Moldova
06-27-2008, 01:10 PM
Hello everybody! I hope new day brings you some relieve...
I had yesterday an app at my surgeon's office with his PA. She is very knowlegable, works for many years at his office (HSS) and very nice (nice combination for a change, is in it?:))
She told me something i still think about and still confused. Maybe someone here can explain me in plain English what his means.:) I will put (?) where I need help understanding.
She said that people who on narco meds for a long time have different understanding of pain (?) because if I wouldn't ever been on them I would tolerate pain better or maybe just taking Tylenol would help.
I asked her is this means that pain is in a people's head only? She said NO, this just means that body gets used to narco meds and if you take something like Advil or Tylenol will not help you anymore because your body got used to strong PK. She said this is type of addiction.
I heard that and got upset. Very nicely I asked her is she suggesting I am an addict. She said Absolutely NOT, you are not an addict. But your body got used to narco meds and she is afraid if I go off them - nothing else will help me (?). Yes, and what is she suggesting than? What does it mean?
She asked if I think I would be able to go off them and see how will I do, just as an experiment... I asked her nicely if she ever had nerve pain in her legs and feet or if she ever had spinal pains or if she ever leaved without able to walk, sit or stand .... She said NO. I said: "O, that is why you suggest me to go off them not even 6 month post second fusion.".
Plus, how does she know that my body got used to it? I still take same dose as I took 4 month ago, I try my best not increase the doses, hold to take BT as long as I can even through a lots of pain...
I don't know maybe I missunderstand something here or maybe just over reacted, but something bothers me after talking to her...
What do you think? Any advices?
Thank you in advance all...
I had yesterday an app at my surgeon's office with his PA. She is very knowlegable, works for many years at his office (HSS) and very nice (nice combination for a change, is in it?:))
She told me something i still think about and still confused. Maybe someone here can explain me in plain English what his means.:) I will put (?) where I need help understanding.
She said that people who on narco meds for a long time have different understanding of pain (?) because if I wouldn't ever been on them I would tolerate pain better or maybe just taking Tylenol would help.
I asked her is this means that pain is in a people's head only? She said NO, this just means that body gets used to narco meds and if you take something like Advil or Tylenol will not help you anymore because your body got used to strong PK. She said this is type of addiction.
I heard that and got upset. Very nicely I asked her is she suggesting I am an addict. She said Absolutely NOT, you are not an addict. But your body got used to narco meds and she is afraid if I go off them - nothing else will help me (?). Yes, and what is she suggesting than? What does it mean?
She asked if I think I would be able to go off them and see how will I do, just as an experiment... I asked her nicely if she ever had nerve pain in her legs and feet or if she ever had spinal pains or if she ever leaved without able to walk, sit or stand .... She said NO. I said: "O, that is why you suggest me to go off them not even 6 month post second fusion.".
Plus, how does she know that my body got used to it? I still take same dose as I took 4 month ago, I try my best not increase the doses, hold to take BT as long as I can even through a lots of pain...
I don't know maybe I missunderstand something here or maybe just over reacted, but something bothers me after talking to her...
What do you think? Any advices?
Thank you in advance all...
Sponsor
sandim
06-27-2008, 01:40 PM
Moldova,
I think she was suggesting that you take a "drug vacation". In other words, she wanted you to agree to go off the meds for 6 months, and to see how you do, painwise and living your life wise.
I am no fan of drug vacations. I think they are a bunch of garbage that doctors use to try to get patients off pain meds, and then if they have to go back on them, using that as a basis ( reason) to back up their prescribing.
There aren't many of us in the world of chronic pain, who like taking pills day after day, but we also have come to accept that in order to have a life, we have to take them.
Some doctors, despite their supposed enlightened perspectives toward narcotics in chronic pain, still don't like prescribing them.
If you need them Moldova, then you need them and it sounds like you do. So, don't let her force you into taking a drug vacation when you need the meds to live your life.
Sandi
I think she was suggesting that you take a "drug vacation". In other words, she wanted you to agree to go off the meds for 6 months, and to see how you do, painwise and living your life wise.
I am no fan of drug vacations. I think they are a bunch of garbage that doctors use to try to get patients off pain meds, and then if they have to go back on them, using that as a basis ( reason) to back up their prescribing.
There aren't many of us in the world of chronic pain, who like taking pills day after day, but we also have come to accept that in order to have a life, we have to take them.
Some doctors, despite their supposed enlightened perspectives toward narcotics in chronic pain, still don't like prescribing them.
If you need them Moldova, then you need them and it sounds like you do. So, don't let her force you into taking a drug vacation when you need the meds to live your life.
Sandi
Fabrashamx
06-27-2008, 01:56 PM
I think she was talking about tolerence levels, but very badly. I also agree with Sandi that she wants you to take a 'med vacation' which is not well thought of by and large on this board lol.
I would ask her about lateral moves, such as switching from a 5 mg oxy to a 10 mg hydro (just an example) sometimes doing things like that slows down tolerence levels, and in a way where you are not thrown into pain and withdrawal, Even though it wont stop tolerence building up completely.
Even when you go off of a med, and then start again, tolerence plays a part, you would not be as tolerent as you were when taking them daily, but you would build a tolerence much faster than someone who had never taken opiate meds before.
Good luck and hang in there, I am sure you get more and better advice from the rest of the gang soon.
Your Friend, Fabby :)
I would ask her about lateral moves, such as switching from a 5 mg oxy to a 10 mg hydro (just an example) sometimes doing things like that slows down tolerence levels, and in a way where you are not thrown into pain and withdrawal, Even though it wont stop tolerence building up completely.
Even when you go off of a med, and then start again, tolerence plays a part, you would not be as tolerent as you were when taking them daily, but you would build a tolerence much faster than someone who had never taken opiate meds before.
Good luck and hang in there, I am sure you get more and better advice from the rest of the gang soon.
Your Friend, Fabby :)
cmpgirl
06-27-2008, 02:05 PM
Moldova, I so agree with Sandim. I also do not believe in med vacations or holidays, as they are sometimes called. I would love to know who came up with that little euphamism! Going through withdrawl and having constant uncontrolled pain is no holiday in my book! I know there are some here on the boards who can see a positive side to this, bit I really think it depends on the person and how they tolerate pain and/or withdrawl symptoms.
If a person can set aside days weeks or months of their life to go through a transition like this, more power to them. But if I did not have my meds along with the other things that I do to assist in the management of my pain, I would be bedridden and of no use to myself or my family. I would never be willing to make that kind of sacrifice!
