Pain Pump??
 

Hi Guys! So I went to my pain doctor on Friday, I have been having increased pain and pain in areas that my two SCS's do not reach. Now he is recommending a pain pump. He explained it to me and gave me material/dvd to look at. I know many of you out there have them, but I am leaning towards no on this one. I feel like it is a little too risky for me. I have so many drug allergies and my luck stinks, I am afraid I would have more problems.

So frustrated!
Nanc

Omigoodness
 

Two scs and a pain pump as well????? A lot of hardward, that.

Bobinjeffmo wrote long ago about his pain pump experence. His threads would be a good read for you.

Prayin, Nanc, for you :hug::hug::hug:

Thank you Mark! I will search for those threads....and I appreciate the prayers and hugs :)

what a decission
 

I agree that you are talking about a lot of metal. Do your own research and trust your gut. Lots of hugs and prayers.

Spiney

Tough call
 

I took care of a patient a couple months ago with a pain pump rapidly ramped up to 5mg per day of dilaudid for chronic pancreatitis. She said no help at all. Although there have been some success stories, there is no significant evidence backing their use. If someone has long term relief from oral opiods, but gets side effects maybe worth a try. My off the cuff advice as a non pain doc MD is that it might not be worth the metal?

Thanks for your reply MD! I have trouble with most medications, so many allergies and bad side effects, so I am not getting much relief with oral meds. We have tried everything so he said this was the last resort. I am afraid to do it, but really need to think it through so I am content with my decision.

Thanks again,
Nanc
:hug:

Five years with my pain pump! Life much better WITH!
 

I have trigeminal neuralgia AND atypical face pain. After 15 years of trials of medications, three surgeries and a lot of lost quality of life I got a pump. Although I am still having issues, 80% of my pain is under control. I would say ask ONLY people with the pump or have HAD one if you want to get your best answer. People who know someone or say its bad for your body and life...? Well, walk in my shoes for the 15 years before and the 5 after and access the situation. I don't spend much time on the board but I did in my earlier pain years...I was always looking for the best, the newest...there were only three or four people on this board back then but I am happy to see a lot more good information here. I am not as eloquent as I once was but I am almost pain free. Life is good.

Thanks Boomette for your reply. I am happy to hear of your success and pain relief :hug:

Hi Nanc
 

Even though you are swinging toward a no with the pain pump, I want to tell you about my friend. She did get one, and had some of the hardware you already have. It works for her, and she hasn't had any real issues with it. I guess I just want to impart some hope. Any decision like that is hard. I sure wish you all the best in what ever choices you make. My friend has had this pump going on 8 years now. ginnie:hug:

Thanks ginnie! Does your friend have RSD? I am scared to death to get more hardware implanted and with some of the risks that were explained to me :eek:

Thanks for asking THAT question Nanc. I'm scared to death of more surgery even if they say the risk of spread is not likely because the site should be far enough from original RSD. I don't trust my luck. Just my 2 cents worth.

one good thing is that the strength of the drug thats pumped into spine is one one thousands the strength of the pill form. i guess thats why there are not s many side effects as pills....pal pete

Hi nanc
 

My friend doesn't have RSD, but a severe kind of bent spine to where she is bent over and actually looks at the ground when walking. Cannot straighten up. She has numbness also in the feet.
RSD is a BIG concern. Special care needs to be taken with you at all times. There are certain medicaitons they use for surgical proceedures so it doesn't spred. A doctor would have to have complete knowledge on how to deal with you before you agree to any more surgery. In that I am sure!!!! What have they said about it, especially the doctor that mentioned the pain pump?
Would your SCS be taken out? You do have alot to think about. I am so sorry you have to go through all this. I have PN or RSD in left foot and ankle. It has not spred. However I am frightened, no question about it. Had injury and a few surgeries that triggered it. Have not had the tests for it, as doc doesn't think its worth it. She knows what I am experiencing is one or the other.
Hope your situation has a good resolution, so you can enjoy life more. ginnie:hug:

worth no money can buy
when those who walk
in the shoes of
chronic pain
i will be open to listen

thank you if i could tip i would
love you sis

pete
if i may

are your episodes
other term
time to take the medicine, medicines
like myself having to slowly
force my body to get used to it
as i to am allergic to so many given
including patches
in the two years dalaudid being one
after my first surgery
truly thought my death would be that day
side effects more than what a horse could bear
stop stop stop stop stop stop already

Hi ginnie!
My pain dr is the same dr who put in my two SCS's and who would put in the pain pump should I decide to go with it. He only explained the pain pump and some risks involved then gave me information to review on it. Told me to let him know what I think and if I want to proceed, at that point we would discuss it in greater detail. He said we could leave both SCS's in...which makes for a lot of foreign stuff in me :( I think the thing that scares me the most is that the trial is done in the hospital (3 day stay) and I would get a spinal tap and the risks with that...:eek:

Sorry for the problems with your foot, hope you get some relief soon!:hug:

I am just so fed up with all of this!!!

Thank you Thank you Boomette!!
 

So glad you wrote! Thank you for sharing, and I am thrilled for you "Life is good." That is what it is all about!
Yup, :hug:

Hey Nanc
 

Still prayin,
Yup,
At least I can do that, :hug: :hug: :hug:

Thank you Mark!! I really appreciate the prayers, especially when I have had some really bad nights this past week. I was up all night three nights the past week, including last night. I think last night was attributed more towards an allergic reaction to morphine, the other nights was elevated pain levels :(

It's definitely a big decision to make, but I know you'll take everything into consideration and make the right decision for you :hug:

I would be a little worried that your trial will only be in the hospital, although it's understandable why. About 2 years ago I stayed in the hospital for a week with an epidural catheter as a treatment attempt for my RSD. I had very little pain while it was in and felt great, but as soon as it came out, the pain came back. But since it went well, I was a candidate for having a tunneled epidural catheter put in for 6 weeks and I had to carry the pump around with me everywhere, so not permanent, but a lot more long term. Having it in day to day life, I got a lot less pain relief than when I was in the hospital, because the medication had to be at levels where I could function in regular life and I was also doing a lot more. It took a lot of medication adjustments each week to try to get the dosage right where I was getting pain relief but wasn't getting too lightheaded or feeling sick from the medication, and we never reached a good balance. And the problem was when the pump wasn't helping enough, even with giving myself bolus doses, I couldn't take any oral pain meds because of the pump.

I don't mean to scare you away or think that it won't work for you, but it's just my 2 cents that even if it feels great in the hospital doesn't mean everything will be great after. It's unfortunate that it's not the same as the SCS trials, where it's a pretty similar experience to what the permanent is like.

Thanks for your valuable two cents yellow! I appreciate the info. It really is a lot to consider :eek: I was leaning towards no, then towards maybe and now I am back to no. I had an allergic reaction to morphine the other night, so my option would be Demerol which gives me headaches. I talked to my PCP this morning (at my monthly visit) and she doesn't think it is a good option for me because of the reactions I tend to have to almost everything. After that conversation with her, I am definitely not going to get it. She said she has other patients that have them and they work really well for them, but she doesn't feel like it would work for me...I don't either :(

Thanks again,
Nanc
:hug: