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New Member, Hi Everyone! pain pump questions

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Posted 10/6/2009 1:32 AM (GMT 0)
Well, i dont know where to start.Ill try.I have Herniated Discs in Thorasic and Low back.I had lw back surgery in florida in 2001.Ive been in pain ever since. In 2008 was dx with breast cancer left breast removed.Now 2009 i have nodule on left lung.I will be having surgery on lung soon.I go to PM Dr he put in a pain pump and im on oxycodone.With pain pump and oxycodone 30mg Plus in pump daladid.Im still in alot of pain dont know what to do now.Im having another MRIon back sometime next week to see if back is worse.I have four herniated disc in thorasic part and one herniated in low back again.Seems like ive been in pain for years.I dont know what else they could give me.Can someone that has pain pump maybe help me? Thank you wv.girl.

Post Edited By Moderator (Chutz) : 10/11/2009 5:47:52 PM (GMT-6)

Posted 10/6/2009 2:25 AM (GMT 0)
Hi, wv.girl,
I want to welcome you to the chronic pain forum of Healing Well. I'm sorry for all you've gone through, and continue to face. I can't help with the pain pump as I don't have one, but some members here do, and there have been some informative posts in the past about them. I'd suggest using the Healing Well search function to search for them.

Also wanted to mention there are several other forums on Healing Well, and you might find some helpful also, such as the breast cancer forum. You can post to more than one, and it's each to switch. Just use the Quick Jump menu at the top of the page.

I'm sure others will be along to welcome you, and hopefully some people with the pump will jump in. This is the best support group on the internet, IMHO. So glad you found us!

Again, welcome.

PaLady
Posted 10/6/2009 5:27 AM (GMT 0)
wv.girl

WOW you sure have experienced allot!  I have some bad thorasic disks so I can relate to that, T3 and T8 and a herniated and torn disk at T12, and then a herniated disk at L4-5 I just got a C5-6 fusion done last Monday and I have had C6-7 fused back in 85. So I can definitely relate to all your back pain. But what I wanted to say to you is WELCOME! Welcome to Healing Well Chronic Pain Forum! With all you have been through you really have come to the right place.  I personally think this is the best site on the entire internet, there are the most caring and compassionate people here that you will find any where! We all help and support each other and listen and are just here for each other. I hope that you find this site and forum as helpfull and supportive as so many of us here have! With that said there are a few people here that are on pain pumps and I am sure they will be around shortly to help you in any way they can! I do hope that you will stick around and join our family here.  Pain is such a personal thing and that is one thing that the people here understand, we will not only sympathize with you but we can and will empathize with you, and that makes a world of difference! We know what it is like to have Chronic Pain so we do understand what you are going through, and how desparate one can get when one is having extreme pain! The saying misery loves company, well here you have all the company you would ever want! So when you are here you are never alone with your pain!

Anyway  again I want to Welcome you to our forum!

wishing you only the best!

White Beard

Posted 10/8/2009 5:37 AM (GMT 0)

Hi WV. Girl and welcome to Healing Well. Wow, no wonder you are in alot of pain, goodness, with what you have been through and still going through. You have an awful lot on your plate right now. I am so very glad you found us and hope you will decide to hang out with us here at the forum.

I have a Medtronic pump, inplamted June of 05 for low back pain. I had a rough first year trying to get the pain under control with the pump. I have other health issues that had my PM dr extememly conservative when it came to ramping up my pump. I am not blaming him as he was looking out for my best interest no doubt.

Other than Dilaudid what else is in your pump? What is the concentration dosage of the Dilaudid? By that I mean like mine is 37.5mg , (I have Dilaudid and 3 other meds in my pump), my settings are 8.5mg a day. I have 4mg Dilaudid for BT pain that can betaken 1-2 at a time. Besides the Dilaudid, I have Clonodine 150mcg/ml, Sufentanil 15mcg/ml and Bupivacaine 7.3mg/ml.  The PM dr I was seeing that recommended my pump was good to a certain point with pumps, but after he reached his limit of knowledge it all went down hill. That is a big problem with many pump drs, they are under-educated in pain mgt, under-ediucated in pumps and under-educated in medications that can be used in pump. If your dr falls in this category you are in trouble. I have been there. My PM dr decided to quit PM and go back into anesthesiology. Little did I know that was a blessing in disguise because I truly liked my dr. When I complained to him I was in terrible pain his comeback was " well you have the strongest pain drug there is in your pump."  I accepted that answer but kept complaining lol. He had 45 pump patients that he referred to a dr here in my town. I was not happy changing drs, I was not happy that I was in severe pain but I had become use to the pain and I accepted it as this is how things will be. I saw my new dr Jan of this year. By the time I got to her I was bent over, I could not stand straight any longer and hanging onto my cane for dear life,lol. She was horrified when she saw the shape I was in.  She was even more horrified when she asked her nurse to scan my pump and get my readings. My dosage was so low that a person could go to ER and get a shot of Dilaudid for pain and they would be getting more in a shot than I was receiving in my pump. She doubled my Dilaudid concentration dosage for starters, and increased my BT meds from 2 mg to 4mg and allows me to take 8 mg at 1 time if needed. I still walk with a cane because of balance problems but I am not walking like an ape with my knuckles dragging the ground any longer,lol. My pain is very well controlled until we have a front come thru but that temporary.

