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10 Feb, 2011 - 9:37 am

Hi All,
Well today i am going to get educated on the Nerve Stimulator Implant ready for a trial one to be done next week, still getting headaches on a daily basis and that's with Lyrica 300mg X 2 Daily. hopefully i will have some more information to tell after today and when the trial one i implanted.

Matt
Silent Planet

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10 Feb, 2011 - 2:19 pm

Matt,
They want to do this to me too, so I would be interested to hear how it goes and what radio stations you can pick up etc...(just kidding) Good luck with it.

Cheers, Ben.

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12 Feb, 2011 - 12:11 am

Good luck Matt!

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15 Feb, 2011 - 3:24 pm

Had the trial stimulator implanted today, will have to see how it goes over the next 4 days as that how long it will be in for. If all goes well they will book me in for a permenent one in a month or so. fingers crossed that this helps and some more of us CH sufferers can try it out to see if it works for them.......

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18 Feb, 2011 - 11:37 am

Well the trial is now over and i was headache free for the trial period, they have now removed it and have booked me in to have a permenent one implanted. i have to wait about a month for the wounds to heal up then they will go and open up the wound again and do the implant. At the moment i am free of pain not sure how long that will last now the trial is over.

I would recommend that anyone who has been suffering for a long time and has run out of treatment options the you talk to your Dr about the implants and if they can't help get a referal to a Pain Management Clinic in you local hospital. for those who live in the Sydney area and don't mind travelling go to Royal North Shore Hospital Pain Management Clinic, at the moment i am the only patient that they have with Ch and the more that they can get maybe more research can be done.

I would like to know if anyone else has been offered this treatment and been a bit hesitant in trying it out. As i said this was my last option so i was willing to try anything and at the moment this seems to have worked.

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18 Feb, 2011 - 11:45 am

Matt--keep us informed! All sounds promising for you. You don't look like a bunny!
Thoughts are with you; can only imagine what you are thinking and hoping for.
Heather

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20 Feb, 2011 - 11:45 am

Now the implant is out it has only taken 1.5 days for the pain to return, i hope this next month goes quick so the permenent implant can be done.....

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03 Mar, 2011 - 2:27 pm

I now have a date confirmed for the implant to go ahead, 22nd March only 19 more days of pain and then we see what happens when the real one is implanted.

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03 Mar, 2011 - 4:14 pm

Keep us informed!
Good luck
Heather

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14 Mar, 2011 - 11:17 am

good to see somone else having a crack at somthing new, I had a nerve root block done more than a year and a half ago and still no return of the CH, life's sweet, no drugs and no pain, might not work for everyone, but hey you don't know till you try

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19 Mar, 2011 - 10:39 am

wow, this is what my specialist is trying next on me aswell. It's good to see that someone else is trialling it and it has helped them!
I hope all your meds can be cut down permanently and you are pain free!
My specialist has showed me the external device but is talking to me about it in 2months time at my next appointment.

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30 Mar, 2011 - 2:37 pm

Hi All,

Well iv'e had the implant done and all is good so far, i just had all the stiches and stapples removed. I have only had to use the stimulator once since leaving hospital and it did what it was meant to and relieved the pain. All the wounds are still sore mailny the one on the forehead as there isn't much tissue there. I am now off work till the 18th April just so the wounds can heal without any complications or infections.

I will keep you all updated as to the progress and any furhter reports that i have. If anyone has any questions please feel free to ask and i will try to give the best answers that i can.

Silent Planet
Matt

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31 Mar, 2011 - 12:00 am

Oh Matt, I hold so much hope for you.
Knowing that you have had to use it once and that it has worked is wonderful news in a way.
It would be better of course not to have to use it, but I know you know what I mean.
I cant believe that I am now going into my 6th month headache free!
Thanks for keeping us posted, really appreciate this.
Cheers and continued best wishes
Heather

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03 Apr, 2011 - 7:34 pm

that sounds like a great outcome! so happy that it has subsided your pains. I hope it continues.
Gives the rest of us hope. I have to go back to my pain management in early May and this is when my specialist is going to discuss the stimulator more indepth.
Where do they make the incisions if you dont mind me asking?
Did you have to have your head shaved for this procedure?
Small price to pay for pain relief (shaving head if they do.) but people have been asking me if this is what they will do to me and I really dont know.
Does yours sit in your stomach or shoulder?

