PAIN PUMP (2008)

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Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 8/25/2008 2:55 AM (GMT -7)   
Many of you know that I have Chronic Pain. My doctor wants me
to get a Medtronic Pain Pump. I am soooo afraid to get it.
I am currently in about as much pain as I can tolerate. My
fear is that the process of having the Pain Pump sewed in
my belly is going to cause more pain. I don't feel like I can
take MORE pain. I really don't.
Pamela Neckpain

There seems to be a problem with the first Pain Pump
thread so I've started a new thread after discussion with
others.

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 8/27/2008 7:46 PM (GMT -7)   

Hi Everyone,

I know I haven't been around for awhile but that was because I was actually living my life pain-free for the first time in oh so many years. Yet here I am. Back again and back in pain. Something happened to my wonderful life giving pain pump and it stopped working last thurs. I made it through the pain til my appt I already had schedualed with my PC Dr. I called and told them what was going on and lucky for me I always make sure I have back-up meds to handle any thing that arises before I can get to the dr.

I went today and after checking my pump she said it was working so the problem had to be somewhere else between it and my spine. She was very helpful and is schedualing a dye test to see where all the dilaudid is going. She raised all my medications to handle my pain issues and something for the withdrawal symptoms I will and have been going through. I love my pump and I am so scared. When I came back here and actually saw 2 threads for pain pumps I was thrilled. Next I was really bummed. It is impossible to read as I'm sure everyone else knows. Someone mentioned a site devoted to pain pumps and I would really like to know what that is. If anyone knows of it would they please write it here for all to see? It would be deeply appreciated by my-self and I'm sure a lot of other people.

It's been awhile since I've said hi to all of you good people but it was strange when I was feeling no pain I was a little scared to "jinx" it, I know it sounds juvenile but I look forward to catching up with you all again. I'd also like to thank Pamela kneckpain for restarting this thread I hope others will contribute, thanks. I'm not feeling my best at the moment but I will read and catch up with what's going on asap. I pray all of you have been well or are on your way there and me too.

Toritoo

Pamela the pump doesn't hurt in your abdomen it does make it hard to find clothes that fit. It doesn't hurt to have it filled either although it looks and sounds like it would. It took quite awhile to get my pain pump to the point where I could wake up and not have my first thoughts be of pain meds. When it did begin to work correctly it was amazing! My pain was gone. I forgot to take pain meds! I always had left over meds at the end of the day. And more important I went out and visited my daughter at her house. I went to my sisters house. I didn't pay for it later. There was no later. It was heavenly.

So goodnight to all and you Pamela thank you again.

Toritoo

Post Edited (Toritoo) : 8/27/2008 8:49:25 PM (GMT-6)


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/27/2008 7:58 PM (GMT -7)   
Oh, Toritoo! cry I am SO sorry to hear this news! I was so pleased that you had been getting such great relief from your pump.

Well, surely they will find the problem, right? If it worked before it must be able to work again! idea I will pray and pray and pray that it will be so! What a blessing that your doctor is taking good care of you while they figure things out.

Let us know how it goes!

Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/27/2008 10:08 PM (GMT -7)   
Toritoo,
I want to echo Ry's thoughts. I'm so sorry that your pump stopped working, and I hope it's something that can be fixed. Is it one of the pumps that was under the recall? Others have mentioned I think some Medtronics pumps being recalled, but I don't know more details. The only thing I know about the pumps is what I read here.

Please let me know how it goes for you.

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 8/27/2008 10:49 PM (GMT -7)   
Torito:
I really can't imagine not having pain. Well, maybe I can just a bit. When I first
get out of the pool, I can walk freely, good, and happy. After a couple of hours
the pain comes back.
I am very sorry that your pump is not currently working. Your good doctor will
probably get it going. Just in case he doesn't, do you have a big teaching hospital
around. I live in California and there are two big places. (I haven't had any luck
there but maybe it was the way I approached the problem. Long story)
Maybe more people will come our way on the forum with knowledge of the pain
pump. Maybe we could pass out calorie free coconut cake, Margueritas that do not
mess with pain meds, and an entire new fall wardrobe. Anything! Ohhhh Torito!

Welcome aboard brothers and sisters!

Pamela Neckpain has hopes of meeting the Wizard of Pain Pumps (and others, of
course : ) )

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 8/27/2008 10:52 PM (GMT -7)   
I'm thinking of contacting Oprah about this situation. I think medical science is
close to finding help for Chronic Intractible Pain. All I'd do is write a letter
and send it by snail mail. She probably gets so much e-mail that a post could
disappear.
pn

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 8/27/2008 10:54 PM (GMT -7)   
After all that I mispelled your name! It's Toritoo.
scuse please. : )

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 8/27/2008 11:14 PM (GMT -7)   

Hey Pamela,

Just curious as to why you think Oprah is the answer?  Granted, she has more money than she knows what to do with, and she does have access to very important people.  What do you think she can do regarding pain-pumps or chronic pain?

