Has anybody tried this treatment

and how was their results......!

I hope this link works because I'm just

getting familiar to this site. If not maybe you can cut and paste.

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It is Michael's experience with that procedure.  Michael is in Switzerland.

Chuck

ClusterChuck wrote on Mar 29^th, 2009 at 10:55am:

Read this thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE It is Michael's experience with that procedure.  Michael is in Switzerland. Chuck

Thanks for the link to Michaels thread Chuck.

Very informative and interesting

ClusterChuck wrote on Mar 29^th, 2009 at 10:55am:

Read this thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE It is Michael's experience with that procedure.  Michael is in Switzerland. Chuck

Thanks for the link to Michaels thread Chuck.

Very informative and interesting

man there are so many alternatives to getting your head cut open and/or taking imitrex.

edited to add: that are much cheaper and more effective

[quote author=42454C4C444F4F200 link=1238337642/0#0 date=1238337642]Has anybody tried this treatment

and how was their results......!

I hope this link works because I'm just

getting familiar to this site. If not maybe you can cut and paste.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

i know this lovely lady who had the ONS done last year, and she is doing very well, not sure of the exact figures, but i do know that her CH has greatly improved and she is enjoying a full night's sleep!!

i thinkt there may be someone along soon who can give you a better answer than me.

My husband is at the moment waiting for funding for the same op, we have already spoke to the surgeon and know what to expect!!!

If Andy can get even a fraction of the success that she has had and escapes the through the night attacks then we would consider the op a success!!

sandra

Sandra I'm glad to hear she is doing very well  i was following her story.

Pass on my best wishes  if you see her again. Chuck posted a good

link to Michael's journey with this procedure. I think its definitely a thread your husband should read if he is considering this option.

Best wishes Tony.

I just noticed your address. My Wee one just loves Balamory...!

lol, glad she likes it

had a look at Michael's thread, made very interesting reading, but have also had lengthy conversations with Val, so we are both going into this with both eyes fully open, also having spoke with Lawrence Watkins, we are fully aware of the ins and outs of the procedure, the National in London is a wonderful hospital, and we are grateful that they will be doing the procedure, i reckon Andy's in good hands!!!!

will tell Val you were asking for her!!!

sandra

-johnny- wrote on Mar 29^th, 2009 at 3:19pm:

man there are so many alternatives to getting your head cut open and/or taking imitrex. edited to add: that are much cheaper and more effective

[joHnny]w_ an_h could you expend, or explain……

Michael

IMO, most docs consider surgery as a last option, but it is one that needs to be kept open and may be appropriate if other treatments do not work.  

I think that two types of surgery have been mostly abandoned (deep brain stimulator and gamma knife), but an occipital nerve stimulator is not nearly as invasive as deep-brain, or as irreversible as a cut with the gamma knife.

Quote:

and she is doing very well, not sure of the exact figures

50% better than she was Sandra ;)  

The surgery is not invasive with very little scarring and is reversible/removable should it not be of any benefit. ONSI does not work for everybody! Thankfully it has for Val - it's great to get a full nights unbroken sleep. Something we haven't had for about 6 years.

and there are No legal alternatives in the UK -

Rod

thanks!!!

knew it was something like that!!  8-) ::)

see you soon  ;)

sandra x

Dyno wrote on Mar 30^th, 2009 at 6:08pm:

The surgery is not invasive with very little scarring and there are No legal alternatives in the UK - Rod

Main Entry: in·va·sive  
Pronunciation: \-siv, -ziv\
Function: adjective
Date: 1598
1: of, relating to, or characterized by military aggression
2: tending to spread ; especially : tending to invade healthy tissue <invasive cancer cells>
3: tending to infringe
4: involving entry into the living body (as by incision or by insertion of an instrument) <invasive diagnostic techniques>
— in·va·sive·ness noun


Bob

The implantation of the ONS is an invasive procedure! just placing the “generator” in the “pocket” in the lower abdomen is an invasive process…. and then placing the “leading leads” to the head is invasive and complex….. I did post the photographs from the surgical procedure
and one can imagine seeing the pic. what invasive is……

The implantation of an ONS is not for everyone! it is still in development, and I recommend the ONS only to CCH’rs  that use it as last alternative, after all (school) medicine alternatives
had failed for them. and as in my case, the use of alternative medication is a taboo, for practical reasons….

