Chronic Pain

[QUOTE]Originally posted by mag1:
This is for Dena in response to 10/26/09 I believe.
Thanks for your thoughts. I found the trial extremely painful in the first instance and also I get enough electric shocks in my feet when I walk anyway.
Isuffer from CRPS/RSD of 5 years duration. I'm allergic to almost anything you can name which is why I had to have the pump removed. I agree, why did he do it? Poor guy, I think he was at wit's end as to what to do next for me,and I know he did have a couple of folk who got good relief(they were using Ziconotide). I also had that eventually to no avail and VERY expensive too although I did eventually get insurance to pay!! Remarkable.
I'm currently seing a new neurologist and I'll get his thoughts when he is done with all the tests. Most of those are extremely painful too as sitting and lying down cause me MAJOR pain. It's usually not too bad walking, except for the numbness making feeling the ground difficult.
Thanks for your thoughts. Fingers crossed. Maybe I'll find another Pain Management doc.

Mag1[/QUOTE
Please keep us posted- I would like to know what testing the neuro doc is doing- I have never heard of ZICONITIDE-
Wish you the best and of course a solution to your pain situation0

Hi All,

For some time I've encuntered a curious situation that I have not mentioned before nor have I seen any posts concerning it.

The place where the catheter enters the spinal cord has developed what's called a "seroma" which is similar to a "hemotoma" in appearance. It's been there for over year now. The result is a hard lump about 1-inch in diameter and about 1/2 inch high that is quite solid. If pressure is applied, such as when lying down on my back, the seroma will flatten out. If I stand or sit without back support for a long time, it will reappear and increase in size to a certain point.

The seroma is not painful and the doctor doesn't seem concerned. I'm sure it's caused by spinal fluid leakage (as opposed to blood leakage which would be called a "hemotoma"). The amount of spinal fluid collected in the seroma is not sufficient to cause a headache or other problems so I just try to ignore it.

Has anyone else experienced a seroma in the area where the catheter enters the spinal cord?

DENA- I have been reading all of the back or previous posts- I had no idea a doc could ad specific meds to address specific chronic pain symptoms= Baclofin for muscle spasms, clonidine for nerve pain and off course the narcotic-
your doctor sounds very good!
Thanks for sharing your experience

Thank you Bob and Nan-
your experience and knowledge is valuble to me especially since the pump is such a new treatment to me.
I did have a trial. An injection of morphene directly into the spine- and I had tremendous relief- but I was told the dosage given at the trial is much higher than what is administered in the pump. I have also experienced very little sciatic pain when the pump was first implanted and I was on the 100 strength fentanyl patch.
Do you think I need a higher dose of morphene? or a combination of meds in my pump?
I know I should ask my doc but I am not getting anywhere with him-
I am so confused now

Hi Claire,

Yes, different medications and combinations of medications can be used in the pump and many pain clinics regularly do this; however, your doctor may have medical reasons not to do so in your particular case.

My understanding is that the pump is less effective for sciatic pain which is generally treated using an electronic stimulator but I have had no direct experience with this. The fentanyl patch probably handled your sciatic pain before the pump was implanted and I assume you are no longer using the patch.

Won't your doctor periodically increase your morphine dosage in the pump (usually 10% at a time) to see if it satisfactorily reduces your pain level? Unless you are already at a high dose, there should be no hesitation to do this unless, again, you particular situation differs from the average patient.

I know that some of these pain doctors can be difficult to deal with because this particular specialty is a very difficult one. He or she has to rely on each patient's description of pain levels and how effectively their treatment is reducing it accordingly. Patients' responses differ considerably especially those who may have medication addiction problems or psychological issues.

I would try to be very calm, polite and objective during such discussions. If your doctor doesn't appear to believe you or becomes belligerent, I would try to find someone else.

Bob

hi- Every one want to ask- I have so much muscle pain since the doc lowered my patch strength- They hurt just about everywhere-arms, thighs calves back all over ect
What would cause that?

Bob:
My ex pain doc told me that about 5 weeks ago. At the time he was still my doc(for some unknown reason he is no longer touching anyone with medicare as primary, this will be my situation as of 12.1.09 thus i have to see new doc for fill) he stated that is why even though he knows i can handle and probably need more they go up in such small increments in the beginning to insure the joints don't disengage and the catheter stays in place. this is according to him the first 2 months or so. I just had catheter replaced on 9.10.09. and had to have old one left in.

Hi Claire,

In contrast to the pump, which would affect only certain parts of the body, the patch is similar to oral opioid medications which can affect pain levels in all parts of the body. The pump would have little or no effect on a shoulder pain, for example. but the patch is more like a general anesthetic that will cause a reduction in pain in many parts of the body.

