I've now got the spinal morphine pump for my severe RLS\WED.
It is loaded with a very low dose of morphine and I have to take morphine pills to survive, but next week they will inject a higher dose and then a higher again after one week more. After that we will know if it works for me. The pain doctor explains for me that it takes some time for the brain ( my poor poor brain) to learn that the pain killer now is coming from the spinal liquor instead of from the stomach, liver and blood system.
The pump is external until then. I am carrying it in a little bag on my shoulder.
Thanks for the update. keeping fingers crossed for you...
So that little bag is something that you have to carry around with and even sleep with?
I bet it's a tiny bag. Do you disconnect it and tape up your back to shower? I had a
I had a pic line to deliver antibiotics for almost an entire year..about 2 yrs ago when
I had my knee replaced 5 times. I had to wrap my top arm in plastic food wrap in
order to shower..it didn't really bother me at all. I have a dot size scar on the inside
of my arm...Oh and do they have to keep changing out the dressings or whatever
tape you have holding it in place? I had to have that done at least once a week. .
Lastly, does the morphine stay out of your head (make you feel tired, fuzzy)
I am so happy that it's behind you now. Keep us updated..I do believe that you are
the only one who has that right now. Karen
Thei pump is small like two boxes of cigarettes beside each other and it is in a black bag with a shoulderstrap. I is not supposed to be disconnected. From the pump there is a tiny tiny hose where the morphine is running and it goes in to a valve with a filter on my stomach that is covered with wound tape and then it runs under the skin around my waist into my spinal.
The tiny hose (I do not know the medicine word) is quite long and I just put the pump besides me in the bed at night and in a plastic bag outside the shower cabine when I take a shower. It does not bother me at all. When I go outside I carry it under my arm with the shoulder strap crossed over my chest. No one can see it when I have my jacket on.
Once a week they will look after the valve and the filter on my stomach and the input in my spinal, they will change the wound tape and at the same time they will fill the pump with a dose that is double so high as the current dose.
No, I am not dizzy. I am use to quite high dose og Fentanyl and morphine and even if this is right into my brain I feel OK, it is a very low dose now the first week, I have to take pain killer morphine pills to complete the pump dose otherwise I'll go crazy.
I do have a light head ace due to the leakage of spinal liquor during the operation and I do feel some itching from the tape. My skin is extremely sensibel after many years with Sifrol. But I am so happy for this first step and already looking forward to next step on wednesday.
Here in Sweden there are just a few people who has got this pump, it is still very controversiell even if the study from 2007 showed good results. It is expensive and often only used with cancer and spinal damages. I have been fighting two years to get it, fighting!
Hello Swedish, that's very interesting regarding Sifrol. How do you know that Sifrol is having any effect on your skin? Is it only Sifrol that you have previously been taking?
I have never had any skin problems before in my life, but after more than 12 years with Sifrol I got many side affecs.
One of them is a mixture of skin problems like hypersensitivity, (clothes, bandages and shoes are "nagging", rubbing), excema (ok english?) rashes and very dry scalp.
It is well documented in the information folder that comes in the box, we in Sweden call that a bi-pack-folder, that you can have side affects like thoose, they are not the most common, but they exist and I got them among a few others.
Oh yeah that tape does get itchy..you might have to get another kind of tape covering.
They make at least 3 of them..I do not remember what they used on me..I was pretty
high on drugs after the surgeries. All that I do remember is that my arm was so red
and I had little blisters under that tape..It did itch a lot. There was this needle inside my
vein in my inner arm that was threaded to just above my heart on the other side of me.
I could taste the medicines that went in me..like metal. and the saline flushes left
the strongest taste in my mouth. haha. You are a trooper for being the first one with
the pump. I hope that those headaches go away soon for you..I am looking forward
to your next visit as well..I want for you to tell me more about how that works as
they increase your dosages. I will be so interested if the morphine starts working and
the pills go away. Thanks for the update..Here's to no more RLS for you. =))))))
Thanks, my dear! The headache can stay for up to two weeks, but it isn't very bad at all.
Swedish thanks so much for sharing your procedure with us all, I am so happy to hear it's going pretty good for you, I hope this turns into the best thing ever form you. I am going to share your story with my dr because as I have said before we have discussed me having this done also. Please keep us updated on how your doing with the pump. But as for now take it easy.
Today I had a little, what do you call it, nausea? It was not nice att all and I think I have to be more careful with the morphine pills this evening even if I dohave pain in my arms.
Maybe the morphine in the pump takes a while to reach around all the nerv system? At the moment I am not so interested in a higher dose..... Have to wait and see what happens.
