Re: Re: block

[Guest guest]

Betsy,

I had an SCS put in on Dec. 5, 2002. Mine is just for the left foot, so I just have one. I am glad I got mine. I know a lady that just got her trial taken out today and she's definitely going for it! But not all people have the same results, thus the reason for the trial. If you would like to find out more about how it works, etc. I would suggest the Medtronics site. That is the brand that I have. I would also make sure the doctor has done plenty of them, and maybe talk to other patients who have had one put in by this doctor. But they put leads into the spinal area where the nerves lead to the part of the body that needs it. For the permanent one, they implant a battery pack into your rear or lower stomach area and attach the leads to it. I have a remote that I hold to the battery pack to turn it on/off, up/down. The inner battery pack usually lasts 3-5 years. The outer battery lasts approx. 3 mo. You feel a pleasant tingling sensation going to the area with RSD. Although mine is for the left foot, I can get it to go into the right leg as well. Sometimes you have to have an appt. with a psychologist before getting one to make sure you can handle having a foreign object in your body. I didn't have to--took a written "test," but know some who have had to.

Love,

Re: block

Thanks Babs,That type of infusion has not been suggested for me but the SCS has been tossed about. I know very little about them and I know you have two. I would be interested in knowing how they work. You sure do a nice job of informing folks on this message board and trying to be uplifting and giving us all hope. I for one appreciate your comments to one and all. Thanks for being there.May the Lord Bless,Betsy> Hi Betsy, In the first ll years that I had RSD I had infusions three> times. The first time I had a Lidacaine infusion which worked really> well while it was going but as soon as it was taken out the pain was> back. The second and third ones were done by a different dr and had> lidocaine and another drug, and you have to forgive me, that I forgot> what it was. I have not thougt about those infusions for such a long> time but when they were mentioned then I remembered. The second and> third infusions did the best and get this I had them both in for about 3> weeks each. That was 2 weeks longer then the first one. Most drs now> will only leave the infusions in for about a week now. Anyway that is> what people have told me.> And it is true that they do work for some peole better than others. > > Take care> > Hugs,> babs

[Guest guest]

Hi Betsy, you are quite welcome. I have the stims in for l2 years.

Before I got them in I could not use my left hand or arm and I could not

walk. I can now use my arm and hand and I also can walk. The stims

have cut my pain by about 40%. I still have to take med for pain but I

don't take near as much as before the stims. The SCS will not prevent

the RSD from spreading nor will it prevent a flare of the RSD either. I

have heard of many drs telling their patients that the SCS will help

them for sure. Believe me that is not the way it is at all. Any dr who

tells us that is giving us false hope. The reason that I tried the SCS

was that at the time it was the only thing that was left for me to try.

I believe that when we are in so much pain we should try whatever we

canto help us. But that is just my opinion.

I would never tell someone else what to do. I am not a dr.

There are things about the SCS that you should know about. The battery

does not last forever. I have had to get both batteries replaced about

5 times each. Another thing is that when you first get the SCS in you

will notice that certain things make the stimulation increase and

decrease. Because the leads are in the back when we lay against our

backs the stimulation increases. Also when we have to go through any

type of metal detectors the stimulation can change also. Of course some

metal detectors are stronger than others. Some don't bother me at all.

Also if you live around high tension wires they tend to sometimes turn

the SCS off or increase the stimulation.

These things that I have just explained you will get used to. I usually

shop in the same stores all the time so I know which metal detectors

bother it and which don't.

When I go to bed I automatically turn my upper and lower SCS down. And

when I go by high tension wires I turn my SCS's off until I am past

them. I am so used to having them that I don't even feel the

stimulation anymore.

I hope I have answered your question. I know I told you more than you

asked but once I get started I can't stop. I guess that is what happens

when you explain itto so many people. If you have any other questions

please let me know. I will be happy to try to answer them. Take care

Hugs

babs

[Guest guest]

Betsy,

I have Personal Care HMO and they paid for every bit of it. If I would have had to stay more than 23 hr. I would have had to pay a co-pay for a day at the hospital. Actually I spent the night, just went home before time was up.