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08 Apr, 2011 - 12:48 pm

They have made 8 incisions from my head to my butt, they do give you a buzz cut if you want or they can shave around the area where they will cut. The battery sits in my buttox cheek, they either put it there or in women who have a bit of fat under or near their arm pit they can insert it there. There are 2 wires one in my forehead near the trigeminal nerve and the other at the back of neck near the oxcipital nerve, they then run downs near the spine and then across to the top of the butt where the battery is.

You need to be suffering at the time of the trial implant to see if it works for you before they will go ahead with the full implant. I would recommend that anyone who is suffering at the moment speak to their specialist about the implant, but REMEMBER this is not for everyone and that it is all trial and error. I am the first person that i know of who has had the implant done specifically for CH, it had been used for migraine before and is mainly used for people with cronic nerve and lower back pain.

Whatever people decide to do, never go and get the nerve severed as some specialists have suggested. youcould end up worse than what you were before and the nerve can always grow back. This is only what i have been told and might not be the case for some people.

i will keep everyone updated as to how everything is going. Keep safe and keep well there is always a light at the end of the tunnel.

Matt
Silent Planet

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09 Apr, 2011 - 8:28 am

Hi Matt
Thanks for the info; still going OK Matt?
Cheers
H

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20 Apr, 2011 - 2:40 pm

Hi everybody,

As we all know the stimulater was working well and doing the job that it was meant to do. Unfortunately some of the wounds became infected so i have been in hospital for the last 8 days on 3 different antibiotics to get rid of the infection. This also meant that they had to remove the implant at the same time. I now have to wait another 2 months before they will concider putting a new one in, so in the mean time I will have to put up with the headaches.

They say as I have had an infection there is still a risk of getting another infection next time they do the implant, this is something that I will have to deal with when the time comes around.

It was very dissappointing to find out that the whole implant had to be removed as it was doing what it was meant to do and help the CH's.

I look forward to reading any feedback that anybody has.

Have a Happy Easter and a safe one if you are travelling anywhere over the break.

Matt
Silent Planet

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20 Apr, 2011 - 3:26 pm

Hi Matt
Bad news my friend.
Thoughts are with you.
We are staying put this Easter. Our little township is very busy at Easter as a destination for many holiday makers hoping to get a bit of fishing done.
I remain headache free and enjoying life and like yourself wish the same for others.
Heather

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08 May, 2011 - 10:12 pm

Here is a web site that may have some information for us all. I have not looked at it as yet but will do in the next few days.

www.poweroveryour pain.com

I hope that there is some information that may help someone out there.

Matt
Silent Planet

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08 May, 2011 - 10:13 pm

Sorry this is it

www.poweroveryourpain.com

Matt

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09 May, 2011 - 10:14 am

Thanks Matt,
Very useful link going into a possible implant operation myself.
Cheers, Ben.

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28 May, 2011 - 1:38 pm

Hi All,

Well the countdown is on till the next implant is done on the 7th June, still getting CH's on a daily basis. My wife has been sick all week so iv'e told her that she needs to stay away as i don't need to get sick before the Opperation as they wont do it if i'm sick.

Matt
Silent Planet

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28 May, 2011 - 2:30 pm

Hi Matt
If your wife has been sick all week, pushing her away now is probably a bit late! Let's hope you haven't already caught her "dreaded lurgy"! I do know what you mean though, My husband catches colds at the drop of a hat which turn into really bad chest infections so he is very wary of people with the sniffles.
Have my fingers well and truly crossed for you Matt, I know how you have been hanging out for this--the second time around. The 7th must feel like weeks' away.
Keep healthy, will be thinking of you.
Heather

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06 Jun, 2011 - 4:31 pm

Hi All,

Well tomorrow Being Tuesday the 7th June is the big day for the implant to be done for the 2nd time around. With any luck there will be no complications this time. They will be keeping me in for a couple of extra days this time to pump me full of Anti-Biotics to try and prevent any infection.

Speak to you all on the other side when i get home.

May we all be CH free sometime in the near future.

