Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Dale, where do you live and where was the surgery done? What is the main problem? I am just so sorry you are having trouble a year later. Diane dale wrote: And still having huge problems, end of this month will be one year... dale Re: your various e-mails > > Diane, > > I dont have the pump myself, but I know Dale has had a heck of a time > getting things right with his. Sandy > ----- Original Message ----- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Dale, where do you live and where was the surgery done? What is the main problem? I am just so sorry you are having trouble a year later. Diane dale wrote: And still having huge problems, end of this month will be one year... dale Re: your various e-mails > > Diane, > > I dont have the pump myself, but I know Dale has had a heck of a time > getting things right with his. Sandy > ----- Original Message ----- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Dale, where do you live and where was the surgery done? What is the main problem? I am just so sorry you are having trouble a year later. Diane dale wrote: And still having huge problems, end of this month will be one year... dale Re: your various e-mails > > Diane, > > I dont have the pump myself, but I know Dale has had a heck of a time > getting things right with his. Sandy > ----- Original Message ----- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Horrid problems, most know about it but I will write later, my sister leaves on Wed. dale Re: your various e-mails > > Dale, where do you live and where was the surgery done? What is the main > problem? I am just so sorry you are having trouble a year later. > > Diane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Diane, The story is long and I don't have the energy to write all the details. A short version: I was considered a perfect fit, oral Baclofen worked wonders but I got very sick on dosages over 30 mg. The spinal test was great and the scheduled me for a 2.5 day surgery/recovery. It turned into 30 days, woke totally paralyzed but that slowly went away, had headaches, nausea (lost 25 lbs) many more, as they said, I had every side affect known. I ODed twice on baclofen and had drug reactions to two other meds to try and control the pain. In short I could us a walker before the pump and was in pain. Today, I am in an electric w/c, legs totally ridged, in much more pain and have lost most use of my body, speech and swallowing... dale Re: your various e-mails > > Dale, where do you live and where was the surgery done? What is the main > problem? I am just so sorry you are having trouble a year later. > > Diane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Don't EVER be sorry for good results, while I admit I do get envious and go " why me " I am very happy for you. Think how hopeless we would be if nothing worked for any of us!!! I am just one of the few, the proud, the , no wait that's the Marines... It was done here in the Springs and the surgery was a great success. It's my body's reaction to the meds that has nearly killed me a few times. I have 3 neurs that cannot figure out why I am reacting so differently. The surgeon who did has done over 100 and I am the first patient that has had a negative reaction. Just call me lucky, dale Re: your various e-mails > > Dale, who did your surgery and where? I am really shocked and saddened by > your story. What do the doctors have to say as to what happened to you? I > am so sorry for being so upbeat about my baclofen pump after hearing what > happened to you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Don't EVER be sorry for good results, while I admit I do get envious and go " why me " I am very happy for you. Think how hopeless we would be if nothing worked for any of us!!! I am just one of the few, the proud, the , no wait that's the Marines... It was done here in the Springs and the surgery was a great success. It's my body's reaction to the meds that has nearly killed me a few times. I have 3 neurs that cannot figure out why I am reacting so differently. The surgeon who did has done over 100 and I am the first patient that has had a negative reaction. Just call me lucky, dale Re: your various e-mails > > Dale, who did your surgery and where? I am really shocked and saddened by > your story. What do the doctors have to say as to what happened to you? I > am so sorry for being so upbeat about my baclofen pump after hearing what > happened to you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Don't EVER be sorry for good results, while I admit I do get envious and go " why me " I am very happy for you. Think how hopeless we would be if nothing worked for any of us!!! I am just one of the few, the proud, the , no wait that's the Marines... It was done here in the Springs and the surgery was a great success. It's my body's reaction to the meds that has nearly killed me a few times. I have 3 neurs that cannot figure out why I am reacting so differently. The surgeon who did has done over 100 and I am the first patient that has had a negative reaction. Just call me lucky, dale Re: your various e-mails > > Dale, who did your surgery and where? I am really shocked and saddened by > your story. What do the doctors have to say as to what happened to you? I > am so sorry for being so upbeat about my baclofen pump after hearing what > happened to you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 I sure wish a miracle WOULD happen. Diane dale wrote: Oh yes, I go almost weekly to one of two neurs. The problem is I have a severe reaction which causes the PLS to flare up. I get better but each time I lose something or something stays worse, last time it was my bulbar... It is depressing trying these things and not just having them not work but almost kill you (or at least it feels that way). The last one was an opium patch for pain. Because of my reactions they used the weakest dose there is. It takes 48hrs to go to full power, the first morning I woke feeling great with most of my pain gone! We were ecstatic, going what a miracle. The next morning I woke but didn't feel as good and the third morning I woke to great pain and the body ridged from my mid chest down. Took me 5 hours to get out of bed and of course we pulled the patch but it took over 3 weeks for the effects to ware off and as I said, the bulbar, while some better, never came back. I am told that there is really nothing left to try, we are lowering the baclofen and am trying V-stim next week but that's all that's left. enough for now. dale Re: your various e-mails > > >> >> Dale, who did your surgery and where? I am really shocked and saddened by >> your story. What do the doctors have to say as to what happened to you? I >> am so sorry for being so upbeat about my baclofen pump after hearing what >> happened to you. >> > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 I sure wish a miracle WOULD happen. Diane dale wrote: Oh yes, I go almost weekly to one of two neurs. The problem is I have a severe reaction which causes the PLS to flare up. I get better but each time I lose something or something stays worse, last time it was my bulbar... It is depressing trying these things and not just having them not work but almost kill you (or at least it feels that way). The last one was an opium patch for pain. Because of my reactions they used the weakest dose there is. It takes 48hrs to go to full power, the first morning I woke feeling great with most of my pain gone! We were ecstatic, going what a miracle. The next morning I woke but didn't feel as good and the third morning I woke to great pain and the body ridged from my mid chest down. Took me 5 hours to get out of bed and of course we pulled the patch but it took over 3 weeks for the effects to ware off and as I said, the bulbar, while some better, never came back. I am told that there is really nothing left to try, we are lowering the baclofen and am trying V-stim next week but that's all that's left. enough for now. dale Re: your various e-mails > > >> >> Dale, who did your surgery and where? I am really shocked and saddened by >> your story. What do the doctors have to say as to what happened to you? I >> am so sorry for being so upbeat about my baclofen pump after hearing what >> happened to you. >> > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 I sure wish a miracle WOULD happen. Diane dale wrote: Oh yes, I go almost weekly to one of two neurs. The problem is I have a severe reaction which causes the PLS to flare up. I get better but each time I lose something or something stays worse, last time it was my bulbar... It is depressing trying these things and not just having them not work but almost kill you (or at least it feels that way). The last one was an opium patch for pain. Because of my reactions they used the weakest dose there is. It takes 48hrs to go to full power, the first morning I woke feeling great with most of my pain gone! We were ecstatic, going what a miracle. The next morning I woke but didn't feel as good and the third morning I woke to great pain and the body ridged from my mid chest down. Took me 5 hours to get out of bed and of course we pulled the patch but it took over 3 weeks for the effects to ware off and as I said, the bulbar, while some better, never came back. I am told that there is really nothing left to try, we are lowering the baclofen and am trying V-stim next week but that's all that's left. enough for now. dale Re: your various e-mails > > >> >> Dale, who did your surgery and where? I am really shocked and saddened by >> your story. What do the doctors have to say as to what happened to you? I >> am so sorry for being so upbeat about my baclofen pump after hearing what >> happened to you. >> > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
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