[CZZ74]

Hi,
My motivation for looking back into these options is the isolation of not being able to drive and the ensuing depression that accompaines the isolation. I live about 50 miles from my family, doesnt sound far but I only see one family member on a regular basis, my husband travels about 90% of the time.I am by all definitions , a shut in.

In any event. my body rejected the port a cath dr. S put in for my infusions.This was in year two. I had ketamine insusion for almost 4 yesrs. I dont know how many of us have been told our RSD is extremely opportunistic, but i have been.

The rejection of the port was a serious one and almost immediate. severe alloydina, edema, infection etc.

It had to be removed within a month on an emergency basis up at hahnemann hospital.
30,000 dollars to put in , 30k to take out. wow is right.

Following that,( I have cold rsd) I had picc lines put in and taken out constantly as it is near impossible to get an IV line in me. Again they had to keep coming out due to the RSD and severe alloydina and further complications.

Now I'm in my 6th year, I'm having alot of GI problems upper and lower, so I am looking at options again.

I've read alot about SCS on neurotalk, and its success. But not much about pain pumps. I have been told over and over I am not a canidate to scs for the above reasons as well as because i am full body.

Im wondering if anyone has the pain pump. I dont know how I would make it through hte surgery but with the help of my pain mangagement doctor it might be possible.

Could anyone share their experiences with a pain pump. what type you have etc.

Also, if you have scs, why did you select that over the pain pump or vs versa. thank you so much,

I appreciate any input anyone could share, cz sorry this is so long! I really do try to edit my posts and make them shorter!!!

[keep smilin]

Originally Posted by CZZ74

Hi,
My motivation for looking back into these options is the isolation of not being able to drive and the ensuing depression that accompaines the isolation. I live about 50 miles from my family, doesnt sound far but I only see one family member on a regular basis, my husband travels about 90% of the time.I am by all definitions , a shut in.

In any event. my body rejected the port a cath dr. S put in for my infusions.This was in year two. I had ketamine insusion for almost 4 yesrs. I dont know how many of us have been told our RSD is extremely opportunistic, but i have been.

The rejection of the port was a serious one and almost immediate. severe alloydina, edema, infection etc.

It had to be removed within a month on an emergency basis up at hahnemann hospital.
30,000 dollars to put in , 30k to take out. wow is right.

Following that,( I have cold rsd) I had picc lines put in and taken out constantly as it is near impossible to get an IV line in me. Again they had to keep coming out due to the RSD and severe alloydina and further complications.

Now I'm in my 6th year, I'm having alot of GI problems upper and lower, so I am looking at options again.

I've read alot about SCS on neurotalk, and its success. But not much about pain pumps. I have been told over and over I am not a canidate to scs for the above reasons as well as because i am full body.

Im wondering if anyone has the pain pump. I dont know how I would make it through hte surgery but with the help of my pain mangagement doctor it might be possible.

Could anyone share their experiences with a pain pump. what type you have etc.

Also, if you have scs, why did you select that over the pain pump or vs versa. thank you so much,

I appreciate any input anyone could share, cz sorry this is so long! I really do try to edit my posts and make them shorter!!!

My Dr. felt the SCS was the best route for me and really didn't suggest the pain pump, and I was not familar with the pain pump.. I had the trial SCS placed in for a 5 day trial in 4/08...it was a success as I realized it was helpful after it was removed..my implant surgery was put off and put off so many times due to the fact my Dr. felt I needed the smaller unit due to my size, which was not manufactured yet..So in 9/08.. The smaller SCS became available and was put in...sadly..it did not work for me..it actually makes my RSD mad and I can not wait to turn it off!!!!!I elect to keep it in as it was wired for both of my legs... my RSD had spread to both of my limbs by the time it was placed in so I will keep it to hopefully help with my good side as it worsens.. Take heed with the SCS.. it is a big step.. I don't really regret it due to future usage but the Dr.'s and unit managers putting it off basically cost me the chance to walk again...

