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The pain barrier with Symantha Perkins

Sunday, April 8, 2007
Symantha Perkins
Interviewer: Welcome to the 60 Minutes chat room. ninemsn in association with 60 Minutes present a Live Interview with Symantha Perkins.

Interviewer: Symantha, thank you for joining us tonight to talk about this life-altering procedure.

Symantha Perkins: Thanks for everyone who has responded to this story tonight. It is great to have support and I hope it will help people who are in a similar position. It's great to be online to have a chat to people.

Interviewer: We will go directly to the questions from the people who have joined us tonight.

Ellen asks: What type of illnesses are the implants suitable for?

Symantha Perkins: My IPG was done for an occipital nerve implant which is suitable only at this stage for true migraine headaches. The units are also used as spinal stimulators, for things as varied as mastectomy pain, tradesmen who have had accidents and broken their backs, or who have compressed disks, people who have had car accidents and loss of limbs or people who have chronic pain issues. At this stage it is used for chronic pain. Acute pain is usually fixed by surgery. But the stimulators have had very good results for chronic pain.

I do have to caution that the stimulators don't work for everyone who has migraines. For the 10 or so people who have had the IPG planted for migraines, it hasn't been successful for about 30 percent. You can still feel the pain, but it makes the pain manageable. It is more a two or four out of 10, rather than an eight out of 10.

alan asks: Hello Sam, I was just wondering what type of migraine you were diagnosed with?

Symantha Perkins: I have a variety of migraines. I was diagnosed at about five years old. I have had them for over 30 years. The worst triggers are hormones, pregnancy made them much worse. I also have a lot of food triggers — chocolate, alcohol, strong cheese, citrus, no fruit except pear, stress, excess glare, sometimes driving, going to the movies — these are all major triggers for my migraines. I have one sided and two sided migranous headaches. These also start with nausea, vomiting and an aura — so I have blurred vision and sometimes imbalance so that I am immobilised and I can't walk.

Nat asks: With the implant, does the pacemaker part in your belly sit outside your body?

Symantha Perkins: No, it does not. It's the same technology as a pacemaker. It is a unit similar to a mobile phone — it talks to an external unit that you carry to turn the machine on and off. The battery sits surgically across from your belly button, or you can have it implanted into the front of your shoulder, or in your back, just above your buttock. The wire travels from that rechargeable battery/computer unit, up your spine to the electrodes located in your neck. Then you carry around with you an external unit — like a mini computer that turns the machine on and off by talking to the battery … similar to Bluetooth or wireless technology. You can also turn the unit off with a magnet, so you don't have to carry the wand with you all the time, you can carry a tiny magnet to turn it off. It isn't what I would consider an easy operation. There is a lot of foreign material inside your body once you have had the operation. But if you suffer from true migraines, it is much better than the pain. I have no regrets, but you have to learn to live with a mechanical device, a rechargeable battery and a lot of wiring that is located internally inside you. And I can feel the electrodes and the battery through my skin. The risk of infection is the same as if you have pacemaker or a spinal stimulator — you have to be concerned about it anytime you put something inside your body. You have to watch for signs of infection quite vigilantly.

liz asks: Is the device controlled manually upon feeling the onset?

Symantha Perkins: When I first had the operation I had the device on 24 seven because my migraines were so severe. In the six months I have been using the device, I have been turning it down which is good that you do it because you have to have the battery replaced.

The less amount of time you use the device, the less surgery you will need in the long term to replace the battery.

However, as migraine is a condition where you tend to have flare up in pain — you might go for a week and get a cluster of headaches over a 3 week period — I tend to find for me that the device works better if I have it on before the headache strikes.
If I turn the device on manually at the onset of a migraine, it isn't always as effective. I may need to take Imigran or Naramig as well as using the implant.

Morf asks: How long did the operation take?

Symantha Perkins: Before you have the permanent implant, you must have a trial first. That took about two hours and they only put the electrodes into my neck under local anaesthetic, and left the rest of the unit — the wiring, the battery and the computer was left external.

After three days, I knew it was going to work for me. Professor Cousins agreed, so we removed the trial unit. You have to wait six weeks for your neck to heal, then you have to do it all over again under general anaesthetic. For me, everyone is different, but from leaving the ward, to coming back after surgery was about six hours.

I was then in hospital for about five days. I wasn't prepared for how difficult the operation would be personally for me, in terms of recovery. But in hindsight, it was a small price to pay for six months now of very manageable pain.

Mark asks: Hi I get migraine that have me bed ridden for up to four days at a time. Noted in the interview they spoke about the optic problems that some people get, is this a requirement for this treatment?

Symantha Perkins: As far as I know, you don't have to have optic disturbance. You have to be diagnosed with migraine that responds to usually sumatriptans like naramig or imigran. Again, however there is no guarantee that even if you have true migraine symptoms that the device will work for you. That's why you do the trial first.

