Guest guest Report post Posted October 17, 2008 Hi Deb,  I think that it is awful that money dictates what medication we can and can't have. When there is something out there that really helps and you can't get it because of the cost is so unfair and wrong. I'm very lucky in that our local health authority covers most medicines and I only have to pay a small charge equivalent to about US$5. Sorry perhaps I shouldn't have told you that, its hardly going to make you feel any better.  Have you tried something like camomile lotion for the itching? I found that it helped sooth things.  Ketamine has many applications and yes it is known for its use by vets. It is an anaesthetic which has been used successfully in combat situations and things like road traffic accidents. One of its properties is that it apparently blocks the pain sensors in the brain so that the pain messages don't get through and I understand from my pain dr that in clinical tests it has been shown that after regular use in some cases it can continue to block the pain even after the patient stops taking it. It worked for me so much better than stuff like morphine and it doesn't have some of the nasty side effects that morphine has. I found that I can remain relatively alert and it doesn't zombiefy me like morphine did. I used to say that morhine didn't take the pain away its just that you didn't care damn about it! LOL It does have its drawbacks though, it is a powerful hallucinogenic and I had the misfortune to take an accidental overdose due to a mix up at the pharmacy. The hallucinations were terrible and I've been suffering with nightmares ever since. Our physiologies are all different and we react to drugs in different ways. What works for some doesn't necessarily work for others. Also my employers won't have me back at work as long as I'm taking it as its classed as a controlled substance. My advice would be to discuss it with your doctor he may be able to help. I am mindful of your problem with medication and your insurers and it could be that they would look at it the same way as they do the Lidocaine patches. I'm very lucky in that my pharmacy can arrange for the solution to be made up for me (it has to be specially made up and takes about a week to come through) and I only have to pay the $5 for a 500ml bottle. For some reason that I've not been able to work out It would appear that my pharmacy are the only ones over here that can do it for the $5 charge. I took my prescription to another pharmacy a while ago and they could only do it for a charge the equivalent of over $300. I'm certainly not going to query it with my pharmacy! LOL Also it tastes disgusting in plain suspension Yuk!! But it can come in assorted flavours. Unfortunately I can't take these as they are syrups full of sugar and I'm diabetic. So I take my dose in orange juice.  Hope this helps  Re: Re: Hello Hey ! In my opinion, a REAL man DOES show his emotions through tears of joy or sorrow...happiness or frustration. .good or bad...GOOD for you, !!! My dad always taught me that just because a person is a man...doesn' t mean that he doesn't have emotions just like women do...my dad retired a Captain in the Philadelphia, Pa police department. He was a police officer for 27 years...and the things that he witnessed and saw...brought him to tears...a lot happy, but all too many sad and horrific. That is why his family is so precious to him.....that he gets unconditional love from us and gives it right back. Alright...enough about my dad...sorry. .. I was so glad to hear that the mail cheers you up...that is awesome, my friend! It sounds like the EMDR is helping you....that is terrific!! I hope it continues to really help you out!! Sorry to hear about your sleepless night....dear Lord, can I understand! I get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does catch up with you and kicks you in the butt...especially when driving...so I always make sure that the coffee pot is on during the day....it has become my brand new friend...God bless Caffeine...LOL It does sound promising about the neurosurgeon' s response...at least your case is still not on his/her pending pile on his/her desk...which I am sure is highly piled to the ceiling...LOL It is great that they are going to replace the whole unit and reposition the generator into your abdomen instead of your butt...I am sure that this must be uncomfortable and a wee bit embarrassing when you are turning it on and off via your butt...the crowds of strangers must love you...LOL Mine are in my very low back...near my hips...they hurt so badly now. My back is just killing me from them...but we have to take the good with the bad...right? It must be so frustrating for you to say the least, . I thought it was hard for me making plans for my daughter when I am in the hospital...especial ly when she was a wee one...but GEEZE...you really have a time of it..it must be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL When you are ready to fly again.....what you could do is call the airline ahead of time and let them know that you have a disability and you have a spinal stimulator.. and explain what that is to them...maybe asking for a supervisor might be the best route to go. This way, you can find out what the best way to handle the situation will be. When I flew to Jamaica for my honeymoon, that is what I did. They were very kind to me. In addition to the stim, I absolutely must bring my portable nebulizer with me..I have severe asthma. Well.....I didn't mention this to them,,,,and even though I had a note from my physician on letter head paper and a note from the medical supply company explaining what the machine was...they actually poured five of my vials out.....I was really upset, but wasn't too surprised... this was Novermber 12, 2001....right after 9-11-01. Another thing that might really help is when you call, if you call ahead, ask for a wheelchair to be waiting for you....tellign them that you have a disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say was you have a disability. I really think that we all should stress this...we are ourselves first..we are people..who happen to have a problem, but we are NOT our problem. I read somewhere once.... " would you call a cancer patient cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should be the same thing for us...ie I have a disability.. .I am NOT disabled. I am a 39 year old happily married mom of a beautiful 17 year old daughter, who has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the topic..there. ..but that way with the wheelchair.. .they will see that you have an illness and will not jostle you around. The flight must be hell for you after surgery!! I am so sorry that you have to deal with that! Does your neurosurgeon know of any short term facilities that you can recuperate from prior to going home on the plane? Does anyone fly out with you..If so....perhaps, you could stay at a hotel near the hospital after they discharge you just for a few days where youwon't be so raw from the pain. Just some ideas....I hope you have great luck with everything, ...From what you have been through..you are entitled for a break by now! thanks for asking for me...things are better right now...the pain is still horrendous.. .as always...but thank God the spasms have stopped...they brought me to my knees this time. I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of one of my batteries..it is 8 years old...so it is time..the stim is not working now..so I want to get it done asap, but I developed severe cellulitis in my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in the leg again....so I had to wait until the infection and wound has cleared up...which I think it has so...I am keeping my fingers and toes and eyes (when not driving) crossed for good luck!! They will replace the battery and at the same time add three more leads to the stim for my legs....so hopefully the stimulation will hit the ankles and feet, as no stim is hitting them now...it is actually " jumping " over the damned ankles. Well...I have gone on long enough now...best of luck to you and let me know how you make out! Love, Kathy G. Group Co-owner ************ **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local. mapquest. com/?ncid= emlcntnew0000000 2) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 18, 2008 I fight with my prescription company constantly, I have 16 prescriptions to buy and they give me a hard time alot! They cost too much too! > > Hi Deb, >  > I think that it is awful that money dictates what medication we can and can't have. When there is something out there that really helps and you can't get it because of the cost is so unfair and wrong. I'm very lucky in that our local health authority covers most medicines and I only have to pay a small charge equivalent to about US$5. Sorry perhaps I shouldn't have told you that, its hardly going to make you feel any better. >  > Have you tried something like camomile lotion for the itching? I found that it helped sooth things. >  > Ketamine has many applications and yes it is known for its use by vets. It is an anaesthetic which has been used successfully in combat situations and things like road traffic accidents. One of its properties is that it apparently blocks the pain sensors in the brain so that the pain messages don't get through and I understand from my pain dr that in clinical tests it has been shown that after regular use in some cases it can continue to block the pain even after the patient stops taking it. It worked for me so much better than stuff like morphine and it doesn't have some of the nasty side effects that morphine has. I found that I can remain relatively alert and it doesn't zombiefy me like morphine did. I used to say that morhine didn't take the pain away its just that you didn't care damn about it! LOL It does have its drawbacks though, it is a powerful hallucinogenic and I had the misfortune to take an accidental overdose due to a mix up at the > pharmacy. The hallucinations were terrible and I've