Because the pump is designed to place opioid medication in the spinal cord, it will only affect the nerves that travel from the brain through the spinal cord to areas such as the back. Other nerves don't take that route so they can only be affected by metabolized medications such as those taken orally or via patches.

Apparently, your chronic pain is originating from several sources so reducing the patche's strength may result in an increase in pain levels from these sources.

Please note that this opinion is from a non-physician with no formal medical training so I suggest you discuss this with your pain doctor or an anesthesiologist.

Bob, When I was talking to my doctor about the up and coming implant of the pump, he mentioned that it will be a long slow process to build up to where my actual medication amount will be helpful and really taking care of the pain.

This is because, it is very important that the medication is released in very small increments over quite a period of time because...if NOT.. done this way, there is a risk of developing (I believe he called it seroma), then it will enlarge and press on nerves and affect them. He never mentioned anything about the catheter or any leakage of anykind.

I read on the posts where some are getting their dosages increased once a week soooo I tried to use it to get him to do that...but... He kindly said, "We aren't doing what others on the internet are doing"! Sort of like when I mentioned the PTM (patient control thing). He pretty much said the same thing. But I really trust him. He hasn't done wrong by my yet, that I know of. He used a lot of glue in surgery and the stitches are very nice and clean. He is very efficient, knows what he is doing and it gives me confidence. I don't know if I helped you in any way about the seroma thing or even if I remembered it right.but I think thats what he said.

Bob, I know you are a sweet guy, but press him into giving you a more understandable explanation of what that lump is exactly and when he thinks he will need to intervene. It could cause harm in the future. My best to you Bob!

Hi Dena, sorry it has been so long and I haven't replied but just when Sarah started doing better, she caught the H1N1 and now we are battling something new.
I will answer your questions as best as I can
1. I had the pump for 5 months with the medication Dilaudid
2.30 mgs. Opana ER every 12 hours, 10 mgs Opana every 6 hours and 350 mgs. Soma every 8 hours.
3.I had Morphine in the beginning, then changed to Dilaudid, which worked much better for me and I can't remember the dose that they started me with, but I ended up receiving 3.0 mgs, daily, constant release ( but only 3.0 mgs over the whole 24 hour period.
4. When I wasn't active, my pain level was about a 3 or 4, When I was active it reached a 6, sometimes a 7.
7. I was very content with my pain level, very tolerable and when it began to escalate due to being active, I took the breakthrough pain medicine and it came back down to a level 3 or 4, I might add that walking, low impact aerobics such as dancing, helps to control pain, that is if you catch it in enough time.
5. I was very content with my pain level while I had the pump. It was much easier to help to control the pain level while I had the pump because before I had the pump, taking oral medication alone didn't help much at all and my pain level was so high that I couldn't even try to excercise which does help to control pain. While a person is excercising, our brain produces endorphines which are our natural pain killers produced by the brain.
6. I took Lortab 7.5 2 or 3 times a day for breakthrough pain.
7. Yes, I was able to live a much more active lifestyle. My daughter who is now 10, had never seen Mommy without pain. And a short time after I had the pump implanted, while we were outside playing, my daughter said with such excitement, "Mommy, Jesus answered my prayer!!!! You can play with me now!! Mommy, do you know I never saw you without a whole bunch of pain?" I will never forget that moment.
Good luck and God Bless Dena,
Sheila
P.S. 21 days until my surgery and counting, I am so excited!!

quote:

Originally posted by Dena:
Sheila, Bob, Anyone else that will be so kind to answer, Please answer these questions for me. (1.) How long have you had your pump implant? (2.) What medications and dosages were you on BEFORE the pump? (3.) What are your CURRENT pump medications and dosages per day? (4.) What is your current pump pain level with meds 1-10? (5.) Are you happy with your pain control? (6.) What do you take for breakthru pain and dosage. (7.) Are you able to lead active lives or are you more or less inactive due to pain level?
Please answer all details. I think others would like to know also. Please describe what each medication in your pump is for.

Sheila, answer your questions as tho you still had past pump in. I thank you all very much.

Please..all of you...take the time to answer, it will help a lot of people. Knowledge is power. THANK YOU!

Hi Bob, sorry to hear of your problems. I know from experience with a hematoma, the doctor instructed me to use a hot pack for 20 minutes on and then 20 minutes off and after doing this for a good while daily, the hematoma dissolved. I haven't had any experience with a seroma, but I am wondering if you could try this therapy to dissolve it. It was very effective for me. My only concern would be with it growing larger, but that was the concern with the hematoma. My hematoma happened to be pretty painful, only because it was on my butt.
I hope that this will help you and I am thinking of you Bob.
God Bless,
Sheila

quote:

Originally posted by Bob Engelbardt:
Hi All,

For some time I've encuntered a curious situation that I have not mentioned before nor have I seen any posts concerning it.