I don't know how your actual doctor feels about this. Is is just this PA who is suggesting the change? Or is she opening a dialog for your doctor? If this is something they are insisting on and you are not comfortable with it, I think you may want to seek out a different PM doc. I know this one is affiliated with a major hospital and has a glowing reputation, but it does not mean that he is the best physician for you and your needs. Not all doctors can be all things to every patient. It really sounds as though he is looking for some justification for prescribing narc meds. Maybe the DEA is on his back or something. Even if that is the case, I don't feel like you should have to pay the price. Just my opinion.
I'm so sorry you had to go through that. I don't blame you for being defensive and confused. I would have been too. It would have made me feel exactly like it did you and that is just not fair of this PA to make you feel this way. I hope you can have an open and honest talk with your doctor soon and let him know how this has affected you. Just because he has an MD after his name, doesn't mean he knows everything. And if he is worth the oath he took to first do no harm, he would not put you through something like that. Again, just my opinion.
I'm sorry I got on my soapbox. It's just that every time I hear of someone going through this kind of thing, it really gets my hackles up! Please know that I am here for you and keeping you in my prayers, as always. You are one of the kindest, most caring people I know and I am so sorry this is happening. Please keep us posted as to what you decide to do. I am here if you need anything. Very fondly, CMP/MM (((((Moldova)))))
If a person can set aside days weeks or months of their life to go through a transition like this, more power to them. But if I did not have my meds along with the other things that I do to assist in the management of my pain, I would be bedridden and of no use to myself or my family. I would never be willing to make that kind of sacrifice!
I don't know how your actual doctor feels about this. Is is just this PA who is suggesting the change? Or is she opening a dialog for your doctor? If this is something they are insisting on and you are not comfortable with it, I think you may want to seek out a different PM doc. I know this one is affiliated with a major hospital and has a glowing reputation, but it does not mean that he is the best physician for you and your needs. Not all doctors can be all things to every patient. It really sounds as though he is looking for some justification for prescribing narc meds. Maybe the DEA is on his back or something. Even if that is the case, I don't feel like you should have to pay the price. Just my opinion.
I'm so sorry you had to go through that. I don't blame you for being defensive and confused. I would have been too. It would have made me feel exactly like it did you and that is just not fair of this PA to make you feel this way. I hope you can have an open and honest talk with your doctor soon and let him know how this has affected you. Just because he has an MD after his name, doesn't mean he knows everything. And if he is worth the oath he took to first do no harm, he would not put you through something like that. Again, just my opinion.
I'm sorry I got on my soapbox. It's just that every time I hear of someone going through this kind of thing, it really gets my hackles up! Please know that I am here for you and keeping you in my prayers, as always. You are one of the kindest, most caring people I know and I am so sorry this is happening. Please keep us posted as to what you decide to do. I am here if you need anything. Very fondly, CMP/MM (((((Moldova)))))
Moldova
06-27-2008, 02:20 PM
Fabby, Sandim, thank you so much for your respond.
I understood that she wants me "to try" to leave without them for a while.
I had my last MRI and ex-ray with me; when she took a look at them she said: "O, my God, I can't believe with all this you still smile". She had resident in a room and told him: this lady is very strong, she has so many post-op complications and never complains; I wouldn't be able to go through this with a smile like you always do.
And also she told me that to have a spine I have and Arachnodities -I will never leave without CP.
If any of you know - Arachnoidities is the worse case scenario for anybody after spinal surgeries because this non-curable non-treatable condition drive people to full debilitating state;stronger and more PK needed during their life because more and more nerves get severely scarred in a spine and extremedies. And on top of everything I am going now through a lots of tests because MS suspected!
How can I leave without pain meds? I wish I could, I really do. But just the thought fears me because I don't see how this possible. Dr Camissa who is my surgeon told me before my second surgery that I better have some savings because I will need pain meds for the rest of my life...
I wonder why would she even suggest such thing to me. Don't know why but for some reason it disturbed me... maybe I am just silly?:confused:
I understood that she wants me "to try" to leave without them for a while.
I had my last MRI and ex-ray with me; when she took a look at them she said: "O, my God, I can't believe with all this you still smile". She had resident in a room and told him: this lady is very strong, she has so many post-op complications and never complains; I wouldn't be able to go through this with a smile like you always do.
And also she told me that to have a spine I have and Arachnodities -I will never leave without CP.
If any of you know - Arachnoidities is the worse case scenario for anybody after spinal surgeries because this non-curable non-treatable condition drive people to full debilitating state;stronger and more PK needed during their life because more and more nerves get severely scarred in a spine and extremedies. And on top of everything I am going now through a lots of tests because MS suspected!
How can I leave without pain meds? I wish I could, I really do. But just the thought fears me because I don't see how this possible. Dr Camissa who is my surgeon told me before my second surgery that I better have some savings because I will need pain meds for the rest of my life...
I wonder why would she even suggest such thing to me. Don't know why but for some reason it disturbed me... maybe I am just silly?:confused:
forginon
06-27-2008, 03:53 PM
Moldova,
This is, or should be, your choice.
If your doc is giving you the choice, then my recommendation is to kindly refuse. I really do not think a drug holiday will reverse or reduce your tolerance level as she might be hoping. And it would only be temporary anyway. Her hope is that you would go off the meds and magically find that you really don't need them. I don't see that happening.
If it ain't broke, don't fix it!
Regarding the comment about savings. I think the doc is just saying that you'll be paying for pain meds for the rest of your life. And they can be expensive - so you should be sure to save up. Not a real good bedside manner is it?
steve
This is, or should be, your choice.
If your doc is giving you the choice, then my recommendation is to kindly refuse. I really do not think a drug holiday will reverse or reduce your tolerance level as she might be hoping. And it would only be temporary anyway. Her hope is that you would go off the meds and magically find that you really don't need them. I don't see that happening.
If it ain't broke, don't fix it!
Regarding the comment about savings. I think the doc is just saying that you'll be paying for pain meds for the rest of your life. And they can be expensive - so you should be sure to save up. Not a real good bedside manner is it?
steve
123dietdrpepper
06-27-2008, 04:47 PM
This makes me angry so very angry. Do you think she was doing this so that she could document that she talked to you regarding the long term effect of being on meds? I don't get it with your complex case how one could even suggest it.
Moldova
06-27-2008, 07:12 PM
CMPGirl, Steve, Diet - thank you dear people for your replies.
I agree with you all 100% about vacation or holidays without our meds. She is just a PA of my SURGEOn, not even Neurologist or PM! They don't even prescribe meds to me anymore - what was her problem to start this conversation, I have no clue.
I did not expect that we have to discuss this with her and maybe that is why I am unpleasantly shocked.