Matt
Silent Planet

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06 Jun, 2011 - 4:50 pm

Good luck Matt, thinking of you tomorrow.
Hope it all goes well this time.

Cheers, Ben.

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07 Jun, 2011 - 10:32 am

Matt, hope to hear from you asap.
Thoughts are with you.
Heather

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11 Jun, 2011 - 1:52 pm

Hi All,

The implant has been done, all is going well at the moment feeling rather sore from all the wounds that have been made. All the stiches and staples come out next Tuesday and then another 3 weeks to recover before going back to work.

I hope everyone has been CH free for a little while, it's nice to be pain free when you can get it.

Matt
Silent Planet

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11 Jun, 2011 - 6:24 pm

Hi Matt
Have been watching out for you!
Looks like progressing OK; keep it up.
Heather

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12 Jun, 2011 - 4:36 pm

Matt,
Good luck with the recovery, be careful with that new device. It is a strange thing to have to be contemplating - my discussions with Neurosurgery dept. on my own implant begin in August. I hope it goes well for you. Better than last time anyway!
I watch with interest, thanks for keeping us posted.

Cheers, Ben.

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14 Jun, 2011 - 3:52 pm

Hi All,

Had all the stiches removed today and all seems to be healing well and the stimulater is doing as it is meant to be. I remember saying this the last time i had this done, fingeres crossed all will stay this way and can return to work in about 3 weeks.

Matt
Silent Planet

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14 Jun, 2011 - 5:00 pm

Good to hear Matt,
Take it easy in the next few weeks mate!
I am selfishly observing your entire account of this implant, facing one through the public hospital system I think will be very different to your experience. Although I hope not too much different. I look forward to discussing mine with RAH Neurosurgery dept. in August.

I am hardly in a position to speculate what it must feel like, but after reading as much as I can on these implants, I am holding my breath for you Matt. Like I am trying to avoid any postural changes that might make wires shift or causes infection. I hope you can endure the temporary discomforts in order to achieve the long-term benefits. It sounds like it must be better than CH already by comparison.

Straight in- straight ON for me, no trial stimulator apparently for me, but I have not had detailed discussions with specialists yet. I hope it works, I still want to be able to play guitar after the op. It's all I have left post-CH.

Good luck with the recovery Matt, thinking of you.

Cheers, Ben.

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14 Jun, 2011 - 11:45 pm

I'd have my fingers crossed cross for you Matt, but my arthritis wont let me!!
Ben--I am hoping that it is going to be the right pathway for you too,
Cheers
Heather

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15 Jun, 2011 - 11:30 am

Hi All,

Ben,
Like you i have gone through the public system but i went in as a private patient only so the hospital can get more money through the private health system. The only discomfort i have had is really the wound pain, once the wires are in there isn't really any other discomfort. I am allowed back to work after 3 weeks as long as there is no heavy lifting involved or any outdoor work. I did lawns and gardening for a living now i have just sold my business and about to look for a new job with less stress involved and having the stimulater in all i have to do is remember to take my control box with me so i can turn it on. Once everything has settled down after 3 months i can lead a normal and productive life, i also play bass guitar and have been able to get straight back into practice as long as i dont put the strap over my neck for the time being.

When they did the implant the battery was put into the area around the top of my butt and the wires are run up near the spine into the back of my nect to the Ocsipital Nerve and then around the side of my head past my ear to the trigeminal nerve in the Forehead. You can feel the wire in the forhead and if you look hard enough you can see it. I can feel it when i turn my head at the moment until it sets in place, if i move my eyebrow around it changes wher the sensation is felt in the head. Quite a strange feeling until you get used to it.

I hope all goes well with you and this little bit of info enlightens you a bit more. As far as i know this has not been done in Australia yet for our condition but there have been people in the US that have had it done with good success rates. You might be able to find out some more info on the web.

I luv being a Guinee Pig for this sort of stuff.

Heather,

Sorry to hear about the Arthritis, hope you can get some relief for that, thank you for your kind words over these past few months. Where wuld this site be if it wans't for you kind words to all the new people who are being diagnosed with this terrible affliction that we all suffer with. I hope that you stay pain free for as long as possible.

