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Severe Back pain and muscular dystrophy

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Chronic Pain
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Posted 11/7/2015 4:27 AM (GMT 0)
Hello to all, new to this site, and i am looking for information. I have had six back surgeries with still two more to come. Needless to say i have constant pain in my back and legs.on top of that i was diagnosed with a form of muscular dystrophy. so my question is in two parts, 1. is anyone else dealing with MD? what can i expext in the future as i know this is a progessive disease with no cure. 2. I have been told about a pain pump implant to help with severe pain, I have tried all other options form oral narcotics to injections and nothing helps, does anyone have personal experience with the pain pump and how is it woking for you. thank you for any info you could give
Posted 11/7/2015 10:10 AM (GMT 0)
Welcome T and sorry to hear about your issues. Not sure we have anyone at the time with MD but there's some pretty awesome folks who may be able to answer your questions in the MS forum.

As for the pump we have more pump folks now then we ever had and that's probably due to the ever changing tide of opiate therapy.

We just had a very good discussion about this and we are trying to get it archived in the CP 101 thread which by the way may be of interest to you. The best way to read what anyone has ever post here is the search feature at the top of the page and enter the criteria and you will be able to see all the archived materials but we ask you don't post in the old thread's since many of the members are nolonger here and current members usually don't read them but bring your questions back to this thread or start a new one and we will try to get you a answer.

I will make sure Susie (Straydog) and WB, my two comods see your post since they both have pumps, one recently one for many years. Others will drop in and say hi and welcome you and its the weekend and sometimes slow in here but ppl will trickle in.
Posted 11/7/2015 7:25 PM (GMT 0)
Hello & welcome to the chronic pain forum. I am glad that you found us but sorry you have the need for a forum such as ours. The number of people that suffer with chronic pain is just staggering.

It sounds like you have a pretty full plate of medical issues to deal with. Two more surgeries looming in the future, wow. You asked about pain pumps, I have one. This has been my source of pain control since 2005. Like you, I ran the gambit of pain meds & ended up at the end of the line .I admit I was shocked when my PM dr suggested one back then. I thought I was too young to go that route & the truth be known I was scared to death. He said in 3 months you will change your mind & he was right.

You will have to pass a psych eval before doing a trial for the pump. The purpose of this is to make sure you have reasonable expectations of what a pump can do for pain & you will also not have problems with an implanted device. Reasonable expectations means even with a pump you still have a certain amount of pain but its much more tolerable. A trial is considered a success with a reduction of your pain by 50%. Quality of life is much better for me as a result of this pump. As you know living with CP we pick & chose our battles carefully. Since you have had back surgery if you have a pump put in, that surgery should not be a problem for you. Back surgery is much more involved than placing a pump so you should do fine if it comes to a pump.

I have some errands to do so I am a little short on time right now. If you will click over to page 4 & look for a thread started by Audreyanna, there are posts there from three of us with pumps.

I could tell you much more about pumps but if you will use the search feature above as Vickie suggested, there are lots of threads to read. Ask all the questions you have right here & we will do our best to answer them.

Also, go to www.Medtronics.com & read about pumps there. This is the pump mfg that drs all use. They have a very user friendly website with lots & lots of info about pumps.

Take care.
Posted 11/7/2015 9:05 PM (GMT 0)
Thank you both for your kind words and encouragement. I have so many questions, but I guess what really want to know is, is the recovery from surgery painful, and do you still need to take oral medication for pain with the pump? A lot of other sites I have seen say the pump is horrible, I know this is there opinion as we are all different. I take so many different types of narcotics that do no good, and I'm just depressed all the time, retired military, avid skydive, but that has all had to end now I just mope around because I can no longer do what I love. Thank you both once more it's nice to have a forum where I'm not alone
Posted 11/7/2015 9:21 PM (GMT 0)
No, you should have a device called a PTM that the dr sets by computer & this little device will release a measured amount of medication which is called a bolus. This will be your BT pain meds. Wonderful little gadget.

I had no big issues recovering from any of my surgeries with the pumps. Your back surgeries were much more brutal to recover from than these pumps. Its more superficial placing the pump & the incision to place a catheter should be around 2 inches. My first pump the idiot that did my surgery made a 5-6 inch incision. That was back in 2005. Every dr that has seen that scar all said I thought you said you have not had back surgery why such a large scar. Thats when I found out it should have been about 2 inches long. Still I had no big issues. Believe me, the first time around I was terrified & I have had lots of different surgeries.

I don't ever want to come across as sounding like I am advocating pumps because they are not for everyone. But, for me it was a life changing thing. I went from doing pretty much nothing to having some semblance of a life again. Yes, there are horror stories out there I am sure but I think you have to consider the source & what that person may have expected. We really never know the people to know what their real story is or isn't.

Keep asking all the questions you want as you need as much accurate info as you can possibly get.
Posted 11/7/2015 10:47 PM (GMT 0)
Thanks again, I see my Dr on the 23rd and I don't want to go in blind, trying to do as much research as possible so I can weigh the pros and cons but I really would like to try it. Did u have it implanted straight away or did u have to have a temp first, when I had my scs implanted I had to have a temp implant for three days. It worked well but since being diagnosed with MD it has to come out. Thanks so much
Posted 11/8/2015 12:39 AM (GMT 0)
Also I almost forgot, there any side effects I should be aware of or that u experienced. Thanks again
Posted 11/8/2015 5:42 PM (GMT 0)
I am not sure exactly what you mean. All surgeries come with potential risks. You first have to do a psych eval & pass it, then your dr will do a trial & depending on your results of the trial depends on whether you are a candidate for the pump. The trial is done on out patient admission, some drs require the patient to wean off all pain meds, some drs do not. Same with implanting the pump its done as an out patient procedure.

Most people end up on less pain medication with a pump because the medications used in the pumps is in a concentrated form. If a person feels loopy with a pump they are on too strong of a dose. It takes a bit to get a person at their proper dose in the pump too. Your dr will have you come in & he will do increases to get you where you need to be. I can drive a car & not feel that I am putting someone else at risk or myself. In fact, my head is much clearer with a pump than oral meds.

I do urge you to go to Medtronics website & read about the pumps there too. Take care.
Posted 11/8/2015 10:16 PM (GMT 0)
Thank you once again, you are a wealth of information. I will definitely check out the web site. Take care and that's again
Posted 11/8/2015 10:37 PM (GMT 0)
Just curious...there are several forms of MD and I'm wondering which one you have been diagnosed with. My best friend since high school has Myasthenia Gravis. I'm not 'up' on any of them specifically, but am a 'sympathetic ear' if you need one.
Posted 11/9/2015 12:15 AM (GMT 0)
Thank you pitmom, there are nine type of MD that I'm aware of, I have monotonic MD. Muscles do not relax, especially my grip when I hold something, as well as muscle wasting and horrible joint pain to go along with my back pain, have endured six back surgeries. Four to remove three ruptured disc and two to have a scs implanted. Two more to go. It would be nice to have someone to talk to, thank you
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