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went to my first session w/ pain mgmt doc

Posted by linda A on 11/02/01 at 02:36 (063991)

he wants me to increasethe topamax to 4000 mg in which i have already been taken for my bi-polar disease ( started that in sept ----- has been increase several times to 3oomg to oct date ) . psych doc said okay , because the mania is still not under controlled . pain doc said the best bet to control the pain in the foot would be to have a spinal cord stimulator implanted in the body . so, he gave me a a small book to read up on it . pro and cons . i would prefer not to have it done . has anyone thought to have this procedure done ? the whole procedure is done in two steps . instead of feeling pain you are suppose to feel a tingling sensation ( reminds me of the TENS unit ) . that really didn't take away the pain . need input . linda .

Re: went to my first session w/ pain mgmt doc

Janet C on 11/02/01 at 23:06 (064034)

Hi Linda,

My PMP has been trying to talk me into having the SCS for awhile now, and he gave me a copy of a video tape to watch by Medtronics, the company who makes it. Of course, getting your info from the company that produces them, and would profit from my implanting of the SCS, doesn't seem to be impartial.

I am also very reluctant. I know that it's not a choice to be taken lightly; so I have asked people on several other Message Boards, and gotten responses ranging from those who said it gave them some quality of life back, to those who warned me that the actual implant of the SCS was MUCH more painful than the trial operation. And that if you decide you don't like it after all, it's not as easily removed as it is to implant.

It also reminds me of a TENS Unit, but one that is implanted directly onto your spinal column.

Good luck with whatever you decide,

Janet

Re: hello janet ! which message board did you go to ?

linda A on 11/03/01 at 20:10 (064073)

i was only able to trial the TENS unit for a month , because of my insurance . it was during the summer month . had a hard time at home because i was wearing shorts and my cat loved playing w/ the wires . at work the wires kept pulling . kept increasing the ' zapping ' sensation , because i got used to it . in my little booklet they don't gurantee how long the battery is good for , so you might need another operation less than 6 mo to replace the battery , that if you use the zapping sensation alot ( like i did w/ the TENS unit ) . i would like to know what message boards you visit on the web ? thanks for responding . i am from louisville , ky what part of the USA are you from ? linda

Re: hello janet ! which message board did you go to ?

Janet C on 11/04/01 at 11:49 (064097)

Hi Linda,

Here is the link for one of my favorite Message Boards - besides this one. It is called Mass. Gen. Hosp. Braintalk Forums. There, you'll find many BB categories for different Neurological conditions; but I usually read and post on the Chronic Pain and the Reflex Sypathetic Dystrophy Boards.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi?action=intro&BypassCookie=true

Best wishes, Janet

P.S. I live in So Cal.

Re: janet------- i link on to that site but i didn't know where to go from there

linda A on 11/04/01 at 17:50 (064119)

i did see illness a-z . they had a go bi-polar site . where did see anything about spinal cord stimulation ? thanks for the site . so you are another california girl . well the winter is almost here in ky i wish i was there in california . i hate the cold . BURRRRRRRR !!!!!! i freeze easily . i don't know why i like working in the O.R. it is always cold . below 65 degrees . linda

Re: janet------- i link on to that site but i didn't know where to go from there

Janet C on 11/04/01 at 20:57 (064126)

Hi Linda,

When you go to the MGH Braintalk Forums, you'll see the different illnesses in alphabetical order; and one of the Message Boards on that list that I often go to is called 'Chronic Pain'. If you click on that, you can either post a new message there, asking about the SCS, or you can run a search of its forum, or archive, and see what people have said about it in the past.

It's really very easy to run a search, and there's a lot of good info there. You'll see in the top right hand corner, under Post New Topic, Profile/Register/Preferences/Faq/and SEARCH! Click on Search, then just type SCS in and you'll be amazed at how many times they've discussed this topic.

This site also offers a Medical Dictionary, Drug Info., and Chat Rooms.

