New pain pump patient

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Mrs Muggles
New Member


Date Joined Mar 2017
Total Posts : 5
   Posted 3/4/2017 10:49 AM (GMT -7)   
Hi,
I'm a newbie to this site really although I have read loads of postings from others.
I am 49 years old, and have got a 23 year old history of back pain. I had a botched epidural in 1991 when my son was born and this damaged one of my discs which then had to be partly removed in 1995, this put pressure on my other discs. I had nerve damage from the surgery and in 2000 was fitted with an SCS for the chronic siatic pain in my leg. The stimulator worked brilliantly for the nerve pain but not for back pain.
I had a fusion in 2003 fusing L4, and L5 with a cage and rods and in 2006 I had the scs put back in after it was taken out for the surgery.
I have struggled with chronic back pain since then and take a cocktail of Oxycodine, Naloxen, Amitryptyline, and Pregabalin. I walk over on one side due to the back pain and wore the cartilage out in my left knee and and a knee replacement 2014. All was ok and I was coping so I went back to work in January 2015 but by July I was having huge back pain again (due to the sitting down working) and had to leave my job. Since then I have had injections and and RF treatment which worked slightly and helped me in sitting down for about an hour but no longer. I had the RF repeated in December around the area by my cage and rods and since that day my back pain has gone through the roof. I was now unable to sit down for any longer than half an hour and couldnt stand any longer either. I was at my wits end with no light at the end of the tunnel One of the reasons for the second rf treatment is that I have been having terrible spasms since last year every time I change position. These are agonising and I am no longer able to drive because of these. Since the last procedure in December things have got worse and I was in agony every time I move. My PM consultant suggested at the last appointment that I could consider the pain pump as a final option to reduce my pain. I was against the idea until my back started causing me even more problems and my quality of life with my family is 0. I dreaded going out, I dreaded sitting down and I found any social activities incredibly difficult and because I am in so much pain nothingwas fun anymore.
I desperately needed an option to give me my life back and so we decided to use our life savings . I am in the UK and I had the pump fitted by my hugely experienced pm consultant who is world renowned in the field of pain management spinal cord stimulators and pain pumps. I didn't have the trial as this was a last resort so as we were self funding it would have cost several thousand more we decided to slip it.
I have only had it for 1 week and I spent 4 days in hospital after a couple of complications. Firstly, I had a really bad reaction to one of the medications which caused intense itching, I thought I was going to claw my eyes out but I got prescribed some prednisone and it improved after 48 hours. Then I have a serenoma or haemotoma around the area of the pump which has caused it to become hugely swollen, remember the film Alien? Say no more!! Something has made me feel very giddy when I stand up and lightheaded. He reduced the morphine after the second day as I was almost comatose. I still feel strange but not as bad as I did. Yesterday he increased the dose by 33% and today I have been able to sit in a position I couldn't previously for the past year. I can definitely feel the pain relief having an effect and I'm sure it will get better and better over the coming weeks. I am hugely positive that this is going to transform my life. Will I be completely pain free? Probably not, but if I can manage to sit and enjoy a meal with family or go to a social event for a short time without being in agony, if I get 50% pain relief. ...I'm taking it
Let me tell you, it's not a great surgery. I have lots of wound sites, I must be incredibly careful for 3 months whilst the implant embeds in scar tissue. I must not do too much. I am keeping a diary so I can show him my pain scores. He wants to keep the morphine as low as possible to avoid granulomas. My stomach is huge but I am already off all my opioids orally and am just taking lyrica and amitriptyline for the nerve pain. I've even stopped the baclofen as he doesn't think I will need it, it's incredible that I have stopped opioids in just over one week that I have taking for over 14 years. The constipation is already improving.

Thanks for reading,
Lori

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15294
   Posted 3/4/2017 12:13 PM (GMT -7)   
Hello Lorie & welcome to Healing Well. You know every person that comes here has their own story about living with chronic pain. After reading your story you have had a long hard road trying to get some relief.

Very glad to read that your dr specializes in pumps & knows how to handle a pump patient, that is the most important thing of all. After your dr gets your dosage stable will you be allowed to use a PTM for break through pain? It is the little hand held device the dr programs & it will allow the pump to release a small amount of extra medication called a bolus. I am assuming you have a Medtronics pump. When my pumps were implanted I had the incision in my stomach & one in my back. Are you saying you have more incisions than that when your pump was put in?

