurosurgeons is now being done by radiologists resulting in neurosurgeons having less and less work to do. I sincerely hope that this is not true and that any advice given by a neurosurgeon to undergo DBS is based entirely on clinical and not financial criteria.
One final thought, did you know that, at our stage, we are now considered to be advanced PD sufferers – isn't that comforting?!
I live in the UK, aged 60, have had PD for the last 12 years and have just been offered DBS. My main problems are 'freezing' and falling as my Sinemet 'on' time is becoming less and less.
While talking me through surgery my consultant showed me two of the neurostimulators one costing £7,000 the other £14,000. So I dread to think the total cost of surgery.
Despite problems with my general health because of my positive response to Sinemet , apparently I am a good candidate for DBS. I am still undecided!
Have you been offered DBS Pete-1?
Steve / Pete 
Just as you note problems in social welfare heath systems I see potential problems with monetary incentives for doing surgical procedures as well. In the UK the nice guidelines are the driver, i havent heard of people who are eligible having trouble getting DBS but I wouldnt be surprised. What is your experience?
There may be some info on these sites.
Nobody has spelled out eligibility criteria for DBS. Medicine dose is the criteria? or else
Muragod
Medicine is not a criteria for eligibility but may be a reason for considering DBS. DBS is certainly not suitable for everyone and there are potential side effects including speech and balance problems.
From a research report:
The most important step toward consistent DBS outcomes remains careful patient selection. More than 30% of DBS failures can be ascribed to inappropriate indication(s) for surgery. Patient selection is based on an individual risk-benefit evaluation for each patient that, in most expert centers, has been delivered via a multidisciplinary approach involving a movement disorder neurologist, a neurosurgeon, a neuropsychologist, an internist, and in many cases, a psychiatrist. Best results have been reported in patients with advanced PD and (1) excellent LD response, (2) younger age, (3) no or few axial non–LD-responsive motor symptoms, (4) no or very mild cognitive impairment, and (5) absence of or well-controlled psychiatric disease.
The effects of DBS on balance and gait are difficult to interpret because they are complex behaviors that may or may not be sensitive to LD or DBS, and many postoperative observations are anecdotal. In general, gait and speech that improve with LD therapy improve with DBS; however, ....STN DBS can worsen speech and gait in some patients.
In recently reported Study, depression worsened with STN DBS but was improved with GPi DBS. There are also reports of worsened verbal fluency, ........
Technical ability of surgeon resulted in poor outcomes in DBS patients
Parkinson's patient experiences improvements following stem cell infusions
DBS surgery to help with “ frozen feet “
Can someone suggest a good rollator for a PD patient?