[lostmary]

hi,
I've had 2 scs and I'm ready to go to the pump. if you pm me I'll give you the site of people who have or are getting the pump. There is so much info. about it.
The pump gives you much more freedom and seems to be harder to jar out of position. I would never have the scs again. it also caused my rsd to spread.

I'll be looking for your pm.

Hugs
Mary

[debbiehub]

just from what I have read, I would go with the pump too....

Love
Deb

[msdrea83]

i hated the scs it made me spread and the perm didn't cover the pain the way the trial did. not to mention the added hip and back pains from it and being shocked.

i know someone who has the pain pump and they love it.

[CZZ74]

Originally Posted by keep smilin

My Dr. felt the SCS was the best route for me and really didn't suggest the pain pump, and I was not familar with the pain pump.. I had the trial SCS placed in for a 5 day trial in 4/08...it was a success as I realized it was helpful after it was removed..my implant surgery was put off and put off so many times due to the fact my Dr. felt I needed the smaller unit due to my size, which was not manufactured yet..So in 9/08.. The smaller SCS became available and was put in...sadly..it did not work for me..it actually makes my RSD mad and I can not wait to turn it off!!!!!I elect to keep it in as it was wired for both of my legs... my RSD had spread to both of my limbs by the time it was placed in so I will keep it to hopefully help with my good side as it worsens.. Take heed with the SCS.. it is a big step.. I don't really regret it due to future usage but the Dr.'s and unit managers putting it off basically cost me the chance to walk again...

I dont even know what to say, yeah i would be mad to say the least. I dont know if it would apply at all but the tens machine aggravates my condition, is the theory at all based on the same theory? sorry if this is a naive question/ I am so so sorry for all of your disappointments with this, sincerely cz

[CZZ74]

Originally Posted by lostmary

hi,
I've had 2 scs and I'm ready to go to the pump. if you pm me I'll give you the site of people who have or are getting the pump. There is so much info. about it.
The pump gives you much more freedom and seems to be harder to jar out of position. I would never have the scs again. it also caused my rsd to spread.

I'll be looking for your pm.

Hugs
Mary

Hi Mary, thanks, Ive read alot about the pumps, but want to talk with those that have used it or are considering I am sending you a pm now thank you so much. cz

[angelrsd]

hey cz.

we have talked alot about it. and i couldnt do any of the things that i do with it. i have had mine since 04. and now am able to work part time. participate in the activities i do with the kids. and just be up and around. and feel like im an actual person again. having the pump doesnt stop the flairs and on a person to person basis it can lower your pain greatly. im happy with it. and would do it all over again.

im like you and have cold rsd.. no veins left have piccs all the time. so i understand where you are coming from.

pm me and we can talk more

carrie

[CZZ74]

Originally Posted by angelrsd

hey cz.

we have talked alot about it. and i couldnt do any of the things that i do with it. i have had mine since 04. and now am able to work part time. participate in the activities i do with the kids. and just be up and around. and feel like im an actual person again. having the pump doesnt stop the flairs and on a person to person basis it can lower your pain greatly. im happy with it. and would do it all over again.

im like you and have cold rsd.. no veins left have piccs all the time. so i understand where you are coming from.

pm me and we can talk more

carrie

Carrie, thanks so much, Ill pm. I go back and forth- forgive me forgetting- I take very high doses of morphine and I have absolutely no memory left. thank you agian. i am sending pm.cz

[daniella]

Now these are just things I have been told through the doctors and things I have read etc. Everyone is different. When I was at Cleveland Clinic the pain pump was suggested as one of the last options to try. Now the scs I was suppsed to try but since I had 2 procedures that increased my pain my doctor felt the scs may as well or may not work if the pain has been there too long and it is in my brain too much. I think more doctors for RSD do the scs then the pump since many are not big on narcotic meds that I have seen and how many have said in the long run it makes one more sensitive to pain and needing more. Now I am not saying people who take narcotics here are wrong because at this point I have no clue and one has to get through the day in the best possible way for the best quality they can get. Just through the many doctors I have seen.
I am sorry for all you are going through and I know how hard these choices are.