Chronic Pain

Hi Mag1, it's Sheila again and I was reading one of your posts on this particular forum. I noticed that you are on Gabapentin 900 mgs. So was I and I wanted to let you know the side effects that I had to this medicine because I was on the same med and the same dosage. I was taking 300 mgs 3 times a day.
I had to quit taking that particular med and I decided to do so after I went on the internet and found out new information about it. Did you know that in patients who take this med, at a high level dosage like you are on, that it actually will have the same side effects as steroids? I was shocked when I heard this. And it also increases spinal pain. I had gained over 30 pounds while taking this(after I had been on it for a while)and I was super depressed and after I quit taking it, I noticed that some of the pain in my spine wasn't quite as severe. Check on this medicine. I sure am glad that I did. I was SOdepressed and even suicidal thoughts. It was just awful!!
I just wanted you to know that. And I hope that you got my post concerning the medicine that they put me on, short term for my pain. It actually did help with my pain. Like you, I got the pump because I am so sensitive to the side effects of the meds. And this was the only med that actually helped me. I did read about it on the internet and it says that it should only be used for acute pain, not chronic pain, but my Pain Management Doctor prescribed it to me anyhow. I have been so blessed to have doctors who actually would have bent over backwards to help me out. They all get a thumbs up from me. I am hoping that you can come across some doctors who are HONESTLY going to do whatever it takes to help you out.
Sheila

Sheila, this is Linda. I haven't posted for a while, but I would like to join you in your hope that all the negative posts do not discourage people from considering and/or trying the pump. Mine has given me a lot of my life back, and I feel badly for those who have found no relief. Most of us painiacs deal with depression as well as our physical problems. It is a depressing situation to face every new day when pain is all you can think of. My life was a rollercoaster ride of drugs, poor pain relief, visits to the Docs and little else for 6 years. I saw what few friends I have left when they came to visit, period. It wasn't much of a life for a person who had been a busy nurse on the Psyche unit, a woods person, a gardener, a wife, and caretaker for and lover of an animal menagerie. The most loved, my horses. I got so bad last year that I was unable to care for my horses, and my less than enthusiastic husband had to take over my chores. Life was very bleak, and I was having suicidal thoughts. I rarely went anywhere.
My pump was installed 03/08. I too awakened with no meds in the pump. I was hopping mad! My neurosurgeon (also Chief of Medicine at our Regional Med Center) is the one who made this decision and wrote the order. He told me he was taking no chances with drug interactions with the surgical drugs. I, too, had saline for 2 weeks. I was not happy either!!! But finally the day rolled around for the pump to be filled. After a few weeks of titration, and an extra, as needed, 2mg Dilaudid 2x/day. I would say my pain relief jumped down from 8/9 to a manageable 5/6. I was able to go a few places and start to do chores again and most importantly for my depression, I was able to ride again. Sometimes we, and our Docs,too, become so focused on the pain that we can forget to look for other complications. I ended up finding out that the artery to my worst leg was blocked for about 4 inches. After this was fixed with arterioplasty, my pain level is sometimes a 4/5. I am still using the pills and probably need to titrate up because I am gardening, riding, doing chores and visiting folks. I am busy again! I am on 1mg/day of Dilaudid intrathecally and 4 mg PRN a day. I went through 25-30 mg orally/ day.
I think and want to say to all that I am sorry it didn't work for you, but that does not mean that it won't work for others and is not worth considering. All of us have different problems, different chemistry and different Docs. Those are some big variables. Anyone in chronic pain should at least look at all possibilities and not just give up to the damn pain.
Bob, I thought I'd help you out a bit. The negatives are getting higher, again. We can never forget the power of positive thinking and good caring doctors, who do not look down on us for our disability. Sometimes we just can't reach those damn bootstraps to yank ourselves up without a little help be it medical, spiritual, or physical. Linda

Hi Yooper60,

Great post! Despite a few setbacks, many people like you and I are very happy with our pumps and they literally have changed our lives.

People who contemplate having the pump implanted should be aware of the possible problems but they should also know that it works just fine for the majority of people. Most of those who are satisfied will not post or read here so this thread has more reports of failures than successes.

Keep up the good work!
Aloha,
Bob

Hi Sheila,

Thanks for the good post and I'm glad that the information here was useful for you. I wasn't aware that doctors who are not qualified are doing the implant procedure. That's good information to know.

Aloha,
Bob

Hi Sheila,

Yes, the expensive drug I took before the pump was Avinza. There is another similar drug like it called Kadian. Both work by extending the medication's delivery into the body over a 24 hour period along with a slightly larger immediate dose when they are first taken.

This was the best medication I was given before the pump although, as expected, it caused constipation. Other than that, I would consider going back on it if the pump were to fail and I couldn't get it re-implanted. It is very expensive, however, and not covered by my drug plan.