Matt
Silent Planet

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15 Jun, 2011 - 12:00 pm

Matt-- thank you for your thoughtful words; it just takes a little longer to get my fingers mobile in the morning than I would like.
Heather

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16 Jun, 2011 - 12:14 pm

Matt,
Good news all went well. I remember you mentioning landscaping? or outdoor work before. That had me whincing once I read the post-op instructions on the implant. No more heavy work for me either, I had to join the RAA in case I need a tyre changed. A big step for someone who has never needed to call a motor mechanic in my life.
Its one of the sacrifices that comes with this level of treatment I suppose... I hope it works.

Good to hear you can get the Bass out. When I am well I work on Guitar pickup development and am about to complete building my first guitar, hence the jokes/questions about picking up radio stations in ya head! As a lifetime technician/musician and CH patient, this implant and potential outcomes from its install really are a cause of concern for me. Hopefully it will enable me to play more music and build more guitars, because CH can't get much worse right now.

Whether it matters or not, I don't know. There is one young guy in line in front of me for an implant operation for CH. He is worse than me and needs it sooner, so I will have to wait.
I have researched the use of the unit in Australia in CH, can't find much on it here. I just find the same US clinical trial results collated in various differing ways. I have been talking tentatively with specialists about this unit for about 4 years now, all no-obligation of course. This cautious approach of researching, discussing and waiting has meant that I have narrowly avoided other irreversible destructive surgical procedures being used to treat CH. This has led me to the implant as a reversible option.

The best news I have heard is about centralising knowledge on CH treatments like the implant. So far, most Neurosurgery clinics around the world have had a very limited opportunity to perform implant surgery and attain a complex level of clinical understanding of the unit and how it is best applied in CH management. Say, for example - this op has been done 20 times for CH worldwide, then the knowledge gained by the surgeons was spread across the 15 or more clinics worldwide who "Had their go at it".
From what talk I am hearing, there is now a trend towards centralising these procedures and the knowledge gained from them. Better for all concerned. I for one, think it would be better for a patient to travel Australia-wide for treatment in a specialist clinic dealing with implants exclusively, rather than the patchwork arrangement currently in place where every 2nd Neuro knows "a bit" about implants - not everything, like they should before they install one.

I have been referred to a "Cautious and informed" younger Neurosurgeon who apparently has some clinical experience with implant operations. I may be the first to have one installed by this particular Doctor for CH, but it's nice to know he is familiar with the unit, the op and all the implant's other medical applications before they commence surgery. Much, much more promising than the talk 4 years ago - near retired Neurologists sort of standing around in corridors sratching their heads asking where the batteries go in...
So, things are coming along, keep your fingers crossed people!

Remember! The Guinea Pig can't say "NO".
We still can!

Keep us posted Matt, thanks for your time in doing so this far.
Much appreciated.

Cheers, Ben.This post was edited on 16/06/2011 at 12:15 pm

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21 Jun, 2011 - 4:00 pm

Hi All,
Just an update on how things are going, went to the Dr's yesterday to get all the wounds checked out. All is going well 2 weeks after the surgery. there is one wound that is giving a little trouble only when i strech my arme up, so the Doc put me on some Antibiotics just to be on the safe side. Other than that all is going well the CH's have subsided down to a very dull roar in my head, they sometimes flare up thats when the stimulater gets used and it is doing it's job. So far i haven't found that it is restricting my daily activities when i have it on. It's just like a little tingle in the head.

I will keep everyone posted on how things are going.

Be Pain Free Everryone..

Matt
Silent Planet

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21 Jun, 2011 - 5:48 pm

Good news!
Keep it up.
Heather

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01 Jul, 2011 - 4:07 pm

Hi All,

Well another week down and all is going fine, no signs of any infections and everything else is healing up nicely. My cluster seems to on it's way out at the moment which is good news. They seem to be getting further apart, which is good and bad as the implant hasn't been in that long to be able to give it a real good go. Off to see GP next week to get the all clear to resume work which will be hard as i sold my business the other week and now need to go and find a real job and work for someone else (SCARY THOUGHT).

I hope everyone else is getting some relief from their pain.

