My name is Rik and live in Perth Western Australia and have been in pain since 1987 from a MVA. I have pain in C2-C3 and T4-T7-T8 but C2 and C3 are my worst pain.
I have a long story much like others here I am sure from suicide to good times.
I have had too many procedures to count like many of you I am sure and I pray to God nobody has been through what I have had to endure and if they have my love care and prayers are with you.
I currently have a faulty Intrathecal morphine pump in my body for over 4 years now running on saline.
I have had numerous nerve simulator operations and now have a permanent one that does not work.
I have been a patient at SCGH pain clinic since 1994 and been through hell and back.
My story is so long I cannot type it all but my simulator problem is that the trial was not very successful but I was promised instead of 2 leads in my neck they would put 4 leads in my neck. After the operation I now have 2 in my neck and 2 on my head???????
I asked why on my head and was told for my migraines? I rarely get migraines and if I do it is because of unrelenting pain from my neck but I have a nose spray that fixes that fast. So now I have 2 leads in my neck in the wrong place and for the stimulation to reach my pain it has to be turned up so high it drives me into depression and makes me so tired I don't feel like doing anything. I need to charge for my neck every 2 days.
I am now on pain meds and turned it off. Going to hospital tomorrow for them to try adjust it again. it has been over 2 months now and it has never worked well. It does work but trading one evil for another. Has anybody else had the same problem that the neck simulator is so exhausting and depressing you feel like doing nothing?
I have a loving family and want to live to 100 years old but not like this. My first Morphine pump was great and life was good on 1.75mg a day. It needed replacing after 10 years and the replacement was faulty and now even though the replacement is free under warrantee they will not replace it. Morphine is bad for me is their excuse but im on lots of meds now and still suffering?
I have been paying for private health cover for 10 months and hope I can find a private specialist who will replace my pump and I can live a reasonably
normal life again.
Any advice is most welcome. I am also available if you need to talk or a shoulder to cry on.
I told them at the trial it is not working well enough and Dr Majedi said he will put 4 cables in my neck to spread the load and my muscles will not be under so much strain as my settings are very high to combat the pain. Only 2 leads were put in my neck and just like the trial it is not working properly and my neck muscles cannot cope. It is exhausting and depressing when it is turned on. Niel from Boston now denies I ever said this. We would never have put in the full implant if you had told us this? They just want a sale. At least Dr Majedi does not deny that I told them this information. But now I have 2 leads in my neck that do not work properly. I cannot cope when they are turned on. To reach the pain area the current needs to be so high it takes its toll on my neck muscles. They both promised to show me the xray where the leads are but then stopped showing me after they had a look. I will ask my GP if he can request a xray so I can see what they did. They feel low in my neck but my pain is at C2-C3. Tired of people lying to me.
Hi Rik, im sorry your dealing with all the pain, you've really been thru alot lately. I had the stimulator implanted in 2000, was eventually removed due to broken leads in car accident 2 yrs later. I found the stimulator tech i was assigned useless, when i had a temp one while he was away, she adjusted the stimulator where i had excellent results, it was amazing. I hope you do get good results from it.
A friend has a pain pump, i know her meds were changed as well (forget whats in her pump now). There are a few different combinations they can use, so while you have it and have had great results, push Drs to exhaust all available options.
Like you I've had quite a few ops, you learn to research and not be so trusting.
Take care and hope your recovery is going smoothly.