Hi,

I have been a chronic suffer for the last few years, it is hard to remember when it started as the years just start to roll into one.

I have been having regular GON blocks which give me at least a couple of weeks rest untill it goes and returns but a couple of weeks is bliss and I never take that time for granted.

I am very lucky as I have excellent support from my Nuro in Glasgow and if it wasnt for him I doubt I would have made it through,  am on the usual meds verapmil o2 gabapentine and imigran injections.

The reason for the post is it was discussed at my last vist for an opperation where and (I am sorry for not using the right medical terms) where they attach wires to the nerve at the back of your neck and a battery pack in the lower body area.I have said no before but as I was up yet again in the early hours I thought am I mad not to be considering this opperation?

So my question is has anybody had this opperation and if so what sucess and any problems you have had with it?

Any feedback is very much appreacated. My concern is that I also suffer from an imflamatery disese and I have lots of problems with my neck and I am concerned it could cause me extra problems?

I assume UK? If yes, you will get more reliable responses to your important question by posting on your excelllent support group,
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The experiences in the U.S. might be quite different reflecting the nature of medicine in this country.

Just found a review which has some info. which is on target. See PDF file, below.

---

Sorry, I don't know about the operation, I can just say that if it was me I would first seriously explore the potentially powerful non invasive therapies available (for both prevent and abort) that you won't likely hear about if all  of your info is coming from a neuro.

Specifically these:

High flow/non rebreather O2 as outlined in the oxygen info link to the left. This is much more effective than how the the slower moving than the slowest moving sloth medical profession ordinarily still prescribes it.

The high dose vitamin D3 regimen that has been a hot and relatively recent topic around here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The clusterbusters.com approach. This is not so recent - clusterheads have been reporting astounding prevention results with it for years now. If you were to hit the clusterbusters.com message board START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, you'd run into some pretty happy, pretty much former chronics, who wish they'd dumped the verapamil etc. that had stopped working for them much earlier. Tell Hipshot, Tingeling, Brew et al I said hello.  :)

Here's an article in Newsweek (a big mainstream US news magazine) about clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Bejeeber is right, you know.

Jay,

Don't Do It!!!!  And don't let them talk you into it without a long hard look at the limited possible benefits vs the downside of expense, pain & discomfort, and the high probability of a psychological let-down from knowing you bought a lemon...

At best, the ONS will only buy you partial relief during the day while awake.  It will do nothing for you when sleeping where attacks hit and gain in pain before you awake... at that point the ONS will be useless... and sumatriptan iffy.  Ask the neurosurgeon about that... and the percent of patients who have gone through this ordeal and still claim it was worth it...

Only oxygen at flow rates that support hyperventilation worked most of the time under these conditions.

For a complete first-hand account of ONS complete with photos from the surgery, read the following link posted by Wildhaus...  Read all 4 pages...

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That was in 2008...  Michael just went in for surgery this weekend to replace the sending unit in his tummy...  it failed.

That makes ONS a very expensive and very painful attempt to control your CH... that will only work while awake and then not all that well...   

Try the anti-inflammatory regimen first.  You can find it at the following link: 

It's titled "123 Days PF And I Think I know Why" , on New CH.com Forum. To view it, please click the link below:

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Take care,

V/R, Batch

Can I just say thank you to everyone who has taken the time to reply to me. I am in a bad place at the moment with my CH. I do use the oxygen and imigran injections and verapmill.

As you know sometimes this can get to you and as my wife had to remind me this has been going on for 4 years not 2 as I thought. It just seems to mearge all into one at the moment.

I usualy cope fairly well but I seem to be losing the battle at the moment, the attacks have just seemed to wack me out so much at the moment I cant seem to get my brain to think clearly and that why it is so great to have people who know how this feels. I sometimes wish I had a big piece of metal coming out my head then at least people would understand.

I will never let it win but at the moment I feel the CH has won this battle but it will never win the war!

Attitude is everything in the battle with the beast Jay. Everyone has been where you are now, getting our asses handed to us, beast having his way, you get depressed and start grabbing at straws. :'( Batch's post probably says it best.

It IS probbaly a lifetime affliction. On or off cycle, be educating yourself and planning for the next cycle. No matter how well your current regimen works, continue to educate yourself so you have a plan "B" and a plan "C" just in case your current regimen fails you. Sending good vibes your way hoping you can get back on top again. And always feel free to come here and bitch and moan, we get it.

Joe

Thank you Guiseppi, I will try Batch idea as I will try anything natural that helps. I have been using melation (wrong spelling I know!) and that has cut maybe 10 to 15 % of attacks out and does at least give me some rest.

You are right even just typing and talking to other people helps which is strange as I dont like to moan but I am aware I need to sort my attitude out as being down like this is what I hate as it is letting it win twice.

So a big thanks to you all from sunny Scotland!

