Chronic Pain

Hi Bob,
I guess that I should have asked me question differently. When I wrote that I didn't understand the amount of time that I was going to have to wait to have it done, I was meaning that I didn't understand why I had to wait a year before my Neurosurgeon would implant another pump. It has me pretty bummed out, really it does. When there was no longer any medicine in my spine from the pump, I literally screamed in pain. When he took the pump out, he had to make two incisions, one in the belly and one in my back and when he was taking the catheter out, I lost some spinal fluid and then I guess I lost all of the medicine (Dilaudid) or the greater majority of it, in the surgery. I honestly miss my pump. I hope that I'm not beginning to sink into a deep depression AGAIN, like I was did when I didn't have the pump. Bob, I had honestly forgotten just how bad my pain was before the pump. They do have me medicated, this medication works better than the expensive Avinza did. But this mediciine, my insurance didn't cover either, and 60 tablets cost me $433.99. I switched insurance companies and my next prescription will be covered. It is a new drug. It is Oxymorphone. It is an extended release of diluadid. I am also on 2 5mg OxyIR every 4 hours and Soma every 6 hours. At first, I felt sooo doped up, but now I am gaining a tolerance.
A whole year is a long time for me to have to wait for the next implant. I called Medtronics and their representative said that their rule is that the doctor has to wait 3-4 months after the pump was taken out due to infection at the pump site.
Well, take care Bob, I am going to try and do some things this weekend to lift myself up. I honestly don't think it's any good for my kids to see me so depressed. My son is 17, soon to be 18 and my little girl is only 10 and it hurts her the worst.
Take Care and God Bless,
Sheila

Hi Sheila,

Sorry I misunderstood your question but I would agree with your doctor about waiting to be sure there is no infection following removal of your initial pump. A year seems a bit long but maybe he's being extra cautious.

Before I had the pump implanted, I also took Avinza and it was the best oral medication for me but it sure was expensive even with a drug insurance plan that covered a little of it.

I've also used some of the medications you mention with moderate success. All oral medicines seem to have some undesirable side effects and for me, the pump has none.

Take care,
Bob

tina i myself have some of the problems you do my pumps been in for almost 7 yrs and if i hit it on a corner it really hurts also i have trouble sleeping mine will be replaced with the bigger one in the next coming year.im a 7.2 mg daily and 500 bacofin in it.also i take percocet for breakthru which helps sometimes.im new here so id love to meet people and blog and chat privately about our daily struggles.right now im going thru them finding a blood clot in my lung scariest thing for me.i thought it was anxiety and when i got to th er my hr was 188 i really thought i was gonna die.had a great doc thou.but its along recovery and now i have pneumonia.ill be on coumidin for the rest of my life.hope im not boring you.ill close for now please write back .tlivyy

Bob - when your pump wasn't working properly, you stated you were given 5mg Oxycodene, one every 6 hrs. Was your pump working 50% or ?? when taking oral meds? I plan on the trial in January (new year-deductible/co insur reasons)here in N.Dak. Now taking a 10mg methadone at noon, a 5mg methadone at 4pm and a 15mg oxycodone twice a day, and still spending almost entire day in bed as being horizontal with a fair amount of pain. Will try the trial cuz fighting this constipation for 3 years,eating crappy high fiber foods for years, doing nothing,etc, has been tough and my mind has suffered more than a little from these drugs. Swore I would never have the pump only because of what I read here, but some posts offer encouragement. ps fused L3-S twice (1st unsuccessfully and hardware removed both times)and C4-7 successfully. Cervical fusion was a piece of cake, except for that neck brace. To all: there is a horribly painful recovery period after a L3-S1 fusion. Its a 7 or 8 hour surgery in which you wake up in recovery praying someone would put a bullet in you. Then you are like me, often much much worse off than before the first fusion. Large incision in back, large incision in abdomen, and also incision in hip where they take bone from.

Hi Chet,

I have to assume that when I was having problems with the pump system a few months ago, it was still providing some medication because I didn't go through withdrawal as I did in the past when the catheter slipped out of the spinal cord. This, of course, resulted in no medication being infused into the spinal cord.

The cause of the problem was never determined and everything has been working fine since then. I don't take oral medications as the pump system is handling pain control adequately. I can only assume that there was a kink in the feeder catheter that caused a temporary reduction in the medication reaching the spinal cord.

