Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-16-2007, 10:41 PM #1
AJSG AJSG is offline
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I'm supposed to get a pump March 12. I have RSD all the way up my left leg,
and it's starting in my right foot now. I've had all the blocks, SCS, everything, so now they're going to try the pump. I hope it will allow me to get off a lot of my pain meds so I'm not nodding off all the time, and that it will control the pain better than it is now (at an 8 to 9, all the time). Does anyone have any experience wtih the pump? Do you know if you have to restrict your activities the way you do with the SCS? I'm pretty nervous about the whole thing, especially since nothing has worked so far, and most of the procedures have made things worse.

AJ
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Old 02-16-2007, 11:01 PM #2
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Hi,

I had the trial. It gave me so much relief.

After all these years of pain, I never really realized
how bad my pain was. Torture is the best word I have to describe it
I've popped fillings in my teeth from clenching.
I've almost bitten right through my bottom lip.
That was until I had the trial, which was a year ago.

Right now the permanent pump is being denied.
My doctor said it is downright "cruel".
My lawyer is clueless and hasn't helped me to get it even though my
doctor asked him to help.
I try not to think of it so the tears will not begin to flow.

Someone else on this forum who has had the pump for years and loves it may come along as well as a lady whose husband has it and it got infected right away so it was turned off.

Mine will have clonidine in it also.
I still have ......
Hope
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Old 02-17-2007, 02:21 AM #3
tayla4me tayla4me is offline
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Hi AJSG,

I have an intra-thecal drug pump in and have had it in for several years.
At the time I had it put in I was living in a "fuzz" I was taking huge amounts of opiate to try and help my pain. Life was just slipping by.
The pump has allowed me to reduce all my pain meds to just 10 mgs of Morphine and Baclofan a day.
My pump does not give me pain relief of the areas of spread of my CRPS but am hoping for an insertion of another catheter that will direct the drug to the needed areas.
As far as affecting your lifestyle, there are no restrictions as there are sometimes with a SCS as the pump is under the skin and the catheters are placed into the intrathecal space near the spinal cord.
The one restriction I suppose is that you are tied down to regular pump refills which will restrict any travel plans you may have.
One thing to look forward to is a clear head and NO nodding off mid sentence.
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Old 02-20-2007, 10:37 PM #4
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Thanks, the pump is sounding pretty good. Hope, that is terrible that they won't give you the permanent pump. It might be good if they had to live with the pain for a few weeks before they made any decision on who should get one and who shouldn't.

Is there anyone else who has the pump? I'd really like to hear details on the surgery and how long you were in the hospital, how much pain was involved in the procedure, how long before you got relief, etc.

AJ
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Old 02-27-2007, 04:06 PM #5
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AJ,

The manufacturer of the pump you are getting should have adequate information available for you to review. I was given a detailed explanation about every step of the process and was provided a video tape from Medtronic about the pump, before my trial. Before making my final decision I still had many questions and they took time to address my concerns. As it turned out the pump was a good thing for me because it has improved my situation. The pump has been in for just over two years now and the benefits far outweigh other factors to this point.

My advice to you is that if your medical providers are not giving enough information to allow you to make an informed decision, you should ask more questions and insist on answers until you are satisfied within reason. Nothing is 100% and you should not expect the pump to be the end all solution to your pain. However, if carefully thought out, and both you and your medical team feel that you will benefit and be better off - go for it! (I'm glad I did.)

I don't like to get into specifics of surgery, recovery, etc., because we are all individuals. My telling you my story only states what happened with me. The next person could have a totally different experience, so don't place too much hope there. Also remember that after the pump is implanted it will take time to get the medication titrated to the point that you get optimal relief.

Last but not least, make sure that the surgeon performing your surgery has losts of experience in pump implantation. Don't be a study case in inexperienced hands. There is a lot riding on the outcome of your surgery!

Please feel free to PM me if I can be of assistance to you.

