Bone Marrow Aspiration - Long Term Pain Expecations

Posted by gmill123 @gmill123, Oct 14, 2020

Hello –

I had a bone marrow aspiration completed for a stem cell banking process about 3.5 months ago now, and I’m still having pain as if it was done yesterday. I’ve seen a lot of doctors about it and they are all saying pretty much that I just have to wait.

Everything that I saw and read before the procedure said that I would be “normal” within 1-2 days after the procedure, and I’m just so shocked at how wrong all of that is.

Has anybody else had experience with a bone marrow aspiration?

@duttasujata

Hi Gmill,
Sorry to hear about your problems post the bone marrow biopsy. I’ve had 3 thus far, to detect and access the state of my disease – I have multiple myeloma. I have experienced soreness and pain post aspiration that lasted couple days to a week max. Reading your experience, it would be best to consult a specialist that really understands the procedure and your problem. Also, Since you are training for Ironman, I’m assuming you have a rigorous exercise routine – does that have anything to do with the discomfort?

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Have you had any long term discomfort?

Part of me also feels badly because I didn't need to do this procedure but I was convinced by a company that it would be a good thing to do. I did this procedure to bank stem cells while I am young and now I am having issues with it.

I'm assuming my working out has to do with the pain, but it's mainly rough in the morning and not while I actually am working out.

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I almost feel like I shouldn't be complaining because everyone else who probably had this procedure done had some sort of serious complication. For you guys, I have a newfound respect and admiration of what you have to go through.

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@gmill123

Have you had any long term discomfort?

Part of me also feels badly because I didn't need to do this procedure but I was convinced by a company that it would be a good thing to do. I did this procedure to bank stem cells while I am young and now I am having issues with it.

I'm assuming my working out has to do with the pain, but it's mainly rough in the morning and not while I actually am working out.

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I had a prolapsed disc in 1993. If I overdo the active, even now I feel the effects two days later! I have found that sometimes it takes a while for the muscles to react! That could be it!

Liked by gmill123

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@jengri

My first bone marrow biopsy was slightly sore for about two days. Waiting two months for a specialist is unacceptable. I know that is not helpful. Do you live in U.S?

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@migizii. This is a very common time frame for me to wait for a specialist too, but it is not unusual to have to wait up to six months. I live in the USA.

Liked by gmill123

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@migizii

@migizii. This is a very common time frame for me to wait for a specialist too, but it is not unusual to have to wait up to six months. I live in the USA.

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Timely access to our physicians is critical. I find this wait time very unusual. I’ve seen specialists at UVA, Duke and most recently the Mayo Clinic in Phoenix. The latter was scheduled in less than a month. That said, it takes me about 2 weeks to fully recover from a biopsy. I have level 3 fibrosis which makes the procedure more challenging.

Liked by gmill123

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My husband has Multiple Myeloma (in remission) and Myelodysplastic Syndrome which he is under going current treatment for. He has had 8 bone marrow biopsies. 4 of them since December 2019. He has a little tenderness almost like a bruise for a couple days and then he is fine. I'm a tittle confused as to why you would bank stem cells if you do not have any disease. Do you have a family history of blood cancer? Hopefully you get relief soon.

Liked by loribmt

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@kjjjrader

My husband has Multiple Myeloma (in remission) and Myelodysplastic Syndrome which he is under going current treatment for. He has had 8 bone marrow biopsies. 4 of them since December 2019. He has a little tenderness almost like a bruise for a couple days and then he is fine. I'm a tittle confused as to why you would bank stem cells if you do not have any disease. Do you have a family history of blood cancer? Hopefully you get relief soon.

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The idea was that you can bank your stem cells while you are healthy. I didn't have any history of blood cancer or anything but I know that they are studying stem cells and I wanted to bank them in case I got covid or something. Prior to the procedure, I was healthy and able to run bike and swim every day with no pain.

Now, after the procedure, I'm in chronic pain from the procedure itself. I haven't been able to think, walk, exercise really in the past 2 months, and am living with constant fear that I'll never be able to walk, run or bike without pain.

