Chronic Pain

Hi to everyone,

I've been looking in on this site for sometime now and wish to tell you briefly my experience of the morphine pump. I had it implanted in 2003, it gave me a new life, I had been using a wheelchair for 15 years, now I could walk. Great, fantastic, a new leaf of life, I put up with the sweating and the breakthrough pain, and the invasion of 4inches of titanium in my right side. From time to time I went into severe muscular skeletal spasm, the dosage was increased, then decreased and so on.
In 2006 the dosage was increased it transpired I lost 8 months memory, I was crawling around on all fours. The dosage was halved from 8.5mg to 4.5mg. So, I persisted, up and down, it could not be MORPHINE doing this.
Yes it did, I had the morphine taken out and saline put in, the withdrawal was horrific, but I did it. Back on oral meds, not good enough.
Morphine back in the pump at the lowest level the pump can work at 1,75mg and withing 4 days I was like a twisted piece of metal on the floor, I could not stand, one foot in front of the other and I was on the ground.
5 weeks ago I had the pump switched off, within a couple of hours I could stand and walk and can still do so. Withdrawal yet again.
I know MORPHINE is gold to the Medical Profession, but it's not for everyone, I have proven that. Luckily I kept my own notes over the last 5 years, I knew I had problems, but I was so desperate to be well I overlooked an awful lot, chronic pain can make fools of us all. I've had ups and downs with the morphine, including neuropathetic thigh pain, for which I had 2 rhyzotomies, they didn't work, I now believe morphine to be the cause.
In a week or two, I'll be getting the pump out, don't know what I'll do then, but that's for another day.
Perhaps my story may be of help to others on this site, by the way it now appears (in my case)that I'm very sensitive to morphine or any similar opiates and believe me I've tried them all.
I've had chronic pain for 30 years and I'm now 60. I wish you all well.

Rossman

Hi Rossman,

As the originator of this forum subject and frequent poster, I am so sorry to hear of your terrible experience with the pump or, probably more correctly, the morphine that is typically used.

I am fortunate that my pump is still successfully controlling my chronic lower back pain due to messed up joints but I did have some catheter failures in the past so I can well sympathize with you about the awful withdrawal symptoms when the medication was stopped.

My question is, did your physician ever try several other narcotic medications in the pump that are sometimes used in place of morphine? I gather from your comments that you are allergic to all morphine-like drugs and maybe, narcotics in general so this would not be a viable alternative but I was just curious if you've tried anything else?

Like you, I have other problems like a recent knee joint replacement that developed an infection in the incision. As a result, I've been ordered to stay off the leg for almost a month while taking large doses of antibiotics to avoid having revision surgery. Fortunately, the new joint works fine and I don't have pain when I stand or walk anymore but the infection specialist wants to be sure the infection isn't forced inside to the bones or the prosthesis itself. Then the pump doctor told me such infections can even spread to the pump which was rather horrifying news to hear!

So I'm hanging in there watching TV and reading all day until I'm cleared to go back to physical therapy because the joint is stiff and sometimes painful. The pump has no effect on the knee joint pain, of course.

You are a lot younger than I (just turned 77) and I feel badly that you are having so many problems with extreme suffering. I hope you will find solutions to your problems and that some relief can be realized soon.

Individually, many of us think our problems are bad until we learn what others are experiencing so your post will help those of us with fewer adversities to realize how fortunate we are.

Please accept my personal wishes for rapid and successful improvements in your condition. I know others who post here will feel the same way.

Aloha,
Bob

Hi Survivorman,

I earlier posted several comments on catheter failures of which I had two before a neurosurgeon finally did the surgery and the catheter has held in place ever since.

The spinal catheter is inserted into the enough sub-achronoid space within the spinal cord up to level T10-11. Unfortunately, there is no way to provide additional support to the catheter that's inside the spinal cord. The spinal catheter cannot be too thick because it has to be flexible to move with the spine and could otherwise break.

My last revision used a slightly thicker catheter and it was inserted higher to the T6-7 level which provides more internal support. I assume surgical glue was used at the entrance point but I don't know for sure.

Regardless of your desire to continue your current physical activities, the patient manual that accompanies the pump warns not to do a lot of severe bending and stretching. That didn't stop me which resulted in the two failures and the accompanying narcotic drug withdrawal symptoms which are extremely unpleasant.

I suggest that you discuss with your surgeon the possibility of inserting the spinal catheter at a higher level than normally done but I think you need to also consider cutting back on strenuous activities which can place a strain on the catheter and result in slippage. I learned the hard way.

