BlueJet2 please read

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Date Joined Feb 2003
Total Posts : 16768
   Posted 3/25/2009 2:35 AM (GMT -6)   
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)

Forum Moderator

Date Joined Feb 2003
Total Posts : 16768
   Posted 3/25/2009 4:42 AM (GMT -6)   
BlueJet you asked my location of my dr, Ft Worth, Tx


Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 3/25/2009 5:29 AM (GMT -6)   
Oh Darn, Susie Q, I wasn't able
to read your post.
I couldn't find Blue Jets post at all.
Your post went clear across the page.
Way way way
across the page.
There isn't a chance that I can read it.

I put this against the left column
in hopes that you can read it.

Would it be real hard for you to shorten
it and re-post?


Forum Moderator

Date Joined Jan 2005
Total Posts : 9245
   Posted 3/25/2009 11:48 AM (GMT -6)   
Hey Susie!!!

Can you email me, please? I lost your address...of Need to see if we can figure out why some posts are all strung out. I did try to go in and take out any extra code that was in there but that didn't seem to be the problem. I'm not much on the programmer side of things so will see what we can do to solve this problem.
Yikes! This wraps clear around the planet!!

Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
Happiness is something to do, someone to love, and something to hope for."

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/25/2009 2:58 PM (GMT -6)   
Hi everyone -

I editted the extra wide post so you guys could read it and continue the discussion. What I did was

1) "copy" the wide blue text from the post
2) "paste" the text into a word processing program (MS Word)
3) Check to see that the text looked ok in the word processor
4) Editted the post, deleted the entire post & formatting codes
5) "copy" & "paste" from the word processor file (the MS Word file)

all seems well........

Lynnwood, Co-Moderator: Lupus Forum
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Life is far too important to be taken seriously. –Oscar Wilde, 1882

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 3/25/2009 3:04 PM (GMT -6)   
Could you save what Lynnwood just wrote? It's pretty darned close to greek to me (LOL), but this happens a lot so at least someone here will know the solution!

p.s. Thanks Lynnwood! You have solved a mystery! yeah

Post Edited (PAlady) : 3/25/2009 2:10:22 PM (GMT-6)

Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 3/25/2009 5:52 PM (GMT -6)   

Hi Susie,

Thank you for sharing your experiences with the pump, as well as your concern for my situation and I am not at all offended by your comments.  It has bothered me for quite some time that he does not seem to be willing to use the pump to its fullest capacity and that I get such conflicting opinions on whether the dosage I get is nearing the acceptable max.

Just for clarification, my concentration is 20mg of dilaudid per ML and my pump holds 40 ML's.  I get it at a rate of 16 mg per day from 12 a.m. - 2 p.m., and then I do have a programmed "bolis" which they call a "step" that increases the dose to 18 mg per day from 2 p.m. to 12 a.m., (so I get somewhere between 16 - 18 mg total per day).  The "step" does help some, it takes about 45 min. - 1 hour for the bolis to make its way through the catheter and into my spinal canal, so it I feel it from approx. 2:45 p.m. - 12:45 a.m. and I do not have to even look at the clock.  I can tell you with almost pinpoint accuracy when 12:45 a.m. comes along.

They can program up to 4 "steps" a day and then if you have the PTM, you can give yourself up to 4 "bolis's" a day.  Some people do have both, but I really wanted the PTM device so that I could give myself a bolis if and when I felt I needed it, like on day's when I have doctor's appt's., or have a family outing, etc.  With the "step", we set it up for the time of day I felt it would be most beneficial, it kicks in about the time my kids get home from school and covers me through the evening when I am trying to be available to them to help with homework, cook dinner, etc.  Ultimately, I would like to keep the one step that I have and then have the PTM as needed, but as I told you, my doctor has been unwilling to consider it.  But, he went from not even being willing to discuss it to asking me to have my nurses put some info together and said he would talk to some colleagues as well and we would revisit the subject at a future appt.

I was told that the reason the PTM was not available was because they were revising it, but if it is as you said (and I'm sure it is), that there is such a demand for it, that may be in my favor as well because his two reasons against it were that he felt it was very dangerous, and that even though is was an available feature, he had never known any doctor's/colleagues that had ever approved one for use for any of their patients.

I did briefly try going to another PM doctor who came up my way from New York City 1 day a week who had been recommended by my nurses because they said he was "more aggressive" with increases and they spoke to his nurse ahead of time and she indicated that he would be willing, after getting to know me, to try the PTM, but after going to him a few times, I brought it up as a possibility for the future and got a similar reaction - he said he just was not comfortable with the idea of them.

I am going to talk to my neurosurgeon as well as the Medtronics rep. when I have my surgery next week (I think I mentioned that my SCS needs a new battery), to get their opinions too. 

I am so glad to hear that you are doing so well since switching to this new doc.  It at least gives me some hope that given the right doc and the proper dosages of pump meds, my pain could be brought under control.  I wish I lived in Texas!

Thanks again,

Lorie (Bluejet2)






Forum Moderator

Date Joined Feb 2003
Total Posts : 16768
   Posted 3/26/2009 12:28 AM (GMT -6)   

Hi Lorie,

Oh, I am so glad one of the moderators was able to fix my post to you. I have no idea what happened. Your post was doing that so thats why I started a new thread. While typing your post it all looked normal, don't know what happened.


All I can say is I really feel for you, because I was where you are at ever since my pump got put in back in 05. I tried so hard to block the pain from my mind and that did not always work. I sat and talked to myself and try to rationalize that I should not be hurting, after all I have pump. I went as far as starting to think it was in my head. I was as uneducated as my PM dr.