I know that everyone on this forum has had worse experiences than this so I feel terrible that this procedure has defeated me.

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@gmill123

The idea was that you can bank your stem cells while you are healthy. I didn't have any history of blood cancer or anything but I know that they are studying stem cells and I wanted to bank them in case I got covid or something. Prior to the procedure, I was healthy and able to run bike and swim every day with no pain.

Now, after the procedure, I'm in chronic pain from the procedure itself. I haven't been able to think, walk, exercise really in the past 2 months, and am living with constant fear that I'll never be able to walk, run or bike without pain.

I know that everyone on this forum has had worse experiences than this so I feel terrible that this procedure has defeated me.

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@gmill123 Im so sorry you are now having physical problems do you attribute it all to banking your stem cells? Have you talked to your Dr about this ? It could' ,maybe, just a suggestion Im not familiar with your procedure or stem cells , that there was something else starting to happen in your body that reducing the stem cells brought on? Be your own advocate and talk to the place where you had this done ,your Dr and any specialist you may need to see

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@gmill123

The idea was that you can bank your stem cells while you are healthy. I didn't have any history of blood cancer or anything but I know that they are studying stem cells and I wanted to bank them in case I got covid or something. Prior to the procedure, I was healthy and able to run bike and swim every day with no pain.

Now, after the procedure, I'm in chronic pain from the procedure itself. I haven't been able to think, walk, exercise really in the past 2 months, and am living with constant fear that I'll never be able to walk, run or bike without pain.

I know that everyone on this forum has had worse experiences than this so I feel terrible that this procedure has defeated me.

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@gmaill123, What we or anyone else have gone through doesn’t in any way diminish what you’re living through. We each have our own personal battles. You obviously felt you were doing something to contribute to your future, if needed. I’m sorry you’re having to deal with this!
In my opinion, I really think you need to contact a reputable facility which does Bone Marrow/Stem Cell procedures such as one of the Mayo Clinic’s, MD Anderson, or someplace with a notable reputation, (Hematology dept) explain what has happened and get an opinion from specialists in the field. Something doesn’t sound right with this entire situation, especially with the doctor who performed the procedure dismissing you after asking too many questions. What doesn’t check with me is that most stem cells are procured peripherally through blood, not through an actual bone marrow specimen. Very little marrow is extracted during an aspiration. Though I do understand even freshly extracted teeth are being stored cryogenically for the small amount of stem cells they hold.
After having 10 bone marrow biopsies, which is a bone marrow aspiration, I have no lingering pain except the last one, 2 weeks ago. Still a bit tender but nothing like what you’re experiencing, that just doesn’t sound normal. I’d also contact a lawyer, check with the BBB and check your doctor’s accreditation and credentials. In a call to Mayo or a reputable clinic, you might want to ask if they’ve ever heard of your clinic. Something just smells fishy. This has impacted your life so negatively, you really need to be aggressive in getting answers. Good luck to you!

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@loribmt

@gmaill123, What we or anyone else have gone through doesn’t in any way diminish what you’re living through. We each have our own personal battles. You obviously felt you were doing something to contribute to your future, if needed. I’m sorry you’re having to deal with this!
In my opinion, I really think you need to contact a reputable facility which does Bone Marrow/Stem Cell procedures such as one of the Mayo Clinic’s, MD Anderson, or someplace with a notable reputation, (Hematology dept) explain what has happened and get an opinion from specialists in the field. Something doesn’t sound right with this entire situation, especially with the doctor who performed the procedure dismissing you after asking too many questions. What doesn’t check with me is that most stem cells are procured peripherally through blood, not through an actual bone marrow specimen. Very little marrow is extracted during an aspiration. Though I do understand even freshly extracted teeth are being stored cryogenically for the small amount of stem cells they hold.
After having 10 bone marrow biopsies, which is a bone marrow aspiration, I have no lingering pain except the last one, 2 weeks ago. Still a bit tender but nothing like what you’re experiencing, that just doesn’t sound normal. I’d also contact a lawyer, check with the BBB and check your doctor’s accreditation and credentials. In a call to Mayo or a reputable clinic, you might want to ask if they’ve ever heard of your clinic. Something just smells fishy. This has impacted your life so negatively, you really need to be aggressive in getting answers. Good luck to you!

