My adult son had a proctocolectomy done in 2004 and has had unremitting severe pain ever since his daily pain is generally 5-7 range. When it's bad at 8-9, most often he is in bed and uses a heating pad on high to disrupt the pain signals.
He has had every implant but they have been unsuccessful due to how low on the spinal cord his nerve damage is. The only implant medication he hasn't tried is prialt and that is because Medicare will not cover it, nor will Jazz pharma assist him financially.
There is a motor-cortex stimulator that has been trialed for pain relief but I'm afraid of the potential side effects of stroke, seizures, etc. Plus, it may not work either.
All extended release meds are out because he doesn't have a colon. He has a "good" pain doc but I would like to know if anyone here has experience with prialt or the motor-cortex stimulator.
Prialt has been known to cause major problems in some patients, so I would do some intensive research into it's use and complications prior to considering it.
I think that I would consider the stimulator before going to prialt. Usually, the stimulator has a trial period where temporary leads are placed and if the patient does not get the 50% or greater reduction in pain, then the trial is considered a failure and there is no permanent implant done.
If it does work, then it can be quite beneficial in regards to lessening the pain levels.
Sorry I didn't respond sooner. I didn't know they did an external trial on the motor cortex stimulator, that's interesting. I know the prialt can do nasty things if it extravasates..I'm so sick of seeing my son live in constant pain and I check on him all the time like he's still an infant, making sure he's okay.
The following user gives a hug of support to CoffyDrinker711:
Hi Coffe drinker. I have had a pump for 10 years forst the synchromed one and they replaced that a few years ago with the Sunch 11. Honestly, 50 Reduction in pain is what they shoot for. Im at a 5 ona good day but just had an increase after 5 years. Im on a moderatelyhigh dose for 3 failed lumbar fuusion and broken hardware. I have added clonidone in the last 5 years with limited suces. got a little extra relief from cymbalta. But my doc has stopped using prialt due to the potential phsych risk from prialt, mainly psychotic breaks na about a third of his patients. I get being bed wrrin, did that for several years untill I had the pump implanted. More importantly han any drug is getting out of bed and excercising even if it a simple walk around the block. There is absolutely nothing worse than a sdentary luifestyle for his overall health. Pain wont kill you although I have had 2 heart attacks, But being bed wridden has so many compications. At some point when any level of relief was obtained, he should have gotten out of bed. I still have bad days, normally from the days I work part time, I get up into the 8 range and dont sleep for a day or two, But just getting out of the house and interacting with others is morth the pain in so many psychological ways. He has to interact in some way with other pweople and has to find something to distract him from his health issues. I am really not famliar with his condition, but certainly know about pain,, have done the pain management pain since the first failed surgery in 93 and they didn't use opiates in the 90s for pain. Im not disagreeing that you should look for something to help, but onc he gets that relief, he needs to find some kind of life outside of his bed. It s no way to live and its hard to say he is benefiting health wise if he is jhust going to lay their till he has organ failure, a heart atack or becomes terminally depressed. Yes it hurts when you first start moving again, but its absolutely tru aas far as no pain no gain. I get it is your child, But your not doing him any favors by saying this is an aceptable way to live. You have to get him inviolved in something to ocupy his mind and distract him from pain. Has your do considered adding a duragesic patches to the pump. I know it sounds extreme but I have met several people that use multiple routes for opiates and the combined effect from two different opiates can be greater than any single as they hit different receptors. If your talking deep brain stimulation, you talking major risk too. If you could keep hm at a 5 70% of the time would he be able to walk and stay out of bed. That is something that just cant be exceptable other than in terminal patients or paralysys. Sounds like your doc is doing his best, but what does your son do to improe his situation. Has he learned Bio feedback, self huypnosis, guided imagry, Yoga, anything other than relying on a doc to resolve all his pain issues. Does he get any ecercise at all, Even in bed their are things you can do to keep up your strength if walking simply isnt possible. If he doesn't have reasonable expectatons from the meds then he may not