been suffering with nightmares ever since. Our physiologies are all different and we react to drugs in different ways. What works for some doesn't necessarily work for others. Also my employers won't have me back at work as long as I'm taking it as its classed as a controlled substance. My advice would be to discuss it with your doctor he may be able to help. I am mindful of your problem with medication and your insurers and it could be that they would look at it the same way as they do the Lidocaine patches. I'm very lucky in that my pharmacy can arrange for the solution to be made up for me (it has to be specially made up and takes about a week to come through) and I only have to pay the $5 for a 500ml bottle. For some reason that I've not been able to work out It would appear that my pharmacy are the only ones over here that can do it for the $5 charge. I took my prescription to another pharmacy a > while ago and they could only do it for a charge the equivalent of over $300. I'm certainly not going to query it with my pharmacy! LOL Also it tastes disgusting in plain suspension Yuk!! But it can come in assorted flavours. Unfortunately I can't take these as they are syrups full of sugar and I'm diabetic. So I take my dose in orange juice. >  > Hope this helps >  > > > > > Re: Re: Hello > > Hey ! > > In my opinion, a REAL man DOES show his emotions through tears of joy or > sorrow...happiness or frustration. .good or bad...GOOD for you, !!! > > My dad always taught me that just because a person is a man...doesn' t mean > that he doesn't have emotions just like women do...my dad retired a Captain in > the Philadelphia, Pa police department. He was a police officer for 27 > years...and the things that he witnessed and saw...brought him to tears...a lot > happy, but all too many sad and horrific. That is why his family is so > precious to him.....that he gets unconditional love from us and gives it right back. > Alright...enough about my dad...sorry. .. > > I was so glad to hear that the mail cheers you up...that is awesome, my > friend! > > It sounds like the EMDR is helping you....that is terrific!! I hope it > continues to really help you out!! > > Sorry to hear about your sleepless night....dear Lord, can I understand! I > get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does > catch up with you and kicks you in the butt...especially when driving...so I > always make sure that the coffee pot is on during the day....it has become my > brand new friend...God bless Caffeine...LOL > > It does sound promising about the neurosurgeon' s response...at least your > case is still not on his/her pending pile on his/her desk...which I am sure is > highly piled to the ceiling...LOL > > It is great that they are going to replace the whole unit and reposition the > generator into your abdomen instead of your butt...I am sure that this must > be uncomfortable and a wee bit embarrassing when you are turning it on and > off via your butt...the crowds of strangers must love you...LOL > > Mine are in my very low back...near my hips...they hurt so badly now. My > back is just killing me from them...but we have to take the good with the > bad...right? > > It must be so frustrating for you to say the least, . I thought it was > hard for me making plans for my daughter when I am in the > hospital...especial ly when she was a wee one...but GEEZE...you really have a time of it..it must > be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL > > When you are ready to fly again.....what you could do is call the airline > ahead of time and let them know that you have a disability and you have a spinal > stimulator.. and explain what that is to them...maybe asking for a supervisor > might be the best route to go. This way, you can find out what the best way > to handle the situation will be. When I flew to Jamaica for my honeymoon, > that is what I did. They were very kind to me. In addition to the stim, I > absolutely must bring my portable nebulizer with me..I have severe asthma. > Well.....I didn't mention this to them,,,,and even though I had a note from my > physician on letter head paper and a note from the medical supply company > explaining what the machine was...they actually poured five of my vials out.....I > was really upset, but wasn't too surprised... this was Novermber 12, > 2001....right after 9-11-01. > > Another thing that might really help is when you call, if you call ahead, > ask for a wheelchair to be waiting for you....tellign them that you have a > disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say > was you have a disability. I really think that we all should stress this...we > are ourselves first..we are people..who happen to have a problem, but we are > NOT our problem. I read somewhere once.... " would you call a cancer patient > cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should > be the same thing for us...ie I have a disability.. .I am NOT disabled. I am > a 39 year old happily married mom of a beautiful 17 year old daughter, who > has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the > topic..there. ..but that way with the wheelchair.. .they will see that you have > an illness and will not jostle you around. > > The flight must be hell for you after surgery!! I am so sorry that you have > to deal with that! Does your neurosurgeon know of any short term facilities > that you can recuperate from prior to going home on the plane? Does anyone > fly out with you..If so....perhaps, you could stay at a hotel near the > hospital after they discharge you just for a few days where youwon't be so raw from > the pain. Just some ideas....I hope you have great luck with everything, > ...From what you have been through..you are entitled for a break by now! > > thanks for asking for me...things are better right now...the pain is still > horrendous.. .as always...but thank God the spasms have stopped...they brought > me to my knees this time. > > I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of > one of my batteries..it is 8 years old...so it is time..the stim is not > working now..so I want to get it done asap, but I developed severe cellulitis in > my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in > the leg again....so I had to wait until the infection and wound has cleared > up...which I think it has so...I am keeping my fingers and toes and eyes > (when not driving) crossed for good luck!! > > They will replace the battery and at the same time add three more leads to > the stim for my legs....so hopefully the stimulation will hit the ankles and > feet, as no stim is hitting them now...it is actually " jumping " over the damned > ankles. > > Well...I have gone on long enough now...best of luck to you and let me know > how you make out! > > Love, > > Kathy G. > Group Co-owner > > ************ **New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local. mapquest. com/?ncid= emlcntnew0000000 2) > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 18, 2008 , Interesting when you say that your company won’t let you work as long as you are on controlled drugs....what type of work did you do? Interesting cause as a ICU RN my employer knew exactly how much medicine I was on and did not have a problem with it........Deb RN From: Stimulator [mailto:Stimulator ] On Behalf Of Margee' Sent: Saturday, October 18, 2008 8:10 AM Stimulator Subject: Re: Hello I fight with my prescription company constantly, I have 16 prescriptions to buy and they give me a hard time alot! They cost too much too! > > Hi Deb, >  > I think that it is awful that money dictates what medication we can and can't have. When there is something out there that really helps and you can't get it because of the cost is so unfair and wrong. I'm very lucky in that our local health authority covers most medicines and I only have to pay a small charge equivalent to about US$5. Sorry perhaps I shouldn't have told you that, its hardly going to make you feel any better. >  > Have you tried something like camomile lotion for the itching? I found that it helped sooth things. >  > Ketamine has many applications and yes it is known for its use by vets. It is an anaesthetic which has been used successfully in combat situations and things like road traffic accidents. One of its properties is that it apparently blocks the pain sensors in the brain so that the pain messages don't get through and I understand from my pain dr that in clinical tests it has been shown that after regular use in some cases it can continue to block the pain even after the patient stops taking it. It worked for me so much better than stuff like morphine and it doesn't have some of the nasty side effects that morphine has. I found that I can remain relatively alert and it doesn't zombiefy me like morphine did. I used to say that morhine didn't take the pain away its just that you didn't care damn about it! LOL It does have its drawbacks though, it is a powerful hallucinogenic and I had the misfortune to take an accidental overdose due to a mix up at the > pharmacy. The hallucinations were terrible and I've been suffering with nightmares ever since. Our physiologies are all different and we react to drugs in different ways. What works for some doesn't necessarily work for others. Also my employers won't have me back at work as long as I'm taking it as its classed as a controlled substance. My advice would be to discuss it with your doctor he may be able to help. I am mindful of your problem with medication and your insurers and it could be that they would look at it the same way as they do the Lidocaine patches. I'm very lucky in that my pharmacy can arrange for the solution to be made up for me (it has to be specially made up and takes about a week to come through) and I only have to pay the $5 for a 500ml bottle. For some reason that I've not been able to work out It would appear that my pharmacy are the only ones over here that can do it for the $5 charge. I took my prescription to another pharmacy a > while ago and they could only do it for a charge the equivalent