Shout out to Cinnamon Smile

Margeaux

Hi PinK:  Some years back you replied to my question on what to do about excruciating pain from lymph node removal.  "Post Breast Therapy Pain Syndrome" what a nice name, no solution.  Aftermonths and months of bitterly complaining and a lot of suffering, the interist finally put me on Gabapentin, then switched me to Lyrica, which I can't afford inspite of insurance, and back to Gabapentin.  I saw a Pain Management guy, couldn't help it, but I just didn't like him very much.  My Medicare HMO had only this one on their approved list.  He suggested nerve block into the costalbrachial....somethingsomething, it sounded frightening and I chickened out.  The interenist, whom I trust, wasn't all that gung-ho about it either.  On top of it all, neuropathy I got in both feet and hands from Taxol is now getting so bad, it's all the way up the left leg to the knee, can hardly walk - oh, I am alive allright, just sometimes wonder if I want to be!  I know you had a number of nerve blocks done and had to have them repeatedly, if I rememer right (I always folllow your blogs).  Would you still have them and did they last for any length of time?  Were they painful?  I undeerstand they can't be done in the doctor's office, but have to be performed in day surgery.  Your comments would be so very much appreciated.

What I think about cancer and where I wish this disease to is not printable here....

Margeaux

cinnamonsmile

Hello. I am so sorry to hear

Hello. I am so sorry to hear that you can't find a decent pain dr. 

I was getting stillete ganglion nerve blocks to the neck back in 2011. They only lasted 1-3 weeks. They were incredibly painful and dangerous for such short relief. They switched me over to Lidocain IV infusions. They hook me up to heart monitors and watch me closely as they put the IV solution of Lidocaine straight to the vein. I think in the beginning I was getting them every 6-8 weeks. Now I can go for a couple months between them. The pain clinic was part of the hospital, so I had and still have all my treatments in the hospitals procedures center. I don't get charged for the full hopital bill, since it is not considered "sugery." Each Lidocaine total bill is a little over $400. I just have the regular medicare (no HMO involved) and it pays 80%.

I am pretty loopy and tired the day of the Lidocaine infusion and about 2 more days, I am tired and run down in recovery.

I think I get the Lidocaine infusions about  every 2-3 months. It doesn't take it all away, but takes away the severe pain like I am having now.

I am still on 2100 mg gabapentin per day; 25 mg of Amitriptyline (an antidepressant that helps some with pain issues and helps promote sleep, I wake up alot) at bedtime; a Skelaxon (sp?) 400 mg at bedtime; 50 mg of tramadol for break through pain; if the tramadol isnt enough i take a low dose vicodin.

In the end of June, I am having a spinal implant for masking pain put in. They put a few wires up my spine, then a little controller is taped to my backside, and I have a remote control. The purpose is that my nerve damage make my nerves intrepet pain when there really isnt any. The implant sends tingels through the spine for the corresponding wacky nerves. The tingles stop the nerves from getting pain signals to the spine, so the brain feels tingles instead of pain. 

Since I am getting that done at the end of June, I am putting off a much needed Lidocaine infusion because then I will be able to have a better grasp if it actually works for me.

Lately I have been in so much pain, i ahve to wear a sling again, have problems dressing and need assitance. Cripes, one day it was so bad it hurt to wipe my backside when i went to the bathroom. Any movement of the arms can make it worse. I can't carry a laundry basket to the clothes line, so I bought a light weight cart. Brian puts it on the wagon for me, and I use the better arm to pull it. Lately, without the Lidocaine, I have needed help hanging the clothes.

The pain psychologist I saw was wonderul. He really taught me some good tricks for the brain, how to talk to my pain (let it know that i feel it, but that there is really no damage done that I should be hurting). Helped me learn to pace my housework/gardening, life in general. He also told me that people with chronic pain follow a pattern:

We feel good, so we overdo it. Then we slack off or do nothing later, and for what ever many days after, then we overdo it again. I can't and don't always follow it to the letter, but am much much better. I know what activities make it worse. If I am going to clean the bathroom that day, I know not to sweep and mop the floor the same day, etc. I take breaks after activities as well. If I do dishes, I take a break. Then I go to my next activity.

Like I said the nerve blocks to the neck were extremely painful and dangerous. I had to lay very still so the needle went in the right spot. There was an artery very close and they didn't want it to go in that. Then for some reason, which I can't remember anymore, they had to be careful so it didin't hit  a vessel that would carry it right to the brain first.I have neuropathy in my feet from diabetes and I recently talked with my regular doctor about it and she said that there is nothing to do for that becuase the Gabapentin I am on.

