Chronic Pain

Hi Patrick,

Best wishes for a successful trial!

As for noises and appearance as a result of the pump implant, it's really nothing to be concerned about. Your pain relief may be so astounding that even if you did look different and your body was playing loud music like an ipod with a speaker, you'll still be happier because your pain will be under control!

Funny thing about chronic pain (really not so funny): At times when I was really hurting, people would sometimes remark, "You look so good!" primarily because I'm trim and appear younger than my actual age. Little did they know that I was in serious pain but I didn't want them feeling sorry for me or, worse yet, not believing me so I usually didn't discuss my pain problems.

Pain is not something visible to others unless we act ill or behave differently. When we're feeling lousy and people compliment our appearance, it's difficult to resist telling them what's we're really feeling like but it's best to keep it to ourselves, in my opinion.

Another thing that sometimes happens is when you tell people you are taking pain medication or have a pump placing morphine in your spine for chronic pain. I've heard remarks like, "Oh, lucky you. You must be up in the clouds all the time!" and other comments like that.

They fail to understand that those of us with chronic pain take these medications for pain relief and not to feel high. While some of us may experience euphoria if we accidentally overdose, this is rare and we still must suffer from the unpleasant side effects from these drugs such as constipation and fatigue.

Once our chronic pain is under control, even if only partially so, we will feel as great as we may look so when people make complimentary remarks, they should be appreciated. It's not necessary to go into details about how the pain is controlled other than to explain that the implanted pump is placing a tiny fraction of a pain-controlling medication directly into the spinal cord to eliminate the need for taking oral medicines at much higher doses. If they still think you're in "drug heaven", they're not worth discussing it with as they'll never comprehend.

I think I've ranted enough on this issue

Bob

quote:

Originally posted by Nikki:
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?

Hello Nikki! Yes, I have experience with a different med. I have Fenanyl in my pump and have had it for about 7 yrs. While it doesn't cover all my pain, it works better for me than morphine (which I did try.)

If you have any other questions, please feel free to write again.

Bobbie

Hi Shiela,

As I mentioned previously, I'm not a physician and have had no formal medical training so your question is in an area in which I'm not qualified to respond.

I know that a high pain level can certainly raise one's blood pressure but I can't imagine why your doctor won't try to control that until your pain is properly managed. In fact, I think that both problems should be treated simultaneously but there must be a reason what this isn't being considered.

I don't know if temporary bouts of high blood pressure is a danger to one's health but, of course, if it's consistent over a period of time, it can be harmful. Once your pain level is reduced, the blood pressure should normalize.

I'm sorry I can't be more helpful in this matter.

Aloha,
Bob

Hi Nikki,

My pain clinic does not provide the external device that allows the patient to make the pump provide a temporary boost of medication (called a bolus). The head doctor says it takes at least 24 hours for a boost to take effect and those who think they are getting immediate results are doing so because it's a placebo effect.

From a physical standpoint, I can agree with this because the pump is producing a tiny amount of medication and the small "boost" would take a lot of time to travel through the feeder catheter, up the spinal catheter and into the spine.

On the other hand, some have posted that the think really works so unless and until I can get one for myself, I cant comment constructively.

Aloha,
Bob

Hi Chet,

In response to your question, I was taking 90 Mg. of Avinza per day. This is an extended release version of morphine. It worked fairly well but was very expensive. I was using this drug just before the pump was implanted after trying various other oral medications and patches with all of their miserable side effects which the pump eliminated.

Bob

Hi Bob,
It's Sheila and I just got out of the hospital. I actually had to drop my PCP, I was nearly in a Stroke, my blood pressure was 216/138 so I dropped them and I am now under the care of the physician that my Neurosurgeon sent to check on me after the pump was removed. He is a very good doctor, and he could not believe that my PCP before would not address this issue. He said that when someone is in severe, severe pain, like myself, that if the pain isn't brought under control and the blood pressure simultaneously that this is what happens. I had to be put in the hospital and they put me on 2 seperate high blood pressure medicines and they also gave me the PCA Pump (.5 mg of Dilaudid every 10 minutes), until my blood pressure and pain both got under control. They all said at the hospital that it is a miracle that I am still alive with such a high blood pressure for nearly 3 weeks.
Pain literally could have killed me Bob and I had no idea that a person could end up in this kind of shape.
They increased my meds, which needed to happen. I just HATE to think of the withdrawal that I will have to endure after I get the pump again. I mentioned this to the pain doctor that came to see me in the hospital and he told me not to be concerned with that because they would titrate me down, even after I had the pump again.
Thanks for the reply Bob and take care
God Bless
Sheila

Thanks Nikki, I switched PCP's and ended up in the hospital on 2 different high blood pressure medicines and also the PCA Pump, until my pain was under control. They dosed me up on meds and also sent me home with the 2 high blood pressure pills.
Take Care and God Bless,
Sheila

quote:

Originally posted by Nikki:
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.

Hi Sheila,

Glad to hear that things are finally under control for you. I also couldn't imagine why they allowed you to suffer from pain and high blood pressure for so long without some kind of treatment.

I know you may be concerned about withdrawal from oral meds. prior to placing the pump but, as your doctor said, they can slowly wean you off the oral meds. until the pump takes over.