So far it sounds like you are on the right path to getting relief you desperately needed. I certainly hope this holds true for a very long time.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 679
   Posted 3/4/2017 1:36 PM (GMT -7)   
Wow Lorie, what a narrative you shared. I really applaud the raw honesty that people share here of the trials and tribulations of chronic pain . . and the uncertain pathway to find even a measure of relief.

I hope that the pain pump continues to provide you with pain relief and comfort.

I have advanced avascular necrosis of both of my hips and left jaw due to prolonged use of corticosteroids. I have come face to face with the reality of pain that will never end. Pain has changed me as a person.

I can appreciate your comment . . . "if I get 50% pain relief, I am taking it." I find that I barter with God/Higher Power for the seemingly more simple pleasures in life since I have had chronic pain. Being able to "be" me in a better place, where pain is in the background rather than the foreground, would be my request.

You've endured a lot. I hope that life adopts a more gentle nature for you and that you are soon able to enjoy engaging with your family, sharing a meal.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

ivtec2000
New Member


Date Joined Mar 2017
Total Posts : 5
   Posted 3/4/2017 5:36 PM (GMT -7)   
Mrs Muggles; how Oxicodone cocktail works? how many milligrams a day do you take?how long have you been on Oxycodone?do you get any bad side effects?are you addicted to it?i am a 35 years sufferer of back pain and i take now one pill of 5MG 325 of Oxycodone a day,i know i should take a lot more but i'm afraid to get to much addiction and will get side effects that will hurt me on the long run,so i suffer pain most of the time,i walk one hour a day that helps,i don't work that helps too,but i have to take oxycodone when i go to bad,because i get worse at night and when i go to bed ,it's like a microbial that attacks me when i lay down on the bad at night,if i don't take one pill Oxycodone i wont sleep all night and can't stay in bad all night.

Mrs Muggles
New Member


Date Joined Mar 2017
Total Posts : 5
   Posted 3/8/2017 10:30 AM (GMT -7)   
Hi everyone, I'm doing okay. The pain relief is definitely improving, I can feel my back not going into spasm every time I change position which is great. My pain scores are on the 4s and 5s which is astounding. I do still feel really lightheaded and giddy though. I can feel the room almost moving when I stand up and I don't know whether it's the morphine dose that is causing it or something else. I feel like I am wading through treacle. I'm terrified that it might be the morphine causing this feeling as I know that's the drug he really wants me to have in the pump and we don't have as many choices in the UK. Do you think if it is the morphine that's making me feel like this that this side effect won't last for too long as I desperately want to feel clear headed. I am seeing him on 15th March for an update and possibly another increase and I will have to tell him my concern with the spaced out feeling. I almost feel like I am having an out of body experience. Don't get me wrong, I'm so glad I had the pump fitted because I feel it's going to be life changing for me but I can't feel like a zombie.

@I'vec2000 re Oxycodine I have been on this drug since 2010 and I have found it really effective. It also contists of a drug called Naloxen which stops you becoming quite so constipated. The dose is 30mg oxy and 10mg Naloxen. However, since having the pump implanted I have stopped this drug completely over just 10 days and I didn’t get any withdrawal symptoms.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15294
   Posted 3/8/2017 10:41 AM (GMT -7)   
It may very well be the Morphine & it could be he needs to reduce the dosage just a little. I would see how it goes between now & the next appt & discuss it with him. The fact you say your pain level is 4-5 says the pump is doing its job. Even with a pump you will not be pain free, they are designed to make the pain more tolerable & allow you to function at the same time. I think its fantasctic that your pain level is down to those numbers.

Keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Mrs Muggles
New Member


Date Joined Mar 2017
Total Posts : 5
   Posted 3/9/2017 4:25 AM (GMT -7)   
@straydog, not felt giddy this morning, yay, think I might have slightly overdone it yesterday though as I felt so good pain wise and not so good today. I told my pm consultant that I never expected to be pain free but if I can keep it the levels I had yesterday I will be a happy bunny.
I took the dressings off yesterday and it is all healing ok. I do have a huge grapefruit swelling one side but I've been told that this will go down a lot over the next 3-6 months. I seem to weigh a good 5lb more since I came home from hospital but if I have to weigh more to get less pain then that will be a positive trade off although it could also be that I have not been able to control my calorie intake very well whilst caring people have been bringing me food.
Take care
Xx

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15294
   Posted 3/9/2017 7:18 AM (GMT -7)   
A lot of times that swelling you are speaking of is a collection of blood. I had this both times I had pumps put in. The drs always drained this out, keep an eye on it.

The pump should not cause you to gain weight I don't think. Like you said, perhaps its the food being brought in that is the culprit.

Is your pump a Medtronics?

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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