Practical Pain Management Community Advice
Posted in: CRPS/RSD, and Foot Pain.

RSD

From: snowman2 - 5 years 3 weeks ago

Im looking for feedback on Intrathical pumps . If anyone has this device i would appreciate anything you have to offer as far as how it is working for the pain

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I take IVPB Reclast once a ... from judy_simmons
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Because the medication is intrathecial you will not have the problems which are seen with a systemic administered medication. Patients do very well on this type of narcotic administration route. The medication is titrated to pain control and can be adjusted per infusion pump. It is a more expensive route of administration but the benefits can be a substancial change to quality of life.

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Sounds like you have seen this device work do you know peaple with rsd ? My doctors at the pain center i go to say this is used only for patients with cancer , based on what i have researched this looks like it could work im concerened overall but desperate , I need to have contact with peaple living with cronic pain , i feel so isolated and just need to keep moveing forward

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Thank you Judith K. Simmons RN,RPH this is very good to here sorry i clicked on a wrong button

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Please realize that a intrathecial pump insertion is considered a last pain control effort. Yes I am very aware of the many implications used in pain management. I have suffered for over 11 years with RSD/CRPS. I have RSD affecting my left upper extremity and the RSD has now gone into the left side of my head. Yes it is extrememy painful and very unforgiving if you try to live a "normal" life. I have a implanted spinal cord stimulator (since 2004) which has helped relieve my left arm pain. I was just told by my pain management M.D. that intrathecial pump is my only alternative. Intrathecial medication can be morphine...dilaudid or even lidocaine for infusion. I personally would choose the lidocaine because I have had success with it by 5% patch or ointment. I use a minimial 25 mcg/hr fentanyl patch Q48/hr. With RSD inflammation is a huge factor with pain control. Stellate ganglion nerve blocks only afford me a few hours of comfort and are expensive forbidden for such a short time of pain relief. My RSD is centralized in my nervous system now. Traditional therapy doesn't help now. Don't give up hope. RSDhas a tendancy to wax and wane.

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Im considering the inthrathecial pump becuase the rsd has spread from my right foot to my left foot and lower sections of my legs the pain center i go to is currently doing sympathetic nerve blocks every 10 days and alternating them from one side to the other because they cant do both at the same time .I feel ill most of the time like the rsd is trveling through out my entire body and i find it a full time job now manageing my pain , i was on methadone most of the summer when i felt like somthing changed inside me and i couldnt take it anymore so i went back to oxycontine and endocete along with the nerve blocks and biofeedback it still is a battle . Im scared to say the least because in 1 year its only gotton worse and im really struggling with this i need to talk with peaple like yourself so i dont feel so alone.

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How are the sympathetic blocks working? It sounds like your docs have you on an active regime of S.N.B.treatments to try to get your S.N.S. to quiet down and quit arching pain signals. It is a very trying regiment to go through but sometimes the end results is a calming down of symptoms ( at least for awhile). The docs are going to evaluate after the series is completed. They will try all other methods of getting your RSD under control before considering an intrathecial pump. RSD is so isolating and you feel like know one else understands how painful your life has become. Don't give up. We are in this fight together! Do give the treatments some time. My SGNB's were always a couple weeks delayed in seeing some relief. Remember you are not alone in this!

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Well this is my second go around with the S.N.B.last year at this same time i did those for 6 months in hopes of kicking it into remission but that didnt happen ive done everything you can think of 20 sessions of PT. along with Biofeedback every 2 weeks , counseling every 2 weeks numerouse tests s phase bone scan , MRI , xrays . Also have been through all meds currently taking oxycontine , endocete , gabapentine 3000mg a day clonazapam to sleep . and muscle relaxers . Im concerned about goingf through with SCS i dont think i am emotionally able to handle going through that they want to use 3 leeds because i also have degenerative discs so well see im also trying Accupuncture right now working with my diet and want to try B12 shots any thoughts ? Also Vitamins any ideas there ? and one more thought for now bone medication what is your opinion

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I didnt answer your first question the SNB are very grueling and so far this time i have only done 2 of them so not feeling much yet the RSD was really lit up i have my 3rd on monday so we will see but yes they do take a while and i did get relief last time but this is no way to live there has to be something else . Have a good holiday and thank you for answering my questions sounds like you know alot and have been through alot

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OMG You sound just like me back in 2010. I honestly thought I'd loose it! Things were really BAD and I wasn't again given much hope. But PLEASE as BAD as it does seem--don't give up. You are essentially doing the same therapies, meds, and treatments I've done. It is a lonely path. Your "friends" stop calling and even family gets weird and evasive. It is their only way of trying to cope, seeing you in so much pain. Your not the person you were and that's hard for them. It is hard being around someone who can know longer do all the things that were once shared with others.....it's not their fault. How is your mobility? Do you use a cane or walker? I know that bodily feeling like the RSD is attacking your whole body. It's awful! I chill and shiver like no other. I went up to 3600mg of Neurontin and along with the muscle relaxers I got very sick. My brain felt like one of a zombie...So now these meds are out. I just can't tolerate the brain thing. Let me tell you what has helped me nutrition wise. I started taking one scoop of whey powder = to 27G protein daily and I do feel better. Try taking a "B" complex daily. Magnesium is paramount to helping your nerves with RSD. Start out with 400mg daily....then increase to 800mg. If you develop loose stools back off and try it again. PT and bio. never really helped me...but if you receive benefit keep those therapy's going. A/P worked at first, then never has since (I had 28 tx's). There will come a time when SGNB will not help. Don't fear, it just means the RSD has gone into your CNS and will be harder to treat. That's when a discussion with your Doc's about intrathecial pump is essential. Remember, you are the Doc's gauge when your body is saying this doesn't help anymore. For you, I think a SCS to the lower extremities would NOT work well at all, and I wouldn't recommend that. I wish I could see your email comments as I'm emailing you. It's hard to remember all that was discussed in your last email if it's not in front of me. Well, you have a blessed and peaceful Thanksgiving. Hope to hear from you soon.