I hope your pump implant goes well and that it will relieve your chronic pain. Mine works fine now and I no longer worry about catheter slippage.

Aloha,
Bob

Hi everyone, I have been through a few things since I had my pump implanted in March. I have Dilaudid in my pump now and have edema (swelling) in my feet and calves, plus some shortness of breath. This is attributable to Dilaudid and was a surprise to me as I had less trouble with it orally. I saw your mention of some other drugs that can be used, Bob, and am wondering what the names of those meds are that can be used in the pump. Morphine is on my allergy list. My current dose of Dilaudid is 0.9mg per day, with too much breakthrough pain, which leaves me in a quandary. Raising the dose may worsen the edema (now being handled by a diuretic, Lasix). Thanks for all you do, Bob. My pain level is frequently at a level 5 or 6, as opposed to 8 or 9 even with meds, before I had my pump. Thanks and may we all have a less painful day today. Linda

Dear Bob,

Thank you for your very kind reply, I hurt my lower back in 1971 when I was 25 years old, it was 11 years before I had a laminectomy, instead of pressure on a nerve, the gel like
substance had oozed out and had hardened and crystalised on ligaments. I gather the ligaments had to be severed and the offending disc removed.

Thus the operation was not successful, that was in 1982, 3 years later I was in a wheelchair. From then on I was on all sorts of analgesics, it is only now I realise any sort of opiods put me into muscular spasm. As you know the lifetime of the medtronic pump is 5 years, it would have to be changed this year, so I decided to see now, before I have another put in, if I can get by without one.

Over the last 5 years, when I was having problems, I had to do a round trip of 80 miles and this I found to be exhausting. I now feel if I'm on oral meds, I can take them/or not if they do not agree with me. I'm in control instead of the trip down the road for 10mins while the handheld computer increases the dosage or decreases my dosage and I wait a few more days to see if it works or not. Plus as I'm getting older I don't like the idea of having surgery every 5 years.

Well Bob, so far I'm doing OK, not great, but I'm not in spasm, I'm on Solpadol and Lyrica, I need to get in touch with my Consultant to get the pump out, then he will sort me out on oral meds. I continue to live in hope, as all of us who suffer chronic pain do.

Slan,
Rosman

Hi Yooper,

Dilaudid was one of the drugs I saw mentioned in the pump manual but I would suggest discussing it with your physician. I don't recall the name of the other analgesics mentioned and there may be some newer ones since the manual was published.

Best wishes,
Bob

Hi Rosman,

I, too, had a laminectomy but it was in my neck and involved three joints so they did the surgery from the rear instead the front as they normally do when only one or two joints are involved. It was a most painful surgery and took a long time to heal but it did eliminate my neck pain. Most of the cartilage in my neck joints are worn but it really doesn't bother me anymore.

My lower back problems are the result of worn or missing cartilage in the lumbar area and a joint that is self-fusing. Surgery was not recommended and the pump is controlling the pain at a relatively small dose of morphine (4 mg./day).

I know the pump must be replaced every six years but I don't think they replace the catheters if they are still working OK. Replacing the pump itself is an out-patient procedure here and relatively simple as the pocket for holding the old pump is already present. It should be quite fast.

I did not do well on oral meds before the pump although they did control the pain. I was taking Avinza (a form of slow-release morphine) that's very expensive and worked OK except for the constipation. A similar drug is called Kadian. Avinza is taken once a day and provides an immediate initial dose of morphine followed by a well controlled, timed release for the rest of the day. I think Kadian works the same way.

I've had some bad experiences with other narcotic analgesics including patches that were recalled because of manufacturing problems which resulted in most unpleasant withdrawal symptoms.

The pump was the last resort and it's been a godsend for me especially that I'm now facing some other medical problems such as a recent knee joint replacement surgery that developed an infection in the incision. There's not much pain involved but if the infection spreads to the bone or prosthesis inside, the surgery must be redone so I'm forced to remain off the leg and take lots of antibiotics until the infection is cured. I think I'm making some progress but it's taking a very long time and I hate physical inactivity.

I'm 77 so joint problems are common at this age and I know it's hereditary because my dad had it and now my oldest daughter, whose in her late 40s, is having neck and knee problems. She's at the age when my problems started but I hope she can get it controlled before it becomes debilitating.

Keep us informed on how things are going for you. We can all learn from others' experiences.

Aloha,
Bob

Bob, Rosman, Linda,

Can you provide an overview of the experience that you've seen with the intrathecal pump compared to oral narcotics.