I am not planning to do so not because I like to take my meds, but because I can't function without them; bad enought i can't drive due to feet and legs nerve damages, but to take away from me ability to walk a little and be there for my family and somewhat enjoy my life?
Thank you all again and I wish you to feel better, please!:)
I agree with you all 100% about vacation or holidays without our meds. She is just a PA of my SURGEOn, not even Neurologist or PM! They don't even prescribe meds to me anymore - what was her problem to start this conversation, I have no clue.
I did not expect that we have to discuss this with her and maybe that is why I am unpleasantly shocked.
I am not planning to do so not because I like to take my meds, but because I can't function without them; bad enought i can't drive due to feet and legs nerve damages, but to take away from me ability to walk a little and be there for my family and somewhat enjoy my life?
Thank you all again and I wish you to feel better, please!:)
stymie82
06-27-2008, 08:50 PM
Moldova, I know where I stand with my arachnoiditis pain, bilateral nerve pain in legs, intense back pain and all the goodies that go with the diagnosis. My function and enjoyment of life would be nil, if not for the cocktail of meds that I must take every day. You have arachnoiditis and many hardware and structural problems from multiple surgeries. The suggestion of going off your meds is very foolish, IMHO. In my case my BP is normal with meds, and spikes terribly without. Going off the meds might injure organs or a cause a stroke! Please don't get talked into trying this. You are also only 6 month post-op on a very serious fusion operation! Please stay safe and decline this experiment. I will always be in your debt as you getting dxed with Arachnoiditis led to me getting correctly diagnosed. :angel:
sammyo1
06-27-2008, 10:58 PM
Moldova, I can understand why you would be confused. I am glad you spoke up, I just dont get why of all people medical proff. think its ok to suffer in pain. I cant phantom not having anything, I honestly cant. What you have described definantly does not sound like pain you should have to go through for any number of days with nothing to take.
Anytime I see posts that talk about taking someone off their meds who suffer chronic pain scares the heck out of me. I for one would probably have a break down right there in the office. I agree with cmp, I would be of no use to myself or anyone else, in fact I would probably be so sick that there would be no way, & I am not talking about being sick from coming off the meds, I am talking about being sick from the pain. Gsoh I hope noone even attempts to do this with you. I will be thinking of you, God bless, Sammy
Anytime I see posts that talk about taking someone off their meds who suffer chronic pain scares the heck out of me. I for one would probably have a break down right there in the office. I agree with cmp, I would be of no use to myself or anyone else, in fact I would probably be so sick that there would be no way, & I am not talking about being sick from coming off the meds, I am talking about being sick from the pain. Gsoh I hope noone even attempts to do this with you. I will be thinking of you, God bless, Sammy
sandim
06-27-2008, 11:44 PM
Moldova,
I also have Arachnoiditis after having back surgery. .....two of them in fact. I am just about to come up on my one year mark after my 2nd surgery, so I know the levels of pain you are dealing with anyway, and then you add that you are 6 months out from your second multi level surgery and there is no way that you are ready to come off pain meds, if ever.
You said this was your neurosurgeon's PA? It' s no wonder that she brought it up to you. They ( surgeon's) as a whole, do not like to see someone on pain meds for real long after surgery, because to them, it seems to be an indicator that they "failed" because they didn't erase the pain. They don't seem to understand , that in some situations, they not only aren't going to erase the pain, but some things just can't improve, no matter what....
I would tell her next time that you will be returning to the care of your PM doctor, for evaluation on pain meds and any other recommendations, and you don't feel physically ready to deal with stopping your pain meds because you will not be able to perform any activities of daily living without them. Your pain meds allow you to function and to smile even though your body has been through a lot with having two surgeries and the arach.....that might help her see things a little better.
Sandi
I also have Arachnoiditis after having back surgery. .....two of them in fact. I am just about to come up on my one year mark after my 2nd surgery, so I know the levels of pain you are dealing with anyway, and then you add that you are 6 months out from your second multi level surgery and there is no way that you are ready to come off pain meds, if ever.
You said this was your neurosurgeon's PA? It' s no wonder that she brought it up to you. They ( surgeon's) as a whole, do not like to see someone on pain meds for real long after surgery, because to them, it seems to be an indicator that they "failed" because they didn't erase the pain. They don't seem to understand , that in some situations, they not only aren't going to erase the pain, but some things just can't improve, no matter what....
I would tell her next time that you will be returning to the care of your PM doctor, for evaluation on pain meds and any other recommendations, and you don't feel physically ready to deal with stopping your pain meds because you will not be able to perform any activities of daily living without them. Your pain meds allow you to function and to smile even though your body has been through a lot with having two surgeries and the arach.....that might help her see things a little better.
Sandi
Round1
06-28-2008, 08:11 AM
Moldova, What I am reading is that this is all the secretary's talk. She is saying to you about body acceptance etc... I think she has been snoopying in your file to long. I think that she should not have had this conversation with you. She is not medically qualified to discuss this with you. You dont just stop taking your meds. This would have to be a slow process. I think if your doctor knew that she was discussing this with you he/she would not be very happy. What if you decided suddenly to stop taking your meds on the secretarys advice, and told your doctor. What would he/she say.
I have actually found with my own G.P. getting too familiar with the receptionists has lead the receptionist commenting to the doctor on the way I am or feeling. I now do the poliet hello, and talk about anything but my pain. She always brings it up and I say Good thanks, could be worse. I never actually tell her much now.
I dont think you have to worry about your GP stopping your meds, or going on a holiday.............. I think this was chit chat from an unqualified person that had no right to comment at all.
Round1
I have actually found with my own G.P. getting too familiar with the receptionists has lead the receptionist commenting to the doctor on the way I am or feeling. I now do the poliet hello, and talk about anything but my pain. She always brings it up and I say Good thanks, could be worse. I never actually tell her much now.
I dont think you have to worry about your GP stopping your meds, or going on a holiday.............. I think this was chit chat from an unqualified person that had no right to comment at all.
Round1
Executor
06-28-2008, 10:24 AM
I think she was talking about tolerence levels, but very badly.
I would agree. Additionally, you have to remember that she's a PA....A small step up from a nurse. Until a Doc starts talking this (or related) language, I wouldn't get too concerned.
I don't think she was necessarily referring to a "drug holiday", but rather, lets just see if taking something less works....Almost like a experiment. Again, this shows that she knows NOTHING about narcotics and pain control. You just don't stop taking something and "Lets just see if something else works."
Even when you go off of a med, and then start again, tolerence plays a part, you would not be as tolerent as you were when taking them daily, but you would build a tolerence much faster than someone who had never taken opiate meds before.
