Occipital Nerve Stimulation (ONSI)

Hi everyone,

I have an Occipital Nerve Stimulator Implant (ONSI), which was implanted in November 2009. I have had a few problems a long the way, which resulted in me needing revisional surgery in September 2010. Although what benefits for my chronic hemiplegic migraine have been short-lived I am hoping with time this will improve. However, it has been beneficial for my SUNA (short-lasting unilateral neuralgiform pain with autonomic symptoms).

I would be interested to hear from anyone who also has an ONSI, or if anyone has any questions then please feel free to ask.

Michala
x

I was offered the option to be referred for assessment with Mr Watkins at Queens but I decided against it last year.It's a very difficult choice to make but after problems with a (non neurological) procedure in Aug made me dangerously ill I felt my poor family had seen enough of the inside of hospitals and high dependancy wards. My body was also telling me enough was enough and I decided to stop all heavy duty drug therapy and was told any abdominal surgery could further compromise my pancreatic problems.

M is very brave, as for mig sufferers this is ground breaking surgery and the perimeters for ONSI are very much in it's infancy for people like ourselves. I feel proud to know someone who is prepared to 'go for it' and feel that M is the first of a new group of people who will experience this procedure.

Are they planning to do any more tweaking to your implant M?

Lots of love
J
xxx

Hi Jane,

I have issues with my ONSI unfortunately, to the extend that Mr W wants to take it out!! My body is reacting to having the foreign object implanted by building up scar tissue to the extend that the wires from the electrodes in the back of head that run down my neck to my shoulder are stuck fast, instead of moving freely. I had emergency surgery last September to have my wires replaced for this exact reason but within about 3 months they started sticking again.

At the beginning of February the wires in my neck actually twanged!! I saw Mr W at the end of February as I needed to be retuned (I'll explain in a minute) and obviously he asked how I was getting on and as soon as I said that my wires had stuck again he instantly replied by saying that he'll have to apply to my PCT for funding to have it removed!! I was distraught, and said that is the last thing I want, I just wanted it to work!! Anyway, he said that the situation will get worse due to the build up of my scar tissue, so he left it with me to let him know when I wanted it out.

I must say that my experiences are very rare (typical me!) and if anyone is offered this I would most certainly say give it a go.

So, retuning is needed every so often due to the build up of scar tissue around the electrodes (I think I need this more often than other people I know with ONSI). The scar tissue interferes with the stimulation of the nerve, so Mr W has to change the frequency and/or use a different bead on the electrodes. You have 2 electrodes one on the left side and one on the right side, and each one has 8 beads. With my remote control I am able to increase or decrease the amplitude (strength) of the stimulation (and turn it on/off) and the width spread (how far the stimulation spreads out over the back of my head).

So Mr W retuned me at the end of February and already I need retuning again, so I'll be emailing QS later so that I can be added to the list.

Michala
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I cannot say how sorry I am 2 hear that. I think you have similar Luck (or lack of it) than me. I am so sad for you M. I do agree that other sufferers have benefited I wish you were amongst them. X

Big hugs hunny - I was so wanting this to work for you x

Thanks ladies. It is certainly sent to try us!!! I will hang onto it for as long as possible and you never know they may be able to sort it by then, e.g. the BION might be sorted by then, or they may take note of my suggestion and that is to put the wires in a sheath so that they can run freely inside it, whilst allowing the tissues to stick to the outside of it.

Oh that sounds like LOGIC!

I really do hope they (and you) can get this to work.

I'm full of the stuff...LOGIC that is!!!

I have just been offered this as my last option. My dr needs to apply for funding in my local area which he has no idea how long it will take. I have everything crossed this is soon and it works. I am so sick of being a walking medicine cabinet and suffering all the side effects that go along side. For now I try to suffer in silence my poor husband has taken enough of the stress and my new employers don't know about the problem.
Helen

It takes a while to get the funding - Kala has had it done - so she will be able to give you an idea of how long...

I do hope it helps you x

Hi Helen,

I was assessed my consultants for this is February 2009, the application for funding was made to my PCT in March 2009 and funding was granted in May 2009, and the surgery was then in November 2009.

However, I've several friends who have also had this surgery one was awarded funding in a matter of eight days, whereas others have had to wait three years and seek legal assistance, others over the past 18 months have been turned down even after appealing several times. Unfortunately, it is a lottery postcode and nobody knows how things will be with the whole shake up of the NHS.

Sorry I couldn't be more positive but lets hope you're successful and very quickly get the decision.

Where are you planning on having the surgery if you don't mind me asking?

All the best.

Michala
x

Michala,

How are you doing? Have you sorted out the issues with your stimulator? Are you still experiencing improvement in your SUNA?

A doctor is trying to convince my insurance company to pay for a stimulator trial. The doctors think I am a good candidate for a stimulator for the trigeminal nerve branches above and below my left eye.

Laura