I might also add that this procedure is only performed by Professor Michael Cousins at Royal North Shore Hospital and it is very costly.

It is one of the reasons that I agreed to do the story, even though it was personally confronting, to try and increase awareness of the procedure to get more funding for the procedure. If you are having migraines that put you in bed for up to four days, there is a fair chance that you are also taking a lot of pain killers and medication.

The benefit of the implant is that it can reduce your dependence on medication and therefore decrease the risk of liver damage and kidney damage from relying so heavily on medication.

That was my greatest concern as a mother of young children, it's not a great way to live and I was missing out on life.

Richard asks: What things do you have to be careful of with the implant?

Symantha Perkins: The main risk is infection. Once you have the implant, any foreign device located internally is prone to attracting infection. If infection attaches to the device, you might need to go to hospital and get antibiotics.

If that fails you might need to have the device removed, and then you have to wait another 6 weeks to have it put in again. Sometimes infection can scar the tissue and than that may mean you can't have it fitted again.

Obviously, as I mentioned, the battery shelf life is NASA grade lithium iron, but if you are running it 24 seven you will have to have it replaced via surgery more often and there are always risks associated with surgery, even minor surgery.

On the lighter side of things, the device sometimes sets off shop alarm metal detectors. I think its Kieren's grand plan to curb my shopping habits!

At the airport, you have to have a manual check (i.e. a pat down) as you can't go through the metal detectors. This can be a little challenging if you are travelling by yourself with three children — you do need to plan a little more and be prepared for things perhaps taking extra time, or needing extra help at the airport.

The really big bummer for me is that you really shouldn't, or you should avoid massage and physio after the surgery as the device shouldn't have external pressure on it. The days of visiting a day spa are gone now! But it's all a small price to pay for manageable pain.

gg asks: Can you still take tablets at the same time as using the device?

Symantha Perkins: Yes. You can definitely take medication. If I have a migraine that isn't responding well to the device, I will take Naramig, or use an Imigran nasal spray.

But, since having the implants, I no longer require lots of heavy pain killers which obviously is good news for my liver and kidneys. However, if the pain became really severe, I could still take those pain killers as well as using the device. However the plan is to implant the device and decrease your need for medication.

tracey asks: How much is very costly?

Symantha Perkins: Well, private insurance — we were lucky because we have private insurance. I was told that the device alone — the electrodes, the wiring and the battery/computer unit is about $35,000 but then you have to factor in hospital stays, specialist bills, ongoing GP visits, the cost of the surgery itself etc.

I would estimate that all up the cost is about $50,000. Obviously, the trial unit is a separate cost again. I would only be guessing, but I guess the cost is about six or seven thousand dollars.

But I was spending a lot of money on medication, on GP visits, on specialist visits, and I guess the cost to your lifestyle — you can't put a price on that. It's definitely worth the cost to have it implanted in my personal case.

The reason I agreed to go public with the story was to try and help make the surgery more readily available, because at this stage there have been about a dozen people only across all of Australia who have had it done.

Derek asks: Hi Sam, my wife has had crippling headaches for 20 years and has tried everything — like you. They say it is not migraine. Can your treatment help non-migraine headaches?

Symantha Perkins: Look, to be honest, it's not something I can answer. I am not a doctor. But Professor Cousins at the Royal North Shore Pain Clinic is one of Australia's best doctors and is always ready to help anyone.

He is not only a gifted surgeon, but also a compassionate doctor, alongside my doctor, that I have ever met in 32 years. I understand the frustration that you and your wife must feel. I have also had doctors dismiss my pain, patronise me or ignore me and it can be very depressing to get no answers, so I would recommend contacting the call centre on 1800 664 937 or visiting http://www.pmri.med.usyd.edu.au for more information.

But don't give up because doctors like Professor Cousins really can be miraculous. I never thought I'd have so much pain relief. It's his encouragement that got Kieren and myself through some very tough times.

Steve asks: I would like to know the cost and how long you had to wait for this treatment. My wife suffers from chronic migraines ... your description of the pain you felt made her cry as it's exactly what she has on a day to day basis.

Symantha Perkins: Private medical insurance — you need to check with them first before the procedure. As far as I know, if you have been diagnosed with migraine, they should cover the treatment.

The IPG device alone costs around $35000 but then you need to factor in surgery, specialist, hospital stays. Again, it is a small price to pay if it changes your life. We were spending a lot of money on regular doctors visits to the GP, medication, and then the general loss of lifestyle - you can't put a price on it.

I went to hospital mid-last year with an acute migraine crisis and was in a fairly bad way. Professor Cousins suggested the implants because he was worried that the medications were no longer effective. The more you take pain killing medications for chronic pain like migraine, cruelly, the less effective they become.

So you end up taking tablets for tablets, because another tablet makes you nauseous or constipated, unable to sleep, or chronically tired. I spoke to another lady who had the device already while I was in hospital and around three months later I had the trial unit implanted in the public hospital system because RNS pain clinic is one of the few of its kind in Australia.