Very true. This is why "drug holidays" with PM patients don't work. Drug holidays work with allergy meds, and etc.
I would just very pleasantly listen and politely refuse like Steve suggested....And then go about my way. Again, until a Doc starts talking like this, I wouldn't be very concerned.
Good luck and I think things will be fine!
Ex
I would agree. Additionally, you have to remember that she's a PA....A small step up from a nurse. Until a Doc starts talking this (or related) language, I wouldn't get too concerned.
I don't think she was necessarily referring to a "drug holiday", but rather, lets just see if taking something less works....Almost like a experiment. Again, this shows that she knows NOTHING about narcotics and pain control. You just don't stop taking something and "Lets just see if something else works."
Even when you go off of a med, and then start again, tolerence plays a part, you would not be as tolerent as you were when taking them daily, but you would build a tolerence much faster than someone who had never taken opiate meds before.
Very true. This is why "drug holidays" with PM patients don't work. Drug holidays work with allergy meds, and etc.
I would just very pleasantly listen and politely refuse like Steve suggested....And then go about my way. Again, until a Doc starts talking like this, I wouldn't be very concerned.
Good luck and I think things will be fine!
Ex
Fabrashamx
06-28-2008, 12:40 PM
And dont forget, sometimes PA stands for Passive-Agressive.
What Ex says is even more important if you have an assistant who feels the need to constantly 'prove' themselves. I am not saying all or even most nurses and PA's have that attitude, but some of them do. and thats when we should focus on what the doctor says only.
Hope everyone is having a good weekend so far.
Hugs, Fabby :)
What Ex says is even more important if you have an assistant who feels the need to constantly 'prove' themselves. I am not saying all or even most nurses and PA's have that attitude, but some of them do. and thats when we should focus on what the doctor says only.
Hope everyone is having a good weekend so far.
Hugs, Fabby :)
Moldova
06-28-2008, 04:42 PM
Moldova, I know where I stand with my arachnoiditis pain, bilateral nerve pain in legs, intense back pain and all the goodies that go with the diagnosis. My function and enjoyment of life would be nil, if not for the cocktail of meds that I must take every day. You have arachnoiditis and many hardware and structural problems from multiple surgeries. The suggestion of going off your meds is very foolish, IMHO. In my case my BP is normal with meds, and spikes terribly without. Going off the meds might injure organs or a cause a stroke! Please don't get talked into trying this. You are also only 6 month post-op on a very serious fusion operation! Please stay safe and decline this experiment. I will always be in your debt as you getting dxed with Arachnoiditis led to me getting correctly diagnosed. :angel:
Styme, I am so thrilled that I was able to help you - this means so much to both of us.
Thank you for your advice, I know you all 100% right. I just very confused why in a world she would even start this conversation. She is worry about my liver? Who cares about healthy liver if leaving in such severe pain is no worth leaving anyway? I got into my car after this app crying and being scared- what if they do it to me? That is why was important to me to hear from my "board friends" what do they think. I did not know that I can insist on staying on them, like Steve said, but I learned here that I can...
How are you doing pain wise? What do you feel helps you with pain? And what kind meds are you on? I hope you don't mind me asking you
All the best to you...
Styme, I am so thrilled that I was able to help you - this means so much to both of us.
Thank you for your advice, I know you all 100% right. I just very confused why in a world she would even start this conversation. She is worry about my liver? Who cares about healthy liver if leaving in such severe pain is no worth leaving anyway? I got into my car after this app crying and being scared- what if they do it to me? That is why was important to me to hear from my "board friends" what do they think. I did not know that I can insist on staying on them, like Steve said, but I learned here that I can...
How are you doing pain wise? What do you feel helps you with pain? And what kind meds are you on? I hope you don't mind me asking you
All the best to you...
Moldova
06-28-2008, 04:51 PM
I can't agree with you all more and I am so glad to get all these responds.
I just learned that I can refuse to go off them - did I understand this right? I never knew about it, thank you. Nice to have a choice.
I really got confused and very upset; how easy some of them say to you that being on this type of meds is not good for you. I always say that nobody does it by choice, I must take them because quality of life is very important to me.
And only because she is my surgeon's at HSS PA I got upset. For some reason I thought maybe he asked her to talk to me about it? But than he is not the one prescribes these meds to me, it's my PM who does it... but they all work together on my case: PM, surgeon and Neurologist.
They all go over my tests and MRI's, my treatments... this was the reason why I dot concern.
Thank you so much again to all of you and all the best!
I just learned that I can refuse to go off them - did I understand this right? I never knew about it, thank you. Nice to have a choice.
I really got confused and very upset; how easy some of them say to you that being on this type of meds is not good for you. I always say that nobody does it by choice, I must take them because quality of life is very important to me.
And only because she is my surgeon's at HSS PA I got upset. For some reason I thought maybe he asked her to talk to me about it? But than he is not the one prescribes these meds to me, it's my PM who does it... but they all work together on my case: PM, surgeon and Neurologist.
They all go over my tests and MRI's, my treatments... this was the reason why I dot concern.
Thank you so much again to all of you and all the best!
Moldova
06-28-2008, 04:54 PM
Moldova,
I also have Arachnoiditis after having back surgery. .....two of them in fact. I am just about to come up on my one year mark after my 2nd surgery, so I know the levels of pain you are dealing with anyway, and then you add that you are 6 months out from your second multi level surgery and there is no way that you are ready to come off pain meds, if ever.
You said this was your neurosurgeon's PA? It' s no wonder that she brought it up to you. They ( surgeon's) as a whole, do not like to see someone on pain meds for real long after surgery, because to them, it seems to be an indicator that they "failed" because they didn't erase the pain. They don't seem to understand , that in some situations, they not only aren't going to erase the pain, but some things just can't improve, no matter what....
I would tell her next time that you will be returning to the care of your PM doctor, for evaluation on pain meds and any other recommendations, and you don't feel physically ready to deal with stopping your pain meds because you will not be able to perform any activities of daily living without them. Your pain meds allow you to function and to smile even though your body has been through a lot with having two surgeries and the arach.....that might help her see things a little better.
Sandi
Sandi,
how are you doing with your Arachnoidities? How is your pain? What meds are you on (hope you don't mind me asking) and do they help with at least some pain?
I did not hear from you for a long time, did not know what to think. Thank you for responding to my post.
I wish you all the best and maybe better day tomorrow...:)
I also have Arachnoiditis after having back surgery. .....two of them in fact. I am just about to come up on my one year mark after my 2nd surgery, so I know the levels of pain you are dealing with anyway, and then you add that you are 6 months out from your second multi level surgery and there is no way that you are ready to come off pain meds, if ever.