I do recommend the ONS, or better said I recommend all CCH’rs that suffer from medication intolerance to explore this alternative, It can bring some relief, and any improvement is welcome……  

The alternative of DBS (deep-brain surgery) is not off the table at all, or abandoned, it is still a valid alternative, and used in some cases, but only after all other alternatives had been explored and failed! it is also a method in development and needs still more R&D but it is being used and developed…. and with the modern neuro surgical technologies it is a very valid alternative, but only as last alternative!

Michael

wildhaus wrote on Mar 31^st, 2009 at 6:54am:

The implantation of the ONS is an invasive procedure! just placing the “generator” in the “pocket” in the lower abdomen is an invasive process…. and then placing the “leading leads” to the head is invasive and complex

Thank you Michael

Be well,
Bob

My apologies Bob.

Should have said 'not as invasive' - not as invasive as DBS.

The ONS surgical procedure is not a trivial thing, and it should be considered only as last resort!

I had no choice….. and as my medical situation has deteriorated very rapidly due to the treatment - Occipital nerve block, a treatment that worked very good but I have developed a very strong adverse reaction that had forced me to choose a radical alternative, and reduce the dependency on pharmaceutical products…..

I am adding some images of the surgical procedure, the implantation of the probes into my head….
as well as an X-ray of the probes…. in my head, to give a correct a descriptive picture of this procedure..

(I am using links and not images, the images are very descriptive, and I dont know how to post pic. on the new board.... )

this image is the base of the skull opened and inserting the probes into the skull base.

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next  image, both probes are inserted

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X-Ray image of the position of the probes in my head.

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next Images are leading the “cables” to the lower back

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(This is a (partial)  copy of a post I have made on the thread about my journey and adventure into the ONS.


Michael

Nobody is trivialising ONSI. Any surgery, no matter how minor has its risks and ONSI is not the magic bullet for everybody. One member that tried it is now being offered, and is considering having, DBS.



Quote:

this image is the base of the skull opened and inserting the probes into the skull base.

Perhaps, Michael, your surgery was different to my wifes. With her, they exposed the base of the skull and stitched the electrodes to the Occipital nerves at the point where they exited the skull - just below the scalp - they didn't have to open the base of the skull. At this point they also gave her a massive GONB - not hit and miss this time, the nerves are exposed and they can hit the 'sweet spot'.

Wow.  I've never even heard of this surgery.  Is it something new?  Very interesting stuff.

Don't know about the States but the first ONSI for cluster headache was carried out in 2003, in the UK.  

Just noticed this:


Quote:

next Images are leading the “cables” to the lower back

They must do it different where you live. Over here the cables are placed from the back of the neck, over the shoulder, and down to one side of the abdomen to the battery pack. Nowhere near the lower back!

Rod

Dyno wrote on Apr 3^rd, 2009 at 1:52am:

Just noticed this: Quote: next Images are leading the “cables” to the lower back They must do it different where you live. Over here the cables are placed from the back of the neck, over the shoulder, and down to one side of the abdomen to the battery pack. Nowhere near the lower back! Rod

I add one more pic. to give you a feel of how it was done on me in Switzerland (KSSG)

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and you can find more info. over the link Chuck provided.......
of all the prosidure


Michael

been watching this thread as my hubby i hopefully having the ONS done this year (once we get funding)

and Rod is right,it is done differently in the UK, it will be the same surgeon that does Andy's op that done Val's!!

Sandra xx