Pain pump, I have one, how about one for you?

Hello, I just read your post and must respond a bit...I don't have a pain pump, but my 52 year old son does, for 3 years now. It was his last resort. Definitely not something he chose nor wanted. He has endured extreme pain from dystonia and nerve pain in the neck/shoulder. He has dilaudid with ability to give himself a bump several times daily if needed. It has saved his life as he now can have some sort of functioning life. Not much, but limited activity.

I read the post from @wsh66 on this group and suggest his comments were right on re my own son. He seems an excellent contact for you.

I was shocked at your question about ability to function with a pump. My son can't function due to the illness and pain. The pump allows him to live alone, care for himself and his puppy, talk on the phone some, watch tv, walk limited, and sleep some. The thought of jumping, running, playing tennis or soccer or any other type of sport is totally in outer space, unfathomable for him. I have lived with him through this horror for the last 20 years, so I do understand the process. I also understand, at least it seems, there is no person who has a pump and plays tennis or soccer????

I may indeed be wrong, but it is a last resort, not a simple treatment. He's been through horrors for all these years, trying everything possible before having the pump installed. Perhaps he waited too long. May be, but the outcome would not be different, just a different timeframe.

So, there are my thoughts. I don't know how correct, but I do know the pain pump isn't a piece of cake. It's a delivery system for some of the worst pain with some of the strongest medications available. So, a lot of research is good.
I hope if this is something that you need and will give you relief, you get the help and do well. I do think you may be not understanding the severity of this treatment, if you think you will be playing sports again.

Blessings and may your pain be less, controlled and your life be filled with good.
elizabeth

I am wsh66 and I don't expect to be playing tennis any time soon. I did just return from a nice walk and some light tree trimming using my Trionic all terrain walker. The pump reduces my pain from unimaginable to bearable. The pump was never intended to allow me to play tennis. It is a form of palliative maintenance care. I'm not about to pass away but I'm not expected tp get better either. Thus I am qualified to be given this form of "palliative" care. Generally that form of care is for those moving towards the exit from life's great saga.

Even at this stage of life I still have to manage my body and mind to enjoy life fully. Pain and how one experiences it is effected by so many things. It's not just about getting the right drugs. I took a long drive yesterday so it was hard to sleep last night. I had more pain than usual. If I do too much yard work I will pay with more pain. I need to regulate my activities accordingly. Like anyone else I need to get regular exercise. I'm turning 70 this July so of course I can't do what I did when I was 50. However, I can do an awful lot more than I could before getting my pump. Before the pump there were all the narcotics I wanted. My doctors understood by giving me that control I would have better outcomes from the meds. They also knew as long as I wasn't using them to get high or escape a bad situation I would need less medication if I was in control. However I reached a point where the oral meds were ineffective no matter how much I took. I wasn't high but I was dulled, my brain was not as sharp as it should be. When I finally went 1 year without a serious infection I was allowed to have the pump. I'd had a string of pneumonias brought on by large doses of chemo and my immune system would just suddenly crash and I be in an ambulance headed to the U of MN. If an infection like that got into the pump it would have killed my in hours. It's a nonstop route to your spinal fluids and therefore very risky.

My point is and the reason I'm writing this is to impress upon you that your son, just like me is still a pain patient with all the responsibilities that all pain patients have for their own care and he like I can still benefit from all those other things they want you to do.

The most important of these is managing your mental health. Depression and pain are cousins and depression is the bad cousin that wants to lead you a stray. It will tell you that it's not depression. It gives so many other reasons for your predicament, especially the failure of all the other things you've tried. (I have also written on this chat about "Pain and Depression", another thread you should read). I must remain aware of my status visa vie depression. I must have the right meds. I must eat well. I must exercise and stretch. I must find constructive ways to use my time and enjoy myself. So many people with any number of medical issues refuse to entertain the idea they may be depressed. It's still viewed as a character flaw or weakness by many otherwise intelligent people and causes so many conditions to be worse than they need to be, not just pain. Depression is not about what happens to you. It is about how you look at and think about what has happened to you. If your a pain patient and you're not asking about depression and getting a professional opinion and doing everything you can to stay mentally healthy you will pay the price. The same goes for a diet of over processed, unhealthy junk food. Not enough sleep. Not enough exercise.

Medication can only do so much. If you're lucky enough to have a pump and you're sure you have the right meds in it you're much better off than most and much better off than you would be without it. I have to make a point of getting all the other stuff, the exercise, the diet, the sleep, etc. or the pump will be of minimal value. Cancer treatment, not cancer itself, took one of my lungs and damaged the other and left me with neuropathy which will never go away . I have to wear compression garments from my toes to my crotch on one leg 23 hours a day. the combination of the two can be excruciating. Still, I know I am lucky to be alive. I've been an advocate for people with disabilities for 40 years and I know there are so many in worse shape than I am. You must work at this. Practice Yoga or Tai Chi. I myself practice the oldest of these, QiGong. I make a point of enjoying life. I drink very good wine and eat gourmet meals everyday. I cleave myself to people who bring me joy and avoid those who do not. I never say I'll do that tomorrow or someday I'll give that a try. I still study music and practice every day. I never feel disabled with a guitar in my hands. I'm game for anything I can do from a chair.