Love,

Re: block

Hi Babs,You explanation about the SCS is very helpful. I appreciate the time and effort you put into answering my questions. Did your insurance pay for them? $$$$ is always a big deal for us so the cost must be considered. Also, I am unsure of which I should try first and it may come down to what ever Medicare will cover. This disease is taking over my life and I am not accomplishing a thing and it is mind boggleing the years you have been dealing with it. I have only been in such distress since Feb of this year and I feel that I have to get on top of the problem or it will ddrive me crazy. Anyway, have a good day and thanks again.May the Lord Bless,Betsy> Hi Betsy, you are quite welcome. I have the stims in for l2 years.> Before I got them in I could not use my left hand or arm and I could not> walk. I can now use my arm and hand and I also can walk. The stims> have cut my pain by about 40%. I still have to take med for pain but I> don't take near as much as before the stims. The SCS will not prevent> the RSD from spreading nor will it prevent a flare of the RSD either. I> have heard of many drs telling their patients that the SCS will help> them for sure. Believe me that is not the way it is at all. Any dr who> tells us that is giving us false hope. The reason that I tried the SCS> was that at the time it was the only thing that was left for me to try.> I believe that when we are in so much pain we should try whatever we> canto help us. But that is just my opinion.> I would never tell someone else what to do. I am not a dr. > > There are things about the SCS that you should know about. The battery> does not last forever. I have had to get both batteries replaced about> 5 times each. Another thing is that when you first get the SCS in you> will notice that certain things make the stimulation increase and> decrease. Because the leads are in the back when we lay against our> backs the stimulation increases. Also when we have to go through any> type of metal detectors the stimulation can change also. Of course some> metal detectors are stronger than others. Some don't bother me at all.> Also if you live around high tension wires they tend to sometimes turn> the SCS off or increase the stimulation. > These things that I have just explained you will get used to. I usually> shop in the same stores all the time so I know which metal detectors> bother it and which don't.> When I go to bed I automatically turn my upper and lower SCS down. And> when I go by high tension wires I turn my SCS's off until I am past> them. I am so used to having them that I don't even feel the> stimulation anymore. > > I hope I have answered your question. I know I told you more than you> asked but once I get started I can't stop. I guess that is what happens> when you explain itto so many people. If you have any other questions> please let me know. I will be happy to try to answer them. Take care> > Hugs> babs

[Guest guest]

Betsy,

I have Personal Care HMO and they paid for every bit of it. If I would have had to stay more than 23 hr. I would have had to pay a co-pay for a day at the hospital. Actually I spent the night, just went home before time was up.

Love,

Re: block

Hi Babs,You explanation about the SCS is very helpful. I appreciate the time and effort you put into answering my questions. Did your insurance pay for them? $$$$ is always a big deal for us so the cost must be considered. Also, I am unsure of which I should try first and it may come down to what ever Medicare will cover. This disease is taking over my life and I am not accomplishing a thing and it is mind boggleing the years you have been dealing with it. I have only been in such distress since Feb of this year and I feel that I have to get on top of the problem or it will ddrive me crazy. Anyway, have a good day and thanks again.May the Lord Bless,Betsy> Hi Betsy, you are quite welcome. I have the stims in for l2 years.> Before I got them in I could not use my left hand or arm and I could not> walk. I can now use my arm and hand and I also can walk. The stims> have cut my pain by about 40%. I still have to take med for pain but I> don't take near as much as before the stims. The SCS will not prevent> the RSD from spreading nor will it prevent a flare of the RSD either. I> have heard of many drs telling their patients that the SCS will help> them for sure. Believe me that is not the way it is at all. Any dr who> tells us that is giving us false hope. The reason that I tried the SCS> was that at the time it was the only thing that was left for me to try.> I believe that when we are in so much pain we should try whatever we> canto help us. But that is just my opinion.> I would never tell someone else what to do. I am not a dr. > > There are things about the SCS that you should know about. The battery> does not last forever. I have had to get both batteries replaced about> 5 times each. Another thing is that when you first get the SCS in you> will notice that certain things make the stimulation increase and> decrease. Because the leads are in the back when we lay against our> backs the stimulation increases. Also when we have to go through any> type of metal detectors the stimulation can change also. Of course some> metal detectors are stronger than others. Some don't bother me at all.> Also if you live around high tension wires they tend to sometimes turn> the SCS off or increase the stimulation. > These things that I have just explained you will get used to. I usually> shop in the same stores all the time so I know which metal detectors> bother it and which don't.> When I go to bed I automatically turn my upper and lower SCS down. And> when I go by high tension wires I turn my SCS's off until I am past> them. I am so used to having them that I don't even feel the> stimulation anymore. > > I hope I have answered your question. I know I told you more than you> asked but once I get started I can't stop. I guess that is what happens> when you explain itto so many people. If you have any other questions> please let me know. I will be happy to try to answer them. Take care> > Hugs> babs