Aloha,
Bob

Hi Bob,
My pump will be looking for a new home in 16 days(and counting the hours too) but don't expect they can be recycled!! Mine is only 9 months old. What a waste;if only I had been better prepared but you know Drs everywhere only tell you the good things none of the really bad ones.
I researched hundreds of sites and nowhere did I hear about the psychological problems attached to having this "thing" in ones body. It has affected me very badly and as I am allergic to even the mention of the word "narcotic" of absolutely no use whatever. They tried Baclofen for the muscle spasms and also Bupivacaine; no joy there either.
I'm pleased for all the folk who get even partial relief from their pain,but I do wonder where I go from here.
My Dr wants me to try the Spinal cord stimulator again but I don't know. I had a trial 3 years ago and didn't get any relief. Maybe after I have recovered from this trauma I'll do it but wonder how much the human psyche can stand before it collapses entirely. I sometimes get the feeling I will start to scream and never stop. Guess they'd lock me
up!!!
Has anyone out there tried this thing? Love to hear about it.
Mag1

Hi Linda, thanks for sharing, all of this has been so helpful for me. I know without a shadow of a doubt in my mind that when this pump is filled with the meds on the 21st, that I am going to be much better for it. I prayed and prayed for help, and I believe that God answered my prayers with this pump. I had said that I wouldn't go on and on about what all happened to me and about my diagnosises, but here it goes. Maybe some will understand why I was rendered hopeless, and then my prayers were answered!! I had a visit with a doctor who is now one of my doctors and I would count it a privilege and honor to call him friend.
In 1998, when I was only 29 years old, I was waitressing for a living, and I was one of the waitresses closing up for the night. I was 6 and a half months pregnant with my 9 year old daughter at the time. I always checked the floors to make sure that they were dry before I carried the "bus tub" of equipment from the Ice Cream machine, that I had to tear down and take back to our dishwashing area in the back to be washed up. Unfortunately, one night, a hose came apart leading from the area where the water is contained in the buffet bar, leading down to the drain that the water was supposed to drain down into. For some reason, merely an accident, it came apart and the water from the buffet bar ended up on the floor which was very slippery tile when wet. When I fell, both of my feet went completely out from under me and I fell right dowon on my butt,VERY HARDI had to go to the hospital because I did start contractions, but they got them stopped at the Hospital. Although the next morning when I stepped out of bed, I noticed a severe sharp pain that was in one of my toes, I can't remember which one now. From that day forward, I had pain every single day called radiculapathy ( I think I spelled it right). When I had my daughter there were some complications, she ended up being my "miracle baby". The cord was wrapped around her neck 5 times and they had to take her by c-section while they were trying to induce me in at the hospital. I told them that I thought something was wrong because I had been in the hospital for 3 days, and still my cervix hadn't softened and she hadn't come down any at all into the birthing canal. Well, I was right. I am so thankful that my daughter is alive and the "red-headed" little fireball that she is. I had nothing but pain even after I had her going from my lower back down my extremtities. But, back then, I was so stubborn about taking care of myself and I didn't think that I had the time to go to the doctor. Finally, I had no other choice but to go to the doctor, I was crawling around in my living room and I was unable to walk at all!! I went to a friend of mine that I graduated high school with who is a Chiropractor, and I had only gone to 2 visits and he told me that he believed that my problems were more severe than he could help me out with. So, I got an appointment with an MD and he ordered an MRI and wouldn't you know that I have herniations at multiple levels. And I was so blessed to have Workers Compensation to pay for everything that I needed. I thought that I may have had to have gotten an attorney, but the restaurant that I waitressed at, witnessed my fall and it helped me out that the General Manager was my cousin and knew that I never had back problems in the past and that I had nothing but problems(pain) in my back since this fall. I had a MD from then on out and he did prescribe me pain meds to help to eleviate my back pain. And in the beginning,they helped me(the pills), I was taking Lortab 7.5. And this doctor referred me to a good Neurosugeon my first back surgery that I had was in January of 2001, the surgery was 9 days before my daughters 2nd birthday. I was better after that surgery, but I still had pain, but pain that was bearable. But in May of 2005, while at work as an CNA(Certified Nursing Assistant), I was working on a unit where the patients were trachs and vents, this means that they needed help breathing and had tubes in their necks and were hooked up to a machine to help them breathe. One of my residents(patients) that I was responsible for, was diagnosed with dementia and alzheimers. Honestly, she didn't know what she was doing and when I went to check on her, she had pulled the tube out of her throat and she was crawling on the floor. Although I called for help on