No doubt, if you can qualify for a pain pump, you're in a tough spot. It is a very serious surgery which involves someone running a catheter up you're spinal column. You must remain aware that all the other things they wanted you to do other than the drugs still have value. Exercise, diet, meditation and things you do to bring you joy are still what will make the difference. I got my pump in 2016 and I have progressed slowly back to where i am today. No tennis or soccer in my future but there is so much more. I wish you Love and Blessing and I hope you can find the things that will make you happy. On the worst days, it is still better to be alive.

Hello, and thank you for your wonderful, insightful discussion. You have said so well what I was attempting to convey to @jthomas458.

My son is now, finally, getting the help he's needed all these years. I think the pump should have been an option long before the last couple years. He wasn't diagnosed for over 5 years, as dystonia wasn't sexy yet and there weren't many, none in our area, movement disorder physicians who knew much about helping someone in his situation. He was a very active 35 year old attorney, his own practice, struck down and in horrid pain since that time. He had nothing to help other than opioids in high doses that dulled the pain, didn't address it well and certainly dulled him mentally. He could watch tv. Couldn't use the computer, or read or walk or swim or do any exercise at all. Had impossible nightmares and sleepless, painful nights for years.

Only with a doctor I found and botox injections did he get some true relief and regain some symblance of life. This has been a 20 year nightmare for this man. Lost years. Life gone.

But, he now sees a wonderful neurologist at Mayo who specializes in dystonia and gives him botox injections. He is working with a mental health clinic via zoom currently due to covid to address many of the issues you mentioned. It has been tough getting the mental health help, but now he's on his way in that area. He has a consultation soon with a specialist and will get ongoing chronic pain, PTSD, behavioral therapies and I believe will begin to have a manageable life, with much better controlled pain and with a growing ability to live effectively with his ongoing symptoms.

There will be no cure. There is no solution or resolution for him. We have been fighting constantly to get what help is available, the knowledge to help him have some kind of future. Truthfully, he's my hero. I'm amazed he and folks like you are able to survive and continue this struggle for survival. Amazing. I honor him and will forever.

I have constant pain, and many serious ongoing health issues but nothing like what he's been dealing with for so long. My losses are nothing compared to his. I'm so thankful for him to now be at this place with the dilaudid pump and botox and mentall health help and the other meds to get him to a better place.

As a mother, I pray he will receive the help to live as good a life as possible after I've left this earth. God is helping, healing and blessing him and me at this time for which I'm immensely thankful.
May you be blessed with healing and less pain as you meet each day.
elizabeth

I suppose I went too far asking about tennis and soccer, but I did wonder about physical activity in general. It sounds like working in the yard and dog walking is within the realm of possibility. And I assume chiropractor and massage are bad ideas because the therapist might disturb the placement of the catheter? Thanks for sharing so generously.

I suppose I went too far asking about tennis and soccer, but I did wonder about physical activity in general. It sounds like working in the yard and dog walking is within the realm of possibility. And I assume chiropractor and massage are bad ideas because the therapist might disturb the placement of the catheter? Thanks for sharing so generously.

I am wsh66 and I don't expect to be playing tennis any time soon. I did just return from a nice walk and some light tree trimming using my Trionic all terrain walker. The pump reduces my pain from unimaginable to bearable. The pump was never intended to allow me to play tennis. It is a form of palliative maintenance care. I'm not about to pass away but I'm not expected tp get better either. Thus I am qualified to be given this form of "palliative" care. Generally that form of care is for those moving towards the exit from life's great saga.

Even at this stage of life I still have to manage my body and mind to enjoy life fully. Pain and how one experiences it is effected by so many things. It's not just about getting the right drugs. I took a long drive yesterday so it was hard to sleep last night. I had more pain than usual. If I do too much yard work I will pay with more pain. I need to regulate my activities accordingly. Like anyone else I need to get regular exercise. I'm turning 70 this July so of course I can't do what I did when I was 50. However, I can do an awful lot more than I could before getting my pump. Before the pump there were all the narcotics I wanted. My doctors understood by giving me that control I would have better outcomes from the meds. They also knew as long as I wasn't using them to get high or escape a bad situation I would need less medication if I was in control. However I reached a point where the oral meds were ineffective no matter how much I took. I wasn't high but I was dulled, my brain was not as sharp as it should be. When I finally went 1 year without a serious infection I was allowed to have the pump. I'd had a string of pneumonias brought on by large doses of chemo and my immune system would just suddenly crash and I be in an ambulance headed to the U of MN. If an infection like that got into the pump it would have killed my in hours. It's a nonstop route to your spinal fluids and therefore very risky.