Specifically, how did the touching sensation change? Any other sensory changes, such as taste or smell? How about the perception of cloth or fabric?

Did your ability to orgasm, and ejaculate, change? I see the age of the group, but I want to throw it out there. Was it a consideration? I'm trying to get ejaculation back since the increase in oral pain medication again.

I'm moving from the world of "oral narcotics" to "infused narcotics", and I'm trying to understand what to expect.

Thank you for your help.

Hi Nicolai,

"Can you provide an overview of the experience that you've seen with the intrathecal pump compared to oral narcotics."

Reply by Bob: The main benefit I relaized from the pump is a drastic reduction in the dosage of oral narcotics required to obain the same level of chronic pain control. The pump can drop the dose to 1/200th of the oral dosage because the medication is being applied directly to the area in the spine where the pain originates whereas oral analgesics must be metabolized by the body. This greatly reduces or completely eliminates the side effects of the medications such as constipation, fatigue and other problems.

"Specifically, how did the touching sensation change? Any other sensory changes, such as taste or smell? How about the perception of cloth or fabric?"

Reply: I did not notice any change in the items you mention above. I may not fully understand the question, however.

"Did your ability to orgasm, and ejaculate, change? I see the age of the group, but I want to throw it out there. Was it a consideration? I'm trying to get ejaculation back since the increase in oral pain medication again."

Reply: I did find that orgasm became very difficult and there was no ejaculation discharge which I thought was due to the oral medications but the problem didn't improve after the pump was implanted. It would seem that it's quite possible as the analgesic affects the nervous system which plays a large part in sexual function.

However, a recent blood test indicated that my testosterone level was very low compared to the normal range even after the pump was implanted for over a year so I attributed the problem to something other than the analgesic medication. I suggest that before assuming that your oral medication is causing sexual problems, you have a blood test. If your testosterone is low, it can be easily corrected using patches, injections or oral medication. I take my own weekly shots and they work very well so far as orgasm and ejaculation is concerned. I'm 77 so that's a natural reduction in testosterone levels in older men but it should still be within the low or normal range. You didn't mention your age but that's a consideration.

I'm moving from the world of "oral narcotics" to "infused narcotics", and I'm trying to understand what to expect.

Reply: Assuming that the in-hospital test which simulates the pump provides pain relief, you should greatly benefit from the pump.

Keep us informed of your situation and feel free to ask any questions which concern you.

Bob I also am on my third cath comming out of my spinal cord. any idea why this is happening. Also did your Dr take this as an emergency or ok well get anactual neurosurgeon to fix it when he feels like it.

Max,

My pain doctor is an anesthesiologist and not a regular surgeon so after my third catheter failure, and going through that miserable withdrawal again, he got a neurosurgeon to do the catheter revision.

He raised the level in the spinal cord from the normal T10-11 to T-6-7 to provide more support. He also used a slightly thicker catheter and probably used some surgical glue at the point where the catheter enters the spinal cord. So far, it's held but I'm also more careful about doing things like big stretches and other stresses on the body to keep it from happening again. Your Medtronics Patient Manual lists some things you should watch for to prevent catheter problems on page 14.

I want to begin by saying that I am thrilled to find a message board with so much information.
My boyfriend has spinal surgery a year and a half ago and has been in pain ever since. He is currently taking two pain pills a day and they are no where near enough. Being his is in his mid 20s doctors are hesitant to up his pain meds. He has tried medications like lyricia that help but pain meds are still required. Nerve blocks again help, but oral pain meds are needed. He does not wish to take meds for the rest of his life especially if he is only allotted two a day.

Because of his pain we are not always able to go out like 25 year olds do. The trade off is stay out later=be in pain because meds wore off. Its no way to live. He is not able to exercise because the next day he pain level will be higher (due to lack of exercise).

His new pain doctor suggested either a spine stimulator (down fall is he could not get a MRI if he ever needed one) or the morphine pump. I have read up on it a little but I am unable to find out about long term effect on the body (being he’s in his mid 20s he’ll most likely have this for a very long time). I am concerned for his liver and kidneys in particular. Also I am wondering if he will be able to drink with the pump. I know it sounds like a silly question but relevant due to his age.
Also he was expressing the concern of weather the pump would be visible. My last question is will he be able to have an active normal life like most men in their 20s again?
I hope someone can help me with my concerns.
Thanks for you time.
-salena

quote:

Originally posted by salena:
I want to begin by saying that I am thrilled to find a message board with so much information.
My boyfriend has spinal surgery a year and a half ago and has been in pain ever since. He is currently taking two pain pills a day and they are no where near enough. Being his is in his mid 20s doctors are hesitant to up his pain meds. He has tried medications like lyricia that help but pain meds are still required. Nerve blocks again help, but oral pain meds are needed. He does not wish to take meds for the rest of his life especially if he is only allotted two a day.