of over $300. I'm certainly not going to query it with my pharmacy! LOL Also it tastes disgusting in plain suspension Yuk!! But it can come in assorted flavours. Unfortunately I can't take these as they are syrups full of sugar and I'm diabetic. So I take my dose in orange juice. >  > Hope this helps >  > > > > > Re: Re: Hello > > Hey ! > > In my opinion, a REAL man DOES show his emotions through tears of joy or > sorrow...happiness or frustration. .good or bad...GOOD for you, !!! > > My dad always taught me that just because a person is a man...doesn' t mean > that he doesn't have emotions just like women do...my dad retired a Captain in > the Philadelphia, Pa police department. He was a police officer for 27 > years...and the things that he witnessed and saw...brought him to tears...a lot > happy, but all too many sad and horrific. That is why his family is so > precious to him.....that he gets unconditional love from us and gives it right back. > Alright...enough about my dad...sorry. .. > > I was so glad to hear that the mail cheers you up...that is awesome, my > friend! > > It sounds like the EMDR is helping you....that is terrific!! I hope it > continues to really help you out!! > > Sorry to hear about your sleepless night....dear Lord, can I understand! I > get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does > catch up with you and kicks you in the butt...especially when driving...so I > always make sure that the coffee pot is on during the day....it has become my > brand new friend...God bless Caffeine...LOL > > It does sound promising about the neurosurgeon' s response...at least your > case is still not on his/her pending pile on his/her desk...which I am sure is > highly piled to the ceiling...LOL > > It is great that they are going to replace the whole unit and reposition the > generator into your abdomen instead of your butt...I am sure that this must > be uncomfortable and a wee bit embarrassing when you are turning it on and > off via your butt...the crowds of strangers must love you...LOL > > Mine are in my very low back...near my hips...they hurt so badly now. My > back is just killing me from them...but we have to take the good with the > bad...right? > > It must be so frustrating for you to say the least, . I thought it was > hard for me making plans for my daughter when I am in the > hospital...especial ly when she was a wee one...but GEEZE...you really have a time of it..it must > be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL > > When you are ready to fly again.....what you could do is call the airline > ahead of time and let them know that you have a disability and you have a spinal > stimulator.. and explain what that is to them...maybe asking for a supervisor > might be the best route to go. This way, you can find out what the best way > to handle the situation will be. When I flew to Jamaica for my honeymoon, > that is what I did. They were very kind to me. In addition to the stim, I > absolutely must bring my portable nebulizer with me..I have severe asthma. > Well.....I didn't mention this to them,,,,and even though I had a note from my > physician on letter head paper and a note from the medical supply company > explaining what the machine was...they actually poured five of my vials out.....I > was really upset, but wasn't too surprised... this was Novermber 12, > 2001....right after 9-11-01. > > Another thing that might really help is when you call, if you call ahead, > ask for a wheelchair to be waiting for you....tellign them that you have a > disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say > was you have a disability. I really think that we all should stress this...we > are ourselves first..we are people..who happen to have a problem, but we are > NOT our problem. I read somewhere once.... " would you call a cancer patient > cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should > be the same thing for us...ie I have a disability.. .I am NOT disabled. I am > a 39 year old happily married mom of a beautiful 17 year old daughter, who > has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the > topic..there. ..but that way with the wheelchair.. .they will see that you have > an illness and will not jostle you around. > > The flight must be hell for you after surgery!! I am so sorry that you have > to deal with that! Does your neurosurgeon know of any short term facilities > that you can recuperate from prior to going home on the plane? Does anyone > fly out with you..If so....perhaps, you could stay at a hotel near the > hospital after they discharge you just for a few days where youwon't be so raw from > the pain. Just some ideas....I hope you have great luck with everything, > ...From what you have been through..you are entitled for a break by now! > > thanks for asking for me...things are better right now...the pain is still > horrendous.. .as always...but thank God the spasms have stopped...they brought > me to my knees this time. > > I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of > one of my batteries..it is 8 years old...so it is time..the stim is not > working now..so I want to get it done asap, but I developed severe cellulitis in > my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in > the leg again....so I had to wait until the infection and wound has cleared > up...which I think it has so...I am keeping my fingers and toes and eyes > (when not driving) crossed for good luck!! > > They will replace the battery and at the same time add three more leads to > the stim for my legs....so hopefully the stimulation will hit the ankles and > feet, as no stim is hitting them now...it is actually " jumping " over the damned > ankles. > > Well...I have gone on long enough now...best of luck to you and let me know > how you make out! > > Love, > > Kathy G. > Group Co-owner > > ************ **New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local. mapquest. com/?ncid= emlcntnew0000000 2) > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 19, 2008 Hi Deb, Â I work for a local law firm, in their financial services department so I'm dealing with other peoples money all the time. Its just their rules. The partners in the firm have been incredibly supportive while I've been away from the office. Â Re: Re: Hello > > Hey ! > > In my opinion, a REAL man DOES show his emotions through tears of joy or > sorrow...happiness or frustration. .good or bad...GOOD for you, !!! > > My dad always taught me that just because a person is a man...doesn' t mean > that he doesn't have emotions just like women do...my dad retired a Captain in > the Philadelphia, Pa police department. He was a police officer for 27 > years...and the things that he witnessed and saw...brought him to tears...a lot > happy, but all too many sad and horrific. That is why his family is so > precious to him......that he gets unconditional love from us and gives it right back. > Alright...enough about my dad...sorry. .. > > I was so glad to hear that the mail cheers you up...that is awesome, my > friend! > > It sounds like the EMDR is helping you....that is terrific!! I hope it > continues to really help you out!! > > Sorry to hear about your sleepless night....dear Lord, can I understand! I > get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does > catch up with you and kicks you in the butt...especially when driving...so I > always make sure that the coffee pot is on during the day....it has become my > brand new friend...God bless Caffeine...LOL > > It does sound promising about the neurosurgeon' s response...at least your > case is still not on his/her pending pile on his/her desk...which I am sure is > highly piled to the ceiling...LOL > > It is great that they are going to replace the whole unit and reposition the > generator into your abdomen instead of your butt...I am sure that this must > be uncomfortable and a wee bit embarrassing when you are turning it on and > off via your butt....the crowds of strangers must love you...LOL > > Mine are in my very low back...near my hips...they hurt so badly now. My > back is just killing me from them...but we have to take the good with the > bad...right? > > It must be so frustrating for you to say the least, . I thought it was > hard for me making plans for my daughter when I am in the > hospital...especial ly when she was a wee one...but GEEZE...you really have a time of it..it must > be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL > > When you are ready to fly again.....what you could do is call the airline > ahead of time and let them know that you have a disability and you have a spinal > stimulator.. and explain what that is to them...maybe asking for a supervisor > might be the best route to go. This way, you can find out what the best way > to handle the situation will be. When I flew to Jamaica for my honeymoon, > that is what I did. They were very kind to me. In addition to the stim, I > absolutely must bring my portable nebulizer with me..I have severe asthma. > Well.....I didn't mention this to them,,,,and even though I had a note from my > physician on letter head paper and a note from the medical supply company > explaining what the machine was...they actually poured five of my vials out.....I > was really upset, but wasn't too surprised... this was Novermber 12, > 2001....right after 9-11-01. > > Another thing that might really help is when you call, if you call ahead, > ask for a wheelchair to be waiting for you.....tellign them that you have a > disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say > was you have a disability. I really think that we all should stress this...we > are ourselves first..we are people..who happen to have a problem, but we are > NOT our problem. I read somewhere once.... " would you call a cancer patient > cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should > be the same thing for us...ie I have a disability.. .I am NOT disabled. I am > a 39 year old happily married mom of a beautiful 17 year old daughter, who > has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the > topic..there. ..but that way with the wheelchair.. .they will see that you have > an illness and will not jostle you around. > > The flight must be hell for you after surgery!! I am so sorry that you have > to deal with that! Does your neurosurgeon know of any short term facilities > that you can recuperate from prior to going home on the plane? Does anyone > fly out with you..If so.....perhaps, you could stay at a hotel near the > hospital after they discharge you just for a few days where youwon't be so raw from > the pain. Just some ideas....I hope you have great luck with everything, > ...From what you have been through..you are entitled for a break by now! > > thanks for asking for me...things are better right now...the pain is still > horrendous.. .as always...but thank God the spasms have stopped...they brought > me to my knees this time. > > I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of > one of my batteries..it is 8 years old...so it is time..the stim is not > working now..so I want to get it done asap, but I developed severe cellulitis in > my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in > the leg again....so I had to wait until the infection and wound has cleared > up...which I think it has so...I am keeping my fingers and toes and eyes > (when not driving) crossed for good luck!! > > They will replace the battery and at the same time add three more leads to > the stim for my legs....so hopefully the stimulation will hit the ankles and > feet, as no stim is hitting them now...it is actually " jumping " over the damned > ankles. > > Well...I have gone on long enough now...best of luck to you and let me know > how you make out! > > Love, > > Kathy G. > Group Co-owner > > ************ **New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local. mapquest. com/?ncid= emlcntnew0000000 2) > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 21, 2008 Hey ! sorry for not getting back to you...things are not good on my end, yet again. Pain is intense. When it gets this bad, I usually pass out. This time, unfortunatley, the sink got in the way and I banged the hell out of my head....perhaps it will knock some sense into me...ha ha..but seriously...this is getting really old and I am afraid that next time I really will hurt myself. I have already broken my arm from a fall. I am so glad about your trip...it will be so much easier this way for you....it still must be very hard to have to travel so far after surgery, though. Thanks, , yes, my dad is an amazing peron, you are sweet for saying that, my friend...or writing that..lol Oh no...pink eye...that sucks!!! And shingles ...oh my gosh..you have had your torture for the year!! You are kind to call me strong...and I think the same of you, . Even though you have all these barriers, you still overcome them all...that is strength!! Don't ever aoplogize for asking me ANY questions, , that is how we can help eachother and other members who read this...that is one of thegrat things about our group!! My first stim was done 15 years ago for the RSD in my arms, wrists and hands. It is helping them a great deal...thank God!! The second stim is for my legs...especially the left one....it is absolutley the worst RSD I have ever had. Hate to cut out so soon..but reall yhurting. gentle hugs to all kathy g. co-owner **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local.mapquest.com/?ncid=emlcntnew00000002) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 22, 2008 , Legally how can the law firm dictate what medications you take with a doctor’s prescription. I can’t believe they can say this...when they do drug tests...first they are conducted by medical people and the results only go to the company when a person does not have a prescription for what shows up in their urine. Why are they paranoid about the drugs? Deb RN From: Stimulator [mailto:Stimulator ] On Behalf Of Woolrich Sent: Sunday, October 19, 2008 8:32 AM Stimulator Subject: Re: Re: Hello Hi Deb, I work for a local law firm, in their financial services department so I'm dealing with other peoples money all the time. Its just their rules. The partners in the firm have been incredibly supportive while I've been away from the office. Re: Re: Hello > > Hey ! > > In my opinion, a REAL man DOES show his emotions through tears of joy or > sorrow...happiness or frustration. .good or bad...GOOD for you, !!! > > My dad always taught me that just because a person is a man...doesn' t mean > that he doesn't have emotions just like women do...my dad retired a Captain in > the Philadelphia, Pa police department. He was a police officer for 27 > years...and the things that he witnessed and saw...brought him to tears...a lot > happy, but all too many sad and horrific. That is why his family is so > precious to him......that he gets unconditional love from us and gives it right back. > Alright...enough about my dad...sorry. .. > > I was so glad to hear that the mail cheers you up...that is awesome, my > friend! > > It sounds like the EMDR is helping you....that is terrific!! I hope it > continues to really help you out!! > > Sorry to hear about your sleepless night....dear Lord, can I understand! I > get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does > catch up with you and kicks you in the butt...especially when driving...so I > always make sure that the coffee pot is on during the day....it has become my > brand new friend...God bless Caffeine...LOL > > It does sound promising about the neurosurgeon' s response...at least your > case is still not on his/her pending pile on his/her desk...which I am sure is > highly piled to the ceiling...LOL > > It is great that they are going to replace the whole unit and reposition the > generator into your abdomen instead of your butt...I am sure that this must > be uncomfortable and a wee bit embarrassing when you are turning it on and > off via your butt....the crowds of strangers must love you...LOL > > Mine are in my very low back...near my hips...they hurt so badly now. My > back is just killing me from them...but we have to take the good with the > bad...right? > > It must be so frustrating for you to say the least, . I thought it was > hard for me making plans for my daughter when I am in the > hospital...especial ly when she was a wee one...but GEEZE...you really have a time of it..it must > be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL > > When you are ready to fly again.....what you could do is call the airline > ahead of time and let them know that you have a disability and you have a spinal > stimulator.. and explain what that is to them...maybe asking for a supervisor > might be the best route to go. This way, you can find out what the best way > to handle the situation will be. When I flew to Jamaica for my honeymoon, > that is what I did. They were very kind to me. In addition to the stim, I > absolutely must bring my portable nebulizer with me..I have severe asthma. > Well.....I didn't mention this to them,,,,and even though I had a note from my > physician on letter head paper and a note from the medical supply company > explaining what the machine was...they actually poured five of my vials out.....I > was really upset, but wasn't too surprised... this was Novermber 12, > 2001....right after 9-11-01. > > Another thing that might really help is when you call, if you call ahead, > ask for a wheelchair to be waiting for you.....tellign them that you have a > disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say > was you have a disability. I really think that we all should stress this...we > are ourselves first..we are people..who happen to have a problem, but we are > NOT our problem. I read somewhere once.... " would you call a cancer patient > cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should > be the same thing for us...ie I have a disability.. .I am NOT disabled. I am > a 39 year old happily married mom of a beautiful 17 year old daughter, who > has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the > topic..there. ..but that way with the wheelchair.. .they will see that you have > an illness and will not jostle you around. > > The flight must be hell for you after surgery!! I am so sorry that you have > to deal with that! Does your neurosurgeon know of any short term facilities > that you can recuperate from prior to going home on the plane? Does anyone > fly out with you..If so.....perhaps, you could stay at a hotel near the > hospital after they discharge you just for a few days where youwon't be so raw from > the pain. Just some ideas....I hope you have great luck with everything, > ...From what you have been through..you are entitled for a break by now! > > thanks for asking for me...things are better right now...the pain is still > horrendous.. .as always...but thank God the spasms have stopped...they brought > me to my knees this time. > > I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of > one of my batteries..it is 8 years old...so it is time..the stim is not > working now..so I want to get it done asap, but I developed severe cellulitis in > my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in > the leg again....so I had to wait until the infection and wound has cleared > up...which I think it has so...I am keeping my fingers and toes and eyes > (when not driving) crossed for good luck!! > > They will replace the battery and at the same time add three more leads to > the stim for my legs....so hopefully the stimulation will hit the ankles and > feet, as no stim is hitting them now...it is actually " jumping " over the damned > ankles. > > Well...I have gone on long enough now...best of luck to you and let me know > how you make out! > > Love, > > Kathy G. > Group Co-owner > > ************ **New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local. mapquest. com/?ncid= emlcntnew0000000 2) > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2008 Hey guys! Ketamine is also used alot of times in surgery....it is combined with other meds so that you do not remember