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NEW info on intrathecal pain pump....

2

Comments

  • LOL - Are you allowed to even use the "Y" word?
  • dilaurodilauro ConnecticutPosts: 13,584
    soliciting other members to join another site is.

    We had a situation like this almost two years ago. It was much more serious. It created a huge rift in the Spine-Health membership. Many members left, many members joined other sites, two moderators were immediately removed from their positions and their Spine-Health membership's revoked permanently.

    Living through all of that, as many of our current moderators have, we do not want to see any recap of that again.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • oops...sorry, I think I mentioned that name too...but was invited to join.

    Julie, excellent post. She is absolutely right Dave! There is no way to tell who is in more pain or who is suffering more. I happen to have a great doctor who will not let me suffer. Other's doctors are not as compassionate, unfortunately...and I've been in those offices before as well. my PM was such a sweetie pie...but she was very conservative with certain meds and how much. I remember when I was having headaches constantly...lots of migraines and she referred me to a neurologist...well he almost had a fit with the percocet I was taking (plus he was a jerk and said that I shouldn't be hurting so bad accourding to my MRI at the time). Well he jerked me off percocet thinking they were rebound headaches from oxycondone and stuck me on 50mcg fentanyl patch. I was falling asleep standing up. About 48 hours later, I was sleeping, it was 2am and I projectile vomited all over me and hubby and I did it in my sleep....those were the start of withdrawls from the oxy...horrible 3 days!! I called and got the patch decreased to 25 and it was better.

    Where am I going with this rant? That perhaps I'm a whimp and have a very low tolerance for pain (I do admit to it). So, just b/c I'm on more meds than you doesn't mean a thing. You've had a few surgeries...I've had none. Now, my condition has obviously progressed if I got SSD (I'd like to tell that neurologist who was so rude to me)...but pain is just different for each person. I know you suffer too, as most do on this site, and your daughter as well...bless her heart. Thanks Julie for the explanation.

    Thanks meydey for your post. I guess there are not too many pumps on this site. I appreciate your honesty and your time.
  • oh yeah Dave....I'm really sorry about those injections. I think its a conspiracey (hahaha)...all these injections. Perhaps they help some, but they did nothing for me and I know alot of people that they didn't help.

    i decided after 2 years seeing a PM who is an anesthesiologist who did all my injections (trigger point and epidurals)...i decided to go to a "SPine doctor". Well, he came in, talked about 2 minutes...did not examine me at all and then scheduled me for a set of 3 epidurals. My hubby and I cancelled the appt's when we got home and felt that these "injections" are a nice money making tool. I never thought that until I went to this Spine specialist...although no injection never helped me at all..but he threw up a red flag to me. I decided that day no more injections...I had done enough of them without relief. But perhaps they help others.
  • I am sorry for the infraction, I will be observant of the rules because I truly love this site. I have gotten so much info and inspiration from you all. Actually I didn't know I did any thing wrong until the explanation. Makes sense to me. I'm one of those that hits the accept box without reading all the fine print, BUSTED...LOL
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  • BEP, one thing I've noticed is the infraction is noted and then we move on. There is no lingering "grudge" from the moderators or admins. I think that says a lot about the objectivity of the authority team.

    Please don't feel so badly!