Matt
Silent Planet

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01 Jul, 2011 - 8:15 pm

Hi Matt
Still looking good.
Cant help but sing those magic words "always look on the bright side of life" but from Monty Python--forgive me!
You'll be right mate.
Heather

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01 Jul, 2011 - 9:41 pm

I recently had a friend tell me that she had the stimulator trial & it went well for her. She is having the permanant one put in in July. The FDA here in the US unfortunately has not approved it as a "proven" treatment for CH...YET! As far as I know, very few pain management doctors are using it to treat CH. I am planning on discussing it with my pain management Dr on my next visit to see if it may be an option for me.
I hope all is going well with your implant, Matt.

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03 Jul, 2011 - 4:44 pm

G'day Cleo,
tell us about Mexico Beach- if only to take your mind off reality. Very sorry to see you're suffering.
Hmm, so if it's not approved by the FDA then surely any medical insurance companies would cry foul and not cover the procedure? That's not something i'd be comfortable undertaking in the U.S. of A .
Regardless, good luck to your friend, and you.
cheers peter.

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07 Jul, 2011 - 3:36 pm

Cleo,
I think that you will find that theren have been some studies done in the US about the stimulator being used for CH, you just have to hunt around for them on the net. At the moment all is going to plan and i should get the all clear from my Specialist next week. I hope that all goes well for you and that your specialist should consider the implant as an alternative for the treatment of CH instead of some of the more radical treatments used these days.

Matt
Silent Planet

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12 Jul, 2011 - 1:09 pm

Hi All,

Had a nasty scare on Sunday night, we thought that the implant was infected again. Was taken to hospital again for tests, all came back clear for any infection. Looks like i twisted the wrong way and pulled on one of the leads which has caused it to bleed and the whole area around the lead has swollen up and travelled along the wire for about 4 inches. Have to now go in for daily check of the lead to make sure it is all ok and that nothing has moved out of place.

I was not looking forward to having the implant removed again and then have to go through the whole process again.

I will keep you all updated on what is happening over the next week.

Hoping we will be all pain free one day.

Matt
Silent Planet

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12 Jul, 2011 - 5:02 pm

Good luck with it Matt.
Thinking of you, I hope things go OK for you.

Cheers, Ben.

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13 Jul, 2011 - 3:33 am

Geez Matt, You are a guinea pig. They're using you to work out the best way to attach one of these things to a human! It just goes to prove the lengths we'll go to avoid CH. Good luck to you, Matt, I hope they get it right before they turn you into swiss cheese.
cheers peter

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21 Jul, 2011 - 5:06 pm

Hi All,

Looks like the infection might be back or the body is rejecting the implant. Had bloods done yesterday and the CRP levels which should be around 0.5 - 1.0 are up around 60., the good news is that there are no fevers or feeling sick just pain and swelling around the wounds and wires. The (IPG) Battery which is in the hip is starting to get quite sore. Nothing has travelled around to the front of the head along the wire.

Have been told to get my butt into the Pain Clinic first thing in the morrning, this is the last thing that i needed to happen before i travel to Melbourne on Saturday with the family for a small holiday. If it is rejection i hope that they can give me some imune suppresants so the body stops fighting the implant. If its infection might have to have it taken out again and then i don't know what i will do.

Not only is it hard on me buts it's been very hard on the family over the past 10 years and this has been going on for the last 5 months and i'm starting to get the shits with it as this was my only and last option.......

Matt
Silent Planet

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21 Jul, 2011 - 11:24 pm

Oh Matt--my heart goes out to you--there really is very little I can say.
Keep us posted.
You would think/hope that there is some massive antibiotic treatment that could help you.
Heather

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28 Jul, 2011 - 2:46 pm

Hi All,

It's official there is infection in the implant for the second time, have been on antibiotics for over a week now. Not sure if they are doing anything all i know is that there is a lot of crap coming out of the wounds, as the Dr said better out that in. going to see specialist tomorrow to see what he wants to do, if we keep it in and see if the infection dies down or if he takes it out and tries again later down the track.......

Not happy at the moment.

Matt
Silent Planet

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29 Jul, 2011 - 10:42 am

Hi All,

Saw the specialist today and they are going to admit me back into hospital for IV antibiotic treatment for the next week to see if we can save the implant. Will keep all posted.