The place where the catheter enters the spinal cord has developed what's called a "seroma" which is similar to a "hemotoma" in appearance. It's been there for over year now. The result is a hard lump about 1-inch in diameter and about 1/2 inch high that is quite solid. If pressure is applied, such as when lying down on my back, the seroma will flatten out. If I stand or sit without back support for a long time, it will reappear and increase in size to a certain point.

The seroma is not painful and the doctor doesn't seem concerned. I'm sure it's caused by spinal fluid leakage (as opposed to blood leakage which would be called a "hemotoma"). The amount of spinal fluid collected in the seroma is not sufficient to cause a headache or other problems so I just try to ignore it.

Has anyone else experienced a seroma in the area where the catheter enters the spinal cord?

Very glad I found this forum, spent the last two days reading the 50+ pages of pump feedback from this community and learned 1000X more than my Dr ever mentioned.

My problem..... , after going through the gamut of numerous back surgeries, injections, pills, etc...., my neuro-doc, is now calling my condition "failed back surgery" and his only recommedation is to consider the morphine pump. I'm only 50 years old and plan on living (God willing) another 30 years +/-. My question, has anyone on this forum had there pump installed and happy with it's funcionality over the longer term (20-30 years). I am just very concerned about having this thing installed at a relativley young age and how it will affect me over the long term.

Second ?, I live in a state with medical marjauana is still taboo and punishable by our judical system. My biggest concern is my pain management Dr. doing a drug test and finding out my use and thus dropping me from the program. In my current condition MJ, is the only drug that allows me to get modest rest through out the night. Is random drug testing one of the normal parameters with this program. Are you folks with pumps installed subjected to this type of random drug testing ?

Me, I am a retired Air Force Lt Col, who has walked the line for many years.... Right now I am not taking any opiate medications and have not been required to submit to any type of testing. With my current condition MJ, provides substantial relief that no other drug has been able to.

Thank You all for your help.......

Fran:
Welcome! Move to Canada my friend.
I live in Indiana, every time I get a script, have a change in meds(pump change) I have to use the cup. If any pt is positive for mj no script, no change. I don't know how good of relationship you have with doc, but I would try to find out somehow his policy. If you don't take any meds are you in enough pain to have a pump at this point in time? I really would question that myself. Can't hurt that bad if you can function all day without any help and just mj at nite. If I read your post incorrectly I am sorry, but I thought you said you are not taking any opiates. If you aren't don't need the pump yet, don't do it.

GOOD MORNING EVERYONE-
Thank you so much for sharing your experience, strength and hope-
wanted to update you all on my treatment-
Yesterday my PM doc turned my morphene drip level up to 1.5 mg/day-
As I was on the xray table he checked to see if the catheder has slipped- and great news no it is where it is suppose to be.He won't increase the dosage of the patch (fentanyl) but he changed my breakthrough pain med to:
NUCYNTA- 150 MG/DAY (700 IS THE MAX DOSE)- That has given me some relief-
Bob, you put my situation into words in a way I had never been able to express-
The 100 mg fentanyl patch was covering the pain in other areas (neck, upper back,arms ect)-so dropping the dose to 25 has been exgrutiating. I trust my doctor but he is very conservative with pain medication.
I think 1.5 mg/day 15% concentration morphene is very conservative- could that be from the need to slowly turn the rate up? He has turned it up5-6 times since he implanted it 6 weeks ago- I am also reading other peoples dosages are much higher-
Also want you folks to know that NYCYNTA is anew med FDA approved in 2008- and is expensive. But it works well for me and have a feeling that I will need a higher dose-
I would appreciate any comments and experiences any of you great people want to express.
love ya and hope all of you have a good- painless day

Hi Fran and welcome,
I agree with Nan of the Dunes. If MJ is working for you and you aren't taking any opiates, I wouldn't recommend you getting the pump. The pump is for those of us who have taken meds for years and the meds just don't work or aren't enough pain relief. And to answer your question about random drug testing, most docs normally do drug test. As a matter of fact, one of the requirements to get the pump is to be sent for a Psychological Examination to make sure that you are a candidate for the pump. There are more than one reason that a patient must do this prior to the trial and pump placement and one of those reasons is to see if you are abusing meds or using illegal drugs. And if MJ works for you, then I would just stick with it. I am not saying that illegal drugs are okay, but I have heard stories about MJ and how it does help many with chronic pain and other medical conditions.
By the way, thank you for serving our country all of these years.
God Bless,
Sheila