The last time I went to my pain management clinic, I inquired about the possibility of getting a pain pump for my chronic back pain.  The doctor actually "poo-poo'd" the idea of using a pump, making is sound that they were minimally effective and quite problematic.  I read between the lines and realized that, once again, the doctors are steering away from any treatment that includes narcotic pain medication. 

One day, I'd really like to sock one of these doctors in the head.

Leigh Ann smhair


Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ, stomach problems 
  • Divorced, 43, spawn-free 
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(ten molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab/Percocet, Trazadone, Buspar, Protonix, Tramadol, Visteryl, Carafate Suspension, Co-Q10, B2(Riboflavin), Remifemin(Black Cohosh)
  • PROHIBITED FROM ALL NSAIDS
  • Current Problem: Mysterious Internal GI Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 8/28/2008 2:02 AM (GMT -7)   
Leigh Ann,
I don't really know who to turn to. Oprah is so well known and has a staff that
could research Chronic Intractible Pain. If more plain people were aware of the
problems we suffer it might get us closer to an answer. Just think of breast cancer -
all the walk-a-thons and all else that raises the public awareness. People do not
have to suffer so terribly. (If they are good girls and get their Mamograms, etc)
For us, there is nothing. We have a kind of invisible disease.
I went to one pain clinic. The doctors there believed in Accupuncture, Psychology,
bio-feed back, and a taste of opiods on the tongue. I asked the doctor there what
he thought about Pain Pumps. He cautioned me against them - said that they caused
infection. (He did not do pain pumps)
I moved from that town and went to another doctor. Right away he wanted to
implant a pain pump. I do need a better quality of life but I don't know how
he knew quite so soon.
Doctors who implant pain pumps make a lot of money with return visits after the
surgery, etc.
From what I have heard, pain pumps use very little opiods. What is used in
the pump goes directly to the source of pain and doesn't have to go through the
liver or kidneys.
I don't know anything. It's hard for me to research because of pain and a bad
computer.
Oprah has some good and helpful shows. She has enough junk and fun stuff to
keep people interested. I think she needs to do a show on us!

grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 8/28/2008 4:44 PM (GMT -7)   
Torito, I know how you feel about your pump, and how you feel now that it 'betrayed' you. I had the pump put in in February of '08, and love it! No, my pain isn't 100% gone, and it was never promised to be 100% gone, but it's about 60% gone and with breakthrough pain meds (1-2/day), I'm good! I'm on 9 mg morphine/day (24 hour period) This is at least one thing I don't have to worry about - with my lung problems, and so on.

Gina-MI

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 8/29/2008 6:21 PM (GMT -7)   
Gina -
When you say you are on 9 mg of Morphine a day with the Pain Pump, do
you mean that's how much is in the pump or the amount you swallow.

What is your lung problem? I've often worried about getting the flu or
pneumonia. How do the doctors handle your pain? You really can't take
Opiods because it makes breathing too difficult.

Pamela-CA

grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 9/4/2008 8:43 PM (GMT -7)   
Pam,

The pain pump dispenses 9 mg of morphine in a 24-hour period - right INTO the spinal column, bypassing systemics - not to the brain, etc. I take dilaudid for breakthrough - 1-2 tabs/day (4-8 mg) depending upon what I'm doing that day, and how much activity (example: I spent a couple hours shopping at Meijer yesterday -I took 2 dilaudid - 1 in a.m. and 1 in p.m.

That's why the pump is wonderful for someone with lung problem - it doesn't affect your breathing - not only is the total amount dispensed rather minute, but it doesn't go into your body - just into the spinal column where the nerves that control the pain you're in are!

The jury's out on my lung problem - it was diagnosed as COPD over the last couple years, until my new pulmonary function test was done - which now shows severe restrictive disease - suspects include idiopathic pulmonary fibrosis, etc. Or...some other kind of fibrosis. A lung transplant is likely in the cards.

hope this helps, Pam!

Gina

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 9/4/2008 8:45 PM (GMT -7)   
eyes  Hiya All and my deepest apologies for not posting again after my initial post. My Laptop has been off line since the day after I posted. shocked So I was going through and still am going through withdrawals for the Dilaudid as well as my laptop, it's been a very difficult time.
So this is just to say I'm back and I would like to talk a little bit more about the pain pump and the invisible disease, chronic pain. Someone else said that but, well I will talk again tomorrow but just wanted to thank everyone for their blessings and kindness here - quickly. I'm off to bed. With everything still good tomorrow I will read all the emails and write again, for who ever
is interested.
Thanks again,
toritoo  smurf

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/4/2008 8:59 PM (GMT -7)   
Hi, Toritoo!
Yes, we're definitely interested in hearing from you!! yeah Missed you. Sad to hear of your struggles with meds and computer, but glad you're back with us.

