Hi people.
First I would like to extend my very best wishes to anyone suffering from multiple myeloma or any other chronic condition..
I have been looking for years to get a definite 100% sure answer to a simple question ...
Is there anyplace whatsoever in the US or any other country in the world where a person can go and get general anesthetic before a bone marrow biopsy? I am willing to travel and pay for it out of pocket.
Evey time I look, the best I can find is a few messages from somone or other who say that they or someone they knew was able to get propofol or another similar anesthetic. None of them ever say where?
Does anybody have any specific knlowlege, like for example, where did you get a biopsy when anesthetic was made available? At what doctor or clinic? In what state? In what country? Approx. what was the total cost? How did you arrange for this and make it happen?
BTW - I do not mean "Twilight" medicine or "Conscious Sedation" or a mild sedative like Ativan or any of that nonesense the docs all seem to recomend. I have tried all of those and none resulted in any perceivable difference in the level of pain.
I know many will say "just suck it up" or "its not that bad". I can assure you they are not feeling the same level of pain that I am. I have also had 15 of these biopsy's in the past ten years so I have done my share of "sucking it up"
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Forums
Re: Where to get general anesthetic for bone marrow biopsy?
I've only had two of these things.
The first one was a shock, but I figured, OK, it's not THAT bad.
The second one? That bad. I've given birth five times without anesthesia. I wasn't happy then, either, but there was a good reason for not having anesthesia then. Better for the baby, better for Mom.
The bone marrow biopsy, to me, is worse. Yeah, it's shorter than labor, but when you add the waiting, the stress, and the pain on top of it? It's worse. Not to mention that I don't react well to being told I'm a wuss because I don't want to 'be there' for the procedure.
I'm no coward. None of us who are dealing with multiple myeloma are. We deal with medications that have very uncomfortable side effects. We deal with a disease that can be extremely painful.
Why are we expected to put up with pain when we don't HAVE to? What is this, some rite of passage to prove that we are 'worthy' or 'adults now?'
I haven't tried the 'twilight sleep.' Perhaps that will be enough for me, but I'm having problems getting even that. I'm also getting the 'grow up' look when I ask for it.
... And I feel about that like I feel about labor; before a man has the right to complain about a woman's reaction to it, he should experience it. Something tells me that doctors and technicians who have had to put up with having a bone marrow biopsy themselves (preferably without aid) might not be so dismissive of those who ask for anesthesia / sedation.
The first one was a shock, but I figured, OK, it's not THAT bad.
The second one? That bad. I've given birth five times without anesthesia. I wasn't happy then, either, but there was a good reason for not having anesthesia then. Better for the baby, better for Mom.
The bone marrow biopsy, to me, is worse. Yeah, it's shorter than labor, but when you add the waiting, the stress, and the pain on top of it? It's worse. Not to mention that I don't react well to being told I'm a wuss because I don't want to 'be there' for the procedure.
I'm no coward. None of us who are dealing with multiple myeloma are. We deal with medications that have very uncomfortable side effects. We deal with a disease that can be extremely painful.
Why are we expected to put up with pain when we don't HAVE to? What is this, some rite of passage to prove that we are 'worthy' or 'adults now?'
I haven't tried the 'twilight sleep.' Perhaps that will be enough for me, but I'm having problems getting even that. I'm also getting the 'grow up' look when I ask for it.
... And I feel about that like I feel about labor; before a man has the right to complain about a woman's reaction to it, he should experience it. Something tells me that doctors and technicians who have had to put up with having a bone marrow biopsy themselves (preferably without aid) might not be so dismissive of those who ask for anesthesia / sedation.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Where to get general anesthetic for bone marrow biopsy?
Hi Carlrob3,
I'm like you and dianaiad concerning bone marrow aspirations. I once got so worked up and felt so much pain that I experienced an adrenelin rush followed by complete respiratory crash. My blood pressure dropped to unreadable, I couldn't stand or even sit up for about an hour and thet were really worried. This is when they agreed to give me stronger anesthetics.
I go to the Myeloma Institute for Research and Treatment in Little Rock for my more intense follow-up, and they give me amnesia type sedation. We joke that its the same stuff that Michael Jackson took, but of course at a different dose
This works for me because I don't remember anything about the procedure. I know I'm in the operating room with an IV in my arm and can watch them inject the drug, then the next thing I know I'm in the recovery room about 1 hour later. This is probably better than full anesthetic, because I can walk out the door shortly after I wake up, which isn't always the case with full anesthetic. I'm also much less stressed leading up to the procedure.
I had a similar process with one bone marrow aspiration at The Mayo Clinic in Scottsdale, AZ and then I didn't remember anything either.
You just need to be insistent with your doctor. It can be done and is done everyday for outpatient colonoscopies and same day surgeries. Bone marrow aspirations shouldn't be any different, and we deserve better IMHO. I hope this is helpful.
Dan
I'm like you and dianaiad concerning bone marrow aspirations. I once got so worked up and felt so much pain that I experienced an adrenelin rush followed by complete respiratory crash. My blood pressure dropped to unreadable, I couldn't stand or even sit up for about an hour and thet were really worried. This is when they agreed to give me stronger anesthetics.