How much gabapentin are you on? And I am saddened that you can't get good care. The pain doctors I had in the beginning were actually anesthesiologists from a clinic. I think in 2011 they pulled out. I now have one pain dr. He has terrible bedside manner, and I don't particularly like him, but I stick with him because I don't know the other one. I figure, it is not like in the beginning when we (me and the two pain drs I saw back then...I saw them both cuz they took vacations that summer) were first trying to figure things out.

I also have LE now (well, diagnosed anyway) and I can tell when it acts up because it is a differnt pain. The pain dr. says my LE pain is worse than it would normally be because the  damaged nerves make the pain seem worse. 

I don't post here about the pain much anymore. I do post occasionally on breastcancer.org.

I don't know if you work or not, but the gabapentin can have some side effects, mental confusion, tiredness, etc. 

Getting treatment for pain should not be so hard for us. I am so sorry you are having a hard time getting adequate care. It is so frustrating to be stuck in limbo with no doctor taking the reigns and guiding us. I know once I found the good pain docs I originally saw and the pain pyschologist I really found that the stress level went down. It is like what it feels like when we are first diagnosed with cancer until the doc's make the plan of treatment. Sounds like you are stuck in that limbo land. You  have pain and no one is coming up with an adequate treatment plan for you.

I know this was long, but I wanted to share all I know to help you out.

Margeaux

cinnamonsmile said:

Hello. I am so sorry to hear

Hello. I am so sorry to hear that you can't find a decent pain dr. 

I was getting stillete ganglion nerve blocks to the neck back in 2011. They only lasted 1-3 weeks. They were incredibly painful and dangerous for such short relief. They switched me over to Lidocain IV infusions. They hook me up to heart monitors and watch me closely as they put the IV solution of Lidocaine straight to the vein. I think in the beginning I was getting them every 6-8 weeks. Now I can go for a couple months between them. The pain clinic was part of the hospital, so I had and still have all my treatments in the hospitals procedures center. I don't get charged for the full hopital bill, since it is not considered "sugery." Each Lidocaine total bill is a little over $400. I just have the regular medicare (no HMO involved) and it pays 80%.

I am pretty loopy and tired the day of the Lidocaine infusion and about 2 more days, I am tired and run down in recovery.

I think I get the Lidocaine infusions about  every 2-3 months. It doesn't take it all away, but takes away the severe pain like I am having now.

I am still on 2100 mg gabapentin per day; 25 mg of Amitriptyline (an antidepressant that helps some with pain issues and helps promote sleep, I wake up alot) at bedtime; a Skelaxon (sp?) 400 mg at bedtime; 50 mg of tramadol for break through pain; if the tramadol isnt enough i take a low dose vicodin.

In the end of June, I am having a spinal implant for masking pain put in. They put a few wires up my spine, then a little controller is taped to my backside, and I have a remote control. The purpose is that my nerve damage make my nerves intrepet pain when there really isnt any. The implant sends tingels through the spine for the corresponding wacky nerves. The tingles stop the nerves from getting pain signals to the spine, so the brain feels tingles instead of pain. 

Since I am getting that done at the end of June, I am putting off a much needed Lidocaine infusion because then I will be able to have a better grasp if it actually works for me.

Lately I have been in so much pain, i ahve to wear a sling again, have problems dressing and need assitance. Cripes, one day it was so bad it hurt to wipe my backside when i went to the bathroom. Any movement of the arms can make it worse. I can't carry a laundry basket to the clothes line, so I bought a light weight cart. Brian puts it on the wagon for me, and I use the better arm to pull it. Lately, without the Lidocaine, I have needed help hanging the clothes.

The pain psychologist I saw was wonderul. He really taught me some good tricks for the brain, how to talk to my pain (let it know that i feel it, but that there is really no damage done that I should be hurting). Helped me learn to pace my housework/gardening, life in general. He also told me that people with chronic pain follow a pattern:

We feel good, so we overdo it. Then we slack off or do nothing later, and for what ever many days after, then we overdo it again. I can't and don't always follow it to the letter, but am much much better. I know what activities make it worse. If I am going to clean the bathroom that day, I know not to sweep and mop the floor the same day, etc. I take breaks after activities as well. If I do dishes, I take a break. Then I go to my next activity.

Like I said the nerve blocks to the neck were extremely painful and dangerous. I had to lay very still so the needle went in the right spot. There was an artery very close and they didn't want it to go in that. Then for some reason, which I can't remember anymore, they had to be careful so it didin't hit  a vessel that would carry it right to the brain first.I have neuropathy in my feet from diabetes and I recently talked with my regular doctor about it and she said that there is nothing to do for that becuase the Gabapentin I am on.