be happy with the brain stim either. Obviously pain free is not an option and my heart goes out to a parent caring for a child in pain, but you can love him to death if you dont require him to make an effort, Pain will always be an excuse and at some point he has to understand he is going to hurt to some degree regardlesss of what he does BUT HE STILL NEEDS TO BE AS ACTIVE AS POSSABLE AND INVOLVED IN LIFE IN SOME WAY. OTHERWISE ALL YOUR OFFERING IS HOSPICE. So ,uch of pain anagement is up to the patient and the outcome is determined by the patients mid det/, I havea bieve with Cerabal paulsy and has been n a wheel chair her entirelife, But she still lives in an inddependent envirem,ment and did so at her request and fighting for her own conservertor ship. She wasnt happy stuck in a wheel chair in my brothers home and got alawyer and now is happy living in a group home where she isnt stuck based omn someone else schedule.She has had some ungodly surgeries, Entire spinal fusion with a uni rod, Had her hamstrings released which has caused her hips and legs to spasm and conort, but she has a life and her independence. They never thought she would live beyond 2 years old and is now 32 due to her will tolive and live a better life than 2 parents that had to work could provide. After years of crappy in home health care and even abuse at one providors hands, She fought for the life she has
now and actually got a lawyer to allow her to make her own decisions. Her brain is just fine but she is stuck in a body that doesnt allow her to live the way most of us take for granted.
My deepest sympathies, Dave
The following user gives a hug of support to Shoreline:
Dude! I have looked for you for the past few years on this board! I used to post to this board in 2004-2006 when my son first became ill and you were so knowledgeable and kind and helpful- then I lost sight of you and the healthboards for all kinds of reasons. I am so glad you are still in the world and hanging in there!
Please don't think I'm okay with my son lying in bed because I'm not. I ask him to do things around the house to get him up and moving but it's so hard for him-he describes his pain like "a hot railroad spike go up my behind" and it will follow down the nerves to his feet when it's really flaring badly. But you know what it's like to live with horrible chronic pain.
His doctor has added gabatril to his medication regimen and it works except he can't hardly remember his first name the dose is so high. I don't like when he takes it, nor does he.
I hope you are well and I thank you for your reply to my post. I will keep it in mind.
Hi Coffe, I haven't been around as much because after my pump implant my head cleared, I began exercising and lost 40 lbs and then returned to work part time. I just didn't need to be on the forums as much as I was interacting with live people which certainly has it's benefits. I just cant describe the benefit of getting out of the house and interacting with other people. Being stuck at home, Particularly in bed is so depressing and makes you feel so cut off from the world. Yeah I used to call Neurontin, Morontin, it made me stupid, forgetful and lethargic. I didnt get what the big concern with opiates when if you wanted to be sedated you could certainly do it with those meds. You may have to weigh the benefit Vs the side effects. Perhaps talk to his doc about tapering down and see if it really is helping, A clearer mind will make staying in bed even more difficult and unacceptable. The more drugged he feels the easier it to except not having a life. It makes the unacceptable acceptable.
I look at it as I'm going to hurt to some degree regardless of what I do, So why not just do it and enjoy as much as possible. How old is your son. Dealing with a teen Vs an adult is certainly more challenging. Does he ever read the forums and try to interact with some of the posters. I'm not sure of his degree of disability but my niece lives on ******** and in her condition, being a quad, that interaction and the interaction in the adult group home has changed her life. It is sad to see a perfectly working brain stuck in such a wrecked body, she does have her moments but enjoys the family get togethers and her independence and even has little on line ******** crushes. The whole ******** relationship thing is beyond my understanding but its what the kids do these day. I do hope he can make the most of of a bad situation and I didn't intend to make you feel guilty in any way. I just learned from experience regarding being home bound and sedentary. Two heart attacks since 2000, Knock on wood, I've been OK since 2006 heart wise. My wife and I went to Cancun for our 20th in 2008 and are going back for a week in June for our 25th, We also made it to the Dominican earlier this year and its amazing what a change of scenery can do for the soul and a relationship.
All my Best, Dave