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ONSI Surgery

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#1 Thu, 20/03/2014 - 13:17
CBailey
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ONSI Surgery

I am awaiting a meeting with a neurosurgeon to discuss whether I am a good candidate for the ONSI surgery.

Just wondered how many of us here have had this implant? Are there any things that would eliminate me fom having this surgery? I know there is a high risk of infection - how many have not had any side effects/infections from the implant?

Arise and be all that you dreamed.

Thu, 20/03/2014 - 16:06
Scott
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Team Cyborg will be along shortly, there are quite a few Sufferers on the Forums have had the implants done.

I don't see any reason why you wouldn't be able to have ONSI surgery and i would like to hope that you would benefit from the device. 

Funding in the UK seems to be the biggest hurdle as many of the Local CCG's don't like funding it.

Scott

 

Trustee 

 

 

Thu, 20/03/2014 - 16:07
duetto
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choleS

I was wondering if they could fit an external one temp, to see if it works before implanting wires and the device. with just the ends of the leads gioing into a smaall incision to connect to the nerves, I would expect this would have to be done as an inpatient.

[not got ONSI so not sure if this is already done or not, but would save having the whole lot fitted then having to wait to have it all removed again if you were not suitable]

Thu, 20/03/2014 - 18:23
TracyB
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Hi Chloe, I'm 38 and have had 4 operations regarding ONSI. I have not had any issues regarding the surgery or infections.  It's been afterwards with issues regarding the cables dislodging, the battery pack failed and cables failed! I was one of the very early implants so hopefully the equipment is better now.  Even though I have had lots of issues I'm still awaiting a further operation! I paid for my ops myself as it wasn't being paid for at that stage and I was the first one following the trial at queens square.  It helped reduce my pain levels, as I was taking 14 attacks a day, and they were all 8 and above with lots of 10s. After the surgery it took at least 6 months before I was getting any benefit from it.  I'm still taking the large number of attacks but it did reduce from not as many 10s as previous so this was a benefit to me but others think that this isn't a good enough benefit to go through neuro surgery! I disagree! Any improvement is worth it! I am on no medication as nothing worked and I have been using mindfulness techniques to help manage the pain.  Make sure and discuss every issue or query you have with the surgeon and do what you feel will help you.  Good luck.

oh and I also have a dog which helps me get up every morning and go out numerous times during the day.  Without him I was struggling to leave the house.  He's my carer!!!! 

Tracy

Fri, 02/05/2014 - 17:54
CBailey
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Thanks so much for your replies. I went to see the neurosurgeon on Tuesday, and unfortunately funding has stopped for pretty much all neurostim surgeries, including ONSI, DBS and the trial the Walton wanted to set up for the SPG stim. ...that was my last resort... crap!

Arise and be all that you dreamed.

Fri, 02/05/2014 - 19:33 (Reply to #5)
Dorothy
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That was rotten news Chloe.  :(

Sat, 03/05/2014 - 11:45
Mike
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Chloe, I wasnt very impressed with ONS. I had it more than ten years ago and although I had no infection or indeed few other problems for me it wasnt great. Given the choice of having it again I wouldnt  bother. Over the years I have found preferable treatments. One, Ultra High Flow Oxygen. This is much faster than High Flow O2. GammaCore is excellent and there is very likely to be an SPG trial UK wide, which I believe will  be a preferable alternative to ONS or DBS.

 
 
 
Chairman OUCH UK

Sat, 03/05/2014 - 17:02
duetto
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can anyone tell me what SPG [Sphenopalatine Ganglion Block] is please? Is it a stimilator implant like ONSI/DBS. read up on a few articles but none explained what is invovolved and how it was done in plain english.

Sat, 03/05/2014 - 19:47 (Reply to #8)
Dorothy
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No not like ONSI/DBS.  It's a procedure where they use something that looks like a pistol with a very thin barrel, the thickness of a knitting needle.  This is inserted through a natural opening in the nasal wall to reach the bundle of nerves behind the sinuses.  The surgeon pulls the trigger of the pistol which shoots a dose of Botox to the area around the nerve bundle.  I know of someone who had it done in Norway and it was very effective.