Talk to the Medtronic rep because all the info I am getting is they cannot meet the demand and thats why they are short on supply. This came from Medtronic. Your dr is not doing you any justice at all, he is not properly treating you and thats what the medical profession is suppose to do.

My current dr says she has people on 60mg a day and thats nothing. A couple of her patients have 7 different meds in their pump to control the pain at a decent level. Your nurse is not lying to you, your dr is. My neighbor is an RN and has been a very long time. He told me that my pump doseage was very, very low. He said think about this, people can go to an ER in severe pain and get a shot of 5mg of Dilaudid right then, your doseage is being spread out over a 24 hr time frame. When he said that to me, I felt like someone poured ice water on me, because I knew what he said was true.

Right now the pain mgt drs here in Ft Worth send all of their pump patients to my dr simply because of her experience with pumps. Those guys patients kept complaining of pain and they could not figure out why. Its because their doseages were all wrong and the drs knew they were out of their league trying to handle the patients. They were not educated enough to handle a pump patient. The worst part is their ignorance of medications.

If your dr would increase your concentration level of Dilaudid, 9 times out of 10 your pump doseage could be decreased because of the stronger concentration level. Where some are having a conflict on the PTM is it does the same as bolus if your pump can be programmed for them. The comment has been whats the purpose they both do the same. Then there is the running the risk of not having the pump calculated correct and needing refills sooner than expected. Then you have the drs that have their head stuck up their you know what, and they are saying the doseage needs to be kept to a minimum to avoid tolerance issues. Well, its been proven these tolance issues they speak of take a very, very, very long while to ever get there. I also read that a medication would pretty much stop being effective long before you ever got to the tolerance stage. 

All I can say is this, when we patients are told about these pumps for the most part, our drs tell us how much better it is going to be for our pain control. They say it handles the pain so much better than oral meds ever will. That part is all true, but the dr does not bother to tell us, oh by the way my knowledge is limited in pumps and medications so you may not get all that relief after all. It burns me so bad to know how I suffered needlessly. It burns me even more to hear all the stories that are just like what I went thru. I am really thinking of trying to figure out a way to put an end to these drs that are doing this very thing to their patients. Don't think for a moment I wouldn't go public, I sure would. There needs to be special requirements put in place for drs that take on SCS & pump patients. They should be required to take a certain amt of pharmacist schooling. I think it should be a specialization for drs so they have to take continuing education courses to keep up their specialization. Hey, specialists that are board certified has to do this. 

Don't give up hope, there has to be a dr out there that can and will help you. I just really feel bad for you because its all so unnecessary to be in the shape you are. Don't forget to talk to the rep and your neurosurgeon too. By the way, you didn't say whether or not your dr gives you meds for BT pain. Do you get them? Thats one thing both PM drs did agree on, is pump patients must have meds for BT pain. Keep us posted on how you are doing.Susie

Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 3/27/2009 1:53 AM (GMT -6)   
Hi Susie:

Yes, I do take meds for breakthrough pain - I take 60mg of roxicodone every 3 hours with a max of 5 doses a day. I also take flexiril 20mg, 3x's a day, and Klonipin 1mg, 2x's a day for anxiety.

I am definitely going to talk to my neurosurgeon and the Medtronics rep., but I don't know how far it will get me because I know my neurosurgeon does not maintain the pumps, he just puts them in and then refers his patients to a PM who I have already considered going to even though he's even farther away than the one I go to now, but he does not take my insurance.

The agency that sends the nurse to my house to fill my pump every month has someone who's sole job is to match patients with doctors that take their insurance has tried to find me a PM that would be more aggressive, and she could not find anyone for me and I am very fortunate to have very good coverage as my husband works for New York State as a Corrections Officer. The agency that sends my nurse used to do all sorts of home health nursing care, and now the only thing they do is fill pumps, and they cover a huge area covering parts of 4 states, they travel as far as 5 hours one way to see patients, and they have no one to recommend to me.

The other sad thing is my PM has been doing SCS's and pumps for at least 15 years and I think it's closer to 20, and as far as doing the trials or implanting the devices he is great, and any other avenue of pain management he is top notch. I believe it is as you said that he is under-educated in the pharmacology end which I just wouldn't expect from an anesthesiologist, but apparently that unfortunately is the norm, not the exception.

I like the idea of the PTM over the programmed bolis because I would get to decide if and when I needed it. I could give myself the extra meds in accordance with what I needed to do each day instead, of trying to plan things according to when I was programmed to get the bolis.

I went for my pre-op testing yesterday and my regular primary care physician was on vacation and the doctor covering for him decided to do all kinds of bloodwork and tests that my surgeon hadn't even asked for and now has me scared to death. He said that my EKG show subtle flat t-waves (but didn't explain what that means), and ordered an echo/ultrasound of my heart and of course the cardiologist was gone for the day so I couldn't get the results. Then he noticed that bloodwork I had done in January showed elevated liver enzymes, so he wanted to check them again and they called me last night to say that they are still elevated and they want me to follow up with my primary. They would not tell me what the actual numbers are and they did not know if the doctor was going to hold up my surgery because of it, but my primary won't be back in the office until Monday and he is booked solid so I could not get an appt., and my surgery is scheduled for Tuesday, so I am going to have to get on the phone tomorrow and demand some answers.

If he holds up my surgery, I don't know what I am going to do with myself, because the hope that the SCS working properly was going to take the edge off of this torturous pain is what I have been holding onto to get me through.

Thank you for all of the information you have given me and for the time you have taken to to read my posts and write yours. I will keep hoping and searching for someone that will be properly educated and committed to getting me the results I so desperately need, and I will keep you updated on my situation.
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