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Success Stories

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Glenys Watkins - A Vital Success

Glenys Watkins and John WatkinsAbout four and a half years ago in September 2006, I was unfortunate to receive a serious head injury after falling downstairs. I had to undergo emergency surgery to relieve the pressure on my brain caused by the impact on my head and then spent two weeks in intensive care, my family not knowing if I would survive. I did survive and then spent nine months in hospital and rehabilitation as the injury left me with very little movement on the left side of my body.

Another consequence of the injury was my inability to swallow. This is called dysphagia and so I had to be fed liquid nutrition through a nasogastric tube (NG tube) which went directly into my stomach through my nose.

The Speech and Language Therapists who were responsible for providing therapy for my dysphagia did not seem optimistic about the outcome and were resigned to the fact that I would need a Percutaneous Endoscopic Gastronomy (PEG) tube feeding directly into my stomach to maintain my nutritional requirements.

At this time, six months after my accident I had regained some movement in my left leg but needed a wheelchair to get about.

The thought of having a permanent feeding tube was not a pleasant one and it would mean being unable to have meals with family and friends and therefore effectively end the prospect of any normal social life ― depressing!

My husband and I then started to look at what could be done for the dysphagia and sadly there were hardly any options available as the current treatment available in the NHS for dysphagia is very limited and largely ineffective.

By chance, we found on the internet a treatment called Vitalstim which is widely used in the USA and some other countries. This treatment uses neuromuscular electrical stimulation (NMES). Special electrodes are placed over the swallowing muscles to deliver small electrical impulses to stimulate motor nerves. There is only one person in the UK at the moment qualified to give the treatment, Ms Sumathi Sinnappan, a wonderful dedicated experienced dysphagia Specialist. who I was fortunate to meet whilst I was in rehabilitation in Stroke Rehabitation Unit in Denbyshire. I decided to go ahead and pay for the treatment after I was discharged from rehabilitation and so became the first adult to have Vitalstim in the UK.

The result was amazing. After only three sessions of treatment there was a big improvement in my swallowing. From being able to only swallow a few teaspoonfuls of yoghurt or mashed potato I was now beginning to chew and eat other food and my confidence returned. I had a total of seventeen therapy sessions and by then I was starting to drink ordinary liquids instead of having them thickened. I was beginning to feel normal again.

Glenys Watkins and John WatkinsAbout three weeks of Vitalstim therapy, I had the NG feeding tube removed. This was more than eleven months after my accident. The relief was enormous and I was looking forward to eating at the table with my family and friends again.

From here on my recovery accelerated and by eating normal healthy foods – plus some of my favourites such as prawn jacket potato and chicken fried rice. My strength improved and this helped tremendously with the physiotherapy treatment that I was having.

Today, three and a half years after Vitalstim therapy the wheelchair has long gone and I am able to walk with a stick and go almost anywhere to enjoy a normal social life. I can honestly say that without Vitalstim therapy this would not have been possible.

Fortunately I was able to afford the cost of the therapy and it is a great shame that it is (2011) not yet available in the NHS. There must be so many people who could benefit from Vitalstim therapy enabling them to have a better quality of life.

In addition, the financial savings to the NHS could be enormous by utilising this non-invasive, safe treatment which uses the latest technology and expertise.

The Watkins Family (pictured above)

Dr Lakhumal Hiranand Hiranandani, MUmbai, India

The Chairman of the Hiranandani Group Dr L H Hiranandani is 92 years old and a known case of Parkinson’s disease. Dr Hiranandani was suddenly admitted to the Dr L H Hiranandani Hospital (a hospital that has been built in his honor by his sons Niranjan & Surendra Hiranandani). At the time of admission, Dr Hiranandani was in the ‘off’ phase of Parkinson’s disease. In this phase, he was admitted to the ICU department under palliative care. He found it difficult to swallow the secretions and gradually also found it very difficult to eat food with marked difficulty in chewing.