Matt

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29 Jul, 2011 - 10:52 am

Hi Matt
I am so sorry; yep the old saying better out than in does relate to what is coming out of your wounds.
Tell me to butt out--but--I am assuming that they have down swabs etc to ensure that you are on the right antibiotic etc. Have you thought to ask to get in a infection specialist? I ask this because a friend of mine is just that--has been working in the fields for years in SA and I know he has very strong views on handling infections. Just a thought. The picture you paint is certainly not a rosey one; the thought of having the implant removed must be gut wrenching for you.
Thoughts are with you Matt.
Heather

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05 Aug, 2011 - 3:52 pm

Hi All,
Well i was in hospital for the past week on some pretty heavy antibiotics and have been released to continue treatment at home. They have inserted a PICC line into my arm which runs near the heart and i am on AB's for the next 3 weeks where a nurse will come around every day to change the infusion bottle with the meds in it.

As the Infectious Disease people said this may not work after the 3 weeks but there is no harm in giving it a go. So in the end if this doesn't work then i still might have to have the implant removed. Alot of the swelling seems to have gone down and there isn't as much stuff coming from the wound, i just have to hope that it all stops over the next 3 weeks. I still have to go to hospital every week for review and bloods will be taken the day before to chack all the levels and that there is no damage being done to my Kiddneys.

Fingers crossed we start to see some good results over the next few weeks.

Matt
Silent Planet

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06 Aug, 2011 - 8:32 am

Matt,
Sounds like hell you are going through there. I guess the hope of a CH free life would be keeping you going at the moment. AB and wound drains, it all sounds pretty scary.
I hope you are OK.

I am going in to discuss my implant in 3 weeks.
Matt your experiences with implants concern me greatly. I am a nervous person by nature and I am unsure whether my mental or physical health could survive what you are and have been going through. I am not bulletproof like some people and it worries me. Just the last 2 courses of Cortisone and their side-effects have nearly put me out of commission for good.

I have been CH free for 4 days and now I want to run the other way from Neurosurgery as fast as possible, I don't want surgery. But at the same time I know when the next CH bout hits, I will be begging on bended knee for a shot at an implant. I assume I can refuse to have one, but this might put future treatment options into jeopardy if Doctors think I am an uncooperative or non-compliant patient. What to do?
A dilemma I suppose many CH patients have faced, I am sure I am not alone here.

I hope this goes well for you Matt. I know what being hooked up to medical lines/machines for a long time is like. The restrictive and sedentary lifestyle you must lead whilst recovering can be mindnumbing and scary. I ran a lot of this sort of medical gear for my Mum when she had Cancer, not much of a life, but CH is different. I hope this does work for you.

I will basically be recounting your case to Neurosurgeons when I go in for discussions, it is the only relevant experience I have to draw from. Your case may be the only relevant experience THEY have to draw from when they attempt this implant op!
I know you did this solely for your CH condition, but thanks anyway for coincidentally being a trailblazer for us all Matt.
CH patients need to hear from more people in situations like yours, it is of great benefit to us all.

Good luck with it, keep us posted.

Cheers, Ben.

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06 Aug, 2011 - 11:33 am

Ben,
I know what i have been through sounds a bit scary but in the end if it works it ahs all been worth it. With the infection they say that there is a very small chance of getting one, because i was a smoker it didnt help as that increases the chances of getting an infection 1 in 5 are the odds. I guess i was the 1 in 5 that got the infection. Please don't be put off by what has happened to me over the last 6 months. if being hooked up to antibiotics for the next 3 weeks or 3 months will get rid of the infection and i can save the implant then it is all worth it. There are a lot of restrictions that come with being hooked up, but that is something that i will have to deal with, it is harder on the family at the moment as my wife is the only one earning an income and it gets a bit hard living off the one wage, there are also the restrictions that come with the kids as i am not allowed to drive a car or do anything physical due to the line that is running from my arm into my chest. So i feel for my family because of what they are going through.

Please if anyone has any questions about the implants please feel free to ask me and i will endevor to try and answer all questions.

One hopes and prays that we will all be CH free in the future.

Matt
Silent Planet

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09 Aug, 2011 - 7:49 pm

Hi All,

Had good news today, looks like the infection might be going. All my CRP levels in the bloods are coming down. i am able to start driving and it looks like i might be able to start changing my own infusion bottles every day instead of having a nurse come around and spend time with me, there are more needy patients out there who are not able to do things for themselves. My wife and i have done enough needles and looked after wounds to be able to do it ourselves. Still need a nurse once a week to take bloods so the levels can be checked and still need to go to hospital once a week for a review other than that can do the rest myself.