How much gabapentin are you on? And I am saddened that you can't get good care. The pain doctors I had in the beginning were actually anesthesiologists from a clinic. I think in 2011 they pulled out. I now have one pain dr. He has terrible bedside manner, and I don't particularly like him, but I stick with him because I don't know the other one. I figure, it is not like in the beginning when we (me and the two pain drs I saw back then...I saw them both cuz they took vacations that summer) were first trying to figure things out.

I also have LE now (well, diagnosed anyway) and I can tell when it acts up because it is a differnt pain. The pain dr. says my LE pain is worse than it would normally be because the  damaged nerves make the pain seem worse. 

I don't post here about the pain much anymore. I do post occasionally on breastcancer.org.

I don't know if you work or not, but the gabapentin can have some side effects, mental confusion, tiredness, etc. 

Getting treatment for pain should not be so hard for us. I am so sorry you are having a hard time getting adequate care. It is so frustrating to be stuck in limbo with no doctor taking the reigns and guiding us. I know once I found the good pain docs I originally saw and the pain pyschologist I really found that the stress level went down. It is like what it feels like when we are first diagnosed with cancer until the doc's make the plan of treatment. Sounds like you are stuck in that limbo land. You  have pain and no one is coming up with an adequate treatment plan for you.

I know this was long, but I wanted to share all I know to help you out.

Pain

Thank you so much for your help, really appreciate it.  Also got your private message, I picked this guy out, because his reviews were better than the only other one I had available in my area.  I was not prepared for all the questions asked by the PA, it's so hard to describe pain exactly, hey, doc, it hurts like h..ll, it burns!  He pointed to the side of the neck, at shoulder level where the nerve block would be inserted, a combination Lidocaine and Steroids, if I remember right. The injured nerves are the intercostobrachials, which are nerves that exit the chest wall and provide sensation to the shoulder and upper arm. The most serious side of a nerve block is that I'd be unable to move the left arm at all, very rare, he assured me.  But since everything else had gone wrong - very rare too, I was too scared to take a chance.  On top of it all, I had a huge cyst under that arm about 10 months after surgery, it was drained and treated with antibiotics, but kept filling up, I had to have surgery, that was yet another trauma to the already traumatized nerves in the area.  Since I have normal arm movement my internist thought the insurance would not approve of nor would physical therapy help.  I do my own, water aerobics, chair yoga, etc.  Never had any problems with Medicare HMO approving any other treatment or medications, in fact overall I am quite pleased.  Like and trust the internist, think my oncologist is a little bearded genius, but I have a bone to pick with the surgeon.  Last year I sent an email to Breastcancer.org questoning why the incision under the arm is so deep, oncologist remarks on it every time he sees it, they replied that with older women lymph nodes may be more difficult to access and that injuries to the nerves do indeed occur, recommended Gabapentin.  I take much less than you do, just 900 mg, having problems dealing with side effects.  Doctor recommended at least 1200 mg.  What I will do is, on days when the pain is severe and I am safely at home, I'll add another 300 mg to a total of 1200.  The Neurologist I saw recommended Cymbalta to take at night, couldn't sleep a wink, in the morning I made it to the kitchen and passed out.  End of Cymbalta.  Amazingly I have no LE, than God for small favors! Last 2 seminars I attended at the Hospital with doctors present, they admitted they are far behind in dealing with side effects from cancer treatment "we were so focused on fighting cancer, we neglected what came after", including psychological effect.  For a while I had weekly massages, reasonably priced, but the therapist had the nerve to have a baby and I haven't found anyone else willing to touch me.  It is a strange feeling, as you know, to be the only one in your internist's and pain management guy's practice to have this diagnosis (PBTPS - Post Breat Therapy Pain Syndrome.  Mid June I'll attend the support group which will present a talk by a Chiropracter on how to deal with some of the side effects, I'm open to all suggestions.  Biofeedback has been recommended as well.  How does one make it clear to the people around us that we can't just simply put cancer behind us when we have pain as a daily reminder of it's existence?  Thank you again, my dear.

Margeaux

cinnamonsmile

Margeaux said:

Pain

Thank you so much for your help, really appreciate it.  Also got your private message, I picked this guy out, because his reviews were better than the only other one I had available in my area.  I was not prepared for all the questions asked by the PA, it's so hard to describe pain exactly, hey, doc, it hurts like h..ll, it burns!  He pointed to the side of the neck, at shoulder level where the nerve block would be inserted, a combination Lidocaine and Steroids, if I remember right. The injured nerves are the intercostobrachials, which are nerves that exit the chest wall and provide sensation to the shoulder and upper arm. The most serious side of a nerve block is that I'd be unable to move the left arm at all, very rare, he assured me.  But since everything else had gone wrong - very rare too, I was too scared to take a chance.  On top of it all, I had a huge cyst under that arm about 10 months after surgery, it was drained and treated with antibiotics, but kept filling up, I had to have surgery, that was yet another trauma to the already traumatized nerves in the area.  Since I have normal arm movement my internist thought the insurance would not approve of nor would physical therapy help.  I do my own, water aerobics, chair yoga, etc.  Never had any problems with Medicare HMO approving any other treatment or medications, in fact overall I am quite pleased.  Like and trust the internist, think my oncologist is a little bearded genius, but I have a bone to pick with the surgeon.  Last year I sent an email to Breastcancer.org questoning why the incision under the arm is so deep, oncologist remarks on it every time he sees it, they replied that with older women lymph nodes may be more difficult to access and that injuries to the nerves do indeed occur, recommended Gabapentin.  I take much less than you do, just 900 mg, having problems dealing with side effects.  Doctor recommended at least 1200 mg.  What I will do is, on days when the pain is severe and I am safely at home, I'll add another 300 mg to a total of 1200.  The Neurologist I saw recommended Cymbalta to take at night, couldn't sleep a wink, in the morning I made it to the kitchen and passed out.  End of Cymbalta.  Amazingly I have no LE, than God for small favors! Last 2 seminars I attended at the Hospital with doctors present, they admitted they are far behind in dealing with side effects from cancer treatment "we were so focused on fighting cancer, we neglected what came after", including psychological effect.  For a while I had weekly massages, reasonably priced, but the therapist had the nerve to have a baby and I haven't found anyone else willing to touch me.  It is a strange feeling, as you know, to be the only one in your internist's and pain management guy's practice to have this diagnosis (PBTPS - Post Breat Therapy Pain Syndrome.  Mid June I'll attend the support group which will present a talk by a Chiropracter on how to deal with some of the side effects, I'm open to all suggestions.  Biofeedback has been recommended as well.  How does one make it clear to the people around us that we can't just simply put cancer behind us when we have pain as a daily reminder of it's existence?  Thank you again, my dear.

Margeaux

Sounds just like the neck

Sounds just like the neck shots that I orignally got in summer 2011. They are extremely painful and you are not supposed to move while the dr. is placing the needle in your neck.

When I described my pain I wrote...feels numb in in spot x, zaps are felt here, burning sensation felt here (and what triggers the burning feeling...i remember an example I gave was when the car air conditioner blew on the upper back part of the arm and it felt and still feels like a blow torch), prickly tingles felt in spot x.activity x causes me to feel this sensation, etc.

Margeaux

cinnamonsmile said:

Sounds just like the neck

Sounds just like the neck shots that I orignally got in summer 2011. They are extremely painful and you are not supposed to move while the dr. is placing the needle in your neck.

When I described my pain I wrote...feels numb in in spot x, zaps are felt here, burning sensation felt here (and what triggers the burning feeling...i remember an example I gave was when the car air conditioner blew on the upper back part of the arm and it felt and still feels like a blow torch), prickly tingles felt in spot x.activity x causes me to feel this sensation, etc.

Private message

CS:  How do I send you a private message?

Thanks, Margeaux

cinnamonsmile

Margeaux said:

Private message

CS:  How do I send you a private message?

Thanks, Margeaux

How to Send a Private Message

There are are a few different ways. 

1. On the left hand side of this screen, there is a marroon box that has the headign CSN. Look down the list where it starts with Discussion Boards. CSN Email is the second from the bottom. Click that. That will take you to the CSN Email section. Your personal CSN email account will open up for you. Just select what you want to do from the menu.

2. On the home page screen there are 3 categories with different colors.In the blue section, CONNECT and Communicate, look down at the options in the column. You can choose new mail,CSN Email,New MailInboxSentAdd Contacts

3. You can click on the person CSN nickname and it will bring you to "their informational page." At the bottom in blue says "send this user a message." Click that and it will allow you to write them a private message.

VickiSam

cinnamonsmile said:

How to Send a Private Message

There are are a few different ways. 

1. On the left hand side of this screen, there is a marroon box that has the headign CSN. Look down the list where it starts with Discussion Boards. CSN Email is the second from the bottom. Click that. That will take you to the CSN Email section. Your personal CSN email account will open up for you. Just select what you want to do from the menu.

2. On the home page screen there are 3 categories with different colors.In the blue section, CONNECT and Communicate, look down at the options in the column. You can choose new mail,CSN Email,New MailInboxSentAdd Contacts

3. You can click on the person CSN nickname and it will bring you to "their informational page." At the bottom in blue says "send this user a message." Click that and it will allow you to write them a private message.

Cinnamon ...

How is your garden doing this year??  Wild Turkey's still coming by for a visit???

 

Vicki Sam