You said this was your neurosurgeon's PA? It' s no wonder that she brought it up to you. They ( surgeon's) as a whole, do not like to see someone on pain meds for real long after surgery, because to them, it seems to be an indicator that they "failed" because they didn't erase the pain. They don't seem to understand , that in some situations, they not only aren't going to erase the pain, but some things just can't improve, no matter what....
I would tell her next time that you will be returning to the care of your PM doctor, for evaluation on pain meds and any other recommendations, and you don't feel physically ready to deal with stopping your pain meds because you will not be able to perform any activities of daily living without them. Your pain meds allow you to function and to smile even though your body has been through a lot with having two surgeries and the arach.....that might help her see things a little better.
Sandi
Sandi,
how are you doing with your Arachnoidities? How is your pain? What meds are you on (hope you don't mind me asking) and do they help with at least some pain?
I did not hear from you for a long time, did not know what to think. Thank you for responding to my post.
I wish you all the best and maybe better day tomorrow...:)
Moldova
06-28-2008, 04:57 PM
Moldova, What I am reading is that this is all the secretary's talk. She is saying to you about body acceptance etc... I think she has been snoopying in your file to long. I think that she should not have had this conversation with you. She is not medically qualified to discuss this with you. You dont just stop taking your meds. This would have to be a slow process. I think if your doctor knew that she was discussing this with you he/she would not be very happy. What if you decided suddenly to stop taking your meds on the secretarys advice, and told your doctor. What would he/she say.
I have actually found with my own G.P. getting too familiar with the receptionists has lead the receptionist commenting to the doctor on the way I am or feeling. I now do the poliet hello, and talk about anything but my pain. She always brings it up and I say Good thanks, could be worse. I never actually tell her much now.
Round1,
you are right about this especially at GP's office. I always feel funny when they ask me in front of other patients how am I doing. I try to change the subject or say I am OK. I dislike this unprofessional relationships.
This actually was at my surgeon's office, it was his PA - that is why I got scared thinking what if he asked her to talk about it with me even though he never prescribes my meds to me, it's PM who does it.
Best wishes to you and feel better, sweeite!
I dont think you have to worry about your GP stopping your meds, or going on a holiday.............. I think this was chit chat from an unqualified person that had no right to comment at all.
Round1
I have actually found with my own G.P. getting too familiar with the receptionists has lead the receptionist commenting to the doctor on the way I am or feeling. I now do the poliet hello, and talk about anything but my pain. She always brings it up and I say Good thanks, could be worse. I never actually tell her much now.
Round1,
you are right about this especially at GP's office. I always feel funny when they ask me in front of other patients how am I doing. I try to change the subject or say I am OK. I dislike this unprofessional relationships.
This actually was at my surgeon's office, it was his PA - that is why I got scared thinking what if he asked her to talk about it with me even though he never prescribes my meds to me, it's PM who does it.
Best wishes to you and feel better, sweeite!
I dont think you have to worry about your GP stopping your meds, or going on a holiday.............. I think this was chit chat from an unqualified person that had no right to comment at all.
Round1
Moldova
06-28-2008, 05:00 PM
I would agree. Additionally, you have to remember that she's a PA....A small step up from a nurse. Until a Doc starts talking this (or related) language, I wouldn't get too concerned.
I don't think she was necessarily referring to a "drug holiday", but rather, lets just see if taking something less works....Almost like a experiment. Again, this shows that she knows NOTHING about narcotics and pain control. You just don't stop taking something and "Lets just see if something else works."
Ex,
I can't agree more; I wonder who created this "drug Holidays" thing but definitely not the one who knows what CP is...
What kind idea this is and why? I would be the first one who would say no more meds if I could leave in this pain 24/7 without feeling it...
Take care; please feel better!
Very true. This is why "drug holidays" with PM patients don't work. Drug holidays work with allergy meds, and etc.
I would just very pleasantly listen and politely refuse like Steve suggested....And then go about my way. Again, until a Doc starts talking like this, I wouldn't be very concerned.
Good luck and I think things will be fine!
Ex
I don't think she was necessarily referring to a "drug holiday", but rather, lets just see if taking something less works....Almost like a experiment. Again, this shows that she knows NOTHING about narcotics and pain control. You just don't stop taking something and "Lets just see if something else works."
Ex,
I can't agree more; I wonder who created this "drug Holidays" thing but definitely not the one who knows what CP is...
What kind idea this is and why? I would be the first one who would say no more meds if I could leave in this pain 24/7 without feeling it...
Take care; please feel better!
Very true. This is why "drug holidays" with PM patients don't work. Drug holidays work with allergy meds, and etc.
I would just very pleasantly listen and politely refuse like Steve suggested....And then go about my way. Again, until a Doc starts talking like this, I wouldn't be very concerned.
Good luck and I think things will be fine!
Ex
Moldova
06-28-2008, 05:03 PM
And dont forget, sometimes PA stands for Passive-Agressive.
What Ex says is even more important if you have an assistant who feels the need to constantly 'prove' themselves. I am not saying all or even most nurses and PA's have that attitude, but some of them do. and thats when we should focus on what the doctor says only.
Hope everyone is having a good weekend so far.
Hugs, Fabby :)
Fabby,
you are so funny! Passive-agressive, ha? LOL
I did meet some of them too who feel like they can decide for you what to do and how to leave and that they are more important than a DR...
The best when they ask you what meds are you on and than shaking their heads: "did you ever consider to stop them?". I usually get shocked because I can't say what I want to say (sorry) but just be nice about it is not worth it.:mad: LOL!
What Ex says is even more important if you have an assistant who feels the need to constantly 'prove' themselves. I am not saying all or even most nurses and PA's have that attitude, but some of them do. and thats when we should focus on what the doctor says only.
Hope everyone is having a good weekend so far.
Hugs, Fabby :)
Fabby,
you are so funny! Passive-agressive, ha? LOL
I did meet some of them too who feel like they can decide for you what to do and how to leave and that they are more important than a DR...
The best when they ask you what meds are you on and than shaking their heads: "did you ever consider to stop them?". I usually get shocked because I can't say what I want to say (sorry) but just be nice about it is not worth it.:mad: LOL!
ghouse
06-28-2008, 05:50 PM
If the meds are working for you, and allow you to function to your satisfaction on a day-to-day basis, then regardless of what your surgeon's PA says, you should continue with your current regime.
As others have said, I would decline, politely, mind. As others have also said, as long as no doctors suggest this to you, then you have nothing to worry about.