the surgery. It is a great med to use for Anesthesia and has been used for this purpose for quite some time. ..I completely understand your pain with the halluciantions and nightmares. If Ketamine is given in too large doses or in good doses, but not with the proper mixture of other meds....horrendous hallucinations and nightmares most certainly will happen. I had this happen to myself three times....the dr was desperate to alleviate the spasms and horrible pain from the RSD in my left leg. It helped...but dear God almighty, did I suffer from hallucinations and nightmares! Ketamine is known on the street as special K. I found this out when my dr told me this...can you imagine, ...paying for the nightmares that we both get....how sad!! hang in, !! Kim..I am so sorry to hear about the Lidoderm patches not being covered. Maybe your doctor's office can call the rep and they can bring some in for you. I did this all the time for patients who either could not afford the med (if the med was not covered..or if they could not afford the copay) The very worst that could happen is that the rep would refuse...bu chances are they would bring at least some in for you...especially for professional courtesy as you are an RN. Did you work in any offices..if so ...perhaps you can use your past connections with them. I do this for myself for when I cannot afford a med...and I am never turned down by the reps. Hope this helps, Kim. Gentle hugs to all, Kathy G. Co-Owner **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 7, 2008 , I do not know if anyone emailed you offline about your housing question. You need to contact your Case Coordination Agency. You may not know who that is, so for that and perhaps other good information you should contact Illinois Life Span at 1-800-588-7002. Good luck. Ellen Ellen Garber Bronfeld egskb@... Hello Hello I am not a parent of somone who is dissbled, but I am disabled. I just wanted to get support about finding housing. I am also married, but my wife is living in India until she can get a visa for an non Us citizen who is related to a Us citizen. My mother was moved to another hospital for care with her legs and she is an alocoholic. She is 63 and my father is 71. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 8, 2008 I did not say everything about my wife. She is waiting housing for us before she even fills out the paper work for her visa. Also, Nance D'audrey who is with Community Alternatives Unlimited said I will ony get help unless it is an Emergency. I had a meeting with her in February and she said I had to have to see a psychiratrist, but I could not find one that will test me for my disabilty. She said it has to be an emergency in March. Now I am filling out a form for Resources For Communty Living which will be a waiting list and I have to pay for a backround check with the Illinois State Police and the Department of Children And Family services. I have to wait to fill in the space for my anuel income. --- In IPADDUnite , " ELLEN BRONFELD " <egskb@...> wrote: > > , I do not know if anyone emailed you offline about your housing question. > You need to contact your Case Coordination Agency. You may not know who that is, so for that and perhaps other good information you should contact Illinois Life Span at 1-800-588-7002. > Good luck. > Ellen > Ellen Garber Bronfeld > egskb@... > Hello > > > Hello I am not a parent of somone who is dissbled, but I am disabled. I > just wanted to get support about finding housing. I am also married, > but my wife is living in India until she can get a visa for an non Us > citizen who is related to a Us citizen. My mother was moved to another > hospital for care with her legs and she is an alocoholic. She is 63 and > my father is 71. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 8, 2008 The financial situation in Illinois is bleak but I am glad you are at least examining some options and moving forward, if only just a little. I wish I could offer you additional thoughts or resources. Resources for Community Living is an outstanding agency to work. I hope they will be able to help you. Ellen Ellen Garber Bronfeld egskb@... Hello > > > Hello I am not a parent of somone who is dissbled, but I am disabled. I > just wanted to get support about finding housing. I am also married, > but my wife is living in India until she can get a visa for an non Us > citizen who is related to a Us citizen. My mother was moved to another > hospital for care with her legs and she is an alocoholic. She is 63 and > my father is 71. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 6, 2009 Hey Mike! Yes.....all is running smoothly. It is great to see. Some wonderful news from some of our friends...ie Deanna...and some tough news from others....but that is why we are all here, right...to share the happy times and to help throughout the tough ones. How are you feeling, my friend? Love ya, kathy G. Group Co-owner **************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2009 Hi Deanna! It is wonderful to hear that you are doing so well with the pregnancy! I was wondering what kind of meds you are on? That was always a big concern for me having RSD to be able to keep taking meds while pregnant or if you would have to stop them all together. Have a great day! Nikki Mosinee, WI > > > Hello everyone... > I hope u all had a great 4th of July weekend. > I just wanted to welcome our new members and say hello to all our previous members. > > How is everyone? I hope the quiet days mean u were all out partying it up...LOL > > Update: today I am 31 weeks pregnant, still using my stimulator, and the baby is looking wonderful...in fact he is bigger than average! He is already 3lbs 5oz as of last Monday...he looks absolutely perfect. I'm starting to think ALL pregnant women should have stimulators implanted before becoming pregnant...it is wonderful for back pain! I haven't had to increase any Meds (which is great news for baby) and my back pain hasn't increased at all...I expected to be bed-ridden by now because of the pain, but I'm as active as before if not more active! > I see my back doctor tomorrow to discuss his suggestions on whether I can have an epidural or not, checking to see how it might effect the placement of the leads being at the base of my spine. Also his opinion on labor versus c-section. My prenatal specialist thinks I can pull off labor after all. She is very impressed with my progress!!! > > Well, that's my current deal...what's happening with the rest of you? > > Deanna > > > Sent from my iPhone > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2009 Deanna So glad that you and your baby boy are doing so well. I was concerned that the pregnancy would increase your back pain, but am very pleased that it didn't. It's so amazing that you can use the stim, without any ill effects on the baby. Enjoy the rest of your pregnancy! Sue C ________________________________ From: Deanna Ramsey <Photobug33777@...> SCS support group <Stimulator > Sent: Monday, July 6, 2009 11:15:34 AM Subject: Hello Hello everyone... I hope u all had a great 4th of July weekend. I just wanted to welcome our new members and say hello to all our previous members. How is everyone? I hope the quiet days mean u were all out partying it up...LOL Update: today I am 31 weeks pregnant, still using my stimulator, and the baby is looking wonderful... in fact he is bigger than average! He is already 3lbs 5oz as of last Monday...he looks absolutely perfect. I'm starting to think ALL pregnant women should have stimulators implanted before becoming pregnant...it is wonderful for back pain! I haven't had to increase any Meds (which is great news for baby) and my back pain hasn't increased at all...I expected to be bed-ridden by now because of the pain, but I'm as active as before if not more active! I see my back doctor tomorrow to discuss his suggestions on whether I can have an epidural or not, checking to see how it might effect the placement of the leads being at the base of my spine. Also his opinion on labor versus c-section. My prenatal specialist thinks I can pull off labor after all. She is very impressed with my progress!!! Well, that's my current deal....what' s happening with the rest of you? Deanna Sent from my iPhone Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2009 Hi Nikki, I am on Norco, Soma, and Effexor. I started out also taking Cymbalta but chose to wean off of it because of the 3rd trimester warning on the label. The Meds are highly affected by your doctor also. They weigh the risks vs the benefits.... I am seeing a specialist for high risk because of Meds, back, n I'm over 35 yrs old. Also u must be well prepared and as healthy as u can be prior to getting pregnant. I miscarried once because I was on way more Meds n wasn't prepared at all. I started prenatal vitamins at least 6 months before conceiving the 2nd time and coincedentally have been on folic acid for a couple years, but I would just start it at the same time as prenatal. If u can get an on/gyn on ur side to help u adjust Meds n understands ur medical needs ahead of time, it will be great help n support for you. I had a few doctors who had a fit about Meds no matter what the reason. They wanted me off of everything, but reality was no stimulator n meds...then no baby! I have cut way down n got rid of everything I could...including caffeine just to give my baby every chance that I could. Good Luck! Deanna Sent from my iPhone On Jul 6, 2009, at 10:09 AM, " turbo040624 " <nnels702@...