Hello each ive had some interesting news today been and had appointment with my parkinsons nurse and i have been forwarded for deepbrain stimulation at the Queen Elizabeth hospital in Birmingham as my parkinsons is tremor dominate i have tried different tablets to no avail and we have both decided surgery is best option for me could take upto 12 months from start to finish i suppose ime lucky in many respects not having any other symptoms my heart goes out to you all i just hope this works for me but there are many hidden dangers in surgery has anyone else had this type of operation welcome all replies calv
Many of our members have had deep brain stimulation so I’m sure you’ll hear from them soon with their own personal advice.
In the meantime, we have a lot of information on the Parkinson’s UK website on this along with personal stories of people that have undergone dbs. You can find this section here: https://www.parkinsons.org.uk/information-and-support/deep-brain-stimulation
Our helpline and Parkinson’s local advisers are also here to answer any questions you have about deep brain stimulation surgery. Call us on 0808 800 0303.
This is why you should have a Peer Service someone to talk too about Deep Brain Stimulation. Sometimes answering a email you can’t answer what you mean to saw.
My wife was asked to talk to someone at the RVI Newcastle by the specialist nurse she talked to her over the phone and we met at a clinic in Newcastle.
How about Parkinson’s do something that is of benefit to patients it is one hell of a decision to make to have DBS surgery. It’s about time you did something for people in isolated rural locations no every one lives near large cities we live 75 miles to Newcastle and 110 miles to Manchester.
There are various targets for Deep Brain stimulation, I had STN (subthalamic nucleus) but with tremor they may suggest thalmic. Often people think of DBS as the last resort. RUBBISH. IT should be done in consultation with your Neurologist and generally provides positive results. Some of the guests who come to our Centre, come from the USA and some have had DBS before Starting on Levodopa (mainly early onset). God bless
Hi @calv1960, I had a DBS fitted seven years ago on Monday and I am living proof that it works. Before I used to wobble like the perverbial jelly !! lol Although I have a Dystonic Tremor, the Parky is under control, it was the best thing to happen to me having had mine fitted at Addenbrookes Hospital, Cambridge but because I now live in Devon I come under Southmead Hospital at Bristol for my check ups and they are now able to replace my battery when it comes up for renewal(usually about 5 years). I have a St Jude system fitted which these days is controlled by an i-pod !! There are systems that do rechargeable batteries which may be an avenue worth exploring. Having had the device fitted on the Monday because I recovered so well my Consultant was in on the Tuesday morning setting it up(usually there is three weeks before they actually switch it on). On the Thursday I was discharged looking like something from the Mummy !! lol Since then i’ve had check ups but with the pandemic these have been suspended though I did go for a special meeting regarding my device at Southmead a couple of weeks ago as they are dealing with my system now. It is a difference of three hours traveling to Bristol(1hr 50) rather than Cambridge(5 hours) !! If you should need further information don’t hesitate to get in touch. I have said before on this forum that it does seem to be a daunting experience but the way to approach it, as i’ve learned is to adopt a positive attitude and be gung ho when you get to having it done.
Hi alman this dbs is not a last resort for me the medication i have been taking do nothung for my tremor unlike some i don’t have other parkinsons symptoms just an annoying tremor i can do all things i want to regarding my parkinsons ie tremor i suppose ime rather lucky with this disease a lot of people are not so lucky but ive had many other operations over the years but thats another story ,whether i am suitable for dbs only time will tell early stages as of yet thanx for your reply
hi cruise controller ive read there is different dbs operations is this correct i have a left hand to elbow tremor no other symptoms of parky as ime aware off i dont respond to dopamine increase with meds i have armswing walk normally the only thing i have is back ache which ive had all my life through lifting weights without a belt when i was 18 my parkinsons nurse has asked me to go for dbs because ime tremor dominate with my parky so hopefully in 12- 18 months time i could be tremor free with medical aid it would be nice to socolise with out getting embarrassed in public thanx for replying
Hi, I don’t know of different DBS Operations may be your Parkinsons Nurse can help you with this. Regarding your tremor at the moment, try not to feel embarrassed by it but use it to your advantage by making a joke of it. When you’ve had the operation you will notice the difference but you will still have Parkinsons but it will affect you in a different way. As many have and will continue to say that we are all different in the world of Parky so you won’t be totally free of it so adopt a positive attitude. Take care and stay safe.
I had DBS surgery in December 2016, at Kings College London. I have no regrets at all. The operation was not painful. Going to dentist is far worse. My symptoms were primarily stiffness of movement such that I found it difficult to walk, dyskinesia and balance. Whilst I had minor shaking it really wasn’t a big issue.
It does take a while to fine tune. But my walking improved considerably as did my stiffness. Speaking to other people who had the classic shaking, the difference was incredible, to the point that it stopped altogether. As you know it is not a cure but it does rewind the clock and allow you to reduce the amount of medication you to take. In in my case probably it rewound the clock about ten years.
I did though find my balance got worse and it does wear off over time.
I chose not to have the rechargeable battery.
By way of background after a number of unnecessary operations I was finally diagnosed in 2011 but thinking back it probably started in 2007.
Hope this helps
My husband had DBS September 2018 after having suffered for several years with very severe dyskinesia. It was about a 12 month process from seeing the Consultant. It has been well worth it but it did take a while for everything to settle down but overall his recovery was remarkable. Unfortunately he did have some festination afterwards - we had never heard of that but that settled. It took some tweaking of the deep brain stimulator and the NHS care was superb.It was definitely worth going through.
Hi can i ask you how old was your husband when he had dbs how long was the operation and ime glad your husband Has responded well does your husband still have medication, ime having dbs because i only have tremor no other symptoms to my knowledge i have arm swing, normal voice ,etc, medication co careldopa levodopa has no affect to me at all but i said i would try meds i walk normal i can dress myself and i go to work i also drive daily ime looking forward to meeting my neurologist for the next part my journey also thx for your reply
My wife was 55 years old having had PD for 8 years. She walked down for the op at 8.30 and was back about 5 but once she’s asleep she likes making the most of it. They say the op takes about 5 hours but you have to think about the MRI scans and the fitting of the cage. She was under all the time Boston rechargeable unit fitted switched on the following day discharged the day after. This was done at the RVI Newcastle
Would dbs control my resting tremor by not having to feel tremor or would it be the same as not having dbs also would having dbs reduce my quality of life and what is the success rate of dbs in adult male with little to none parkinsons
Hi my husband was 58 and the operation took about 7 hours. We went home two days later. Yes he does still need medication - slightly less but he still needs to have the apogo therapy pump. best wishes