A new set of dentures were put in place to see that the mastication improved, but this proved to be of no avail.

The neurologist suggested a peg which is percutaneous enteral gastrotomy. At this time also our in-house research had indicated that VitalStim actually stimulated and toned up the face and neck muscles especially in patients of Parkinson’s disease to enable them to eat and the treatment was also recommended by the neurologist from Philladalphia University, USA In our endeavor to find the most appropriate specialist from USA , we located Ms Sumathi Sinnappan in May 2008 who was kind enough to fly from the United Kingdom to Mumbai, India. Sumathi Sinnappan gave hands on training on the Clinical Intellect VitalStim machine and therapy to our Speech Pathologist and ENT specialist.

Though we have bought the Clinical Intellect VitalStim machine, we are not permitted to use it until the Speech Pathologist completed her course and thereafter was competent to use it on Dr LH.. Hiranandani under the supervision by Ms Sinnappan.

The results were good and there was a dramatic improvement in Dr Hiranandani’s ability to chew his solid food as well as to swallow liquid in the ‘Off’ phase. With enhanced medication while he reverted to ‘On’ phase, the VitalStim actually helped him to regain his strength and in a short time he was actually able to have normal meals independently and was soon on the road to complete recovery.

Chairman Hiranandani is very appreciative of this form of treatment and of the personal skills of Sumathi Sinnappan who is the leading authority in VitalStim in UK. She has also successfully treated the first patient in our hospital in India. She can make a huge difference in the lives of such patients.

Click here for a biography of Lakhumal Hiranand Hiranandani's.

Amelia Royle, Burton-on-Trent

My name’s Amelia, I am 50 years old and live in Staffordshire. I was born with an AVM (arteriovenous malformation) on the brain stem - a cluster of abnormal blood vessels which tend to bleed sporadically and cause a brain haemorrhage/stroke. To date I have had 5 brain haemorrhages. The last time I was ill (in 1998), I was left with severe sleep apnea, meaning that for the rest of my life, I have to use a ventilating machine every night to assist me with my breathing. In July 2009, out of the blue, I contracted pneumonia with a serious secondary infection and was hospitalized for 7 weeks. My illness caused severe trauma to the brain and, subsequently, I completely lost the ability to swallow and had to have a PEG feeding tube inserted in my tummy before I was allowed to leave the hospital.

When I returned home, life was very different: I couldn’t sit down and eat with my partner, it was difficult to socialize with family and friends and I couldn’t even swallow my saliva, which made it very difficult to leave the house. I felt very isolated and some of my friends found my condition so awkward to deal with, I’d rarely hear from them, which just added to my feelings of isolation. Although the NHS staff I had dealings with was well-meaning, I felt that they had given up on me and I was offered little hope of recovery.

During my convalescence at home, I did some intensive Internet research and was determined that, somehow, I’d find a way to start eating again. I found plenty of information on the Internet about VitalStim and eventually tracked down Ms Sumathi Sinnappan. She is the only licensed provider of VitalStim in the UK, practicing independently, who I was delighted to discover, worked from Stafford - not far from where I live. I was however very nervous about any future treatment due to my existing health problems and wanted to be sure that it would not spark a further hemorrhage or worsen my sleep apnea, so I expressed my concerns to Sumathi after giving her a detailed medical history. I was delighted when, after considerable investigation, she gave me the “all clear” and assured me that the treatment was perfectly safe for me, so I booked my first session as soon as I could.

It took approximately 8 sessions before I realized that my saliva control was much better; I no longer had to spit into tissues and I seemed to be re-gaining my “automatic swallow”. Also my voice (which had been quite slurred) was getting stronger. From then on, I quickly progressed from swallowing yogurt or custard type consistencies to chewing soft foods. After 7 months of not being able to eat anything at all orally, I felt elated ….. my enjoyment of eating was fast returning and I found myself feeling hungry all the time.