Dorothy

Sun, 04/05/2014 - 08:47
duetto
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Dorothy

 

thankyou understand it now.

Sun, 04/05/2014 - 17:14
CBailey
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Unfortuntely, the gammacore device wasn't effective (at all) for me, and ultra high flow oxygen (assuming this is what I get using the demand valve) isn't particularly effective either, although it does mean I can use Oxygen to my heart's content without triggering my SUNA also. When I spoke to the neurosurgeon at The Walton Centre, he said even SPG implant trial was on hold because of funding Sad Tried nerve blocks (multiple cranial, occipital) and they haven't helped either, and my list of medications tried are as long as the majority of us here.. :X The only thing I haven't tried is infusion therapy, but my neuro doesn't seem keen on that.

Arise and be all that you dreamed.

Sun, 04/05/2014 - 17:16
CBailey
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I thought the SPG implant, was an implant inserted through the gum/under the cheek, and was activated by a remote control. The SPG block is what you are referring to, Dorothy/Duetto.

Arise and be all that you dreamed.

Sun, 04/05/2014 - 19:25 (Reply to #12)
Dorothy
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Yes Chloe, the implant is under the gum. I was referring to the block.

Dorothy x

Thu, 08/05/2014 - 12:26
TracyB
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Hi guys! Does anyone know why they have removed funding for neuro stimulation???? Is it uk wide or just at that board?? 

Thanks Tracy

Thu, 08/05/2014 - 15:55 (Reply to #14)
John
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Tracy

Dr M at Queens Square told me a few months ago that all funding had been withdrawn apart from the SPG, which has to be applied for on an IFR. The SPG implant still has to receive Governance approval which should be anytime now, or not.

Chloe...The Ultraflow O2 is a different valve and mouthpiece to the demand valve mask, it's worth checking this out as the Ultraflow is a real help.

 

 

Fri, 09/05/2014 - 12:45
tangerinearmy
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using too much o2 can also trigger onsett of headaches

Fri, 09/05/2014 - 15:43 (Reply to #16)
TracyB
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Thanks John, appreciate the update! Do you know the reasoning behind removal??? Ie safety, issues with equipment or lack of its usefulness vs the cost??? 

Sat, 10/05/2014 - 11:42
Brian C
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Hi Everyone I don't comment often,but I would like to clear several things up.

1. Funding in Scotland is still going

2 Unless you think you have  nothing left you can do, don't get the ONSI it cost a lot of money for something a 1st year electrical student could make and have the exact same faults (X Design & Technology Teacher) mine laste 8 months and made my headaches worse.

3. The gamma core you are better getting a water pistol and filling it with your favourite tiple and sit back and enjoy, again cheaper.

Anything else I hope to find out because after all most a year of waiting I am hopfully getting to see Prof Goadsby.:quest:

Sat, 10/05/2014 - 13:10
Val
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As Brian has pointed out, there is no such thing as 100% cure or control for CH, this damn disease has a mind of its own I am sure.  But unfortunately we don't know until we try these treatments if they will work for us or not.  I wish Brian had had at least one of the treatments work for him and until the medical profession find something that works for all of us, we just keep trying I suppose.

Brian, I sincerely hope that the Professor can help you.  Please keep us posted with how you get on.

 

Val.

Sat, 10/05/2014 - 16:42 (Reply to #19)
Brian C
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PLEASE THANK EVERYONE FOR THEIR SUPPORT

BOTH THE TRUSTEES AND ESPECIALLY VAL & MIKE

Sun, 11/05/2014 - 18:55 (Reply to #20)
Mike
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Brian, saw Prof on Friday and he is now up and running at Kings for NHS patients. He said that his waiting list is not too long. Ask you GP if he would chase him. I've sent you his new NHS email address.

 
 
 
Chairman OUCH UK

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