> wrote: Hi Deanna! It is wonderful to hear that you are doing so well with the pregnancy! I was wondering what kind of meds you are on? That was always a big concern for me having RSD to be able to keep taking meds while pregnant or if you would have to stop them all together. Have a great day! Nikki Mosinee, WI > > > Hello everyone... > I hope u all had a great 4th of July weekend. > I just wanted to welcome our new members and say hello to all our previous members. > > How is everyone? I hope the quiet days mean u were all out partying it up...LOL > > Update: today I am 31 weeks pregnant, still using my stimulator, and the baby is looking wonderful...in fact he is bigger than average! He is already 3lbs 5oz as of last Monday...he looks absolutely perfect. I'm starting to think ALL pregnant women should have stimulators implanted before becoming pregnant...it is wonderful for back pain! I haven't had to increase any Meds (which is great news for baby) and my back pain hasn't increased at all...I expected to be bed-ridden by now because of the pain, but I'm as active as before if not more active! > I see my back doctor tomorrow to discuss his suggestions on whether I can have an epidural or not, checking to see how it might effect the placement of the leads being at the base of my spine. Also his opinion on labor versus c-section. My prenatal specialist thinks I can pull off labor after all. She is very impressed with my progress!!! > > Well, that's my current deal...what's happening with the rest of you? > > Deanna > > > Sent from my iPhone > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2009 Thanks Sue! I was really worried about the pain also. I am pleasantly surprised that it hasn't increased. It probably helps that I haven't yet gained any weight either...so the only extra stress is that of the enlarged belly and not enlarged everything. I still have 9 weeks to go, but the dr said I could gain 10-15lbs without to much trouble. I am also surprised I haven't gained any weight cause I was trying to gain it for the baby...guess he is using some of my reserves....LOL Deanna Sent from my iPhone On Jul 6, 2009, at 7:23 PM, Corn <butterfliesrfree309@...> wrote: Deanna So glad that you and your baby boy are doing so well. I was concerned that the pregnancy would increase your back pain, but am very pleased that it didn't. It's so amazing that you can use the stim, without any ill effects on the baby. Enjoy the rest of your pregnancy! Sue C ________________________________ From: Deanna Ramsey <Photobug33777@...> SCS support group <Stimulator > Sent: Monday, July 6, 2009 11:15:34 AM Subject: Hello Hello everyone... I hope u all had a great 4th of July weekend. I just wanted to welcome our new members and say hello to all our previous members. How is everyone? I hope the quiet days mean u were all out partying it up...LOL Update: today I am 31 weeks pregnant, still using my stimulator, and the baby is looking wonderful... in fact he is bigger than average! He is already 3lbs 5oz as of last Monday...he looks absolutely perfect. I'm starting to think ALL pregnant women should have stimulators implanted before becoming pregnant...it is wonderful for back pain! I haven't had to increase any Meds (which is great news for baby) and my back pain hasn't increased at all...I expected to be bed-ridden by now because of the pain, but I'm as active as before if not more active! I see my back doctor tomorrow to discuss his suggestions on whether I can have an epidural or not, checking to see how it might effect the placement of the leads being at the base of my spine. Also his opinion on labor versus c-section. My prenatal specialist thinks I can pull off labor after all. She is very impressed with my progress!!! Well, that's my current deal....what' s happening with the rest of you? Deanna Sent from my iPhone Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 10, 2009 >hey moke, this is mike g, from manteno, il, i've had DDD, have a morpHine pump and SCS....don't want to bore you w/ a story you have all heard too many times before. here is what's going on. i am working (with other patients) to legalize the use of medicinal cannabis. i went through the OXY-HELL like everyone else that has been on that frug....i shouldn't say EVERYBODY, BUT everybody i know that has been on it. i am trying to hook up with as many patients as possible from the state of illinois to get the current legislation through the HOUSE next spring. we WON support in the SENATE by achieving the 30/59 votes needed for passage. with all of the hard work we have done, now my fear is that people are going to treat it like the '49 gold rush and forget about the original intent of the law. MY GOAL, is nothing more than trying to reduce the suffering of chronic (and i'm one) and terminally ill patients, first here in illinois, and then across the nation. if i can answer any questions, i'd be happy to, or if you have any sugggestions, please don't hesitate > I want you all to join my new Group here nacps also look at this website http://www.nacps.us group I am the owner here I have not posted in awhile I opened the open group it have 500 members all in chronic pain. many have stimulators. please join there. Mike > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 11, 2009 So sorry to hear what you have gone through. I would recommend that you go for the trial for the stimulator. That way you would know if it would help you. If you don't get any relief, or enough relief, you don't go for the implant. The stimulator doesn't help everyone or every condition that's why they do a trial first. As with any surgery, there is always a risk. Do your research. I had a neurosurgeon do my surgeries. Find out how many implants the dr has done. You don't want to be the first. The trial is uncomfortable because the battery pack is taped to your body. The implant is more painful. The worst part was trying to sleep, couldn't find a comfortable spot. The relief I got was worth the pain of surgery!! I didn't have any complications from the surgery. You have to be very careful not to bend, lift, stretch, etc. You don't want to dislodge the leads from the spine until the scar tissue forms. The important thing is to find a compent dr and then follow the instructions. Some people start to do things too quickly and the leads move. Good luck. Sue C ________________________________ From: sloooo44 <sloooo44@...> Stimulator Sent: Thursday, July 9, 2009 5:36:32 PM Subject: Hello I am new here and well, I guess i'll just tell my story. To start, I have a disease call osteogenesis imperfecta. Back in December of 2008, I had a tib/fib fracture in over 16 places and spent 8 days in the hostital. The cast was put on wrong after they removed the staples and because the cast had a " kink " in it, it rubed a hole through my skin into one of the fixture plates holding my foot together. On February 11th, they removed the cast which was full of blood. They found the 3 " circular ulser on my foot abd put me on antibiotics. So, because the pain was so back, they gave me 10/325 hydrocodone and and Keflex. I finally went to a new doctor because my old one was....well, clueless, but by this time, the fixture plate had become infected between the plate and the bone. He sent me to an infectious disease Doctor who ordered a PICC line and IV antibiotics twice a day. He gave me Vancomycin and moved me up to 5/320 Oxycodone. A month passed and finally on May 13th, they went in and removed the infected fixture plate. When they removed it, they found that the bone was now infected and that a chunck of bone had " fallen off " and had to be removed. I spent 3 days in the hostital while they monitored my ifection in the bone. They removed the old PICC line and insalled and new PICC line that went diect to the heart. I was sent home and placed on Cubicin once a day for by IV for my antibiotic. My pain meds went down to 5/325 hydrocodone, so I was finally on the mend....so I thought. They did an x-ray the beginning of June, and it was the first time in 6 months that there was bone growth. PERFECT. But, around the same time, the pain in my foot was getting worse. I went from 5/325 hydrocodone to 10/325 hydrocodone and then onto 5/325 oxycodone and finally up to 10/325 oxycone, which is where I am at today. Turns out, I have what called RSD or Reflex Sympathetic Dystrophy. I guess that sometime around the surgeries, a nerve was cut and it did not grow back right. This is where I am at now and why I am here on your forums. I have questions and need advice and am scared as hell about my future. I have already had 2 spinal nerve blocks in my back and about the only this they did was make me wabbly for a couple days. No pain releif at all. Mu Doctor is now telling me he would like to install a Medstronic bone stimulator in my back. There is a sample that I am able to try before they install the real one. I read on the internet horror stories about these things, but i'm sure that what I am ready are just the horror stories and not getting a fair look at this. Is this safe and does it work? I don't want to be on oxycodone the rest of my life. If I do to hjave a quality of life, i will. But I would like to think this is a viable option. Does anyone have advice or anything about this? How painful is the surgery? Does it work? Has anyone had complications? What is the overal effectivness rate? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 11, 2009 I also have the stim and it did allow me to do more. is right, its not a cure and you wont be the person you were before. Some of the things you did before you may not be able to do after the stim. This was the hardest part for me, I wanted and sometimes still do, want to be the person I was before and do the things I used to. I used to be a workout freak. Kickboxing was my exercise and I loved it, did it all the time. Now I am not allowed nor can I do kickboxing anymore. This activity would pull the leads out and do more damage than I had. I still am having a hard time dealing since I really wanted the stim to be a miracle. I have 2 leads and the 2nd was put in Nov so I am still getting used to having it. It has helped me alot with the pain and I am back to doing alot of things, but i am limited in what I can do. Someone I know had the leads in her neck and she went back to work the week after her surgery and went back to doing all the things she used to and ended up pulling one of the leads right out of her neck. She has so many problems from not doing as she was directed that she has to have several more surgeries. So you must follow the directions otherwise you wont get the benefits of the stim. I hope I didnt scare you, thats just 1 example. There are so many people with the stim that it works for, even me I love how much it reduces my pain. Kathy I can never have too many pairs of shoes! From: Corn <butterfliesrfree309@...