Jay

Some of the information posted on this thread is misleading.

Batch - I don't know where you got your information from but, I can assure you that the ONSI has given much needed relief to many sufferers here in the UK. And I am talking from first hand knowledge.  Whilst it doesn't work for everyone - it's certainly worth trying if you've exhausted the list of preventives and meet the criteria to qualify for this procedure.


Quote:

At best, the ONS will only buy you partial relief during the day while awake.  It will do nothing for you when sleeping where attacks hit and gain in pain before you awake... at that point the ONS will be useless

It works 24/7 unless, of course, you turn it off with the handset.


Quote:

That makes ONS a very expensive and very painful attempt to control your CH... that will only work while awake and then not all that well...

It is expensive but the costs will be met by the local Health Board.


Quote:

Sorry, I don't know about the operation, I can just say that if it was me I would first seriously explore the potentially powerful non invasive therapies available (for both prevent and abort) that you won't likely hear about if all  of your info is coming from a neuro.

ONSI is a non invasive procedure. Connections to the occipital nerves are made external of the skull - just under the scalp.

Jay - Don't know if you're already a member of OUCH(UK) or if you've visited our web site. Lots of information there about ONSI. Also there is a helpline number at the bottom of this post - if you ring this number you might be speaking to a member who already has had this op.

Finally - You may also be interested in this link for an OUCH(UK) regional meeting at the Southern General Hospital, Glasgow:-

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Thank you for your response and yes I am a member of ouch and have found exactly what you are saying on the UK site.

Also thanks for the info on Glasow and I will try and make sure I go to that as you do feel so alone with this it is good to meet others who know what you are going through particularly as I am finding it so hard to cope at the moment.

Dyno,

One of the benefits of an open forum like CH.com is the exposure to diverging opinions.  We welcome them as essential elements of an informed decision making process many visitors and members here must make in their journey to find an effective method or methods of controlling their cluster headaches. 

First hand comments like yours on the ONSI carry great value if they're objective covering the good, bad, and other aspects of this surgical procedure including the risk – reward ratio.  You may have been fortunate, but greater than 50% of the CH'ers who have had the ONSI surgical procedure have encountered adverse events requiring additional surgery to re-attach electrode leads that migrated away from the occipital nerve or to replace depleted batteries. 

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I've followed three intractable cluster headache sufferers through this procedure maintaining frequent contact with them.  One is a close friend and I've visited with him frequently since his ONSI surgery.  All too often we would meet in the middle of the night at the oxygen cylinder to abort our cluster headaches...  The ONSI did little for him at night.  All have undergone one or more additional surgical procedures on their ONSI following the complete implant procedure; One contracted an infection during the initial electrode implant surgery that required the electrodes to be removed until he recovered from the infection.  They all still have cluster headaches...

When it comes to discussing diverse positions or opinions on a given method of treatment, it's often best to define a common set of terms that can be used to frame the discussions.  I agree with your comment that ONSI is not for everyone.  Providing the metrics like overall and long term efficacy discussed in the link above would be helpful in explaining why it's not for everyone and that it is very invasive. 

While I agree ONSI has promise as a surgical procedure of last resort for some intractable cluster headache sufferers, it still lacks the technology needed to make it a more effective method of intervention. 

For example, ONSI presently lacks the capability to process nerve signals like an Implantable Cardioverter Defibrillator (ICD) (similar to a pacemaker) that is capable of detecting and processing signals in the heart's electrical system indicating a cardiac arrhythmia then generate the appropriate level of defibrillating electrical shock until the arrhythmia subsides. 

Until the ONSI has a similar capability to automatically detect the onset of a cluster headache and deliver the appropriate nerve stimulation without any user intervention, it's use will continue to be a manual only process that requires the user to take the small TV-like remote control unit in hand, point it at the ONSI control unit surgically implanted in the belly fat, and select the desired signaling pattern… 

Obviously this would not be possible while sleeping so it really doesn’t work 7/24.  Moreover, to call this surgical procedure "non-invasive" is clearly misleading…  The Occipital Nerve Stimulator Implant surgical procedure by its very nature is invasive.

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All the wires shown in the photo at the right were later implanted under the skin from the neck diagonally down across the back, around the ribs to the control unit surgically implanted in the belly fat.

An invasive procedure is one which penetrates or breaks the skin or enters a body cavity. Examples of invasive procedures include those that involve perforation, an incision, a catheterization, or other entry into the body.

Surgery is a typical medical invasive procedure. An open surgery means cutting skin and tissues so the surgeon has a direct access to the structures or organs involved. The structures and tissues involved can be seen and touched, and they are directly exposed to the air of the operating room.

Accordingly, Jay needs all the information he can get on this surgical procedure… both good, bad and other.   He also needs information on the non-invasive alternatives and their efficacy in order to make an informed decision. 