Because of his pain we are not always able to go out like 25 year olds do. The trade off is stay out later=be in pain because meds wore off. Its no way to live. He is not able to exercise because the next day he pain level will be higher (due to lack of exercise).

His new pain doctor suggested either a spine stimulator (down fall is he could not get a MRI if he ever needed one) or the morphine pump. I have read up on it a little but I am unable to find out about long term effect on the body (being he’s in his mid 20s he’ll most likely have this for a very long time). I am concerned for his liver and kidneys in particular. Also I am wondering if he will be able to drink with the pump. I know it sounds like a silly question but relevant due to his age.
Also he was expressing the concern of weather the pump would be visible. My last question is will he be able to have an active normal life like most men in their 20s again?
I hope someone can help me with my concerns.
Thanks for you time.
-salena

Hi Salena,

I have several comments about your concerns. Please know that I'm not a physician or have formal medical training but I've gone through a similar situation as your friend except I was in my 60s when I started to have major chronic pain. I also had surgery which cleared up one problem but the joints in my lower spine began to self-fuse and I was told that surgery was not a viable solution so I began to take oral medications which helped but they caused unpleasant side effects. And, yes, I needed to keep increasing the dosage to get consistent relief from the pain.

The oral opioid analgesics are what cause problems at increased dosages and that's why the implanted morphine pump is the answer for many chronic pain sufferers. The pump puts the medication (usually morphine sulphate) directly into the spinal cord and helps control the pain at a fraction of the dose that would be taken orally to achieve the same level of relief. This is because the body has to metabolize oral narcotics so it requires a much higher dosage.

This means that the side effects from the opioid medication is greatly reduced or totally eliminated by the pump. I've been prescribed all kinds of medications over the years before the pump was implanted and none were as effective and most caused major side effects.

As for your specific questions, the spinal stimulator is an electrical device similar to a TENS unit that produces what amounts to an electrical shock which masks the pain. However, I'm surprised the pain doctor is even considering that for the spinal problems you describe. Most of the stimulators are used for leg pain and not specifically back pain.

As for having an MRI, this is not a problem with the implanted pump so that should not be of concern as compared to the stimulator. The pump is implanted in the abdominal area and, unless the person is very thin, it will not normally be visible. I'm quite thin myself and it can barely be seen but I can feel it there because it's the larger size that holds more medication which results in less frequent refills. In any case, if it's visible at all, it's worth the sacrifice for the pain relief it provides so I wouldn't use that as a reason to not have one.

If you follow the other posts in this thread, you will see that there's an in-hospital test to determine if the pump will be effective before it's permanently implanted. The implant itself is usually an out-patient procedure under general anesthesia.

Some pain doctors will provide a small control device that the patient can use to cause a controlled temporary increase in medication for "break-through" pain. Unfortunately, my doctor doesn't supply this so I have to take oral medication occasionally for break-through pain.

I suggest that you look at the Medtronic web site for more information (http://www.medtronic.com/neuro/ttp/treatment_pump.html) or post additional questions here.

Bob

Bob went to my neuro yesterday he was going to put the catheter back in tomorrow. But he may have to do more lumbar surgery because my left leg pain is still there. Not as bad but I still cant bare weight on it. so he wants another MRI. Just how long can this catheter just laying in my body pumping highly concentrated morphine into my body. Do you have a contact at Medtronics who could tell me it has already been out at least one month. thanks for your support....

Hi,

Every time I tried to contact Medtronics with a question like yours, they would refer me to my doctor. They are very hesitant to respond to questions from patients.

I'm not sure I understand your post regarding how long the new catheter has been in and working with the pump. Is it providing any relief for your back pain? The pump can remain implanted up to 6 years after which the battery will wear out and the pump needs to be replaced. By then, they may have an improved model with more features and reliability.

Your refill schedule will depend on the concentration of the medicine. They can fill it with a higher concentration and then reduce the amount being placed in the spinal cord which will lengthen time time between refills. There are a number of options all of which a dependent on what your doctor wants to do.

If I'm not fully understanding your question, please post again.

Bob