My point is and the reason I'm writing this is to impress upon you that your son, just like me is still a pain patient with all the responsibilities that all pain patients have for their own care and he like I can still benefit from all those other things they want you to do.

The most important of these is managing your mental health. Depression and pain are cousins and depression is the bad cousin that wants to lead you a stray. It will tell you that it's not depression. It gives so many other reasons for your predicament, especially the failure of all the other things you've tried. (I have also written on this chat about "Pain and Depression", another thread you should read). I must remain aware of my status visa vie depression. I must have the right meds. I must eat well. I must exercise and stretch. I must find constructive ways to use my time and enjoy myself. So many people with any number of medical issues refuse to entertain the idea they may be depressed. It's still viewed as a character flaw or weakness by many otherwise intelligent people and causes so many conditions to be worse than they need to be, not just pain. Depression is not about what happens to you. It is about how you look at and think about what has happened to you. If your a pain patient and you're not asking about depression and getting a professional opinion and doing everything you can to stay mentally healthy you will pay the price. The same goes for a diet of over processed, unhealthy junk food. Not enough sleep. Not enough exercise.

Medication can only do so much. If you're lucky enough to have a pump and you're sure you have the right meds in it you're much better off than most and much better off than you would be without it. I have to make a point of getting all the other stuff, the exercise, the diet, the sleep, etc. or the pump will be of minimal value. Cancer treatment, not cancer itself, took one of my lungs and damaged the other and left me with neuropathy which will never go away . I have to wear compression garments from my toes to my crotch on one leg 23 hours a day. the combination of the two can be excruciating. Still, I know I am lucky to be alive. I've been an advocate for people with disabilities for 40 years and I know there are so many in worse shape than I am. You must work at this. Practice Yoga or Tai Chi. I myself practice the oldest of these, QiGong. I make a point of enjoying life. I drink very good wine and eat gourmet meals everyday. I cleave myself to people who bring me joy and avoid those who do not. I never say I'll do that tomorrow or someday I'll give that a try. I still study music and practice every day. I never feel disabled with a guitar in my hands. I'm game for anything I can do from a chair.

No doubt, if you can qualify for a pain pump, you're in a tough spot. It is a very serious surgery which involves someone running a catheter up you're spinal column. You must remain aware that all the other things they wanted you to do other than the drugs still have value. Exercise, diet, meditation and things you do to bring you joy are still what will make the difference. I got my pump in 2016 and I have progressed slowly back to where i am today. No tennis or soccer in my future but there is so much more. I wish you Love and Blessing and I hope you can find the things that will make you happy. On the worst days, it is still better to be alive.

@wsh66 Your final paragraph said that pain is back to where it is today. Are you saying that it's at the same level as when you got the pain pump?

I had a spinal cord stimulator implant in June of 2017, and after 4 years, my neuropathy pain is worse, and is moving up my legs. On the occasional good day, it's bearable, but most of the time, my pain level is between 7 and 9. At night, when I lie down, it is often the most painful part of the day, and I wonder how much longer I can stand it.

I spoke with a doctor at OHSU about a pain pump implant, but their protocol is to first have a DRG stimulator trial. I'm scheduled for that on July 20. If it helps, I won't want to have the implant until the fall because of the amount of yard and garden work I have to do. It normally freezes in September, so I can put away all of the hoses and soaker hoses in the barn for the winter. It would probably take that long to schedule the implant anyway.

I tapered off morphine sulfate contin a few weeks ago, in large part because of the hassle of getting a fresh prescription for it every month. And I'm tired of hearing all my doctors' lectures about how it doesn't reduce nerve pain. They're partly right, because I can't get a therapeutic dose. Between that and depression/anxiety disorder/PTSD, it's hard to get much enjoyment from the things I've always loved. My B.A. is in music, with piano as my major. I haven't played a note since the beginning of covid19.

It's now tomorrow, and I have to stop writing and go to sleep. One real blessing is that, as a rule, I sleep well with my Bipap mask on, so I get rest from the pain.

I appreciated what you had to say. I'll read it again after I've had my 9 hours.

Jim

I think you misunderstood what I said. I said I worked my way back to where I am today physically, which is greatly improved over where I was when I finished my cancer treatment and got my pain pump. As the levels of pain that we experience increase and decrease no method will ever be perfect. There will always be good days better days and bad days.

I've had extreme pain due to my coccyx. I've had it for 4 years now. My quality of life has changed so much. I'm taking tramadol, 7 pills a day ,but I'm still in so much pain. Can any one reply and tell me how you are living with coccyx psin