Fed Up... Where to go next if my Occipital Nerve Stimmulator doesn't work
Posted , 2 users are following.
Hi
I'm new to this site and want to ask if anyone else has had an Occipital Nerve Stimmulator fitted and if it was a success. I had it fitted in March 2014 and had to have the wires adjusted as they were causing problems in my neck and not helping my migraines. I had about 5 week of some relief and my medication intake did reduce. However, in September of this year. I felt the machine stop working and had no sensation from it on one side of my head. Over the past week I am no longer able to bend my head over or reach my arms out without getting pain and a pulling sensation at the back of my neck. I have been sent for X-rays this week and am now waiting for the whole procedure carrying out again. I had high hope's on this operation helping. I understand it's not a cure, but I just need help with reducing the severity of my daily headaches/migraines. Has anyone else had equipment failure?
0 likes, 6 replies
sarah79890 karen30545
Posted
I had the ONS fitted in August 2012 and can gladly say it is the best thing I've ever done. I don't suffer from migraines, my condition is called SUNCT. I can say though that I got very disheartened in the first 12 months as the beneficial effect was minimal, however after a year, it really started to kick in and now I am drug free and back to leading a normal life again.
I have only had one problem with the equipment and that was because my charger ceased to work, but London replaced it with no problems. I have been very luck in that sense that I've had no issues with wires or anything.
My advice to you is that it is definitely worth trying again with it in the hope that you will gain significant benefit.
Please let me know how you get on.
Best wishes,
Sarah
karen30545 sarah79890
Posted
Thank you for your response. Your kind words are very encouraging. I am going ahead with the operation again. My surgeon took my case to a meeting today. So hopefully I should be hearing soon. I'm beginning to think the reason for it not working is due to the wires moving and that's what is causing the current pain I'm experiencing. I also read that you had problems with your charger unit. Mine is also faulty and is very tempremental. That should be replaced when the new equipment is fitted.
Thanks again Sarah & take care 😊
sarah79890 karen30545
Posted
I'm sure your surgeon (Mr Watkins?) must be confident that it will work otherwise he wouldn't be putting you through it again not least because of the funding issues.
All the very best of luck - let me know how you get on.
Best wishes,
Sarah
karen30545 sarah79890
Posted
I had the operation in Leeds where I live. My surgeon is Dr Barani, and I had it done as part of a research programme from St Jude Medical in America. I was offered this due to me suffering from Chronic Intractable Migraine for 35 years + and they were running out of options. No medication helped and neither did Botox injections.
i just wish they would hurry up and call me to go in!
Take Care
sarah79890 karen30545
Posted
I didn't realise they had started doing the operation elsewhere - that's good, at least you don't have to travel to London.
Hope they hurry up and get you sorted.
All the best,
Sarah
karen30545 sarah79890
Posted
I was one of about 3 who had it done under this research programme. More people are having it done now though, so I just hope it doesn't knock me further back. I have spoken to my research nurse today, who is calling me hopefully thus afternoon, once she has met with my surgeon and he's checked my xray's. I'll keep you posted.
Thanks
Karen