Dr said that i can start driving again so im not stuck inside all the time. If the wounds haven't closed up and stopped ouzing in the next 2 weeks after 4 weeks of antibiotics then they will still have to remove the implant and then try again. Fingers crossed all the infection goes and i dont have to go through all this again.

Matt
Sinent Planet

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10 Aug, 2011 - 12:31 am

Excellent news! Hang in there Matt, lets hope those antibiotics are strong ones.

Cheers, Ben.

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11 Aug, 2011 - 3:31 am

Good luck to you, Matt.
Cheers peter.

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12 Aug, 2011 - 4:49 pm

Hi All,

Thank you for all your support with everything that i am going through. I think the infection might have travelled down the lead and gone into my hip where the battery is. All i know is at the moment there is a fair bit of pain in the hip and that is what happened last time with the infection. With any luck it will settle down over the weekend and i won't need to be admitted to hospital.

Unfortunately i think that i will have to have it removed again as i don't see the infection clearing up over the next 1.5 weeks. There is still some swelling around the wound and there is still an open wound which is still leaking.

At the moment i don't think that i could go through it for a third time with the thought of, will the infection come back again.

Enough of my ranting, I hope that some of you out there are becoming pain free, no matter how long it be for.

Matt
Silent Planet

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13 Aug, 2011 - 5:34 pm

Jees Matt,
Sorry to hear that it is not going well. I hope the Docs look after you whether the implant takes or not. It must be real rough. Get well soon.
I thank you for posting your experiences, it helps a lot.
My best to you and family.

Cheers, Ben.This post was edited on 13/08/2011 at 5:34 pm

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15 Aug, 2011 - 3:46 pm

Hi All,

Off to thespecialist tomorrow for another revue, not too confident at the moment. The pain is increasing in the hip area where the IPG (Battery) is and the small scar where the front lead goes in has a small soft swelling like to one that was on the neck. If there is no improvement in the bloods i can see them wanting to take the implant out, as much as iv"e tried to do everything to try and keep it in and i dont think that they will keep it in.

I will let you all know the outcome of tomorrow's visit to the hospital.

Matt
Silent Planet

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17 Aug, 2011 - 2:56 am

No news is good news, i hope?
Best of luck to you Matt.
Cheers peter.

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17 Aug, 2011 - 10:01 am

Hi all,

Thank you for all your kind words over the past 6 months, it was confirmed yesterday that the infection is spreading throughout the implant and it will have to be removed next Tuesday. My blood works have come down to almost normal again but you can see the infection tracking along the leads, they wanted to do it this week but my eldest daughter has her last game of soccer for the season on this Saturday and i wasn't going to miss it. So Dr said he would do me a deal, he will wait till next Tuesday for the removal BUT if where there is a new bit of swelling explodes over the next few days like the main area did then i am to go straight to Emergency and prepare for Emergency surgery to have it taken out as the lead will be exposed and that would just cause more complications.

I am not sure if i can go through this for a third time and yet im not sure i want to go back to the alternative of the daily visits to the Dr and all the other meds that i need to take to get relief. Unfortunately there are no meds that break the pain only the narcotics that give me a few hours relief until the cycle eventually stops on it's own. So far this cycle has been going on since last November and they only seem to be getting longer and the pain is getting more severe. the longest cycle lasted for 18 months so it was great when the implant was suggested and we seemed to be getting good results with it.

Sorry for my ranting just needed to vent a little.

Matt
Silent Planet

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17 Aug, 2011 - 10:18 am

Matt,

Vent away, my thoughts are with you Matt.
I am going in on Monday to begin discussions with Neurosurgery on my implant.
I will certainly be looking very hard at it under the microscope before I commit to anything, especially in light of your experiences.
I am physically out of tolerance for any more medical mishaps after 3 or 4 near death experiences in as many years. I know I could not go through what you have, despite having bouts similar to yours. I may not be able to face this op.
There will be much debate on Monday. Thanks to your accounts here Matt, I am going into this with my eyes partly opened anyway...
I will try to be objective about it, I know there are successful implants out there.