My new PM dr has over a decade of experience when it comes to pumps so she is not a rookie. She is a retired neurosurgeon. She also mixes her own compounds there in the office and and has vast knowledge of the drugs that can be used in these pumps and she believes in using the pumps to their full capacity, she says thats what they are designed for. She assures me that I am not even close to being maxed out on my dosage with the Dilaudid, other dr said I was lol. She has one patient that she uses 8 different medications in his pump. She is a firm believer in the pumps giving people their life back. You may not get 100% of it back but I am very happy with where I am at. I am doing things now that I have not been able to do in the past seven years. She is not stingy with increases and relies on the patient to tell her when an increase is needed. I know that I am one lucky person to have this dr taking care of me and I thank God every day for her being in my life.

Please make an appt and go in and see your dr and tell him what is going on with you. By the way, how long have you had the pump? If I can answer any questions you may have please let me know. If I can help you I will sure try.

Posted 10/8/2009 11:32 AM (GMT 0)
I don't have a pain pump but welcome to HW. You certainly have so much to face and so much you've been through. Plus dealing with the pain on top from your back. Please feel free to come and rave anytime. There is always someone on this site ready to give a shoulder to cry on or fabulous sensible advice. It's such a great site,
welcome again, golitho
Posted 10/8/2009 2:49 PM (GMT 0)
To all who sent me a message: Im so greatful to have found this site.I have someone i can relate too now.Alot of people that arent in any pain dont realize what you go thru. I thak all who sent me a message.Im so sorry for all your pain you all are going thru.

I went to cardio/thorasic surgeon yesterday and he told me the nodule on my lung had grown.So i will be having surgery as soon as the cancer on leg has healed.I also went to have a mole removed about three weeks ago. It was squamos cell skin cancer.It did not heal up so i have been on antibiotics for that.My surgeon told me he cant operate on my lung till my leg heals up.Its on left leg right up in crease of leg.Its starting to look like now its going to heal. What happened they put about ten stiches in it.When i went back for stitches to be removed they removed them and it came open where it was suppose to be healed. I need to have Lung surgery as soon as possible because the nodule is growing. They told me they would have to remove bottom left lobe and i would probably have to have chemo if it went into lymph nodes.

I will keep all of you in my prayers and hope we all get well.
Posted 10/8/2009 3:01 PM (GMT 0)
I forgot to tell what was in my pain pump it is Dilaudid 12.0mg/ml.Bupivacane8.0mg/ml.Clonidine100.0mg/ml.It says on my paperSimple continous drug Dose per dayDilaudid2.781mg/day. I go to pain dr today.I am going to tell him about my pain is unbearable and that i have cancer also in left lung.Maybe they will turn pump up.Plus raise my oxycodone to 40 mg three times a day. Oh if anyone has had lung surgery please let me know what they do and how bad is surgery. Thank you all,Wv.girl


You all are in my prayers
Posted 10/8/2009 5:42 PM (GMT 0)
wva your 12mg concentration dose is very, very low needs to be increased for sure, i am at 37.5 which is a big difference. If he will bump that up you would not most likely need to increase your BT at all saves on the liver and gets your pump working as it was designed to work. I was at 25 mg but my pump settungs were too low, then new dr bumped it all up-made a huge difference. Your dr should increase your concentration dose to 25mg and the adjust your pump settings. When your pump is set right you do not watch the clock waiting to take pills or waiting for them to kick in its awesome.
Posted 10/9/2009 3:10 AM (GMT 0)
w v.girl
You take care of yourself and listen to straydog about the pump she know about those thing! Please let us know how things turn out with your surgery, you might very well require some chemo after your surgery, but lets not worry about that untill you come to it! I definitely will keep you in my prayers!

I wish you well w v. girl

White Beard
Posted 10/9/2009 3:38 PM (GMT 0)
 

   Dear WV.Girl,

 

     Good morning *hugg* My name is Dani. It is very nice to meet you. I am sorry I did not introduce myself sooner.. But!! I did want to stop by and say "hello!".

 

     I am so sorry that you have to endure through so much! *huggs* I do hope they can get you the MRI done soon. To have that added to all youve gone through .... *warm huggs* You have been in extreme pain for a very very long time. I sure hope they can begin aggresive treatment soon. I am sorry that I do not know anything of pain pumps.... Others are a wealth of knowladge and understanding in that area thou.

 

     It truly is very nice to meet you. Hope to hear from you again soon. In our hearts and prayers here. Stay strong!!