If Jay hasn't tried oxygen therapy at flow rates that support hyperventilation/the demand valve method of oxygen therapy, the anti-inflammatory regimen with vitamin D3, or cluster busting…  he has not exhausted all the non-invasive methods of controlling his cluster headaches.

You might want to ask Mike Pollock at OUCH-UK about the demand valve method of oxygen therapy.  He's had the ONSI procedure and still uses oxygen therapy.  Mike tried the demand valve method of oxygen therapy during his travel here to the US while staying in Florida in 2008 and found it effective.

Take care,

V/R, Batch

Batch

What we are trying to do here is give Jay information regarding the ONSI (as he is a member of OUCH(UK) all the information is already available to him on our website - it can also be viewed by non members)

The surgical procedure shown regarding the wiring, bares no resemblance to the method used in the UK.

The electrodes are generally implanted under local anaesthetic -
Quote by Mr Laurence Watkins, Consultant in Neurosurgery, National Hospital for Neurology & Neurosurgery

Quote:

we would tend to put the electrodes in under local anaesthetic and little bit of sedation, in other words the patient is awake when we are doing this bit, making a cut at the back of the head, sticking in the electrodes near the base of the skull – its actually quite close to the surface, so it is not a deep operation, we are not sticking anything into the brain or spine for example.  And then we have the patients awake, because then they can tell us what they are feeling, are they getting the tingling on the back of the head which shows that we are in fact stimulating the nerves that we think we are, so that is a good check, but if for some reason the patient is not suitable for doing that, either because they have problems with their airways and the anaesthetist wants to put them to sleep right from the beginning, we can do it completely under general anaesthetic where the patient is asleep throughout, so there is an alternative to that.

Then the wiring is implanted.  From the electrodes it goes over the shoulder to the front (obviously under the skin) and to the side of the chest/breast and down to the abdomen where a little pocket is made for the battery and the electronics component with a little mini-computer that can be programmed from outside the body. I've got the diagram somewhere on my computer but can't find the bloody thing at the moment ::)

Perhaps I should have said minimally invasive as far as Neuro' surgery goes - compared to general surgery.  Normally neuro' surgery means drilling holes in a persons skull (now that's invasive) but this is considered low risk, and once again I'll quote Mr Watkins:-


Quote:

I am used to doing a lot of brain operations where you are quoting death or stroke rate in five/ten per cent of patients having the operation – very risky surgery.  This, by comparison, I consider very safe surgery – this is low-risk surgery and so it is certainly worth considering in patients who don’t have another option for treating their condition

.


Yes. I do know Mike and do know about the demand valve oxygen therapy, but that's an abortive. Why any sufferer with medically intractable cluster headache, or any of the other TAC's, would not jump at chance of having this op' is beyond me - what have they got to lose? - only the worst pain known to man!

And another quote from L.W.


Quote:

I remember one of my mentors telling me, Harold Ellis, at the hold Westminster Hospital, he said, “Lawrence, there is no such thing as a bold surgeon, only bold patients!” and we have to remember that it is the patients who are going ahead with these things and they are very courageous people, going through treatments which are not yet fully established

. 

Going back to Mike - He's recently started back on Verapamil and, thankfully, has been pain free for quite a while.

Rod

I also had the ONSI. Mine was a 'trial implant' and I only had it for about 1 week. The docs said I was awake for the surgery, but trust me, I don't remember a thing about it. It was not a painful surgery. I did feel like I was getting 'shocked" while I had the stim turned on. I controlled it by remote. The shocking sensation did not penatrate deep enough and it felt like it was a TENS unit on my head. It did NOT help with any attacks. I did not have any side effects or complications. Now I am told that the stim should have been left in longer for any effects to be noticed. (The docs say the ONSI should be left in for months to accurately tell if it will help or not.) I would not be afraid to do it all over again though, as the attacks are still very intense. It was very unconfortable though because I had to wear a soft collar neck brace due to the wires coming out and attaching to the battery. A full implant means the wires and battery is fully implanted under the skin. (I didn't have that).

Thank you for the response and it has been so helpfuly to get different opions.

I am getting very desperate at the moment as I am in a very bad cycle of attacks and havin them during the day as well which does tend to happen at this time of year.

I find it strange that after coping for the last 4 years as a CCH suffer that I feel I have hit a brick wall and finding life very hard to cope with.

I am going to be attending the Ouch meeting in Glasgow in September and I think it will help me to speak to ther people as long as I can get myself out of this dark period at the moment. I souldnt moan as I hate people who do (people in glasshouses comes to mind lol)

But just being able to express your feeling on boards like this can be a lifesaver sometimes maybe it helps to put life back into proportion well at least thats whta I am trying to convince myself.