Take care,
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EJ

EJK from the old BrainTalk forum
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Old 02-27-2007, 07:35 PM #6
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AJ,
The operation is relatively minor and not too painful at all. Whilst the outcome and experience will vary from patient to patient I have seen many , many patients have them inserted and our experiences have not been too dis-similar.
My guess is that your doctor would put you in hospital to trial you if he hasn't already, as it would be a waste of time to endure the operation if it was not going to give you pain relief. There are different cocktails of medications that maybe used and this is patient/doctor specific.
The pump is inserted in a pocket made under the skin, usually in the lower ,lateral abdomen below the belt line.
The catheter is threaded from the pump under the skin around to the back so there are NO wires meaning no restrictions to swimming , bathing etc.
It takes a little getting used to and sometimes gets knocked on bench tops etc but it soon becomes second nature to you.
The pump is not started straight away in hospital and is then titrated very slowly to establish the exact right dose that will give you pain relief without side effects. Here in Australia the whole process would probably take about 2 weeks in hospital, I am not sure how it would be in other countries.
You may get some headaches in the early days post op as you adjust to having fluid pumped into the intrathecal space but I found this not too worrying. This also is not the case in everyone's experience.
Since my pump 7 years ago I have managed to eliminate all pain relief apart from the Morphine 9mgs per day. This is a huge difference to what I was having before my surgery.
I wish you heaps of luck, we will all have different experiences but sometimes it is nice to hear a positive one! Tayla.
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Old 03-07-2007, 08:01 PM #7
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Hi!

I just had the pump put in almost 2 weeks ago (tomorrow) for back pain. Before my surgery I was searching for surgery details also so I know how you are feeling. I would be happy to share my experience but like other posts said- keep in mind that everyone is different. You may have a completely different experience.
I spent 2 nights in the hospital and from what I have heard that is kind of long. Some leave the same day but my operation was done in the evening and I had low blood pressure issues so he wanted to play it safe and keep me around another night. Waking up was the most uncomfortable part but they will give you meds in your IV for that. I am pretty tolerant to medicine so I'm not gonna lie it hurt more than I thought. I'm also pretty small so he had to use the smaller device and it still was a stretch getting it to fit. Rather than type a novel- I'll just summarize by saying that so far it's worth it. I've had to increase the pump 3 times in 2 weeks and this is common because they will start it as low as they can. I called in today to get another increase before I go back to work Monday. I have had 0 activity in the last 2 weeks and I go between a 2 and 3 on the pain scale (much better than my 8's and 9's before). I am on NO oral meds! Yay! I was on the 100 fentanyl patches before the pump. I am waiting to see what I will feel like when I am back to normal life.
My biggest concern now is returning to work Monday. Can someone post how long they were out/down when they had the pump in? I'll be out 2-1/2 weeks if I go back Monday. I feel a lot better but not 100%. I tend to push myself too much so I am debating on asking for another week to play it safe. Just curious how long others needed to fully heal.

Good luck and I am here if you have more questions!
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Old 03-08-2007, 04:28 AM #8
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Thanks everybody, I'm feeling a bit less nervous, though still not
looking forward to it. The doctor has done many many pump implants,
and I feel he is a very good surgeon. He put in a SCS last fall, and
though it didn't work for me (the stimulation was painful to me) it
was put in the right spot and covered the right area. I'm supposed
to be in the hospital for a week or more - 1st for the trial, and then
if they can get a successful mix of meds, they'll put in the permanent
one. I feel weird about having something foreign in my body. I guess
I'll get used to it, if it works. I would love to not nod off in the middle
of a sentence! Oh, I really hope this works.

I know the meds in the pump vary from person to person, but what
do you have?

AJ
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Old 03-08-2007, 05:21 AM #9
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There are a few different medications which are given via the pump but the most common one used is Morphine.
There are sometimes combinations of medications given dependent on your needs. If you have spasms as a feature of your CRPS then Baclofen maybe added.
Clonidine, Marcaine, Pethidine are just a few also used but much less often than Morphine.
It is obvious that in USA there is less time spent in hospital post -op, with
"ERM" having only 2 nights.
Here we are here until our dose has been titrated to the dose which suits.Obviously that occurs once you are home in the USA.
As far as returning to work I think it would be dependent on the person and the type of employment.
The less vigorous type of job would be much easier to return to but physically it does not take much time to be painfree in the surgical sites.
Good luck, take care
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Old 03-08-2007, 09:07 PM #10
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I have morphine in mine right now. I went to the Dr. today and they explained that it could be months until I am at the exact dose that I need, and they may end up changing the medicine used. So like other posters have said- it's an ongoing assessment based on the individual. All I know is that I would have never been able to sit here comfortably on the computer without a large amount of narcotics so this thing must be working! I am not pain free yet but hopefully I'll get there with time.

Good luck!
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