Ok, lets see if this one is better. We have had some of the responses go wacky and go all the way across making it a pain in the butt to try to read the post lol.
I think I need to clarify something here so we are on the same page. My concentration dose in my pump is 37.5 mg(Dilaudid) and in 24 hrs I receive 6mg of that 37.5. Thats why when my new dr increased me from 20mg concentration level it made such a huge difference in my pain. So, are you getting 20mg over a 24 hr period? I know it can get confusing. My former doc had me 20mg and I received 5mg of that in 24 hrs and it did pretty much nothing.
My former dr ref all his pump patients to the dr I am seeing now since he left pain mgt, oh was that a blessing in disguise. I had 2mg of oral Dilaudid for BT and it did nothing. My new dr was in total shock when she saw how bad a shape his patients were in and here we all had pumps. When I went in for my first appointment, I was walking bent over, it had been awhile since I was able to stand straight, of course I walk with a cane as well. She went over all my info I filled out and then she already had some of my records from other dr. The first thing out of her mouth was "your pain has been so friggin under treated I do not know how you have been able to do anything". She then apologized for saying frigging but she was upset at the shape I was in. I looked her right in the eye and said "I am use to the pain". Her come back was "you are so right, people can become use to pain". Then she said the magic words "I can help you, I am going to give you your life back, it will be a little different from the old life, but I will not be satisfied until I have you out running with the rest of them". I cried right then and there and I am not a crier.
She said that my old dose was so low, thats where you start new pump patients at, not maintain them. She said I was a very, very, very long way from ever becoming tolerate to the Dilaudid. She said I have patients right now on 60mg in their pumps and thats what it takes to keep them functioning. I just had a refill and she gave me a 20% increase in the pump. She raised my orals meds from 2mg to 4mg and I can take 2 at one time. She did not know Dilaudid came in 2mg, she said Tylenol was stronger than that. When I went in for my 1st checkup after my initial pump refill with her, everyone, nurses, the dr all said, wow you look so much better. I laughed and said how do you know. They said we can see it in your eyes. My dr & nurse both said the look in my eyes told them I was in severe pain, I had a dead look to them. Now, I have the sparkle back in my eyes. She relies on me to tell her when I need an increase also. She has her own pain assessment sheet that is so accurate because it discusses daily living, not happy or frowny faces. She says those sheets are a joke. She said I want to know what my patient is capable of doing with assistance or without assistance, things like, bathing, dressing, cooking, anything that pertains to ordinary daily life.
My dr totally believes in pain pumps if they are used correctly and to their maximum benefit. She says the pumps were designed to control pain on a decent level and return function to a persons life. Otherwise she says you have one for nothing.
Please do not get offended by what I say next. Your dr is under educated in pumps and should not be handling pump patients. Not only that but he is under educated in medications that go in a pump. He is just like my prior doc. If he intends on handling pump patients he is in dire need of schooling. The fact alone that he does not fully believe in pumps & the SCS is very scarey to me and says nothing good about
him. I am living proof that the man is totally wrong. I know the difference of good dr and bad dr with a pump. been there done that. All I can say is, if this is how he feels about
pumps and medications then you will have a life of nothing but pure hell and thats wrong. I could sit here and cry for you because not long ago I was in your very shoes. I know how I feel now and I thank God every day for this dr coming into my life.
Your dr is so is wrong about
the Clonodine and he needs to reduce the Bupivicanine to 7.3 and you will get some relief with your legs. Thats the problem people are having with that drug because the dr has their dosage too high. My right foot was going numb, felt burning hot pain type pain. Since she knocked mine back to 7.3 that has totally gone away.
Yes, Medtronic came out with the PTM I think they are called for short. The demand is so high they cannot keep up with it and there is a shortage on them. But, listen to this, if you need a bolus say every day at 2:PM if you have the right pump yours can be programmed to give you a bolus every day. If you have that type of pump then you really don't need a PTM. Medtronics can tell you by your model # if your pump has that feature. Mine doesn't, my ins would not pay for that one.
I really hate to hear you being in the shape you are in and with a pump it should not be that way. Your drs attitude towards pumps and such is a serious matter. But, its like I said a dr can make a person either a success or failure with their pump. Wish there was something I could do for you. Hugs, Susie
Post Edited By Moderator (Lynnwood) : 3/25/2009 1:55:20 PM (GMT-6)