It's too bad you have to wait so long for the trial and must continue to suffer from pain and the side effects of the oral medications. I can sympathize with you as I was in that situation before I had the pump implanted. Despite a few setbacks, it's been a Godsend for me.

Much of my current pain problems are just due to age (I'm 78) where muscle and joint aches are common. I don't have that nagging chronic pain that, like you, kept me down most of the time. That, along with the constipation, made life quite unpleasant. I was fortunate that most of my worst problems occurred after I retired from full-time work so it wasn't a financial burden. The medical costs are being covered by Medicare and a supplemental insurance plan that was provide as part of my retirement benefits.

I certainly hope that your trial is successful and that you will benefit from the pump as so many of us have.

Aloha,
Bob

Can any of you tell me what approximately, was the oral medication intake you were on prior to deciding on the pain pump. I can be fairly comfortable in bed on 15 mg of methadone and 30mg of oxycodone daily, but still a lot of pain, depression, anger, laxitives and very little body movement. This amount of meds is almost double from 18 mths ago.

This is my first post to the forum. However, I have been reading this thread quite a lot of interest. I was scheduled to have my trial study for a intrathecal pain pump yesterday. Unfortunately, the doctors office screwed up and did not get approval for the pump to be rented for the trial study. What bothered me was they waited until 5 pm the night before the procedure to call me and let me know. I was getting all excited about the possibility of being pain free and now I have to wait. The doctor only does trial studies on Tuesdays. That way I can have the pump installed externally for 3 days and be able to interact with the office and him on a weekday. It makes sense to me.

A little background on myself. I had a L5/S1 fusion a little over 2 years ago. I had a staph infection and fortunately I healed from that. The pain levels after the infection never went down. There is nothing more to do surgically and now they have recommended this. I am 45 years old and I want to get away from all the pain meds and the side effects.

This has been one of the best places that I have found for information of people that live with this device. I have a few questions that maybe someone could answer.

Is the pump loud ? Can you hear it pumping the meds? If I am wearing a t shirt will there be a noticeable bulge where the pump is implanted ? After having the pump installed, how much does it change your life ? Obviously, I am hoping my pain will be reduced. How active can my life be after having it installed? I used to play tennis 4 times a week before things went downhill. I can't imagine being able to do that again. I am afraid to ask the doctor that question. LOL Will I be able to exercise ? Swimming, Walking, Golf, etc. ....How much can I expect to do?

I understand that I will be limited after surgery so scar tissue and healing is able to be accomplished. After that what can I expect ? I guess what I am afraid of is my life going to be one limitation after another. My wife and I were talking about the future and daydreaming about taking kids and grandchildren to Walt Disney World. (This is way in the future since the kids are in college and are not dating,lol) This conversation started me thinking about if I have the pump can I go on a roller coaster anymore ? I know I am disabled but is this going to make me even more disabled. Does this make sense ?

Sorry about the rambling......Just nervous I guess.

Thanks for any advice you might have.

Hi Bob,
I hope that you are doing well. I know that I have asked you so many questions, and here comes another one.
First I will tell you what has happened to me. Due to severe pain, my blood pressure was running so very high, I am only 40 and ended up with chest pain and had to be sent by ambulance, also they had to put Nitroglycerin under my tongue twice on the way to the hospital and then I was admitted to the ICU. And they ran many tests on me, and they say that this is all pain related. They kept giving me an IV medicine to lower my blood pressure, but it wouldn't last long at all and then my blood pressure would shoot up to 205/146 in no time at all. My pain is just horrible without my pump. My pump doctor is going to do an over ride on my meds because I was honest with him and told him that I have had to take more than usual so they have to fill out a form for my insurance company and then for the DEA so that it doesn't look bad on me, because I did take more than I was directed.
Here is my question, they refuse to put me on high blood pressure medicine because all of this stems from my pain. But Bob, I don't think that there is any med out there that is going to control my pain because when I had my pump I did so well that I believe that I lost the pain tolerance that I had before the pump. Is this typical for people with severe pain? I mean such critical high blood pressure? And if so, don't doctors put these people on high blood pressure medicine.
I am suffering horribly Bob, I really am. I had no idea that pain could ultimately put a person's life in jeopardy due to pain because of such high blood pressure.
Until I get the pump, wouldn't you think that they would put me on high blood pressure medicine? I have 2 wonderful kids, 1 is 10 and the other 17, I have a husband that loves me very much and I also have my family who love me. If I died, they would all be traumatized and I hate to admit this, I am scared that this will kill me if they don't get me on the high blood pressure medicine.
I hope that you can answer my questions. Again Bob, thanks for all that you do for all of us.
God Bless,
Sheila

I have read alot about the pain pump with morphine in it. Does anyone have any experience with any other meds put in their pump?