I hope this helps you!
I'll try to send you some warm weather from Calif! ;)
Take care, Janet

Re: went to my first session w/ pain mgmt doc

john h on 11/05/01 at 09:08 (064151)

I know at least one person who has had this done linda. She had it done for back pain. This is a serious procedure with mixed results. One of the major institutions who perform this is The Texas Back Institute in Plano, Texas. I think they have a website http://www.texback.com . if that is not it I have it at home. I would be very careful as to who I would let perform this type of procedure. The patient is awakened during surgery so they can place the probes at the exact spot where they will stop the pain. This means you must be feeling the pain at the time you are awakend during surgery. Many of us do not have pain when laying down so I do not know how that would work. I may still have a quarterly publication they publish which explains the procedure. I would not let anyone do this who had not done it many times because they are working directly on your exposed spinal chord. If I still have the article on the procedure maybe I can scan it and email it to you.

Re: john h---- thank you . you are right .

linda A on 11/05/01 at 14:45 (064161)

i only have the real painful burning numbness pain when i am standing or sitting w/ my feet actually touching the ground . when the pain doc mention being woken up during surgery to see if the pain was gone i was wondering about that . thanks for bringing it to my attention . where have you been john ? tex barb have also been awol . i have been the only chatter box on this message board . where has my other KY partner been --- suzanne D ? i think her students kidnapped her . we got a new anesthesia doc joining our team at audubon hospital . guess where he is from ? ARKANSAW ----- i teased about the coming from SEC conference team being a big U of K fan , but he said he doesn't follow the sports program . one anesthesia guy said , he better start studying so he can keep up w/ the small talk . ha ha ha !!!!! ( maybe he is into churchilldowns racing--horses)

Re: john h---- thank you . you are right .

john h on 11/06/01 at 08:03 (064214)

Linda- I am still hiding out in Little Rock. I walk 3-4 miles several times a week. I tried running a few weeks ago and that caused a flareup so no more running-at least for now. Basically for the past 5 months I have been at a pain level of one and some days I do not even notice any pain at all. Still the occasional flareup when I do some stupid like trying to run. I do think the ESWT with Dr. Zuckerman has had much to do with bringing me out of a 7 year funk with PF. I have had 4 treatments and after each one I have always been just a little bit better. I would not rule out another treatment at some time in the future as shoot for my goal of zero pain. I still wear my orthotics on a regular basis and still use the Jade and wear a night splint about 50% of the time. I do not think about my feet nearly as much as I once did when my feet ruled my life. I still think there is a lot of hope for all of you as I have traveled this road of bi-laterial PF for over 7 years and now live close to a normal life. Without Scotts Board and all the participants here I cannot imagine where I would be today as my life had come to a screaming halt many years ago. I have made some special friends on this board who I intend to stay in touch with for the rest of my life.

Re: john h---- thank you . you are right .

Tammie on 11/06/01 at 09:16 (064222)

How wonderful john it is good to hear that u are fianlly getting something back in your life. Maybe not the 100% but as close as u have been for over your 7 years! I wish and pray for your continued happiness as you near and then reach your goal! May you always have great happiness and that your feet cooperate with this goal! Hugs to u and hoping that we hear many more happy stories about reaching this important goal of yours! I truly enjoyed the mountain one, even the choosing of my favorite beverage to take with u instead of the water lol! Have a wonderful day!

Re: john h---- thank you . you are right .

john h on 11/06/01 at 13:44 (064243)

tammie: i have thinking about hiking up the mountain again for several weeks now. It is cooler now and the 1st time i took no beverage at all (bad bad mistake). The leaves are turning now so the view from the top should really be great.

Re: john h---- thank you . you are right .

BrianG on 11/07/01 at 10:36 (064302)

Hi Linda,

A lot of anesthesologists also treat chronic pain. You may want to get a 2nd opinion from your new team doc. I've read quite a bit about the implanted stimulators, I don't think I'd want one. Too much to go wrong. Good luck with your decision.