    Take Care,
    Dave
  • yes (nodding) I am the same way! I don't read alln the fine print.
  • Long post!!
    I have only had my pain pump implant since June of this year so I am a newbie with the pump. I will try to answer your questions as best I can.
    (1) no, I am not off all oral meds YET. But I have cut them down from 5 Oxycodone a day to 3 a day. I do have flare upe in my pain that require extra meds. The pump only takes care of your "normal" pain level. There is a hand held device that you can use to give yourself an extra dose of meds through your pump when you feel a need to or during flare ups. It is called a PTM and you must get one at the time of your implant for the insurance to pay for it. That is important to remember when talking to your Doctor about an implant.
    (2) no, there is no discomfort at all when sitting but when I bend down while sitting it bumps my leg but there is no discomfort. I do not even think about it. It is large, about the size of a hocky puck and does protrude a bit. I have the larger pump, 40ml size. It does not have to be refilled as often. It is in my left side just below my ribs. The only down side I have found with my pump is the size. I can no longer wear slacks that zip up or are snug in the waist because of the pump...but that is no biggie to me. It is the pain relief that is important.
    (3) My balance is very bad and I had trouble walking long before my pump implant. And my balance has not improved since my implant. I do believe once my pain is under control, down to a level I can live with, my balance will improve. I have yet to find out just what is causing my balance issues but I hope to see a Neruologist soon to see if they can pin point just what is causing it.
    (4) As for the relief I now get. I am getting good relief in some ways but still have a long way to go. I was started out on a very, very low dose of Diladuid. I am still on less than 1 mg of Diladuid a day. I had savage pain in both my feet and legs up to my knees. The pain was constant. They pounded and throbbed 24/7! I now have NO pain when sitting or laying down. I can now sleep all night without pain keeping me awake. To me that is wonderful. But I still have pain when I am on my feet. Not as bad as it was but still very bad. I also have flare ups that are savage. I go in the 15th for another increase. I can go in every 2 weeks now for an increase if needed. I still have a long way to go but I know I will get to a level I can live with. It is up to your Doctor how much meds he starts you out on and how often he gives increases. It is also up to your Doctor on how he does trials. Some Doctors just give one injection of morphine,(usually) some have you in the Hospital for 3 days or longer giving you one injection a day through a temp catheter placed in your spine. Some doctors send you home with an external pump for several days.
    (5) If the catheter breaks it must surgically be replaced. I have not have mine replaced so I can't go into any detail. I do know that if you suspect there is a problem with the catheter they will do a dye test to make sure there is a problem before they do any surgery. I can only tell you what others have said who have had this done and they say there is nothing to it. No worse than having the permanent implant. You may be a bit sore but that is all.
    (6) I believe all insurance co. will pay for an implant but can't say for sure. So I will not go there.
    (7) The psych eval is something insurance companies require. They want to see if you suffer from depression and if you do they ask that it be treated. There is nothing to it really.
    There is a possibility that you can get a spinal leak headache. I was scared to death that I would but I did not. A good Doctor knows what he is doing and chances of this happening are slim...but it can. I was scared to death that I would have a spinal leak but I did not. His nurse told me that did happen sometimes but not often.
    There is a very rare chance that a mass will form at the tip of the catheter making it difficult to remove but that is very rare. I have no fear of this at all.
    Pain pumps are not dangerous as some will lead you to believe. I do not worry about mine and hardly think of it. Because the meds go directly into the spine you do not feel drugged....only a reduction in your pain. Side effects are cut down because the meds do not go through your system.
    I am very happy with my pump and love the pain relief it gives me. I am getting my life back at long last.
    If anyone would like to send me a PM I can tell you important questions to ask your Doctor before you have an implant. No, you do not have to try the SCS first before you have a pain pump implant.
    The pain relief feels natural. No drugged feeling and I have no side effects. It is the very best choice for me that I could have made.
    Feel free to PM me with any questions you may have. I am here to help....if I can.
    Cheers :H
    Patsy W
  • Patsy, as I've already told you, thank you so much for answering so many of our questions...we apprciate it so much!
  • Again rather long......Sorry
    You are more than welcome tarheelgirl.
    Pep...I did forget to mentiona couple of questions you had ask.
    One.....I did not feel instant relief during my trial but I did feel relief within an hour and a half after my injection. The ammount of relief you may feel will vary from patient to patient. Some feel a great deal of relief and some slight.
    As for returning to work after your pain is reduced to a level you can live with. I believe that is up to you and the kind of work you do. Some people have other problems, such as Meydey, that prevents them from returning to work. I am self emplayed and am back to work when I am able. I am still a newbie with my pain pump....but a happy newbie.
    And please remember the doses of meds that you recieve through a pain pump are in micrograms not milligrams. Only tiny amounts are required because it goes directly to the spinal cord, not through your system.
    Bep ask if I would have did anything diferently. No I would not have. I am very happy with my choice of having a pain pump implant. It has given me the first real pain relief I have had since this chronic pain started. What is not to love about something that reduces your savage pain?
    Please remember I can only speak about MY experances.
    I do hope everyone finds a way to reduce or better yet eleminate all your pain.
    I know I will never be pain free.....the best we can hope for is a reduction in our pain level. A level we can live with.
    Sorry for such a long post.....again.

    Cheers :H
    Patsy W


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