GAIL'S PERSONAL DBS EXPERIENCE
Gail Ford has been a client of MediWatch since 2013.She is a fiercely independent woman who has travelled the world including Russia, also published her own book and raised over $5000.00 her chosen charity thelureofrussia.com
In 2010 at the age of 70 yrs, Gail was diagnosed with Parkinson's and found by 2017 @ the age of 76 yrs old her heavy dosages of Parkinson's drugs were no longer working effectively. Gail then sought the help of Medical specialists in Sydney and had 'DBS' Deep Brain Stimulation,late in 2017.Gail is extremely happy with her outcome and wanted to share her experience including her procedure before after & costs involved.
This is Gail's story written by Gail, we are lucky enough to be able share Gail's story on her behalf.
DBS (DEEP BRAIN STIMULATION)
PRE AND POST SURGERY:
· I was diagnosed with Parkinson’s in 2010 but it had no doubt been lurking around long before that. By 2017 I was on heavy dosages (optimum in some cases) of a number of Parkinson’s drugs, and was having many ‘off’ periods when the medication did not seem to work. This meant that I could not confidently arrange to do anything.
· In January 2017 my neurologist in Sydney said it was time to discuss ‘advanced therapies’ and went through all the options, none of which sounded much fun. I was keen to find out if I could have DBS, as this seemed the best long term procedure, and I did not have any issues about brain surgery. He did not think that I would be suitable for DBS (largely because of my age – I was 76 at the time) but said he would like a second opinion, and referred me to a neurologist and a neurosurgeon specialising in DBS, who led a team at Royal North Shore Hospital.
· In March 2017 I had a new MRI before seeing both of these specialists. Neither foresaw problems. I had further discussions with my own doctor and decided to go ahead with tests for DBS, with his full support. I asked if the surgery could be done in early December, which suited me best. The timetable was therefore geared to this.
· in August I spent 3 days in the Royal North Shore Hospital in Sydney undergoing a range of tests including:
i) taking me off all medication for the first dose in the morning and testing the result (I was a mess!)
ii) two psychiatric tests by the team’s psychiatrist: a cognitive test (I guess to show if I had any dementia), and a psychological test (for depression, etc.) He also took a brief family history.
· I saw the DBS neurologist again in September and November to discuss the procedure and finalise arrangements.
· I went into Royal North Shore Hospital on Thursday December 7th, had the surgery on Monday 11th,
and was discharged on Tuesday 19th (see details of the surgery and hospital stay, over page)
· After the surgery I stayed nearby for a week but had no need to contact the hospital or doctor. I saw my own neurologist the day I left hospital to fill him in on my progress and saw the DBS specialist again in January and February for general follow-up and to adjust the stimulation. Everything was going smoothly.
· I had arranged to stay with someone, or for someone to stay with me, for about 6 weeks after the surgery. This helped, as I could not drive over this period, but I probably could have coped by myself after about a month.
· In March my speech became a problem – not only the volume, but words were getting stuck (or freezing) and I was slurring badly. I saw the DBS specialist about this in March, and he adjusted the stimulation.
· My speech did not improve and so in late March the DBS neurologist put me into hospital for 5 days to have a series of adjustments to the stimulation and medication. Progress was slow, and a bit disheartening, but after I left hospital to my delight (and everyone else’s) my speech returned, and the volume was better than ever.
· Since then I have had two more’tune-ups’ I hospital an nd my own doctor has been making adjustments and monitoring my Parkinson’s. Things have gone fairly smoothly and my speech remains good. My walking, however, is a bit slow and lumbering. My only ‘strange’ behaviour is that I am told that in the first few months after surgery occasionally I would yell out very loudly in my sleep.
· Throughout the whole process I found it invaluable to talk about the treatment and discuss practicalities with
a friend who had had DBS about a year before.
THE SURGERY AND MAIN HOSPITAL STAY
· My surgery was on December 11th. I was admitted to Royal North Shore hospital four days beforehand, possibly because the 11th was on a Monday. These 4 days were just boring – X-rays, visits by doctors etc.
· DBS entails high frequency stimulation of the relevant part of the brain. This requires putting 2 electrodes into the brain (one each side) and linking these to an implanted device or ‘box” similar to a heart pace-maker, which you and the doctor can control. The surgery requires a large team and mine took about 8 hours: 5 hours in the morning when the electrodes were put in, during which I was semi with it; and 3 hours in the afternoon when the ‘box” was implanted and linked to the electrodes, when I was out to it. I have, however, little recollection of the morning surgery except hearing the surgeon saying that it would be noisy and hearing the drill, but I could not feel anything. I think that at another stage I called out ‘No,’! Otherwise it is a blank!
· I came to some time that night in ICU and was very groggy but not in any particular pain. I think I was in ICU overnight and part of the next day, when I was returned to the ward.
· In the next week in hospital I had no pain – I just had to be careful with the surgery sites, which the surgeon checked. The neurologist visited at least once each day and the Metronic rep. came in and explained the ‘box’.
· The only real problem I had in hospital was getting an extremely itchy back, particularly at nights, making sleep difficult. This persisted for over a month, though a low cortisone cream from a chemist helped. Other people I have spoken to have experienced a similar problem after DBS surgery but I have no idea if there is a connection.
· I had bought a wig, knowing that all my hair would be cut off, but never used it – it was too hot. scarves and a sun hat sufficed. My hair grew very quickly and within about a moth I did not need any head covering.
· My initial outlay was about $38,000 (Of this the neurologist was $11,539, and main neurosurgeon 13,391)
· Medicare refunded a total of about $10,000
· Medibank Private refunded $2760
So after refunds from Medicare and Medibank Private I was out of pocket about $25,000 for medical expenses.
CONISDERATIONS FOR ANYONE CONTEMPLATING DBS:
· Be clear about expectations.(I wanted greater stability & less medication. It was very successful on both counts);
· It is important not to have (or to overcome) any hang-ups about having a surgical procedure in the brain;
· Select your medical team carefully, considering experience (and results). This may mean going interstate;
· It helps to have a doctor you can relate to and feel you can ask anything you want, without feeling ‘stupid’;
· You can have a chargeable or non-chargeable battery (replacing batteries after ~ 3 years). I went for the latter.
· You have a choice of the position of the “box” – below the waist, or chest (on right) which I have – it works well.
· If things go wrong in the first 6 months don’t panic – this can happen (as it did with my speech);
· It is very helpful to have a family member or friend present at key discussions to help keep note of things;
· It also helps to be able to talk to someone who has had DBS, though procedures change;
· Unfortunately DBS is not cheap (see above) - but it gave me my life back, and you can’t put a price on that!
If anyone would like to talk to me about my experience with DBS, I would be happy to do so.
02 6231 8247
Gail's Inactivity Sensor
Gail Ford has been a client of MediWatch since 2013. She lives in Canberra with her two dog's. Since Gail lives alone she wanted to safe guard her health and make sure her pets were not left unattended if something were to go wrong. With having a Mediwatch system installed we're monitoring her inactivity within her home.She doesn't wear a pendant,instead if no movement is detected within a 12 hour period we will contact her and check she is Okay,if no response, call her neighbour, if no response from her neighbour call an ambulance.
An inactivity sensor is discretely placed within her home looking similar to an alarm sensor she also has a HELP button fixed in her shower.
Only recommended for the more mobile ,healthy and active people who live alone and not wanting the stigma of an older person with a button.
In later life Gail can also have a necklace or watch pendant close at hand, adding another layer of safety.