 

     *warmest huggs*

              dani

Posted 10/9/2009 3:57 PM (GMT 0)
Thank you so much Dani.This is wv.girl.I dont know too much about how to send replys and how to get around site.Where do you sighn in or log in.Thank you so much for gettin in touch.Hope you get better soon.
Posted 10/9/2009 7:41 PM (GMT 0)
wv.girl,
If you see your posts appearing, then you already are logged in. You wouldn't be able to post if you weren't.

I noticed you asked straydog (Susie) in her post to help you with this. Please remember she can't type that easily, so it's best so ask other moderators or the rest of us for now.

If you look at the top bar (in blue) you will see either words "log in" (which means you're NOT logged in), or "log off", which means you ARE logged in. The "help" menu also walks you through a lot of this, so click on that and read through. It's also good to read through the forum rules.

If you still have questions after doing that, just ask the rest of us. I'm not a computer whiz by any means, so if I can use this site, anyone can! LOL

Hope this helps a bit.

PaLady
Posted 10/10/2009 3:30 PM (GMT 0)
Vickie how much of an increase did the idiot give you and how much is your pump releasing per hour. Vickie remember my concentration dose of Dilaudid is 37.5 mg and I am receiving 8mg per hour. You are not getting hardly anything.

Please do this, call or go see your oncologist ASAP, explain the pain and how your dr will not increase your pain pump accordingly. Get your oncologist to either call your dr or ask him to find you a new dr. These pain pumps were designed for cancer patients initially so your oncologist can help you, please, please do this.
Posted 10/11/2009 12:25 AM (GMT 0)
Hi WV.girl:

I have had a pain pump for since 2004, and I am in the process of trying to find a new Pain Management doctor as the doctor I have been going to for 12 years has left me at the same dose for 3 years and refuses to budge despite knowing that my quality of life is next to nill.

I sincerely hope that you are able to get your doctor to work with you to get your pain under control.

One thing I just wanted to mention, you said in your first post that you are due to have an MRI next week. As far as I have been told, MRI's can not be done on someone with a pump. My understanding is that it will damage the pump. You can have a CT Scan, but not an MRI.

I hope that your surgery goes well, and that the cancer is contained to that one area. My thoughts and prayers will be with you.

Straydog/Susie has been incredibly helpful to me, educating me about how these pumps are supposed to be used, and how undereducated a lot of doctors are about them, so you are in great hands with her.

Lorie
Posted 10/11/2009 12:58 AM (GMT 0)
Hi WV girl and welcome to the Chronic Pain forum.

I am so sorry you are having such a miserable time getting proper help. You have received some great advice and lots of our 'world famous' friendship and compassion...some even call it *love*... blush smilewinkgrin And Straydog is great for her experience with a pain pump. We do have others with them too so I'm sure you will get more input. I am going to add the 'pain pump' words to your topic so others with them will notice it and come help.

PaLady is right about Straydog (Susie)...some days it's hard for her to type but others she does better. Don't tell her but I think she's such a sweetheart. wink One thing for all of us to remember is that none of us are doctors but we can and do offer whatever experiences we have... and in some ways that better than any doc can offer. Not knocking doctors since we'd be lost without them, but often they have not experienced what they are treating. Like Chronic Pain? idea How about male gynecologists???...lol

Below is a link to some help in using the forum. It can be confusing when you are first learning to use it. Also we have our Chat Night on Thursdays at 6 PM Pacific Time, 9 PM Eastern. I'll post a reminder with helps on how to get there and use the chat rooms on Thursday Mornings. Plus we'd love you to join our daily Koffee Klatch. You'll see some of them on the first page or too. It's a small part of our day when we concentrate on anything BUT pain. In fact the 'P' word is banned on that thread......turn We chat about fun memories, favorite foods, silly movies or sometimes YOU are the one who has to come up with the questions. Play on the days you like and if a question isn't your favorite then just read what others are posting. We certainly do deserve to remember that even though we live with pain 24/7 we are like everyone else...we need to laugh, forget about our problems for a while, have wonderful, caring friends, and for a short time be almost 'normal.

I will say prayers for you tonight that you receive some relief from your pain. Please do make sure to tell your pm doctor about the cancer and the lung problems. Most doctors are very good about prescribing proper doses of pain medications to cancer patients. I do hope he listens.

Warm hugs!
Chutz

https://www.healingwell.com/community/help.aspx
(you'll need to copy and paste this into the address bar on your browser) My browser (Firefox) won't make hyperlinks.
Posted 10/11/2009 10:08 PM (GMT 0)
Welcome WV girl, I'm so grateful that you found us.  These are the finest human beings on earth here and will always be here for you.

Dear girl, you have really been through the wringer and like someone said, you have a great attitude anyway.  Congrats on that, but when the bad days come, please come here and share with us.  We've all been there.

I'm very sorry for what you are going through.  As a former RN, I know that Dr's are held responsible by the AMA to keep their patients, especially cancer patients, comfortable.  You might want to mention that to your Dr.  if he is still dragging his feet. 

As for prayers, I am a prayerful woman and you are certainly going to be in my prayers.  God bless you and keep your chin up.

Lindaloo

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