BCG

Re: brian --- yes that is who i am seeing

linda on 11/07/01 at 15:35 (064324)

when the second pod suggested that both my feet were now in a chronic pain syndrome and more surgery would aggravate the situation . he suggested the pain mgt doc and possibly having a spinal block . had worked w/ dr dunbar before at the hospital . he was a fine anesthesiologist , who became a pain mgmt doc . when he suggested this spinal cord stimulator implantation , i was set back . had no time to look for support groups . been having problems w/ my internet providor . got a response from virtualdr.com , great tech group for computer questions . linda

Re: went to my first session w/ pain mgmt doc

Janet C on 11/02/01 at 23:06 (064034)

Hi Linda,

My PMP has been trying to talk me into having the SCS for awhile now, and he gave me a copy of a video tape to watch by Medtronics, the company who makes it. Of course, getting your info from the company that produces them, and would profit from my implanting of the SCS, doesn't seem to be impartial.

I am also very reluctant. I know that it's not a choice to be taken lightly; so I have asked people on several other Message Boards, and gotten responses ranging from those who said it gave them some quality of life back, to those who warned me that the actual implant of the SCS was MUCH more painful than the trial operation. And that if you decide you don't like it after all, it's not as easily removed as it is to implant.

It also reminds me of a TENS Unit, but one that is implanted directly onto your spinal column.

Good luck with whatever you decide,

Janet

Re: hello janet ! which message board did you go to ?

linda A on 11/03/01 at 20:10 (064073)

i was only able to trial the TENS unit for a month , because of my insurance . it was during the summer month . had a hard time at home because i was wearing shorts and my cat loved playing w/ the wires . at work the wires kept pulling . kept increasing the ' zapping ' sensation , because i got used to it . in my little booklet they don't gurantee how long the battery is good for , so you might need another operation less than 6 mo to replace the battery , that if you use the zapping sensation alot ( like i did w/ the TENS unit ) . i would like to know what message boards you visit on the web ? thanks for responding . i am from louisville , ky what part of the USA are you from ? linda

Re: hello janet ! which message board did you go to ?

Janet C on 11/04/01 at 11:49 (064097)

Hi Linda,

Here is the link for one of my favorite Message Boards - besides this one. It is called Mass. Gen. Hosp. Braintalk Forums. There, you'll find many BB categories for different Neurological conditions; but I usually read and post on the Chronic Pain and the Reflex Sypathetic Dystrophy Boards.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi?action=intro&BypassCookie=true

Best wishes, Janet

P.S. I live in So Cal.

Re: janet------- i link on to that site but i didn't know where to go from there

linda A on 11/04/01 at 17:50 (064119)

i did see illness a-z . they had a go bi-polar site . where did see anything about spinal cord stimulation ? thanks for the site . so you are another california girl . well the winter is almost here in ky i wish i was there in california . i hate the cold . BURRRRRRRR !!!!!! i freeze easily . i don't know why i like working in the O.R. it is always cold . below 65 degrees . linda

Re: janet------- i link on to that site but i didn't know where to go from there

Janet C on 11/04/01 at 20:57 (064126)

Hi Linda,

When you go to the MGH Braintalk Forums, you'll see the different illnesses in alphabetical order; and one of the Message Boards on that list that I often go to is called 'Chronic Pain'. If you click on that, you can either post a new message there, asking about the SCS, or you can run a search of its forum, or archive, and see what people have said about it in the past.

It's really very easy to run a search, and there's a lot of good info there. You'll see in the top right hand corner, under Post New Topic, Profile/Register/Preferences/Faq/and SEARCH! Click on Search, then just type SCS in and you'll be amazed at how many times they've discussed this topic.

This site also offers a Medical Dictionary, Drug Info., and Chat Rooms.

I hope this helps you!
I'll try to send you some warm weather from Calif! ;)
Take care, Janet

Re: went to my first session w/ pain mgmt doc

john h on 11/05/01 at 09:08 (064151)

I know at least one person who has had this done linda. She had it done for back pain. This is a serious procedure with mixed results. One of the major institutions who perform this is The Texas Back Institute in Plano, Texas. I think they have a website http://www.texback.com . if that is not it I have it at home. I would be very careful as to who I would let perform this type of procedure. The patient is awakened during surgery so they can place the probes at the exact spot where they will stop the pain. This means you must be feeling the pain at the time you are awakend during surgery. Many of us do not have pain when laying down so I do not know how that would work. I may still have a quarterly publication they publish which explains the procedure. I would not let anyone do this who had not done it many times because they are working directly on your exposed spinal chord. If I still have the article on the procedure maybe I can scan it and email it to you.