I go to the Myeloma Institute for Research and Treatment in Little Rock for my more intense follow-up, and they give me amnesia type sedation. We joke that its the same stuff that Michael Jackson took, but of course at a different dose
This works for me because I don't remember anything about the procedure. I know I'm in the operating room with an IV in my arm and can watch them inject the drug, then the next thing I know I'm in the recovery room about 1 hour later. This is probably better than full anesthetic, because I can walk out the door shortly after I wake up, which isn't always the case with full anesthetic. I'm also much less stressed leading up to the procedure.
I had a similar process with one bone marrow aspiration at The Mayo Clinic in Scottsdale, AZ and then I didn't remember anything either.
You just need to be insistent with your doctor. It can be done and is done everyday for outpatient colonoscopies and same day surgeries. Bone marrow aspirations shouldn't be any different, and we deserve better IMHO. I hope this is helpful.
Dan
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Dan in Phoenix
Re: Where to get general anesthetic for bone marrow biopsy?
I think the problem as far as doctors are concerned is that general anesthesia isn't risk free. I would think you would have a better chance getting something like Dan had. It's the same that's given for a colonoscopy.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Where to get general anesthetic for bone marrow biopsy?
Dan
Thank you for your information and for your kind words. Do you know the exact name of the amnesia medication they gave you? If I knew what med then I could contact the folks out in Arkansas and see if they will arrange that for me. That is actually the place where I had two stem cell / bone marrow transplants 9 years ago.
The only "twilight" medicine, as they call it, that I have received for biopsies is not what you are describing at all. It made me feel like I drank half a shot of cheap Bourbon at most, but did nothing for pain or to interrupt memory in any way.
Thank you for your information and for your kind words. Do you know the exact name of the amnesia medication they gave you? If I knew what med then I could contact the folks out in Arkansas and see if they will arrange that for me. That is actually the place where I had two stem cell / bone marrow transplants 9 years ago.
The only "twilight" medicine, as they call it, that I have received for biopsies is not what you are describing at all. It made me feel like I drank half a shot of cheap Bourbon at most, but did nothing for pain or to interrupt memory in any way.
Re: Where to get general anesthetic for bone marrow biopsy?
carlrob3
I Googled "the Michael Jackson Drug" and propofol came up. This sounds right, and reading about it seems correct. It induces amnesia so you're awake but don't remember anything afterwards. If you tried this before without good results then either it is a dosing issue (maybe not enough for you) or you might react differently than I do.
I'm glad to hear you had two transplants in Little Rock 9 years ago. I've been with Dr. Barlogie since he was at MD Anderson in 1987. I still haven't had a transplant, doing well without one, but enough stem cells for about 6 of them if needed in the future. If you know how forward looking Little Rock is you can appreciate this
All my best to you.
Dan
I Googled "the Michael Jackson Drug" and propofol came up. This sounds right, and reading about it seems correct. It induces amnesia so you're awake but don't remember anything afterwards. If you tried this before without good results then either it is a dosing issue (maybe not enough for you) or you might react differently than I do.
I'm glad to hear you had two transplants in Little Rock 9 years ago. I've been with Dr. Barlogie since he was at MD Anderson in 1987. I still haven't had a transplant, doing well without one, but enough stem cells for about 6 of them if needed in the future. If you know how forward looking Little Rock is you can appreciate this
All my best to you.
Dan
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Dan in Phoenix
Re: Where to get general anesthetic for bone marrow biopsy?
I have been watching with interest since I found this forum people's experience with bone marrow biopsy and aspirations.
I have had three with local anesthesia and both hurt quite a bit, but nothing I would compare to child birth (not that I would know, as I am man), and nothing that would make me consider flying somewhere else to get it done. I also never had any pain afterword, it was only during the procedure itself.
I had far more pain for a 12 hour period when I was taking Neupogen in preparation for stem cell harvesting, which most people do not have. Yet dianaiad has birthed children without anesthesia and found the BMB to be worse. Others have said it has been extremely painful for them too. Carlrob3 has had 15 biopsies, which is more experience with these procedures than anyone I have heard from so far. Has the pain in all 15 been the same level of intensity?
Another Beacon blogger said he had a lot of pain afterwards for days.
I believe what people are saying and that they are not “wussies,” but I am really curious as to why the wide variation in the level of pain people experience with this procedure. Is it the difference in the technique the doctors use?
I can see how experience may make a lot of difference. My first time they used a needle tap to get into the hip bone, the second time they used a drill bit that was hollow that they inserted the needle through, and this was a bit better.
Maybe it is the amount and the way the doctor is applying the local anesthesia? My girlfriend watched my last one and said the doctor went through a lot of anesthesia needles trying his best to drive it into the bone. He described it as walking the needle line up into the bone. This hurt, but I think it made the drilling easier latter.
Maybe it is dumb luck -- the location of the tap is away from sensitive nerves coming from the spine. After three that were about the same, I feel more confident to know what to expect for my next one. But then, after reading other people’s experiences, I start to wonder if it may go the other way and next time I may be in for a real big surprise.