I am so disappointed that it did not stick for you Matt.
I wouldn't know where to go from here, I am in the same boat.
Selfishly, I am also disappointed for my own situation, your story does not fill me with hope and confidence for the same op in Adelaide...
So what else can I say? Other than, enjoy that soccer game mate.

Cheers, Ben.

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18 Aug, 2011 - 9:31 am

Ben,

Please dont give up on the idea of the implant, i happen to be one of the unfortunate one's that appears to get infections easily. I think that you might get some great benifit from the implant. I will try it again after the infection has cleared, I think the more people that give this a try the more information we can gather for everyone else that suffers. The hope is that once thie implant has been in long enough and the sepcialist can gather nore information on how the implant is working then maybe i can come off all the meds and just use the implant to control the CH's. At the moment my infection seem to be travelling down to where the battery is and the pain around the hip area seems to be getting worse. The Ch's seen to be under control at the moment, i am still getting them but they are not as frequent and as intense as they have been, they seem to rate about 2/10 on the pain level. Once the implant has been removed i fear that they will start getting worse again and i will be back into the same old routine again, not looking forward to that again.

I would be interested in hearing what your Neuro has to say about it. As i said please dont be put off about the idea i seem to have been the unlucky one. Good luck with your appoint on Monday.

Matt
Silent Planet

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18 Aug, 2011 - 5:32 pm

Thanks Matt,
Very anxious wait for me until then. I am a nervous person these days, so I will be doing my best to quell any anxiety until then. Thanks for your words of encouragement, much appreciated under the circumstances Matt.

Cheers, Ben.

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20 Aug, 2011 - 11:55 am

Hello Matt and all
Back from holidays and trying to read backwards through the link.
Still having a rough trot by all accounts.
You have been in my thoughts.
Heather

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14 Nov, 2011 - 8:06 pm

Anyone think it would be worth a try?
Like the TENS machines?

http://www.siliconchip.com.au/cms/A_112304/article.html

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15 Nov, 2011 - 5:58 am

Really, Ben. Why not? So long as you're careful and don't fry your brain, for sure give it a go.
As far as i'm concerned, until there is a definitive cause for CH (can there be only one?), and therefore a known point to attack, just about anything goes in trying to combat symptoms- short of putting a bullet through the offending eye, which I would of done a few years back, if i'd had a gun handy.
Hopefully by experimenting with such things a breakthrough will be achieved, and won't the drug companies spit chips

cheers peter

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15 Nov, 2011 - 6:45 am

Peter,
Well, I can knock one up pretty easy, I used to build satellite electronics back when I could see! I still have my electronics assembly equipment in storage.
I shall find my magnification and get to work at the test bench then.
I smell solder in my future...
If I report any CH successes, I will let the site know.
Somehow I doubt it, but from my research, the nerve stimulator implant has little more merit medically or technically than this unit does and that worked.
And I am still lined up for one...
(Folks, don't try this at home. I am a qualified and licensed technician driven slightly mad by CH!).
If anyone is SO curious as to want one built, let me at least prototype and MTR (Manufacturing Trial Run) one first before the requests to build them start coming in!
I read somewhere that Roger was an electronics buff, any thoughts Roger?

Cheers, Ben.

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15 Nov, 2011 - 7:09 am

As I said, Ben, the neuros are taking stabs in the dark because they don't REALLY know what's causing the problem. This is also why i'm in awe of Matt, allowing the medicos to push the frontiers by using his head. At some stage it better work Matt, so I can buy you a beer or J.D. But I also know you're doing it because that's how much your family means to you. Respect.

cheers peter.

p.s. I LOVE the smell of solder, reminds me of my dad.

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20 Dec, 2011 - 9:05 pm

I had a 'bi-lateral occipital nerve stimulator' in March of 2004 in Michigan, USA (MHNI.com) and it did nothing, but it was a 'trial' implant and I only had it for 7 days.

They want me to try a double stimulator now, another occipital nerve stimulstor (ONS) plus a trigemal nerve stimulstor (TNS) at the same time. (At least a month or more away from now)

I only had 1 very small scar at the base of my skull from ONS.

Good Luck All !

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