[Guest guest]

Betsy,

You may have seen my earlier post today. The podiatrist mentioned RSD right off and is treating it as if it is a possibility (like no ice, immobilization). They did x-rays and nothing was found. She said a bone could have hit my nerve when it got jammed. She gave me an elastic stocking that goes just up past my ankle for support. I'm supposed to go back Aug. 5. I told her I really think it is a nerve injury because if I get the stimulator down in the foot, it makes it feel better. I'm supposed to rest it and keep it up. I told her that'd be kind of hard the next couple weeks but will do my best! I think I will see if we can rent a wheelchair or skooter if we're going to be doing a lot of walking. I see my pain specialist tomorrow and can talk to him about it.

Love,

Re: block

Thanks for that information . I have seen posts saying that people have them, but I did not know how they worked. It will possibly be something to consider. I already have some foreign stuff in my body....namely...wired sternum, rings on two heart valves and a porta-cath. My hubby would not like the proceedure for getting a SCS put in, of this I am sure. I am having big time trouble with my right knee which was hurt in my most recent fall, and I think I may have a torn ligament, but Joe does not think there is a problem and does not even want me to have it checked out.....in the meantime I am hobbleing all the more. RSD and sprained ankle on left and knee on the right. Time will tell....when he has to carry me out of the church or store ha ha...then maybe he will realize there is a problem. I hope so. I like the way you respond to everyone in this group and the upbeat attitude you have. By the way....have you been to the doctor yet regarding your right foot? If so, what did you learn?May the Lord Bless,Betsy > > Hi Betsy, In the first ll years that I had RSD I had infusions > three> > times. The first time I had a Lidacaine infusion which worked > really> > well while it was going but as soon as it was taken out the pain was> > back. The second and third ones were done by a different dr and had> > lidocaine and another drug, and you have to forgive me, that I > forgot> > what it was. I have not thougt about those infusions for such a > long> > time but when they were mentioned then I remembered. The second and> > third infusions did the best and get this I had them both in for > about 3> > weeks each. That was 2 weeks longer then the first one. Most drs > now> > will only leave the infusions in for about a week now. Anyway that > is> > what people have told me.> > And it is true that they do work for some peole better than > others. > > > > Take care> > > > Hugs,> > babs> > >

[Guest guest]

Betsy,

You may have seen my earlier post today. The podiatrist mentioned RSD right off and is treating it as if it is a possibility (like no ice, immobilization). They did x-rays and nothing was found. She said a bone could have hit my nerve when it got jammed. She gave me an elastic stocking that goes just up past my ankle for support. I'm supposed to go back Aug. 5. I told her I really think it is a nerve injury because if I get the stimulator down in the foot, it makes it feel better. I'm supposed to rest it and keep it up. I told her that'd be kind of hard the next couple weeks but will do my best! I think I will see if we can rent a wheelchair or skooter if we're going to be doing a lot of walking. I see my pain specialist tomorrow and can talk to him about it.

Love,

Re: block

Thanks for that information . I have seen posts saying that people have them, but I did not know how they worked. It will possibly be something to consider. I already have some foreign stuff in my body....namely...wired sternum, rings on two heart valves and a porta-cath. My hubby would not like the proceedure for getting a SCS put in, of this I am sure. I am having big time trouble with my right knee which was hurt in my most recent fall, and I think I may have a torn ligament, but Joe does not think there is a problem and does not even want me to have it checked out.....in the meantime I am hobbleing all the more. RSD and sprained ankle on left and knee on the right. Time will tell....when he has to carry me out of the church or store ha ha...then maybe he will realize there is a problem. I hope so. I like the way you respond to everyone in this group and the upbeat attitude you have. By the way....have you been to the doctor yet regarding your right foot? If so, what did you learn?May the Lord Bless,Betsy > > Hi Betsy, In the first ll years that I had RSD I had infusions > three> > times. The first time I had a Lidacaine infusion which worked > really> > well while it was going but as soon as it was taken out the pain was> > back. The second and third ones were done by a different dr and had> > lidocaine and another drug, and you have to forgive me, that I > forgot> > what it was. I have not thougt about those infusions for such a > long> > time but when they were mentioned then I remembered. The second and> > third infusions did the best and get this I had them both in for > about 3> > weeks each. That was 2 weeks longer then the first one. Most drs > now> > will only leave the infusions in for about a week now. Anyway that > is> > what people have told me.> > And it is true that they do work for some peole better than > others. > > > > Take care> > > > Hugs,> > babs> > >