I then waited six weeks and had the permanent device implanted around October. I was very lucky and I am very grateful to have had Prof and his team on my side and I suppose because of the severity of my particular condition, there was a need for haste because I was spending so much time in hospital on very heavy medications. Honestly, I am not sure what the waiting time is, but if you contact the call centre they can help you with more detail.

Brighter Kids asks: How did you find the Professor? Is he a neurologist?

Symantha Perkins: I have had so many doctors in 32 years, that I couldn't tell you the number. I was seeing a neurologist called Professor Geoffrey Herkes and when I became pregnant with my third pregnancy, I became very ill and my obs Dr Robert Ford, also at Royal North Shore, needed to call in the big guns because my case was so challenging.

It was those two doctors who recommended Professor Cousins and the pain clinic. Unfortunately, the third pregnancy and the next two pregnancies I miscarried and spent a lot of the 12 weeks of the pregnancies in hospital, so I got to know Professor Cousins very well.

After the last miscarriage, I had spent five weeks in hospital and was experiencing some liver shutdown. Then we lost the baby and once I had recovered, Professor Cousins suggested that having any more children would be life threatening in our situation.

We were very lucky to already have two children, but those pregnancies were also complicated by migraine. A couple of years ago we miraculously fell pregnant with our third child, but I spent much of the pregnancy in hospital under Prof Herkes, Prof Herkes and Dr Ford, but luckily there had been some advances in migraine treatment and we were able to deliver a healthy baby girl.

Charlie's birth and pregnancy sent my migraines into another stratosphere and I never really recovered and that's when Prof Cousins suggested last year that I needed to consider the implant. He and his team handle all sorts of difficult chronic pain issues and conditions and I couldn't recommend him more highly.

Miss Headhurts asks: Hi Sam, can you have a pregnancy after the device has been implanted?

Symantha Perkins: I honestly don't know the answer, sorry. Again, the call centre would be able to help. I basically didn't consider that because they told Kieren that I wouldn't survive another pregnancy so it wasn't factored into our decision making process.

Di asks: How much upkeep does the implant need?

Symantha Perkins: It doesn't need a huge amount of upkeep as such, but you do have to recharge the battery manually.

That should be done at least once a week. You have to be mindful of infection and there are the other issues I mentioned before such as security checks and being cautious around metal devices and metal detectors.

I have spoken to other recipients who have found going to the hairdressers a little difficult as it puts pressure on the scar, or the chemical can irritate the scar.

But everybody is different. Unfortunately, the procedure is quite experimental in that not enough people have had it done for me to definitively tell you all the pros and cons. It comes down to personal trial and error; and you discover things along the way.

The other major issue is deciding where to locate the battery/computer unit. I had mine near my naval, but it is quite close to the waistband on pants or skirts and that can sometimes irritate me a bit or hurt a bit.

But I didn't like the idea of the battery being in my shoulder, above the breastbone. But everyone needs to make that decision themselves.

Jo asks: Sam it wasn't clear from the story, how often do you now get headaches and how major are they now?

Symantha Perkins: The implant is not a cure. That needs to be said upfront. But it has changed my life dramatically.

I still get a headache most days, but instead of it being an 8/10 where I am nauseous, it is usually a 2-4/10 pain that resembles a manageable, dull ache. I am still aware of the migranous sensation but the device encourages my body, specifically my spine to release its natural pain killing agents to manage the pain better.

Within the last six months I have had two major flare ups, where I have required strong pain killing medication again, as well as the device being on. But instead of being stuck in hospital for a week, I have been able to manage the pain at home with the help of my GP or Professor Cousins and I have been able to avoid going back into the hospital/medical system merry-go-round.

It is really fair to say that it has revolutionised my life and I feel like my old self again.

Generally speaking, the kids and Kieren have even noticed and said things like "Mummy, you're smiling and joking again now, we're so glad that you feel well again".

Even things like being able to laugh again and not being cranky and angry and frustrated every day and yelling at your kids or husband because you are in so much pain. I now have more energy, more patience and more life.

Interviewer: Unfortunately we are out of time, do you have anything you would like to say before we finish?

Symantha Perkins: The device is a great step forward, but another thing to consider is a program that Professor Cousins runs called Adapt which teaches people how to manage pain without medication. Alternative methods of pain management for chronic pain. That has also been a major breakthrough for me personally. Thank you to everyone who came online. I hope I've been of some help. There's nothing quite like seeing your own operation on TV!

Interviewer: Once again Symantha thank you and goodnight.

This concludes our Live Chat with Symantha Perkins, April 8, 2007
Produced by ninemsn.com.au in Sydney, Australia
2007 ninemsn.com.au
Story links

Sam's pain management was carried out at the Pain Management Research Institute (PMRI). PMRI is a major pain treatment, research and education centre.

Pain Management Research Institute
Pain research in Australia is also supported by the
ANZCA Foundation
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