Thanks for all the help


Dyno wrote on Jul 9^th, 2011 at 5:23am:

Batch What we are trying to do here is give Jay information regarding the ONSI (as he is a member of OUCH(UK) all the information is already available to him on our website - it can also be viewed by non members) The surgical procedure shown regarding the wiring, bares no resemblance to the method used in the UK. The electrodes are generally implanted under local anaesthetic - Quote by Mr Laurence Watkins, Consultant in Neurosurgery, National Hospital for Neurology & Neurosurgery Quote: we would tend to put the electrodes in under local anaesthetic and little bit of sedation, in other words the patient is awake when we are doing this bit, making a cut at the back of the head, sticking in the electrodes near the base of the skull – its actually quite close to the surface, so it is not a deep operation, we are not sticking anything into the brain or spine for example.  And then we have the patients awake, because then they can tell us what they are feeling, are they getting the tingling on the back of the head which shows that we are in fact stimulating the nerves that we think we are, so that is a good check, but if for some reason the patient is not suitable for doing that, either because they have problems with their airways and the anaesthetist wants to put them to sleep right from the beginning, we can do it completely under general anaesthetic where the patient is asleep throughout, so there is an alternative to that.  Then the wiring is implanted.  From the electrodes it goes over the shoulder to the front (obviously under the skin) and to the side of the chest/breast and down to the abdomen where a little pocket is made for the battery and the electronics component with a little mini-computer that can be programmed from outside the body. I've got the diagram somewhere on my computer but can't find the bloody thing at the moment ::) Perhaps I should have said minimally invasive as far as Neuro' surgery goes - compared to general surgery.  Normally neuro' surgery means drilling holes in a persons skull (now that's invasive) but this is considered low risk, and once again I'll quote Mr Watkins:- [quote]I am used to doing a lot of brain operations where you are quoting death or stroke rate in five/ten per cent of patients having the operation – very risky surgery.  This, by comparison, I consider very safe surgery – this is low-risk surgery and so it is certainly worth considering in patients who don’t have another option for treating their condition

.


Yes. I do know Mike and do know about the demand valve oxygen therapy, but that's an abortive. Why any sufferer with medically intractable cluster headache, or any of the other TAC's, would not jump at chance of having this op' is beyond me - what have they got to lose? - only the worst pain known to man!

And another quote from L.W.


Quote:

I remember one of my mentors telling me, Harold Ellis, at the hold Westminster Hospital, he said, “Lawrence, there is no such thing as a bold surgeon, only bold patients!” and we have to remember that it is the patients who are going ahead with these things and they are very courageous people, going through treatments which are not yet fully established

. 

Going back to Mike - He's recently started back on Verapamil and, thankfully, has been pain free for quite a while.

Rod


[/quote]

Hey Jay,

Before you decide on the ONSI, you need go to your primary care physician (PCP) and ask for a blood test of your vitamin D3 levels...  a.k.a. 25(OH)D.  And if your 25(OH)D is below 100 nmol/L, you're vitamin D3 deficient.

Dr. Peter Lewis, MD, an Integrative Physician, suggests all patients should have their vitamin D levels routinely checked at least once or twice a year. As a practical guide to diagnosis and management, he suggests the following (25(OH)D levels in nmol/L):

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

Check your email, I sent two papers by Dr. Peter Lewis will give you what you need to tell your physician what you want tested and why...  I've also sent you a paper on the use of oxygen therapy at flow rates that support hyperventilation.  This method of oxygen therapy is very effective CH abortive with much shorter abort times than the traditional oxygen flow rate of 15 liters/minute.  The average abort time when using this method of oxygen therapy is 7 minutes for CH between Pain Levels 3 and 9.  If you start it early at the first sign of a pending CH, you can easily achieve abort times of 3 to 4 minutes to a pain free condition.  This method of oxygen therapy will work when other methods fail, particularly at the higher pain levels.

This paper also has a section on the anti-inflammatory regimen. I provides all you need to start this regimen after you discuss it with your PCP.

If you are deficient, please consider giving the anti-inflammatory regimen of Omega 3 Fish Oil, vitamin D3 and calcium citrate a try.  Roughly 80% of the CH'ers who have tried this regimen have reported a significant drop in the frequency and severity of their CH or they've gone into remission and are now pain free...  It works for episodic and chronic types equally well.

If you choose not to believe what I'm saying, at least go to the following link and read what other CH'ers are saying about this regimen.  The thread is titled "123 Days PF And I Think I know Why", on the New CH.com Forum, can be found at the following link: 

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There are 12 pages of posts on this regimen...

Moreover, at 20 cents USD/day this regimen provides a very healthy alternative to some very invasive options for treating CH... That's a real deal.

As far as a surgeon actively promoting a particular surgical procedure goes...  I'd say off hand, it's unethical...  Remember the surgeon's motto...  "A chance to cut is a chance to cure... "  and surgeons are in the business of cutting...

Take care,

V/R, Batch