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Hello i couldnt sleep got really sore today and wasnt able to help around the house as much as i wanted it s like i shut down from the pain and cant move . somtimes for hours . the pain center is really pushing the SCS but have been told by others that its not a good plan . So i trhought diet and vitamines would be good ill make note of what you suggested . ive been thinking i should take care of bone have you ever tried Pamidronate , Alendronate , Miacalein , fosimax , or calcitonin . Also looking at Thalidomide its a sedative . Im getting scared the last few weeks my heart hasnt been at the normal rytham its normally at around 70 but now around 50 i think its from all the sedation they use alot of Versed withthe SNB . Eerything is becoming more complex . Also Enbrel is another drug ive heard of for RSD . And lyticane for when it has traveled through your body witch i feel has happened . I feel im going to go crazy but have surrounded myself with peaple i can talk to but the family doesnt now what to do so i hide alot. I use a cane to walk and a rolling knee cart for longer distance

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Hello i was wanting to talk to more about meds and Rsd please contact me

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I take IVPB Reclast once a year for osteo. Of course along with that I take the calcium and D3 supps. This has been better than trying to take the pills on a weak stomach and difficulity swollowing the pills. I have tried the Micalcim nasal spray you talked about. Smells kinda fishey (salmon based product). I used the Miacalcim for about a year then went to the IV route. There is something going on with a low heart rate of 50. Your not getting dizzy? Be real careful when you are getting up from a sitting or lying position....dizzy is not fun. How are your SGNB series coming along? The holidays have been very challenging for me. I have to stay warm, rested, limit stress and keep a quiet environment or sick I will be! Getting back to your first inquiry regarding the intrathecial pump...talk with your M.D. frequently and ask many questions. Intrathecial pumps are no walk in the park remedy but you must research and become well versed on the subject in order to make a sound decision when that time comes. If you understand the dynamics of caring for yourself when on this pump and how it can change your life..not always for the best, then you are far ahead of the game when the M.D. opens it up for discussion. The SCS for the lumbar area has not worked well on most RSD patients that I know and it gives off a lot of leg electrical shocks if the programmer isn't up to snuff.. I don't know any patient who speaks well of it. May be there is someone out there that can give their opinion on a lumbar placed SCS. I have mine placed at C-2 (neck) and it took many months before it didn't send out shocks (which hurt). I finally got it programmed correctly but I hate it....but I even more hate more pain. Start research on your computer now and go on every medical website which offers clinical research articles. Education is the key to your answer on intrathecial pumps. Please mention that bradycardic (low heart rate) to the M.D. pronto.

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Hello glad to here from you and happy that we made it through one holiday , I talked with my doctor about the sedation and we decided to try Propofol with the SGNB . They are more dificult then what i remember it really takes alot out of me i had one on monday and still feel crappy but the pain seams to be subsiding , Its still to early . This IVPB you do once a year is that the Pamidronate i asked you about ? Im meeting with one of my doctors in the morning to go over what vitamines i should be taking im getting so many differant opinions on this so im going to forsure get a multi along with calcium suppliment and magnesium , b complex , and the rest is a big question mark . Im reading some books i went and got over the holiday on RSD have you read these the first one is Positive Options For RSD and the second one is RSD And Me they have alot of info Im getting overwhelmed but trying to get organized for my new doctors at the mayo clinic in Minnesota im glad i live here and dont have to travel . I just want to be prepared like you said so im researching as much as possible . I still dont know what to do about this awfull chill running through my body or the fact that i feel spent after a couple hrs of activity im hoping that vitamines will help any way please keep talking and my name is Thomas good night for now

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P. S. What did you mean that you have to keep warm , quiet , and stress free or you will be sick ? what are your symptoms when you get sick maybe this is my biggest problem because im sick all the time .

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Hope everthing is ok i havent heard from you

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Here's hoping your doing better with the SGNB series Thomas. I had an RSD exacerbation and am taking an oral titrating course of cortiosteroids. I have terrible insomnia as a bad side effect. My RSD became more inflammed to the point it was difficult to turn my neck. The burning became more severe down my arms and I was sweating profusely along with bad headaches. I have had so many SGNB's they just don't t help after 11 years. I also get those horrible chills that go up and down my spine. It could be the meds in your SGNB's....but I get them also and I 'm not receiving SGNB's. It could be a neurological consequence because RSD is neurological. The med I referred to that I take once a year IV for osteo is in a catagory of drugs like Pamidronate. I have read "RSD IN ME". Any info I find helpful. When I mentioned that the holidays make me sick it just means I have a tendency to do more than I should. Because RSD is neurological the stress just wears me out. My body tells me I 'm overdoing it. I do best in a quiet peaceful environment. I do hope you are feeling better.

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