Best Wishes
Chris
As others have said, I would decline, politely, mind. As others have also said, as long as no doctors suggest this to you, then you have nothing to worry about.
Best Wishes
Chris
brianpain33
06-29-2008, 12:32 AM
Moldova,
Many, many people including those in the health profession are not extremely knowledgeable when it comes to long term narcotic pain med use and addiction. Many nurses and doctors tell people on long-term pain meds that their BODY is PHYSICALLY ADDICTED, when the real term should be PHYSICALLY DEPENDENT. These both mean that if you were to just stop taking them you would go into PHYSICAL WITHDRAWAL. Please don't worry that you are an addict because you are not abusing them and are taking them for physical pain.
Now let's talk about her other suggestion of taking a drug holiday. I think what she was trying to convey was that you may have developed something called "hyperanalgesia" which means that your brain develops a heightened response to pain. This is still a theory and it may only be true in a limited number of pain patients on narcotic medications. The theory says that if you are on narcotic medications for a long time that your brain needs more of the narcotic in order to get the same effect. It is kind of like an abnormal tolerance. I don't know if I believe this one or not. Of course the only way to prove if this is true is to completely go off all narcotic medications.
So many health professionals think that it's easy to go completely off of our pain medications. They have probably never experienced severe chronic pain or severe withdrawal either. You should not get all worked up by what this PA told you. You can just tell her that you are working with your PM doc on your medications and leave it at that.
I hope that this helps.
brian
p.s. The only person that I know of that has experienced this hyperanalgesia is Chrissy so you might want to do a post about it and get her take on it.
Many, many people including those in the health profession are not extremely knowledgeable when it comes to long term narcotic pain med use and addiction. Many nurses and doctors tell people on long-term pain meds that their BODY is PHYSICALLY ADDICTED, when the real term should be PHYSICALLY DEPENDENT. These both mean that if you were to just stop taking them you would go into PHYSICAL WITHDRAWAL. Please don't worry that you are an addict because you are not abusing them and are taking them for physical pain.
Now let's talk about her other suggestion of taking a drug holiday. I think what she was trying to convey was that you may have developed something called "hyperanalgesia" which means that your brain develops a heightened response to pain. This is still a theory and it may only be true in a limited number of pain patients on narcotic medications. The theory says that if you are on narcotic medications for a long time that your brain needs more of the narcotic in order to get the same effect. It is kind of like an abnormal tolerance. I don't know if I believe this one or not. Of course the only way to prove if this is true is to completely go off all narcotic medications.
So many health professionals think that it's easy to go completely off of our pain medications. They have probably never experienced severe chronic pain or severe withdrawal either. You should not get all worked up by what this PA told you. You can just tell her that you are working with your PM doc on your medications and leave it at that.
I hope that this helps.
brian
p.s. The only person that I know of that has experienced this hyperanalgesia is Chrissy so you might want to do a post about it and get her take on it.
sandim
06-29-2008, 04:03 AM
:)Sandi,
how are you doing with your Arachnoidities? How is your pain? What meds are you on (hope you don't mind me asking) and do they help with at least some pain?
I did not hear from you for a long time, did not know what to think. Thank you for responding to my post.
I wish you all the best and maybe better day tomorrow...:)
Hi Moldova :)
I read most every day, but depending on how I am feeling, sometimes I post and others I just don't have the ability to sit for long enough to do it...
I go up and down alot. I just recently got a motorized wheelchair , manual custom wheelchair and a scooter to get around easier. It was a blow to my ego, having to rely on wheelchairs to get around, but I am finding that it really does make it so much easier to get around and get out in life again.
I had a consult with a rehab consultant who special ordered and customized all of those for me, and got them approved through our insurance. Thankfully, they paid 100% of the costs. :)
I am still going downhill alot, having more and more trouble standing or walking. The muscles spasms that hit just about take my legs out from under me too often, and they have scared the doctor and me, thinking that I am going to fall down, so I am glad to have the chairs to help with that.
They changed my pain meds again, so now I am on the fentanyl 100 mcg. /hr patch. It seems to help with the pain more than anything else so far. I am also thinking about getting a baclofen pump placed, so that we might be able to better control the muscle spasms. I am taking cymbalta 30 mg, twice a day to help the Lyrica work better and of course , the Lyrica at 200 mg, three times a day.
The revision of the fusion worked in that adding the bmp finally allowed fusion, and replacing two of the bent, broken screws also helped in finally stabilizing my lower back, so there is no more popping and clicking like there had been. They also did hemilaminectomies and forminectomies at L3-4, L4-5 again and tried at L5-S1, but the nerve damage was too severe for him to go around those nerves. He said that those nerves are like old lace, so fragile that if he touched them, he was afraid they would just disintegrate.....scary.:eek:
As far as the pain levels go, they stay pretty consistent , around an 7-8 most days, and if I try to do too much, I can easily send them over the top without too much effort. My neuro was concerned that I may have MS on top of the CES problems and the ones with my back, and my brain MRI turned up two lesions in the deep white matter, but what they are, and what they mean is beyond me.
I could do without the burning, stinging, crawling thing feeling though. I am told that will get worse as the Arachnoiditis progresses, but I do keep hoping that it won't be an agressive deterioration, although so far, it seems to be.
How are you dealing with it? It is frustrating , to have our lives changed so drastically in such a short time, but I am going to keep doing the best that I can, that's all any of us can do.
Thank you for the good thought Moldova, I send them to you too!
Sandi
how are you doing with your Arachnoidities? How is your pain? What meds are you on (hope you don't mind me asking) and do they help with at least some pain?
I did not hear from you for a long time, did not know what to think. Thank you for responding to my post.
I wish you all the best and maybe better day tomorrow...:)
Hi Moldova :)
I read most every day, but depending on how I am feeling, sometimes I post and others I just don't have the ability to sit for long enough to do it...
I go up and down alot. I just recently got a motorized wheelchair , manual custom wheelchair and a scooter to get around easier. It was a blow to my ego, having to rely on wheelchairs to get around, but I am finding that it really does make it so much easier to get around and get out in life again.
I had a consult with a rehab consultant who special ordered and customized all of those for me, and got them approved through our insurance. Thankfully, they paid 100% of the costs. :)
I am still going downhill alot, having more and more trouble standing or walking. The muscles spasms that hit just about take my legs out from under me too often, and they have scared the doctor and me, thinking that I am going to fall down, so I am glad to have the chairs to help with that.
They changed my pain meds again, so now I am on the fentanyl 100 mcg. /hr patch. It seems to help with the pain more than anything else so far. I am also thinking about getting a baclofen pump placed, so that we might be able to better control the muscle spasms. I am taking cymbalta 30 mg, twice a day to help the Lyrica work better and of course , the Lyrica at 200 mg, three times a day.