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 9/5/2008 1:02 AM (GMT -7)   
Gina,
Yes, your post helped me in decision making. I've heard a lot both way, but
yours I understood so well because I'm afraid of breathing problems or surgery.
(I take Methadone) We'll see what happens.

I wish you the best with a lung transplant. I don't know much about it but it sounds
like something for the brave.

Does "wishing" someone the best help? It sounds weak. Gina, it isn't.
Pamela Neckpain
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome,.Prolapsed Bowel and Bladder, Attention Deficity Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety,


Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 9/11/2008 11:16 AM (GMT -7)   
shocked  Hi All,
Just checking in and saying hey and letting you in on my pain pump odyssea. I had the test yesterday. The pump and the catheters and everything else are working fine. Once again one of those moments you don't know whether to be relieved or scared. You know?
If there isn't anything wrong with the pump then what caused this sudden spike of pain and all the, what we thought were withdrawal sickness symptoms saying? So off I went over to my PC Dr. and we talked. They had given me a bolus at the hospital so the pain wasn't too bad. But I was really sensitive in one specific area in my spine. Well long story short now we are going to see if the infection that had brought about this whole back situation, Osteomyelitis, was back. It is a very bad infection and it eats away at your bones from the inside out. The main symptom is excruciating pain with fever, nausea and general feelings of malaise as well. I need a blood test now with a SED rate to see if that is what is going on. So at this point I guess I am just basically numb inside my head. Don't know what to think how to feel, beside scared and I'm so tired of scared.
I hope everyone else is doing better than I am at this point if not I feel for you as always. Take care all and I will try and be around and get caught up with all of my fellow sufferers. Saw something about a beach party. I didn't feel well enough to read it all but I hope you all had as good a time as it sounded. Wish I could have been there?
Take care all,
 
toritoo

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 9/12/2008 12:33 AM (GMT -7)   

Toritoo, I do hope they figure out very quickly if the osteomylitis is back and can get you on a treatment regime. Thats really a terrible, terrible thing to have on top of everything else. What caused yours initially if you don't mind me asking? I do hope you can keep the WD at the minimum.

So glad to hear that your pump is fine and no problems going on with it. I am with you on the pain pump, its given me a great of my life back, considering where I was at before getting it. I will tell you something, when I first relized it had a handle on my pain, I was actually afraid to tell anyone because I was afraid I would jinx myself. I know where you are coming from there.,lol. But it is nice to have freedom again and be able to go visit like one of your kids, be able to leave the house other than for a drs appt. I rarely take BT meds and find when the pain hits its 99% plain ole muscle spasms going on, so I take my muscle relaxer and get relief that way. I find my Dilaudid does very little for the pain.

My pump is one of the lots thats been recalled for gear problems. However, my pump is operating fine, not every pump is defective either. My dr & I agree that it would really be of no big benefit to have my pump removed and a new one put in, since there is nothing wrong with mine. At each refill I have the exact amt of meds left in my pump that I should have. This is measured and noted in my chart. If a person was to have either too much or too little medicine left in the pump, then you know the pump is not working properly.

There is a new lady on here that is doing the trial right now for the pump. It will be interesting to see how it went for her. I remember it being wonderful, no awful pain.  

Someone on here commented about the ambassadors for Medtronic pumps. That program is Medtronic patients that have had success in getting their lives back after having the pump implanted. It is a voluntary thing no one is pressured into becoming an ambassador. In fact on Medtronics site, it has an area where it asks if a patient would like to be an ambassador. For many years Jerry Lewis was one because of his success with the pump. But, there again, the pump is not for everyone.

I sure hope we see a post from you soon saying you are feeling better again Toritoo. Take care. Hugs, Susie



Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 9/12/2008 11:08 AM (GMT -7)   
eyes  Hi Susie,
I'm so glad that I am not alone with my problems and it is so nice to see a familiar name as well. Boy go away for a few months and come back to a slew of new fellow sufferers. sad I've seen a few of the others like Palady and Ryand but wondering about Gramps, did something happen while I was gone? I hope he's okay. Anywhoo I am also glad that you have gotten relief from your pain pump as well. Isn't it great? As for me well everything was going so well for almost 3 months and then BAM I'm back in the land of pain. So depressing. Oh well enough venting. I am waiting for my dr. to call about blood work and then we'll see where we go from there. Hopefully they catch it early this time (if it is the osteomyelitis) and before it proceeds to eat away at what ever bone and discs I have left.
Well I'm off for now but thanks again for writing back to me and caring it means a lot to me. I wish you and the rest of the old gang all the best and I will post again to let you know where I stand and what's happening. Have a good day Susie and everyone else old and new, I look forward to getting to know all of the new members although it is sad that they have to be here in the first place.
Hugs to you too,
toritoo cool
 