the phone in the hall, I didn't have time for anyone to come and help me pick her up, get her back into bed and put the "device" back into her throat so that she could have air. I know, I know, only a Respiratory Therapist is trained, qualified and according to the state, is the only one allowed to put these things back in. But earlier, the man who was the Supervisor of that unit showed me what to do just in case it happened and he was outside having a smoke. And I did place it back in her throat and if I wouldn't have done it when I did, she wouldn't have made it and trutst me when I tell you that she was dearly loved by her granddaughter and children. Some may have said she had no quality of life, I disagree with that.....she was loved. I didn't notice anything at all wrong with my back at first, but later on I coughed while I was standing up from a sitting position on my couch and the pain began so severe, that within 1 hour I was again crawling around my living room. I had another MRI and this time I blew a disc. I had to wait for surgery since I had no medical insurance, as a matter of fact, I had to go and sign up for welfare so that I could get the medical card to get the surgery that I needed. I ended up waiting over a year for the surgery. When I finally did get the surgery, my pain was only worse. And when I told that Neurosurgeon, he looked at me and said,"Oh well, it's just the way that you are!!". I am not proud of what I am about to write and I would appreciate no judgement being passed upon me because God knows that I have beat myself up over this emotionally time and time again. 9 weeks after that back surgery, I took my husbands soft top convertible and ran it down over a hill which the state trooper said was more like a cliff, I rolled 30 feet, and it ended up on its roof (the top was up) and a boy that was in front of me saw me go off the road and take out a couple of tree tops. He came back and by the time he had gotten there, the car was on its roof in a river. The boy kicked a window in and drug me out or I would have drowned. The EMT's that showed up believed that I had broken my back and they ordered a helicopter to fly me to UPMC Presbyterian and thank God that they did. Because then I got hooked up with good doctors who honestly do care. And I did fracture my spine along with my tail bone, along with head trauma and of course, fractured ribs. Unfortunately, I didn't want to live, at least not like I was living. And it seems to me that when I rendered myself hopeless, a greater power than myself stepped in and stepped up and proved to me that there was and is hope. The Neurosurgeon that I have now is awesome and he honestly cares. My Medtronics Rep honestly cares. Before this pump, my neurosurgeon honestly did try to correct my spine with surgery. The surgery that he performed on my was nearly 8 hours long. He did Microdysectomies at various levels, Lamonectomies at various levels, He did a technique that moved the very lower part of my spine over to where is should have been, he also performed fusions and he placed a cage. And I was cured of the radiculapothy that was running into my legs so severe that I could barely walk. Not only did I have nerve root impingement, but my spine was off and my nerves were literally being pulled over, in a sense, to the left side. But there was no surgery in the world to correct the severe chronic pain in my back. But he did what he could with blessing me with the Intrathecal Narcotic Pump and it is such a blessing, or at least the Trail Phase was. And I know that if there are any complications, that I have a doctor who genuinely cares about my well being and I also have a Medtronics Rep who cares as well.
I understand that some people have very negative experiences with the pump, but to me, nothing can be so negative as life being robbed of quality, nothing can be so negative as me not being there when my son intercepts a pass and scores "one for the team".(My son is only 16 years old and loves to play football) Nothing can be more negative to me than for me not to have an open mind, completely and totally focused on my little girls problem that she is dealing with. She deserves my undivided, uninterrupted attention and that is so hard for me in severe pain, not to mention that the potent meds are hard for me to tolerate because of the side effects.
Maybe I have had a few little complications so far, but it's alright. It is much better than having no hope at all. And I know that I know that I know,etc....that this is going to be succesful for me to experience quality of life again.
You're right Linda, sometimes it is hard to reach or to even grab those bootstraps and literally yank them, but when we gain the power to do that, we have gained the power to no longer be rendered helpless, with a somewhat of "victim"(best way for me to describe it) mentality.
I believe with all of my heart that with this procedure that there must be mental and emotional stability. I believe this to be true of chronic pain period. If I wouldn't have had emotional, mental, and spiritual strength, then anything at all that they could have done for me wouldn't have been a success.
AND PLEASE DON'T EVERYONE GET MAD AT ME OUT THERE!! I am not saying this is the case for everyone, these are issues that I had to overcome personally, I only speak from my own experiences, that's all. I speak for no one else but myself, I judge no one.
Giving up to pain for me has been the same as giving over my life and anything good about it.
Take Care everyone
Sheila

Hi, all!