> Subject: Re: Hello Stimulator Date: Saturday, July 11, 2009, 9:25 AM So sorry to hear what you have gone through. I would recommend that you go for the trial for the stimulator. That way you would know if it would help you. If you don't get any relief, or enough relief, you don't go for the implant. The stimulator doesn't help everyone or every condition that's why they do a trial first. As with any surgery, there is always a risk. Do your research. I had a neurosurgeon do my surgeries. Find out how many implants the dr has done. You don't want to be the first. The trial is uncomfortable because the battery pack is taped to your body. The implant is more painful. The worst part was trying to sleep, couldn't find a comfortable spot. The relief I got was worth the pain of surgery!! I didn't have any complications from the surgery. You have to be very careful not to bend, lift, stretch, etc. You don't want to dislodge the leads from the spine until the scar tissue forms. The important thing is to find a compent dr and then follow the instructions. Some people start to do things too quickly and the leads move. Good luck. Sue C ____________ _________ _________ __ From: sloooo44 <sloooo44 (DOT) com> Stimulator@gro ups.com Sent: Thursday, July 9, 2009 5:36:32 PM Subject: Hello I am new here and well, I guess i'll just tell my story. To start, I have a disease call osteogenesis imperfecta. Back in December of 2008, I had a tib/fib fracture in over 16 places and spent 8 days in the hostital. The cast was put on wrong after they removed the staples and because the cast had a " kink " in it, it rubed a hole through my skin into one of the fixture plates holding my foot together. On February 11th, they removed the cast which was full of blood. They found the 3 " circular ulser on my foot abd put me on antibiotics. So, because the pain was so back, they gave me 10/325 hydrocodone and and Keflex. I finally went to a new doctor because my old one was....well, clueless, but by this time, the fixture plate had become infected between the plate and the bone. He sent me to an infectious disease Doctor who ordered a PICC line and IV antibiotics twice a day. He gave me Vancomycin and moved me up to 5/320 Oxycodone. A month passed and finally on May 13th, they went in and removed the infected fixture plate. When they removed it, they found that the bone was now infected and that a chunck of bone had " fallen off " and had to be removed. I spent 3 days in the hostital while they monitored my ifection in the bone. They removed the old PICC line and insalled and new PICC line that went diect to the heart. I was sent home and placed on Cubicin once a day for by IV for my antibiotic. My pain meds went down to 5/325 hydrocodone, so I was finally on the mend....so I thought. They did an x-ray the beginning of June, and it was the first time in 6 months that there was bone growth. PERFECT. But, around the same time, the pain in my foot was getting worse. I went from 5/325 hydrocodone to 10/325 hydrocodone and then onto 5/325 oxycodone and finally up to 10/325 oxycone, which is where I am at today. Turns out, I have what called RSD or Reflex Sympathetic Dystrophy. I guess that sometime around the surgeries, a nerve was cut and it did not grow back right. This is where I am at now and why I am here on your forums. I have questions and need advice and am scared as hell about my future. I have already had 2 spinal nerve blocks in my back and about the only this they did was make me wabbly for a couple days. No pain releif at all. Mu Doctor is now telling me he would like to install a Medstronic bone stimulator in my back. There is a sample that I am able to try before they install the real one. I read on the internet horror stories about these things, but i'm sure that what I am ready are just the horror stories and not getting a fair look at this. Is this safe and does it work? I don't want to be on oxycodone the rest of my life. If I do to hjave a quality of life, i will. But I would like to think this is a viable option. Does anyone have advice or anything about this? How painful is the surgery? Does it work? Has anyone had complications? What is the overal effectivness rate? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 11, 2009 Kathy Not being able to do the things we once were able to do can be very depressing. Instead of thinking about all the things we can no long do, focus on all the things you still can do. Be grateful for all the things and people that you have in your life. I know how difficult this is. Our whole lives have been turned upside down, but we need to change our attitude from negative to positive. I am glad the stim is helping you. Since you can't do kickboxing anymore, is there anyother exercise that you can do instead. How about water exercise, or tai chi , or some other form of exercise that is easy on the body. Check with your dr. Sue C ________________________________ From: Kathy Holloway <kathyskar1@...> Stimulator Sent: Saturday, July 11, 2009 10:46:21 AM Subject: Re: Hello I also have the stim and it did allow me to do more. is right, its not a cure and you wont be the person you were before. Some of the things you did before you may not be able to do after the stim. This was the hardest part for me, I wanted and sometimes still do, want to be the person I was before and do the things I used to. I used to be a workout freak. Kickboxing was my exercise and I loved it, did it all the time. Now I am not allowed nor can I do kickboxing anymore. This activity would pull the leads out and do more damage than I had. I still am having a hard time dealing since I really wanted the stim to be a miracle. I have 2 leads and the 2nd was put in Nov so I am still getting used to having it. It has helped me alot with the pain and I am back to doing alot of things, but i am limited in what I can do. Someone I know had the leads in her neck and she went back to work the week after her surgery and went back to doing all the things she used to and ended up pulling one of the leads right out of her neck. She has so many problems from not doing as she was directed that she has to have several more surgeries. So you must follow the directions otherwise you wont get the benefits of the stim. I hope I didnt scare you, thats just 1 example. There are so many people with the stim that it works for, even me I love how much it reduces my pain. Kathy I can never have too many pairs of shoes! From: Corn <butterfliesrfree309 @> Subject: Re: Hello Stimulator@gro ups.com Date: Saturday, July 11, 2009, 9:25 AM So sorry to hear what you have gone through. I would recommend that you go for the trial for the stimulator. That way you would know if it would help you. If you don't get any relief, or enough relief, you don't go for the implant. The stimulator doesn't help everyone or every condition that's why they do a trial first. As with any surgery, there is always a risk. Do your research. I had a neurosurgeon do my surgeries.. Find out how many implants the dr has done. You don't want to be the first. The trial is uncomfortable because the battery pack is taped to your body. The implant is more painful. The worst part was trying to sleep, couldn't find a comfortable spot. The relief I got was worth the pain of surgery!! I didn't have any complications from the surgery. You have to be very careful not to bend, lift, stretch, etc. You don't want to dislodge the leads from the spine until the scar tissue forms. The important thing is to find a compent dr and then follow the instructions. Some people start to do things too quickly and the leads move. Good luck. Sue C ____________ _________ _________ __ From: sloooo44 <sloooo44 (DOT) com> Stimulator@gro ups.com Sent: Thursday, July 9, 2009 5:36:32 PM Subject: Hello I am new here and well, I guess i'll just tell my story. To start, I have a disease call osteogenesis imperfecta. Back in December of 2008, I had a tib/fib fracture in over 16 places and spent 8 days in the hostital. The cast was put on wrong after they removed the staples and because the cast had a " kink " in it, it rubed a hole through my skin into one of the fixture plates holding my foot together. On February 11th, they removed the cast which was full of blood. They found the 3 " circular ulser on my foot abd put me on antibiotics. So, because the pain was so back, they gave me 10/325 hydrocodone and and Keflex. I finally went to a new doctor because my old one was....well, clueless, but by this time, the fixture plate had become infected between the plate and the bone. He sent me to an infectious disease Doctor who ordered a PICC line and IV antibiotics twice a day. He gave me Vancomycin and moved me up to 5/320 Oxycodone. A month passed and finally on May 13th, they went in and removed the infected fixture plate. When they removed it, they found that the bone was now infected and that a chunck of bone had " fallen off " and had to be removed. I spent 3 days in the hostital while they monitored my ifection in the bone. They removed the old PICC line and insalled and new PICC line that went diect to the heart. I was sent home and placed on Cubicin once a day for by IV for my antibiotic. My pain meds went down to 5/325 hydrocodone, so I was finally on the mend....so I thought. They did an x-ray the beginning of June, and it was the first time in 6 months that there was bone growth. PERFECT. But, around the same time, the pain in my foot was getting worse. I went from 5/325 hydrocodone to 10/325 hydrocodone and then onto 5/325 oxycodone and finally up to 10/325 oxycone, which is where I am at today. Turns out, I have what called RSD or Reflex Sympathetic Dystrophy. I guess that sometime around the surgeries, a nerve was cut and it did not grow back right. This is where I am at now and why I am here on your forums. I have questions and need advice and am scared as hell about my future. I have already had 2 spinal nerve blocks in my back and about the only this they did was make me wabbly for a couple days. No pain releif at all. Mu Doctor is now telling me he would like to install a Medstronic bone stimulator in my back. There is a sample that I am able to try before they install the real one. I read on the internet horror stories about these things, but i'm sure that what I am ready are just the horror stories and not getting a fair look at this. Is this safe and does it work? I don't want to be on oxycodone the rest of my life. If I do to hjave a quality of life, i will. But I would like to think this is a viable option. Does anyone have advice or anything about this? How painful is the surgery? Does it work? Has anyone had complications? What is the overal effectivness rate? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 15, 2009 > > Hello, > > My name is Kerrie and I also have a pump; it was implanted 8/07. I struggle everyday to survive and some days are better than others. I am working fulltime again but it is not easy. I am really looking for support as the depression has really taken over and I am not in a good way. My pain is controlled but there isn't a day without it. I have a wonderful family and supportive friends but they really don't understand. > > Is anyone struggling with depression post implant and if so, what kinds of meds are you taking? I am very excited to find this group and I pray it will help me. > Kerrie :-) > >hi, this is mike from manteno, il, i'm on my second pump and 6th SCS. i went through all the depression crap, but with me, it seemed like the oral opiates had a lot to do with that. i have now been off ALL oral meds.. i was bedridden and had lost over 70 pounds when a hospice nurse recommended i try pot. if i hadn't, i'd be dead by now... for the last 4 1/2 years, i have been working to get it legalized here in illinois. it really has been a tremendous help...and NO side effects... good luck kerrie, if there is anything i can do, just give me a holler~~~mike p.s. your lucky your able to go back to work~~~i'm DONE!!!! I miss that most > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 29, 2009 Hi Flo! Well as long as your numbers are good and you're not on any meds you're doing something good. I'm glad you're trying to stay off the meds. I'm on Hydrogen Peroxide, Cat's Claw, Essiac, Pau D'Arco, Coconut oil, and Probiotics. I don't know on how many supplements you're on but you're not the only one. I for one feel great probably better than when i was diagnosed. Hydrogen Peroxide Oxygenates my body, Coconut oil is good for keeping the T-Cells high, Pau D'Arco and Cat's Claw enhance the immune system and fight fungus, Essiac cleanses the body ( as does the Hydrogen Peroxide) and Probiotics release good bacteria into the body. So that's my regimen. You might be perfect for that incurables program from the Herb Doctor. The kit is very pricey. But I'm sure it's worth a try. Right now I'm still dedicated to Hydrogen Peroxide therapy to see if indeed works. So far it's been working very well but it's too early to tell if it's the cure we're promised in the book " one minute cure " but I have kept everyone updated with my lab results. They seem to be improving without meds. Take care and I'm glad to see you on here. From: Flo <champanelady@...> Subject: Hello cures for AIDS Date: Thursday, October 29, 2009, 12:52 PM I have been following alot of the topic's posted here and i am very interested in getting involved..I am moving into my 7th year of being positive..My numbers are good. I am not any meds and I don't want to be either...I supplement with several different herbs and vitmans.and try my best to live and heathly life style.No drugs, no alcohol. My Mom says I take to many supplements. I don't agree. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 29, 2009 Hello Mr. Jaun thank you very much for all your advice. I am very interested about how you ingest hydrogen peroxide I heard it can be dangerous if you just drink it. If you could give me step by step instructions on how you take it I would appreciate it Again thanks for all your advice and time ________________________________ From: Don <donjuan69uni@...> cures for AIDS Sent: Thu, October 29, 2009 2:16:33 PM Subject: Re: Hello Hi Flo! Well as long as your numbers are good and you're not on any meds you're doing something good. I'm glad you're trying to stay off the meds. I'm on Hydrogen Peroxide, Cat's Claw, Essiac, Pau D'Arco, Coconut oil, and Probiotics. I don't know on how many supplements you're on but you're not the only one. I for one feel great probably better than when i was diagnosed. Hydrogen Peroxide Oxygenates my body, Coconut oil is good for keeping the T-Cells high, Pau D'Arco and Cat's Claw enhance the immune system and fight fungus, Essiac cleanses the body ( as does the Hydrogen Peroxide) and Probiotics release good bacteria into the body. So that's my regimen. You might be perfect for that incurables program from the Herb Doctor. The kit is very pricey. But I'm sure it's worth a try. Right now I'm still dedicated to Hydrogen Peroxide therapy to see if indeed works. So far it's been working very well but it's too early to tell if it's the cure we're promised in the book " one minute cure " but I have kept everyone updated with my lab results. They seem to be improving without meds. Take care and I'm glad to see you on here. From: Flo <champanelady> Subject: Hello cures for AIDS@grou ps.com Date: Thursday, October 29, 2009, 12:52 PM I have been following alot of the topic's posted here and i am very interested in getting involved..I am moving into my 7th year of being positive..My numbers are good. I am not any meds and I don't want to be either...I supplement with several different herbs and vitmans.and try my best to live and heathly life style.No drugs, no alcohol. My Mom says I take to many supplements. I don't agree. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 29, 2009 Sure hun, I will send you a copy of the book " one minute cure " in a personal e-mail. It can be dangerous if not handled properly, but this book will give you all the information you will need. I have been on it for almost 4 months and everything is well with me. When I got to the maintenance phase that's when I started adding more supplements little by little. I will also send you a number where you can purchase it. It's very simple to use. All you need to do is dilute a few drops on to a glass of distilled water (8 oz to be exact). The number to the place I will give will also send you a free dropper for you to use in the dilution process. Feel free to e-mail any questions anytime. From: Flo <champanelady> Subject: Hello cures for AIDS@grou ps.com Date: Thursday, October 29, 2009, 12:52 PM I have been following alot of the topic's posted here and i am very interested in getting involved..I am moving into my 7th year of being positive..My numbers are good. I am not any meds and I don't want to be either...I supplement with several different herbs and vitmans.and try my best to live and heathly life style.No drugs, no alcohol. My Mom says I take to many supplements. I don't agree. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 29, 2009 I tend to agree with your mom. I've been helping people out of the AIDS zone for over 25 years. Sometimes you come across people who seem to be doing all the right things but still having health problems. Ask them what they're taking and they come up with a gym bag full of supplements and things, many of which are toxic and interfere with health -- especially many of the protein products body builders take. Supplements are not absorbed as well as nutrients from whole foods. They make for very expensive urine. The money wasted on supplements would be better spent on fresh organic produce. In my book, less is more. Nothing beats raw fruits, vegetables, nuts and seeds -- properly combined. Add more of these to your diet and eliminate more and more of the things that destroy health -- drugs, caffeine, alcohol, refined sugars and flour, animal products, grains in general (exception: sprouted grains) and medical doctors -- the number one cause of death, disfigurement and disease. About the only thing of value from the pharmacy is the instructions on bottles of liquids: SHAKE WELL! As long as you go to these quacks who call themselves HIV/AIDS specialists you are treading dangerous waters. Educate yourself. The truth shall set you free. The Internet is probably the best source of information, but be careful. There are lot of well-meaning people who don't know what they're they're talking about. Take you advice from healthy people. Ed sobehealthy.com --Original Message----- From: Flo <champanelady@...> cures for AIDS Sent: Thu, Oct 29, 2009 1:52 pm Subject: Hello I have been following alot of the topic's posted here and i am very interested in getting involved..I am moving into my 7th year of being positive..My numbers are good. I am not any meds and I don't want to be either...I supplement with several different herbs and vitmans.and try my best to live and heathly life style.No drugs, no alcohol. My Mom says I take to many supplements. I don't agree. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2009 I'll appreciate it if you could send the book to me as well. phine From: Flo <champanelady> Subject: Hello cures for AIDS@grou ps.com Date: Thursday, October 29, 2009, 12:52 PM I have been following alot of the topic's posted here and i am very interested in getting involved..I am moving into my 7th year of being positive..My numbers are good. I am not any meds and I don't want to be either...I supplement with several different herbs and vitmans.and try my best to live and heathly life style.No drugs, no alcohol. My Mom says I take to many supplements. I don't agree. Quote Share this post Link to post Share on other sites