Oh yea I forgot to answer your question about how I got it in the first place and no I don't mind telling. I was in the hospital with bronchitis and fell, hit my head, had a grand mal seizure, coded, died, brought back and was in a coma for 3 days. During that time I was intubated and that caused the bronchitis to turn into pneumonia which in turn changed into the osteomyelitis. It took 6 months for them to diagnose it and by that time it had eaten away the base of my spine and discs L4,L5, S1 etc. They went in and repaired it with bone grafts and hardware and gave me a recovery period of 16 to 18 months with 2 months of IV antibiotics and a very uncomfortable brace to wear. It was hell, sorry but there is no other word that covers it. (When they finally gave me an MRI it was just dumb luck that an ortho surgeon just happened to see my films and said whoever these belongs to needs to be called now and brought in for surgery right away so I guess I was lucky in that respect.) Also I am very lucky to be a patient at one of the better teaching hospitals in California, Loma Linda University Medical Center. OK now I guess I'm done. Hope I didn't bore you with some of the sad tale that has become my life since this all started. Oh one more thing, it took them 6 months to finally find out what was wrong during which I lost 65lbs and suffered unbearable pain. That Susie is my sad story. sad

Post Edited (Toritoo) : 9/12/2008 12:29:50 PM (GMT-6)


Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 9/12/2008 11:44 AM (GMT -7)   
Sorry to all the rest of you from before like Gina and Pamela Neckpain and anyone else I've forgotten. Memory loss from too many meds is my only excuse but I just wanted to make sure I didn't offend anyone. So sorry to anyone else I might of forgotten and good luck and best wishes to all of you new and old.
toritoo

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/12/2008 4:21 PM (GMT -7)   
Hi, Toritoo and everyone,
I've not been posting as much the past few days or so. Exhausted. Lots on my plate. And lots in my attic - Ry understands! LOL

Too tired to think or write at the moment, but wanted to say hi - glad to see you.

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 9/13/2008 3:05 AM (GMT -7)   
Toritoo, oh one thing I see I wanted to mention earlier and forgot. If this osteomylitis does not not pan out, Oh I hope it does not. Please, please talk to your pain mgt about the possibility of a granuloma on the tip of your catheter. You know these infections can pop up on the tips and its caused by the medication in our pumps. Just a thought I felt I needed to pass on to you. Hugs, Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 9/13/2008 6:28 AM (GMT -7)   
Hey Pam, when the surgery takes place for the pump keep in mind surgical pain is a different type of pain from our normal daily CP. Yes, there are several different types of pain. Surgical pain is temporary and you know it will go away. They now put the pumps in higher up on the side of your stomach so to not interfere with clothing that is not elastic all the way around. I wear my tops loose anyway and no one can tell I have a pump. I can wear anything with a zipper and buttons or all eleastic. I would not consider the pump unless I had my head on right about. It took me a couple of months to mull it over, I talked to my orthopedic dr too. By the time I had my decision I felt good about it and I had realistic expectations. Everything else had bombed for me so I knew imy heart this was going to work for me. Susie


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 9/13/2008 1:32 PM (GMT -7)   
Toritoo:
What a story you have. Oh, I hope you feel better.
My first doctor was trained at Loma Linda. I do think that it's the best
place in California. (I could tell you the names of some places up north
in CA that are not good at all -- but they are supposed to have an
excellent reputation.
We're glad to have you around. Stay well.
Pamela smurf

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 9/14/2008 4:37 PM (GMT -7)   

    wink   Hey Pamela, Susie and Palady

 I guess I should just say hey all. It's nice to be back among you all but I hate the reason. It's just sad. Pamela about the connectors, they Xrayed them and I am having blood work the first of next week. So thanks for the looking out for me. turn I hope everyone else is doing better, although better than what I don't know.

So good night to all and hope for a pain free or less day to you to.

Hugs, toritoo


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 9/17/2008 11:12 PM (GMT -7)   

My Goodness,

I did'nt realize so many people had the pain punps in. I know there was alot of chat about them and so forth but I guess i dont Check in enough, because It seems like everyone has went out and has had the procedures.

I just want to say I wish the best of luck for all of you who have them, and the people who are trying to get thiers adjusted. I commend all of you who have had the courage to do so,I so deeply hope you can actually live a pain free life...........

I Hope Everyone Has A Pain Free Life!!!!!!!!!!!!!

                                      Kind Regards

                                                Mike

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