Vagal Bloc for my Daughter’s Hypothalamic Obesity? How one reader led me to another potential treatment breakthrough

imageI  missed something in my research over the last nine months. My search terms were usually “Hypothalamic Obesity + Treatment”. I avoided searching for published papers on treatment for general obesity because HyOb is a very different, treatment resistant form of obesity. However, had I broadened my search terms (and been inundated with hundreds of irrelevant papers) I may have come across this device:

The Maestro VBloc Rechargeable System

A few weeks ago, a lovely woman who has been following Hana’s journey here and on my Facebook Page sent me a link to a Bariatric Newsletter (‘bariatric’ meaning surgery on the stomach for obesity treatment) detailing the release of this pacemaker style device that delivers intermittent waves to block vagal activity. It is considered less invasive than other forms of Bariatric Surgery, consisting of two electrodes that attach to the stomach and an implanted subcutaneous device that is ‘charged’ with an external device weekly.

Why Blocking Vagal Activity is relevant to Hana

One of the causes for the complex condition, Hypothalamic Obesity,  is ‘disinhibited parasympathetic (vagal) activity’. This leads to increased insulin release which in turn causes hunger and impairs satiety. The concept of blocking vagal activity in Hana has been on my mind for some time; one of the main reasons I’d be interested to see if lap banding surgery works in her is due to the proclaimed “functional vagotomy” it is thought to perform. In fact, for Hana in particular, my husband and I aren’t concerned about her immediate satiety when eating a meal – Hana does get ‘full’ after eating (I’ll be posting an exciting homeopathy & brain healing update on this very soon), however this satiety is short lived and thoughts of food return too soon afterwards, dominating her thoughts, torturing her until the next snack or meal. So for us, reducing her stomach capacity during meals wasn’t necessarily something we thought would be necessary – however, inducing satiety in-between meals IS.

Surgical Vagotomies

Months ago, this led me to research something called a surgical ‘Vagotomy’ this is when surgeons actually CUT the vagal nerve during surgery. Naturally, the idea of ‘cutting’ a nerve is terrifying – to me at least. Dr  Robert Lustig in the USA led a trial of vagotomies and the outcomes were promising, however as far as I could see there was no longterm follow up of the participants. So, I emailed him and asked what the follow up was. He said that in spite of the promising outcomes, they weren’t conducting this procedure anymore and he didn’t detail why, nor did he have any long term follow up, so I was still left puzzling and pondering over this procedure.

Well, it turns out, that when researching the Vbloc, I found that the device is thought to work better than a surgical vagotomy due to the fact that the pulses are intermittent – this prevents the body from producing alternate neural pathways which over time, reduce the efficacy of the vagotomy. This concept sat well, very well, with me. So the night this lady sent me the link, excited, I immediately decided to put out ‘feelers’.

That Awesome Story I promised you…Fate? Synchronicity? 

It was late evening and my husband wasn’t back from work, the girls were tired and whinging around me but I was hooked to my computer screen – the Vbloc: Where could I get hold of one? Could this be a successful treatment for Hana? Did it have potential to transform her quality of life? Could I get it now or would I have to wait 10 years for a number of trials to finish!?

I scrolled through the Enteromedics website wondering how I get one, even if it meant flying to the USA and begging on their doorstep – I’d do it. I can do ‘desperate mum’ really well…because I am one. It seemed that the device was still only on clinical trial – for adults. Hmmm. Undeterred I went straight to PudMed to look at the published research. The girls were growling louder – ‘Hang on, just one more second,’ I kept saying, then I grabbed the first study that cropped up. There was a list of academics involved, the authors of the study. If I can just get in touch with one of them, perhaps they’ll know how, where and when I might be able to get one of these,’ I thought as one of the girls climbed on to my lap, bored of waiting for me.

There –  I randomly grabbed the second name on the the list of authors – it seemed like a nice enough name to me, and got brought to his page on Research Gate, bonus, as that’s where I could start looking for his contact details… He turned out to have a link to the university that he taught as a professor at with his contact details  – and imagine my surprise that this University turned out to be in Australia and that he appeared to be Australian! “Awesome!” I shouted to Hana who was looking at me grumpily from the lounge floor. I copied his email and formulated a polite yet desperate email asking if he or anyone he knew could help us, highlighting that we were very interested in the Vbloc device and wanted expert opinion on the option of gastric surgery for our little girl.

Then I put the girls to bed.

The next day I spent both gabbling excitedly to my husband and the Vbloc and wondering loudly how I could get some pioneer somewhere to consider conducting a clinical trail of this device on children, namely Hana, of course. I even emailed Enteromedics saying we’d move to the US for a trial if one was in the pipeline. THEN, mid afternoon, during nap time  – when I couldn’t shout with jubilation – the penny dropped. I looked more closely at the page I’ve linked to above and realised how, how in my haste the night before (the growling girls…) I’d missed the fact that the device had in fact been passed through the TGA here in Australia – the device was on trial in the US but it was available here!

Immediately I googled Vagal Bloc Australia and got taken to this clinic in Adelaide, a clinic that actually uses the Vagal Bloc! Then I clicked on clinic staff and got the surprise of my life: Can you guess whose clinic it is? Yes! The man I’d randomly and hurridly picked then emailed from the long list of authors of the study the night before!

Help at last…

The wonderful man, Prof James Toouli, that I emailed got back to me within hours (bless him for helping me) and advised me to see his colleague Dr Lillian Kow who co-runs the clinic with him. She also got in touch and has said that Hana, my husband and I can go and see her to discuss treatment options.

She has said that the Vbloc has never been used in a child before and therefore may not work. After seeing us, she may also not recommend it as a treatment for Hana – perhaps there will be undesirable side effects to her? Perhaps their pediatric surgeon may not want to conduct this procedure on Hana for whatever reason. All of this we will find out when we finally get a chance to sit down and discuss this with her. We are excited but prepared to hear that the Vbloc may NOT be suitable for Hana. If it isn’t for whatever reason, it still may be suitable for others suffering from the same condition so it is worth sharing and talking about this as a treatment option that until now, as far as I’m aware hasn’t even been postulated as a treatment option for Craniopharyngioma survivors with Hypothalamic Obesity.

So keep in touch – the appointment and flights to adelaide are booked for NOVEMBER 13th! I’ll let you know how it goes.

More on our Brain Tumour Journey here . I share the  daily stuff on my Facebook Page  so please get in touch, I’d love to hear from you xx

 

 

 

 

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  2 comments for “Vagal Bloc for my Daughter’s Hypothalamic Obesity? How one reader led me to another potential treatment breakthrough

  1. Dan
    October 14, 2014 at 2:27 am

    Hi Naomi

    I read an article in the newspaper about you and Hana.
    I hope things work out for you.
    Hypnotherapy can help reduce hunger and alleviate pain.
    Dentists have used hypnosis on patients to operate without any pain killer
    Used in conduction with medical treatment Hypnosis may help Hana.

    If you go this route speak to you doctor about getting a referral to see a clinical Hypnotherapist.

    Best Wishes
    Dan

    • Naomi R Cook
      October 14, 2014 at 7:15 pm

      Hi Dan! Thanks for getting in touch! I’ve heard great things about hypnosis. In fact I did pursue this a few months ago although we had so many other appointments at that time we just couldn’t fit anything else into our schedule! It’s something that I would definitely consider again in the future.

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