Re: john h---- thank you . you are right .

linda A on 11/05/01 at 14:45 (064161)

i only have the real painful burning numbness pain when i am standing or sitting w/ my feet actually touching the ground . when the pain doc mention being woken up during surgery to see if the pain was gone i was wondering about that . thanks for bringing it to my attention . where have you been john ? tex barb have also been awol . i have been the only chatter box on this message board . where has my other KY partner been --- suzanne D ? i think her students kidnapped her . we got a new anesthesia doc joining our team at audubon hospital . guess where he is from ? ARKANSAW ----- i teased about the coming from SEC conference team being a big U of K fan , but he said he doesn't follow the sports program . one anesthesia guy said , he better start studying so he can keep up w/ the small talk . ha ha ha !!!!! ( maybe he is into churchilldowns racing--horses)

Re: john h---- thank you . you are right .

john h on 11/06/01 at 08:03 (064214)

Linda- I am still hiding out in Little Rock. I walk 3-4 miles several times a week. I tried running a few weeks ago and that caused a flareup so no more running-at least for now. Basically for the past 5 months I have been at a pain level of one and some days I do not even notice any pain at all. Still the occasional flareup when I do some stupid like trying to run. I do think the ESWT with Dr. Zuckerman has had much to do with bringing me out of a 7 year funk with PF. I have had 4 treatments and after each one I have always been just a little bit better. I would not rule out another treatment at some time in the future as shoot for my goal of zero pain. I still wear my orthotics on a regular basis and still use the Jade and wear a night splint about 50% of the time. I do not think about my feet nearly as much as I once did when my feet ruled my life. I still think there is a lot of hope for all of you as I have traveled this road of bi-laterial PF for over 7 years and now live close to a normal life. Without Scotts Board and all the participants here I cannot imagine where I would be today as my life had come to a screaming halt many years ago. I have made some special friends on this board who I intend to stay in touch with for the rest of my life.

Re: john h---- thank you . you are right .

Tammie on 11/06/01 at 09:16 (064222)

How wonderful john it is good to hear that u are fianlly getting something back in your life. Maybe not the 100% but as close as u have been for over your 7 years! I wish and pray for your continued happiness as you near and then reach your goal! May you always have great happiness and that your feet cooperate with this goal! Hugs to u and hoping that we hear many more happy stories about reaching this important goal of yours! I truly enjoyed the mountain one, even the choosing of my favorite beverage to take with u instead of the water lol! Have a wonderful day!

Re: john h---- thank you . you are right .

john h on 11/06/01 at 13:44 (064243)

tammie: i have thinking about hiking up the mountain again for several weeks now. It is cooler now and the 1st time i took no beverage at all (bad bad mistake). The leaves are turning now so the view from the top should really be great.

Re: john h---- thank you . you are right .

BrianG on 11/07/01 at 10:36 (064302)

Hi Linda,

A lot of anesthesologists also treat chronic pain. You may want to get a 2nd opinion from your new team doc. I've read quite a bit about the implanted stimulators, I don't think I'd want one. Too much to go wrong. Good luck with your decision.

BCG

Re: brian --- yes that is who i am seeing

linda on 11/07/01 at 15:35 (064324)

when the second pod suggested that both my feet were now in a chronic pain syndrome and more surgery would aggravate the situation . he suggested the pain mgt doc and possibly having a spinal block . had worked w/ dr dunbar before at the hospital . he was a fine anesthesiologist , who became a pain mgmt doc . when he suggested this spinal cord stimulator implantation , i was set back . had no time to look for support groups . been having problems w/ my internet providor . got a response from virtualdr.com , great tech group for computer questions . linda