I have been treated like a drug seeker for a long time. I'm told it is because of the state I live in, (Minnesota). I am finally getting the referral rolling for the pain pump, but, I am afraid to ask for the palm pilot controller. I dont want to give them the wrong idea. It seems I can do that just by saying pain. Anyone got anything they could tell me?

Sheila hang in there. If you are that scared then if it were me, I would tell them you want the blood pressure medicine and that you are scared. Just a thought.

Patrick - Your doctor should have the Medtronics VCR/DVD tape of a young man who had the pump installed, also shows the bulge you will have under clothing, especially if you are slim. Of course the Medtronics recording is all positive as expected.... If you are 85% pain free and taking for example 5mg methadone 2x a day, or maybe 15mg extended release oxycodone 2x a day, or another drug in that range and amount, and are reasonale comfortable, you should stay with the oral meds. If you are double those amounts or worse, go for the trial. Activity will be reduced to very little as if you read all 38 pages of these posts, the catheter from the pump to the spine seems to unhook itself often as well as other problems from to much activity. Golf -no no no. Tennis no no no. Running no no no. I plan on the trial in January 2010 (co-insurance/deductible reasons). Others here should give you real-life experience. Lots of negativity here due to only the desperate post here. Has to be lots of great outcomes or they wouldn't be offering the surgery. Just wish we could see them.

Chet,

Thanks for the response. I am well about the drug limits you have outlined. This is the primary reason for the trial study. That and the side effects. I have never gotten the DVD from Medtronics. In fact, I never got any literature at all. So, I am in the dark.

I am going to go check medtronics website about the video. I believe there is a lot of truth that the people who it works for a living there lives but the people who have problems post.

Love to hear some success stories and what is really like with the pump vs. a video.

Thanks,
Patrick

Hi Patrick,

I will try to answer some of your questions.

Fist, the pump is completely silent unless it has a problem or the battery gets low after 5-6 years atr which time it will produce a low level beep. The doctor can command the pump to beep so you will be aware of it if it occurs. I could hardly hear it myself.

If you are thin with little belly fat like me, the pump may protrude somewhat but I don't find it particularly uncomfortable or noticeable from an aesthetic standpoint. If you position your belt properly, it won't show up at all under a shirt.

If the trial is successful and the pump is implanted, it will change your life dramatically after it's adjusted to infuse the proper dose. This can take some time and a few visits to your physician.

As for physical activity limitations, any over-stretching or other extremely taxing activities may have to be limited. I don't think this would include golf (which I don't play) or running, swimming and other aerobic exercises that you are accustomed to participate in add should continue. My pump catheter slippage failures did occur after I over-extended myself but it may also have been the result of a less than effective surgery performed by my anesthesiologist with the method he used to insert the catheter into the spinal cord. The final revision was performed by a neurosurgeon and its held ever since. It also helps if your body (unlike mine) forms good scar tissue in the the surgical area around the spine where the catheter is inserted.

There is really nothing to be particularly nervous about as the implant procedure is relatively simple and is generally performed on an out-patient basis.

As for roller coasters and other rides that place a lot of pressure on parts of the body, I would recommend avoiding these and similar activities.

Please feel free to post more questions and concerns that I and others can respond to.

Bob

Bob,

Thanks for the response to my questions. I will know tomorrow if I get to have the trial on Tuesday. I was so bummed out when it got postponed on Monday.

Chet made a good point about no one posting the great stories but the bad ones. I am glad you are there to post the real information good and bad. Tonight was a good reminder of why I want to reduce the drugs I am taking. I am no wear like Michael Jackson but hearing the reports of him having drug issues and dying from it reminds me of how dangerous the pain meds can be.

I have had 3 surgeries now and numerous shots and I keep hoping to wake up without pain. So, I am trying to not get too excited or have huge expectations. I do not mean to be superficial about looks and such. I am very shy about my pain issues and don't want to attract too much attention is why I asked about the noises and looks.

Thanks again for the information. Hopefully, I will able to post about it next week!