My goals were to go into a café to have a coffee and a cake and into a restaurant to eat … well, anything! Normal activities like these had seemed so far out of reach not long ago and now they actually seemed possible and I knew I was getting nearer to my targets with every session.

After my 18th session I fulfilled one of my goals and went into a café to have a cup of coffee and a piece of chocolate cake, which tasted fantastic. By my 23rd treatment, I had eaten out twice and enjoyed beef and ale pie and lasagna and chips.

I had 24 sessions in all and can now eat virtually all foods. I am also hoping to have my feeding tube removed in a couple of months’ time … before my partner and I go away for our summer holiday. In just a few weeks, I have my life back and can once again look forward to the future.

Paul Spence

PAUL Spence was one of the lucky ones. He survived his stroke. Every year 150,000 people in the  UK are affected by stroke - a third die, a third  is left disabled, and a third recover.

Paul had been driving on the M62 in  Lancashire one day last January 2009 when he felt a strong headache then a pain behind his eye. He felt like he was going to pass out.

Luckily he managed to pull over and call an ambulance. He spent the next three weeks in hospital. The stroke left him weakened down his entire left side - although physiotherapy enabled him to walk again, he was unable to swallow due to the muscles weakening in the throat, tongue and cheek and had to be fitted with a tube directly into his stomach so that he could inject liquid and texture modified  feed. He lost a stone and a half in three weeks. Talking was virtually impossible.

While he had survived, Paul was becoming increasingly depressed, particularly by his inability to swallow. 'Swallowing is taken for granted, but it’s absolute hell not being able to eat or taste food or even to have a drink of water,' says Paul. 'Most socializing is based around eating and drinking so I stopped going out. I had to try to switch off from food and drink, but you can’t switch off from it as it’s everywhere and the body has an appetite demanding you to eat and drink.

Yet following an innovative electrode treatment the 53-year-old airport manager from  Manchester can now once again enjoy his favourite  meal of fish and chips with a beer.

Paul's stroke had weakened his tongue, throat and cheek muscles which made it impossible to swallow, a condition known as dysphagia. “Until the treatment I couldn’t even swallow my own saliva, so had to spit into tissues,” says Paul. “I’d used up five kitchen rolls every day. I had hiccups for 17 hours one day too which was utterly exhausting. I was getting increasingly depressed.

“The hospital gave me exercises to improve my swallowing, such as making faces with my chin or pushing my Adam’s apple up with my hand 20 times a day. But they had no effect on me at all.”

Paul had to adapt to life like this until July 09, when his mother read something in a woman’s weekly magazine about a new treatment in the UK developed in America called VitalStim. Paul managed to get in touch with Ms Sinnappan, who carries out the therapy at Rowley Hall Hospital in Staffordshire.

“The treatment wasn’t painful in any way,” he says. “It was a tingling sensation, as if the throat muscles were being slightly pushed and pulled.

“After the VitalStim therapy started to work, I started to regain my weight and I was so happy to be able to drink and then later eat once more. Even after just two sessions I noticed a small trickle of saliva down my throat. Then after four sessions I could drink some water. It was fantastic. I celebrated with a beer. The treatment kick-starts the muscles there to start working again.

“After five sessions I could even squeeze down some soft foods like yoghurt and custard. It tasted delicious. After 12 sessions I could eat foods such as stewed apples or pears.”

Paul had a total of 24 one-hour VitalStim treatment. He traveled by train to Rowley Hall Hospital in Stafford.

Paul Spence is living proof. “Once more I can taste food and enjoy a drink,” he says. “There were times when I thought I’d never experience that pleasure again. After 18 sessions I could even eat my favourite fish and chips again. That was last September and it’s got easier and better since then. I’ve put half a stone back on and my weight’s steady once again.

“Now my swallowing is back to 90 per cent what it was which is amazing considering it was zero per cent before I started the treatment. I was lucky enough to be able to afford it as I’ve saved all my life, but it really does need to become available nationwide on the NHS.”

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