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Thank you for your reply – and I actually have contacted a lawyer. Apparently, unless I can prove there was permenant damage, my case will most likely not get picked up. I reviewed the doctor's history on google reviews and health grades, and although he went to harvard he had some complaints similar to mine.

I purchased the procedure from a direct to consumer company who does the banking. They set you up with a doctor who does the procedure, and advertised the bone marrow aspiration process as a "Simple outpatient procedure lasting 15 minutes". Since they do the business side and the doctor does the medical side, no party is taking real responsibilty and I am on my own.

I wish I would have known this is what it is like and that my life would be forever altered.

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@gmill123

Thank you for your reply – and I actually have contacted a lawyer. Apparently, unless I can prove there was permenant damage, my case will most likely not get picked up. I reviewed the doctor's history on google reviews and health grades, and although he went to harvard he had some complaints similar to mine.

I purchased the procedure from a direct to consumer company who does the banking. They set you up with a doctor who does the procedure, and advertised the bone marrow aspiration process as a "Simple outpatient procedure lasting 15 minutes". Since they do the business side and the doctor does the medical side, no party is taking real responsibilty and I am on my own.

I wish I would have known this is what it is like and that my life would be forever altered.

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You have my sincere empathy. As someone who has been athletic all my life I can truly understand the frustration of being tossed into unfamiliar territory of being sidelined. Having read one of your earlier posts you mentioned that walking actually helped somewhat but that intense exercise really exacerbates the pain. You’re currently training for an Ironman competition so I’m guessing you’re not unfamiliar with pain and possible sports related injuries. The first thing that comes to mind is “Listen to your body” and perhaps back out of the competition this year. The last thing you wanted to hear. But it might give your body the opportunity to heal by not putting strain on the muscles/tendons attached to the aspiration area. Treat this like a sports injury where you need to be out for a while, do some PT and then move forward. If it helps, you may avoid permanent injury and get some relief or find out that it is ongoing, then follow through with a plan of action.

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@loribmt

You have my sincere empathy. As someone who has been athletic all my life I can truly understand the frustration of being tossed into unfamiliar territory of being sidelined. Having read one of your earlier posts you mentioned that walking actually helped somewhat but that intense exercise really exacerbates the pain. You’re currently training for an Ironman competition so I’m guessing you’re not unfamiliar with pain and possible sports related injuries. The first thing that comes to mind is “Listen to your body” and perhaps back out of the competition this year. The last thing you wanted to hear. But it might give your body the opportunity to heal by not putting strain on the muscles/tendons attached to the aspiration area. Treat this like a sports injury where you need to be out for a while, do some PT and then move forward. If it helps, you may avoid permanent injury and get some relief or find out that it is ongoing, then follow through with a plan of action.

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Thank you for the kind words and advice. It still continues to hurt everyday and I’ve backed off of training.

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So I got an MRI and got the results back today. The MRI was of the bony pelvis and only a 1.5T machine. Here's what they found:

"Mild scarring of the subcutaneous tissues overlying the left iliac crest with small osseous defect at the margin of the lower portion of the sacroiliac joint on the iliac side likely reflective of the harvest tract. Mild associated increased signal at this site likely reflects granulation tissue but there is no discrete abnormality present. No hematoma or other abnormality is noted."

I got an Ultrasound done ( yes, I feel bad about getting so many tests) and this is what they said:
"FINDINGS: Small cutaneous defect superficial to the lateral margin of the sacrum which correlates with small scar at the previous biopsy device insertion site. There is a linear hypoechoic defect within the gluteal and paraspinal musculature deep to the skin incision compatible with the biopsy tract. No fluid collection identified to suggest hematoma. The sciatic nerve is identified and appeared morphologically normal"

I don't really hear back from my doctor – but I'm having a hard time figuring out what this all means. The Ultrasound makes it sound like there was a muscle tear in the paraspinal and gluteal muscle, but they haven't compared this to the other side. The MRI makes it sound like the muscles look fine, but the there is scar tissue of the fasicia. Knowing exactly what the injury is that I'm feeling would help me in figuring out regenerative medicine to choose.