The revision of the fusion worked in that adding the bmp finally allowed fusion, and replacing two of the bent, broken screws also helped in finally stabilizing my lower back, so there is no more popping and clicking like there had been. They also did hemilaminectomies and forminectomies at L3-4, L4-5 again and tried at L5-S1, but the nerve damage was too severe for him to go around those nerves. He said that those nerves are like old lace, so fragile that if he touched them, he was afraid they would just disintegrate.....scary.:eek:
As far as the pain levels go, they stay pretty consistent , around an 7-8 most days, and if I try to do too much, I can easily send them over the top without too much effort. My neuro was concerned that I may have MS on top of the CES problems and the ones with my back, and my brain MRI turned up two lesions in the deep white matter, but what they are, and what they mean is beyond me.
I could do without the burning, stinging, crawling thing feeling though. I am told that will get worse as the Arachnoiditis progresses, but I do keep hoping that it won't be an agressive deterioration, although so far, it seems to be.
How are you dealing with it? It is frustrating , to have our lives changed so drastically in such a short time, but I am going to keep doing the best that I can, that's all any of us can do.
Thank you for the good thought Moldova, I send them to you too!
Sandi
Executor
06-29-2008, 09:33 AM
Moldova,
Many, many people including those in the health profession are not extremely knowledgeable when it comes to long term narcotic pain med use and addiction. Many nurses and doctors tell people on long-term pain meds that their BODY is PHYSICALLY ADDICTED, when the real term should be PHYSICALLY DEPENDENT. These both mean that if you were to just stop taking them you would go into PHYSICAL WITHDRAWAL. Please don't worry that you are an addict because you are not abusing them and are taking them for physical pain.
Now let's talk about her other suggestion of taking a drug holiday. I think what she was trying to convey was that you may have developed something called "hyperanalgesia" which means that your brain develops a heightened response to pain. This is still a theory and it may only be true in a limited number of pain patients on narcotic medications. The theory says that if you are on narcotic medications for a long time that your brain needs more of the narcotic in order to get the same effect. It is kind of like an abnormal tolerance. I don't know if I believe this one or not. Of course the only way to prove if this is true is to completely go off all narcotic medications.
So many health professionals think that it's easy to go completely off of our pain medications. They have probably never experienced severe chronic pain or severe withdrawal either. You should not get all worked up by what this PA told you. You can just tell her that you are working with your PM doc on your medications and leave it at that.
If it matters, I agree with Everything Brian says in his post.........
Ex
Many, many people including those in the health profession are not extremely knowledgeable when it comes to long term narcotic pain med use and addiction. Many nurses and doctors tell people on long-term pain meds that their BODY is PHYSICALLY ADDICTED, when the real term should be PHYSICALLY DEPENDENT. These both mean that if you were to just stop taking them you would go into PHYSICAL WITHDRAWAL. Please don't worry that you are an addict because you are not abusing them and are taking them for physical pain.
Now let's talk about her other suggestion of taking a drug holiday. I think what she was trying to convey was that you may have developed something called "hyperanalgesia" which means that your brain develops a heightened response to pain. This is still a theory and it may only be true in a limited number of pain patients on narcotic medications. The theory says that if you are on narcotic medications for a long time that your brain needs more of the narcotic in order to get the same effect. It is kind of like an abnormal tolerance. I don't know if I believe this one or not. Of course the only way to prove if this is true is to completely go off all narcotic medications.
So many health professionals think that it's easy to go completely off of our pain medications. They have probably never experienced severe chronic pain or severe withdrawal either. You should not get all worked up by what this PA told you. You can just tell her that you are working with your PM doc on your medications and leave it at that.
If it matters, I agree with Everything Brian says in his post.........
Ex
stymie82
06-29-2008, 05:10 PM
Styme, I am so thrilled that I was able to help you - this means so much to both of us.
Thank you for your advice, I know you all 100% right. I just very confused why in a world she would even start this conversation. She is worry about my liver? Who cares about healthy liver if leaving in such severe pain is no worth leaving anyway? I got into my car after this app crying and being scared- what if they do it to me? That is why was important to me to hear from my "board friends" what do they think. I did not know that I can insist on staying on them, like Steve said, but I learned here that I can...
How are you doing pain wise? What do you feel helps you with pain? And what kind meds are you on? I hope you don't mind me asking you
All the best to you...
Moldova, I take 2800mg/Neurontin, Lortab 10/500mg 7/day, Tramadol 50mg 3/day, Celexa 40mg/day, baclofen 30mg/day, along with Androgel for testosterone replacement. I am also on a trial of trental with vitamin E that has been shown in some preliminary studies to help dissolve scar tissue. After two months, I really don't notice much difference from the trental. I will try it maybe two more months, then quit if no improvement.
My pain is awful without the meds, bearable with them. I can only stand or walk for 5-6 minutes without being forced to sit or lay down from pain. I can moderately ride a stationary or regular bike, and can swim moderately. It's such a weird disease-who ever knew body parts could be both numb and be painful at the same time? My PCP is my prescribing doc and is a wonderful person who cares about my function and comfort. I have plenty of room to go up on narco meds, and will probably have to go onto a LA in the future. I'm comfortable right now as things are and he monitors my blood for liver, kidney function and the like. I am blessed so far with a cast iron stomach and have no problem taking a bunch of pills.
Happy to share with you, and anyone else who suffers from our disease. I hope no one ever suggests a PK Holiday for me, because then I will be under the covers moaning in pain with no quality of life. Again, I am so thankful for your postings back in 10/07, as it lead directly to me being diagnosed by a second-opinion neurosurgeon. I was in the "Mystery Diagnosis" category for over 2 years before that. Always a blessing to come to this board.:cool:
Thank you for your advice, I know you all 100% right. I just very confused why in a world she would even start this conversation. She is worry about my liver? Who cares about healthy liver if leaving in such severe pain is no worth leaving anyway? I got into my car after this app crying and being scared- what if they do it to me? That is why was important to me to hear from my "board friends" what do they think. I did not know that I can insist on staying on them, like Steve said, but I learned here that I can...
How are you doing pain wise? What do you feel helps you with pain? And what kind meds are you on? I hope you don't mind me asking you
All the best to you...
Moldova, I take 2800mg/Neurontin, Lortab 10/500mg 7/day, Tramadol 50mg 3/day, Celexa 40mg/day, baclofen 30mg/day, along with Androgel for testosterone replacement. I am also on a trial of trental with vitamin E that has been shown in some preliminary studies to help dissolve scar tissue. After two months, I really don't notice much difference from the trental. I will try it maybe two more months, then quit if no improvement.