Swedish I'm sure it's going to take a good month or so for your body to except it, but if this turns out to work wonders for you how nice would that be, I take so many pills now to just make it Thur the day with my RLS which is how I came upon the pump in search for something on a even dose the fentanyl patches do help but I'm sure when it's pumped in it's much more controlled, I just need to find somewhere in Canada that does this. Please keep me updated.
Hi again! Yes, I have been dreaming about a day when the pump is working and everything is just ok and I can live without pills. But my pain doctor is a little unsure about my arms, he says that he cannot promise me that the pump will help the arms. I just have to wait and see. This evening I took a Sifrol 0,18 mg and only 10 mg morphine because of the nausea yesterday.
My legs are ok, my arms are ok, but the unpleasent feeling inside my body, the urgent to move is still here.
OH my, I sure hope this all works itself out nothing worse than the feeling of having to keep moving, I hope your able to keep me posted over the next month or so, I can't wait to share your story with my dr,who also suffers with RLS.
Seven patients have been successfully treated with a continous intrathecal infusion of morphine using an implanted pumpsystem. All patients responded to treatment and reported a complete relief of symptoms. The mean daily dose of intrathecal morpine was 300ug, 4 patients needed less than 75ug daily. No signs of tolerance were observed in 5 patients. The mean follow-up time was 48 months. No serious complications attributed to this treatment were observed.
Lindvall Peter, Ruuth Krister, Jakobsson Bengt, Nilsson Stefan
Correspondence: Peter K J Lindvall, Neurokirurgiska kliniken, Norrlands Universitetssjukhus, SE-901 85 Umeå, Sweden.
Thanks so much Swedish I will sure pass this on to my dr, I just finished reading your summary you wrote about your RLS our stories are so much the same.
Thanks for posting. It's a bummer though the doc says that he can't be sure it will help your arms. If not, what is the good of it? I find RLS in my arms is worse because you can't walk it off. We all have to keep our fingers crossed for you. I so hope for your mail to tell us all has gone well and that you are pleased with the result and will have a better life.
dekker: the good of it, so far, is that my legs are OK!
I am pretty sure (I do really hope) that my arms will be ok tomorrow when they insert a double dose morphine into the pump.
And about my doctor, I am his first RLS/WED patient, he knows hardly nothing about our disease, but he is contact with another doctor in another part of our country that is the one who has done most operations on us in Sweden and Norway.
My doctor is very pleased with everything he is learning from having me as his patient, he is a famous pain doctor in Swedens second biggest town Gothenburg on the west coast. I have to trust him, he has given a lot of cancer patients this pump.
And I do agree that it is hard with the arms because you cannot walk them, I use to do some knitting trying to get rid of it.
Good for you and the medical field: we nees those docters!
Yesterday I got a double dose in the spinal morphine pump. It is still not enough to take away the terrible pain and movements in my arms that start around 4 pm, but my legs are ok!
New double dose next wenesday.
Now, after two weeks with the pump and one with the dose of 0,96 milligram morphine, I do not need to take extra morphine any longer!
The pump is enough to take away all my symptoms and pain!!
In december I'll get the one who is to be operated in under my skin on my stomach and is going to give me a low dose daytime and a much higher during evening and nights. Totally 0,96 mg, I use to eat 70 mg.
It worked! YIPPEEE!!!
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Wow...sign me up! =) That's so lucky that it worked for you. Bet you can't wait to get to a point of forgetting about the pump except when you have to have the tape and bandages changed. =))) So happy for you.
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Yes! and when the other pump, the ordinary one, is operated in under my skin there will be no need to think about it more than every seventh month when it needs to be refilled by a small injection through the skin, it is programmed and remote controlled.
Would be pretty cool if the pump became the standard treatment for those who cannot find relief any other way. It's quite an expensive procedure though, isn't it? I would love for it to be
my treatment...Question, is it bulky at all? Can you lay on your back without upsetting it?
I mean, do you know that it's there? Technology fascinates me. I can remember a time in my dad's life where that pump would have been a Godsend.So happy to share in the good news. Keep telling us what happens along the way. =)
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Yes, it would be great if it was a standard, we have to inform and educate the doctors and the patients, that's why I am here on this forum!
The pump is very expensive, but here in Sweden we still have a very great social- and sick insurance by the goverment, I do not need to pay for moore than an ordinary visit at the clinic. Even the batteries are free :-)).
My back is no problem the "hose" goes under my skin into the spinal from my stomach where there is a thing (valve?) and that is where the ordinary pump is to be operated in later. So today it is a little mess on my stomach, but in the end there will be nothing outside my body.
my husband has very very severe Rls disease & unfortunately no medicine works for him now. Could you tell me of morphine pump expenses? how long it takes time to see if it works or not? because we don't have this opportunity in our country and maybe we have to stay in other country for curing him. In the end I also need your doctors name to contact. Thanke u for helping me
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