Can someone provide input into this?

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@gmill123

So I got an MRI and got the results back today. The MRI was of the bony pelvis and only a 1.5T machine. Here's what they found:

"Mild scarring of the subcutaneous tissues overlying the left iliac crest with small osseous defect at the margin of the lower portion of the sacroiliac joint on the iliac side likely reflective of the harvest tract. Mild associated increased signal at this site likely reflects granulation tissue but there is no discrete abnormality present. No hematoma or other abnormality is noted."

I got an Ultrasound done ( yes, I feel bad about getting so many tests) and this is what they said:
"FINDINGS: Small cutaneous defect superficial to the lateral margin of the sacrum which correlates with small scar at the previous biopsy device insertion site. There is a linear hypoechoic defect within the gluteal and paraspinal musculature deep to the skin incision compatible with the biopsy tract. No fluid collection identified to suggest hematoma. The sciatic nerve is identified and appeared morphologically normal"

I don't really hear back from my doctor – but I'm having a hard time figuring out what this all means. The Ultrasound makes it sound like there was a muscle tear in the paraspinal and gluteal muscle, but they haven't compared this to the other side. The MRI makes it sound like the muscles look fine, but the there is scar tissue of the fasicia. Knowing exactly what the injury is that I'm feeling would help me in figuring out regenerative medicine to choose.

Can someone provide input into this?

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@gmill123, I'm afraid interpreting imaging studies is above my pay grade. When do you have an appointment to discuss the findings with your doctor or specialist?

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@gmill123

So I got an MRI and got the results back today. The MRI was of the bony pelvis and only a 1.5T machine. Here's what they found:

"Mild scarring of the subcutaneous tissues overlying the left iliac crest with small osseous defect at the margin of the lower portion of the sacroiliac joint on the iliac side likely reflective of the harvest tract. Mild associated increased signal at this site likely reflects granulation tissue but there is no discrete abnormality present. No hematoma or other abnormality is noted."

I got an Ultrasound done ( yes, I feel bad about getting so many tests) and this is what they said:
"FINDINGS: Small cutaneous defect superficial to the lateral margin of the sacrum which correlates with small scar at the previous biopsy device insertion site. There is a linear hypoechoic defect within the gluteal and paraspinal musculature deep to the skin incision compatible with the biopsy tract. No fluid collection identified to suggest hematoma. The sciatic nerve is identified and appeared morphologically normal"

I don't really hear back from my doctor – but I'm having a hard time figuring out what this all means. The Ultrasound makes it sound like there was a muscle tear in the paraspinal and gluteal muscle, but they haven't compared this to the other side. The MRI makes it sound like the muscles look fine, but the there is scar tissue of the fasicia. Knowing exactly what the injury is that I'm feeling would help me in figuring out regenerative medicine to choose.

Can someone provide input into this?

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Good to hear from you as I’ve been wondering how you’re fairing with your symptoms. It’s great you’ve gotten the much needed diagnostics. Both were necessary to get a comprehensive picture of what’s causing your pain. Generally after the results have been returned there’s a follow up consultation with the doctor who ordered the tests. If you haven’t received a date for that, it might be in your best interest to call the office and schedule a consult. You don’t have to wait for them to call you. Even a tiny tear in the muscles mentioned in the report can cause a great deal of discomfort as they are in major movement areas and scar tissue can impair proper muscle movement. Whether it’s cause and effect from the aspiration or coincidental with the Ironman training, it would be good to sit down with the doctor to get some much needed answers. Also, some PT might be suggested to help with proper healing. Best wishes going forward! Keep in touch as it’s important to see how this gets resolved.

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