[Guest guest]

Hi Betsy, I am all for having my husband with me when I go to the dr

in fact I think him being with me to support me is very necessary. But

in all the 23 years that I have had RSD he has never questioned my being

in pain wherever the pain might be. He also has never told me not to

have a kind of treatment or operation. He has always agreed that since

the pain is mine and I am the one that has to have the treatment or

operation it is my decision of whether to have it or not. I understand

you wanting to please your husband but how much will he be pleased when

and if you get full body RSD because maybe you didn't get a treatment or

operation. If you have pain in a new area then it is not his choice

whether to believe you or not. It is his responsibility to support you.

It is also his responsilitity to support you in whatever treatment or

operation you decide on. I really don't like to tell people what to do

and I am trying to be as gentle as possible. Please ask him why he does

not believe you when you tell him that you have pain in a certain area.

There has to be a reason and believe me whatever his reason is it is not

good enough. I don't think that there is a spouse on earth that likes

their other half to be in pain. Maybe he just does not want to accept

the fact that this new pain might be the RSD spreading. And believe me

if it is the RSD spreading, you really need to see a dr right away.

Please don't leave him decide for you what you should do. This is your

body and you are the one that has to deal with the pain constantly, why

should you suffer.

I really do understand your husband wanting to lend his opinion but in

the end everything you do to your body should be your decision. After

you have researched whatever treatment or operation that the dr offers

you, you are just as able as he is to make your own decisions.

I really hope that you understand what I am trying to explain to you.

It is so important that you not try something that might help you. My

prayers are with you.

Take care

Hugs,

babs

[Guest guest]

Hi Betsy, I think I must not have gotten one of your emails because you

just mentioned that you might try the SCS or the other. What is the

other treatment?

As for the cost of the SCS it was covered fully by my husbands insurance

and that was l2 years ago when the SCS was fairly new. Now it is much

more commonly done. Not one person that I have talked to about the SCS

has had any trouble getting their insurance to cover it.

The drs office usually talks with the insurance cos. and sends them the

literature on the SCS.

If you have any other questions please ask away. Take care

Hugs,

babs

[Guest guest]

Hi Betsy, I think I must not have gotten one of your emails because you

just mentioned that you might try the SCS or the other. What is the

other treatment?

As for the cost of the SCS it was covered fully by my husbands insurance

and that was l2 years ago when the SCS was fairly new. Now it is much

more commonly done. Not one person that I have talked to about the SCS

has had any trouble getting their insurance to cover it.

The drs office usually talks with the insurance cos. and sends them the

literature on the SCS.

If you have any other questions please ask away. Take care

Hugs,

babs

[Guest guest]

Hi Cass, Thank you for such a nice email. And believe me I don't know

everything about RSD. I learn so much from belonging to a group like

this. Believe me I did not start out being strong when I was first dx

with RSD. I was a basket case. I would have loved it if I could have

gone on the computer and found a group like this. But back then that

was not possible. There were not even any support groups around where I

live.

So I started one. I ran it for about 6 years until my health became so

bad I had to resign. If I can just help one person get through their

first couple years of RSD I will have accomplished something.

Again Thank You. And take care

Hugs,

babs

[Guest guest]

Hi Cass, Thank you for such a nice email. And believe me I don't know

everything about RSD. I learn so much from belonging to a group like

this. Believe me I did not start out being strong when I was first dx

with RSD. I was a basket case. I would have loved it if I could have

gone on the computer and found a group like this. But back then that

was not possible. There were not even any support groups around where I

live.

So I started one. I ran it for about 6 years until my health became so

bad I had to resign. If I can just help one person get through their

first couple years of RSD I will have accomplished something.

Again Thank You. And take care

Hugs,

babs

[Guest guest]

Hi Cass, Thank you for such a nice email. And believe me I don't know

everything about RSD. I learn so much from belonging to a group like

this. Believe me I did not start out being strong when I was first dx

with RSD. I was a basket case. I would have loved it if I could have

gone on the computer and found a group like this. But back then that

was not possible. There were not even any support groups around where I

live.

So I started one. I ran it for about 6 years until my health became so

bad I had to resign. If I can just help one person get through their

first couple years of RSD I will have accomplished something.

Again Thank You. And take care

Hugs,

babs