Frankly, I don't recall having any withdrawal between the time I was using oral morphine and the pump was first implanted. I also don't remember if I gradually reduced the oral dose but, in any case, there must not have been any withdrawal problems or I would have recalled it. It sounds like your doctor understands the situation and will take steps to avoid it.

Best wishes,
Bob

Hi Bob,
I honestly hope that what happened with me will be of some help for someone else. When I first made it to the ER, they kept "pushing" liquid, potent, high blood pressure medicine into my IV and my blood pressure wouldn't budge. They finally gave me the Dilaudid and it came down a little at a time. I hope that people out there with such severe pain will realize that their blood pressure can be affected horribly due to severe pain. They say that high blood pressure is the silent killer, and I do believe them now. I only hope that anyone who stumbles across this and reads it realizes that they shouldn't hesitate to tell their doctor concerning severe pain, out of fear that they will appear as a "pain med seeker", the high blood pressure goes along with the pain, and it can get as critical as mine was. Severe pain CAN kill someone and those who suffer so horribly and needlessly as I have, needs to realize that they could be running a high blood pressure and end up like me or worse.
Thanks Bob for all of your help.
God Bless,
Sheila

I have another question (sorry if this is a repeat):

When switching to the intrathecal pain pump with a fentanyl drip from fentanyl pain patches, is there any chance I will feel fentanyl withdraw? Here's my reasoning: I'm on 175mcg/hr Duragesic (Fentanyl) patches, plus 6 15mg oxycontin per day. I know that the pain pump is supposed to use like 1/300th the amount of medicine as I would need orally or through the skin. Because it's so much less medicine and it's no longer coursing through my body but rather just going to the brain and spinal cord, is there a chance my body will suffer withdraw?

One reason I ask is because I swear I felt something like withdraw on the second morning of my pain pump trial, about 16 hours after they removed my patches and turned the pump on. It was very uncomfortable but there was still no pain in my lower back (where the pain normally is). The trial was 100% successful but I'm very scared of the prospect of withdraw. Does anybody know anything about this?

My doctor said that since the pump medicine is going straight to the spine/brain there shouldn't be any withdraw. Is that true? Or does the REST of your body which is suddenly deprived of fentanyl normally coursing through it suffer effects of withdraw? Any input or help would be greatly appreciated.

Hi RJ,

I was taking 90 Mg. of extended release morphine (Avinza) prior to the pump implant and I don't recall any withdrawal symptoms (although I'm fully aware of what they're like because I had some subsequent catheter failures).

Your pain management physician should gradually reduce the dose of any oral or patch medications as the pump is adjusted to manage the pain. It's true that the pump does produce the equivalent of 1/300 the amount of oral or patch medication because the latter must be inefficiently metabolized by the body and the pump puts it directly in the spinal cord where the nerve bundle is located.

The fact that you noticed a mild amount of discomfort from possible withdrawal problems during the trisl, you may have a similar response when the pump is first substituted for the oral meds. and patches. However, this should be very temporary and can be mitigated by not reducing the oral meds. and patches too much before the pump takes over completely.

The pump is usually adjusted for the minimal amount of medication that's calculated to be required when it's first implanted and then it's gradually increased in 10% increments until optimal pain control is achieved.

But until the oral meds. and patches are completely eliminated, you cannot know how much medication the pump needs to infuse to provide pain relief by itself.

Bob

Thanks for the input. I find it very helpful.

You mentioned catheter failures. Is that a common occurrence? I assume it's when the catheter comes loose and isn't putting drug into the intrathecal space anymore. How do you survive when that happens, especially if it's a weekend and the doc's office is closed?

Hi RJ,

I had two catheter failures where the catheter slipped out of the spinal cord. It's not a common occurrence. This resulted in withdrawal symptoms which were quite unpleasant.

Both the initial surgery and first revision was performed by the anesthesiologist but the second revision was done by a neurosurgeon who placed the catheter at a higher level than normal (T6-7) rather than in the lumbar region. He may also have used surgical glue and other means to keep the spinal part of the catheter better supported at the entrance point. There is no way to anchor the part of the catheter that's in the spinal cord itself.

I've had no problems since but I'm also careful not to do a lot of strenuous reaching and other activities that could put strain in the back area.

There's not much you can do when the doctor's office is closed. Also, the revision requires out-patient surgery so that has to be scheduled in a hospital. During the interim, one has to take oral medications to mitigate the withdrawal symptoms although they can't be completely eliminated. I recall that each withdrawal incident only lasted for a day but, of course, the pain also returns to further compound the misery.

Bob

My trial is January 2010(insurance reasons), anyone here who is skinny (I've lost 35 pounds in last 3 years),weigh 170 and 6'4 1/2 and they are still not sure where they would put the pump since my ribs, hipbone, etc are in the way. Any very slim people here w/the pump?

PS just read Bob's post about how much pain he was in and friends who know him/you, do know you/he have some type of spine problem, but they think you look great and think there is nothing wrong with you when in fact you are in terrible pain. Remember the movie about "I see dead people", every day of my life I look at people and "I see healthy people", yet they think I'm obviously perfectly healthy too.