My pain is awful without the meds, bearable with them. I can only stand or walk for 5-6 minutes without being forced to sit or lay down from pain. I can moderately ride a stationary or regular bike, and can swim moderately. It's such a weird disease-who ever knew body parts could be both numb and be painful at the same time? My PCP is my prescribing doc and is a wonderful person who cares about my function and comfort. I have plenty of room to go up on narco meds, and will probably have to go onto a LA in the future. I'm comfortable right now as things are and he monitors my blood for liver, kidney function and the like. I am blessed so far with a cast iron stomach and have no problem taking a bunch of pills.
Happy to share with you, and anyone else who suffers from our disease. I hope no one ever suggests a PK Holiday for me, because then I will be under the covers moaning in pain with no quality of life. Again, I am so thankful for your postings back in 10/07, as it lead directly to me being diagnosed by a second-opinion neurosurgeon. I was in the "Mystery Diagnosis" category for over 2 years before that. Always a blessing to come to this board.:cool:
forginon
06-29-2008, 08:18 PM
Moldova,
I didn't even realize that this "office" didn't prescribe your pain meds. Wasn't thinking I guess. That's why I asked in my first reply if they were giving you a choice or telling you that it was going to happen.
Back to my first point - I do believe you always have a choice, even with the prescribing doctor. Your pain case is about as "cut and dried" as they come. You are and will remain a CP patient for life as I understand from what you have posted. In this case, a drug holiday is NOT THERAPEUTIC. All it would do is cause added suffering. It would harm you. IMHO your prescribing doc would never even bring this up. If he ever did, I would calmly assure him that you don't intend to try that technique.
Back to the point that this doc and his PA don't even prescribe pain meds for you - this conversation should never have happened. Only your prescribing doc should have conversations with you regarding changes to your medication therapy. And to insinuate anything about your life-long med expenses is just plain sticking their nose where it doesn't belong. If this PA does this again I would complain to the doc supervising her.
steve
I didn't even realize that this "office" didn't prescribe your pain meds. Wasn't thinking I guess. That's why I asked in my first reply if they were giving you a choice or telling you that it was going to happen.
Back to my first point - I do believe you always have a choice, even with the prescribing doctor. Your pain case is about as "cut and dried" as they come. You are and will remain a CP patient for life as I understand from what you have posted. In this case, a drug holiday is NOT THERAPEUTIC. All it would do is cause added suffering. It would harm you. IMHO your prescribing doc would never even bring this up. If he ever did, I would calmly assure him that you don't intend to try that technique.
Back to the point that this doc and his PA don't even prescribe pain meds for you - this conversation should never have happened. Only your prescribing doc should have conversations with you regarding changes to your medication therapy. And to insinuate anything about your life-long med expenses is just plain sticking their nose where it doesn't belong. If this PA does this again I would complain to the doc supervising her.
steve
Moldova
06-30-2008, 11:59 AM
Thank you, dear people, for your kindness and advices - I feel so much better. I guess I paniced that this may happen to me in my situation. On one hand they tell me that my post-surgical condition of Arachnoidities will get worse and worse and that my above leves now may need to be fused in a near future and here she discusses with me a possibility of "trying to leave without PK". Young and clueless!:)
Sandim,
I read your post in tears and it's not that I feel sorry for you (I know some people don't like it), but because I feel your pain since I know what means to leave with spinal and ARC problems.
I am glad you got yourself so needed "transportation" and it's for free - excellent. I understand about ego; I never thougth I would ever walk outside with a cane or walker at my age or that I would use a scooter at Costco or any big store - but who cares now? I want quality of life, I want to go when I can, do when I can - whatever it takes...
I read a lots of material on ARC - so far they really don't have anything new to help us or at least to stop the progression of this terrible condition. But thank God for PK, at least somehow we can manage our life and still enjoy, right? Of course we can, at least on a "good" days :)
Styme,
I see you are talking a lots of meds to keep your pain under control. I understand where you are coming from when you talk about research, but vitamin E can be very harmfull to your liver in high doses (you can't exceed 400 Units) so make sure you ask about it. I can share this with you because I know a lot about homeopatic/alternative meds (herbs, vit, etc.) - just always loved to learn about it.
I wish to hear more from both of you and to see how are you doing...
From the bottom of my heart I want to wish you better days ahead...
I know what you are going through day by day... I had a lots of pain in my life, but his type pain I would rather never experinse.
I do PT; they can't do much to me but back, arms and legs massage (what can be better?:) ) stretches, Tense unit, Ultrasound... I try to walk even on very bad days as much as I can. I do st. bike too, sometimes elliptical at PT place. I try to stay as active as I can (for someone it may look as "retarded active" :), but at this point for me it is what it is)
I want to tell you about Tense Unit - I love it! I absolutely love it and so glad my PM suggested one for me. So if you consider one - don't hesitate!
All the best,
Sandim,
I read your post in tears and it's not that I feel sorry for you (I know some people don't like it), but because I feel your pain since I know what means to leave with spinal and ARC problems.
I am glad you got yourself so needed "transportation" and it's for free - excellent. I understand about ego; I never thougth I would ever walk outside with a cane or walker at my age or that I would use a scooter at Costco or any big store - but who cares now? I want quality of life, I want to go when I can, do when I can - whatever it takes...
I read a lots of material on ARC - so far they really don't have anything new to help us or at least to stop the progression of this terrible condition. But thank God for PK, at least somehow we can manage our life and still enjoy, right? Of course we can, at least on a "good" days :)
Styme,
I see you are talking a lots of meds to keep your pain under control. I understand where you are coming from when you talk about research, but vitamin E can be very harmfull to your liver in high doses (you can't exceed 400 Units) so make sure you ask about it. I can share this with you because I know a lot about homeopatic/alternative meds (herbs, vit, etc.) - just always loved to learn about it.
I wish to hear more from both of you and to see how are you doing...
From the bottom of my heart I want to wish you better days ahead...
I know what you are going through day by day... I had a lots of pain in my life, but his type pain I would rather never experinse.
I do PT; they can't do much to me but back, arms and legs massage (what can be better?:) ) stretches, Tense unit, Ultrasound... I try to walk even on very bad days as much as I can. I do st. bike too, sometimes elliptical at PT place. I try to stay as active as I can (for someone it may look as "retarded active" :), but at this point for me it is what it is)
I want to tell you about Tense Unit - I love it! I absolutely love it and so glad my PM suggested one for me. So if you consider one - don't hesitate!
All the best,