I have had three with local anesthesia and both hurt quite a bit, but nothing I would compare to child birth (not that I would know, as I am man), and nothing that would make me consider flying somewhere else to get it done. I also never had any pain afterword, it was only during the procedure itself.
I had far more pain for a 12 hour period when I was taking Neupogen in preparation for stem cell harvesting, which most people do not have. Yet dianaiad has birthed children without anesthesia and found the BMB to be worse. Others have said it has been extremely painful for them too. Carlrob3 has had 15 biopsies, which is more experience with these procedures than anyone I have heard from so far. Has the pain in all 15 been the same level of intensity?
Another Beacon blogger said he had a lot of pain afterwards for days.
I believe what people are saying and that they are not “wussies,” but I am really curious as to why the wide variation in the level of pain people experience with this procedure. Is it the difference in the technique the doctors use?
I can see how experience may make a lot of difference. My first time they used a needle tap to get into the hip bone, the second time they used a drill bit that was hollow that they inserted the needle through, and this was a bit better.
Maybe it is the amount and the way the doctor is applying the local anesthesia? My girlfriend watched my last one and said the doctor went through a lot of anesthesia needles trying his best to drive it into the bone. He described it as walking the needle line up into the bone. This hurt, but I think it made the drilling easier latter.
Maybe it is dumb luck -- the location of the tap is away from sensitive nerves coming from the spine. After three that were about the same, I feel more confident to know what to expect for my next one. But then, after reading other people’s experiences, I start to wonder if it may go the other way and next time I may be in for a real big surprise.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Where to get general anesthetic for bone marrow biopsy?
Hey Eric. Thank you for your response. I cannot speak for other people's pain level or tolerance for pain. What I can say is that, in my case, it's horrible. I've had them in different places, and by different doctors, and it seems like each one is worse than the last one.
To quantify what I mean by horrible, I can almost say I would prefer to just die now than to have to do another one without something stronger than local anesthetic. I realize every month I put this off, I am risking my life, and yet I am still stalling and I am very hesitant to do it again no matter what my doctor says.
I realize some are able to get through these like its no big thing. Either you have a different level of pain response, or you are a much bigger man or woman than I am. I will be a nervous wreck for a month leading up to it if I schedule one. I will probably lose 8-10 pounds and it will take me three to five months to gain it back.
To quantify what I mean by horrible, I can almost say I would prefer to just die now than to have to do another one without something stronger than local anesthetic. I realize every month I put this off, I am risking my life, and yet I am still stalling and I am very hesitant to do it again no matter what my doctor says.
I realize some are able to get through these like its no big thing. Either you have a different level of pain response, or you are a much bigger man or woman than I am. I will be a nervous wreck for a month leading up to it if I schedule one. I will probably lose 8-10 pounds and it will take me three to five months to gain it back.
Re: Where to get general anesthetic for bone marrow biopsy?
Hi Cairob3, I was reading this thread also and thought I would chime in too.
On the scale of pain, having already had children, taken Neupogen for stem cell harvest, and also had three bone marrow biopsies, none of the above were the worst pain I ever had. The worst pain was when I had several fractured vertebrae, which were related to having multiple myeloma! I just thank my lucky stars that those injuries healed up, with a lot of help from modern medical treatments! So I wouldn't think that having a bone marrow biopsy is the worst thing to worry about actually.
The first bone marrow biopsy I had was just with local anaesthetic, and it was very painful, although only for a few minutes. After that I opted for 'sedation', which worked really well for me. However, when I went to Google to check on the spelling of 'midazolam', I found that 'Versed' (the manufacturers name for medazolam) has been discontinued for use in the U.S. I guess that's why others are referring to different drugs such as propofol.
I think you should have a frank discussion with your medical team about this matter. Most patients seem to have an option to have a bone marrow biopsy with some sort of sedation.
On the scale of pain, having already had children, taken Neupogen for stem cell harvest, and also had three bone marrow biopsies, none of the above were the worst pain I ever had. The worst pain was when I had several fractured vertebrae, which were related to having multiple myeloma! I just thank my lucky stars that those injuries healed up, with a lot of help from modern medical treatments! So I wouldn't think that having a bone marrow biopsy is the worst thing to worry about actually.
The first bone marrow biopsy I had was just with local anaesthetic, and it was very painful, although only for a few minutes. After that I opted for 'sedation', which worked really well for me. However, when I went to Google to check on the spelling of 'midazolam', I found that 'Versed' (the manufacturers name for medazolam) has been discontinued for use in the U.S. I guess that's why others are referring to different drugs such as propofol.
I think you should have a frank discussion with your medical team about this matter. Most patients seem to have an option to have a bone marrow biopsy with some sort of sedation.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Where to get general anesthetic for bone marrow biopsy?
Nancy - I think Versed (midazolam) is still legally available in the U.S. It does have a so-called "black box warning", however, due to its potentially serious side effects. As best I can tell, the branded version of the drug, under the name Versed, has been discontinued, but there are still generic versions of it available.
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JimNY
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