Yes...don't be discouraged by looking at the posts that complain about something not right - it's the ones who don't get what they expect that yell the loudest

I have the medtronic morphine pump, and with the last tweak - 8 mg/24 hours of morphine with no boluses at this time, it seems to be doing great! I think I could have a few more tweaks made, but I'm n ot sure - maybe go to 8.5 mg or 8.7 mg. I'm SO close to what I decided to expect from the pump - and that was NOT 100% relief, but relieve that was tolerable enough that breakthroughs could work. Well, I had a script written for breathrough in April '08, and I went to get it refilled today and found it had expired! It's written for 4 tabs/day, and quantity is 120. I have 4 left. This means that I almost lietally used 1-2/day or less! I did find out though if I don't take the breathrough when I get sore, it'll get worse fast...before pump, I had to stop every 5 feet to let my back pain ease up, o had to sit down - I had pain down both legs that would literally slam me to the floor if I didn't sit down fast enough. Now, I can stand for an hour or so doing dishes, etc. at the sink or cleaning, etc.

With that, and a rolling walker (talked PT into it last hospital stay) I've been able to do a lot more than before - like concerts, hoedowns, was at our capitol for lobby day - things I'd NOT been able to do without pain control1

Hi,
Am totally new here and this is first post in this discussion.
I am on my 2nd Medtronic infusion pump. The first was too large, did not work properly and eas very painful. It did a great deal of damage to my muscles and organs inside due to the tethers breaking. I got a second, a pediatric one, and the sysmptoms are worse after 5 mths. It is bulging out, have huge lump, like a fatty mass on top of it, u can actually grab the entire pump w your hand and pull it. Worst is I am constantly falling asleep even tho I am still at a 10 pain scale and eat oral meds, sleep 2 hrs., a night, cannot wal;k due to nerve damage.
Now this week I find out not only the one I have in me that I have been complaing about for months that something is wrong, was recalled by the FDA in March, so was the first one I had that made me miserable!!!! Today I cannot stay awake for anything, yet I am a 10 in pain,, I don't know wxactly wht to do, called the fda and they said all surgeons and pain manag. dr.'s were informed by letter in 3/4/'08 to contact their patients, well no one ever contacted me, and I have done nothing but go downhill for months. I am so depressed and disgusted I don't know if I should contact a lawyer first or get the pump out first! Is there anyone else with a recalled one, if so what r u going to do about it? Would love to hear from someone.
rezbeader

quote:

I am so depressed and disgusted I don't know if I should contact a lawyer first or get the pump out first! Is there anyone else with a recalled one, if so what r u going to do about it? Would love to hear from someone.
rezbeader

First thing I'd do is to contact the doc that put the unit in...and let him know what's happening, and ask why you didn't get notified or why he didn't, if he didn't (the surgeon). After that...that will depend upon the reply from the surgeon who put the device in what you do next.

Hello,
I know what you are going through right about now. I've had a bad failure of my pump (one that was on the recall list)but in my case it was the catheter that failed. I had a pool of morphine the size of a hockey puck when it was found with a ct scan. I am having mine removed. I am at this point 2.74mg/daily and am really feeling the pain. I had a spinal fusion in 2000. Now, the disc's above and below are going bad. If you once decide to do the removal, be sure you have a program set up before you begin. I personally think some day there will be a class action suit against Medtronics as they knew about the problem years ago and only notified the physicians to observe their patients closely. How are they going to do that? They are all so busy making money, they do not have time to do any personal touches. I'm sorry I sound so bitter. It my doctors that have do it to me in so many ways. God bless and try to keep good thoughts.
Bob O

[QUOTE]Originally posted by Gina:
Hi, all!

Yes...don't be discouraged by looking at the posts that complain about something not right - it's the ones who don't get what they expect that yell the loudest


I had my pump implanted 6/2007. Although things are not perfect, it allowed me to get out of a wheelchair. I think that people, myself included, need to look back before complaining. I sometimes forget how bad it was and how good my good days now can be. I still have doctors tell me "there is nothing we can do for you" and then I think "WHAT WOULD I DO WITHOUT THE PUMP!" People, stop, and look around at the people who have had it for a while. Most are just asking if others are going through things too. There is nowhere else to go to ask these questions. It may not be a complaint as much as it is just reaching out to someone. We all need to talk to someone who knows what it is like to have chronic pain. God bless you all and thank you all for being there for me.
cjs

Hi CJS,

As the one who started this thread, I appreciate your post. i,too, had problems (several catheter slippages) but once the problems were straightened out, the pump worked fine and I'm no longer suffering night and day from chronic lower back pain.

None of us should expect to ever be totally free of pain but the pump will result in considerable improvement for many, especially the freedom from having to take as much oral narcotic analgesics with their annoying side-effects such as constipation.

The pump is certainly not a cure-all especially for people with problems beyond just chronic spinal pain that's can't be cured by surgery or other treatments. It's designed to be used for specific purposes and the trial prior to implantation should indicate what can be expected.

There are many possible reasons for subsequent problems such as with the catheter, ineffective medications, infections (granuloma), etc. Such things can occur with surgery and other forms of treatment as well.

Aloha,
Bob