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?

@gmill123

that's quite a few biopsies! Do you get them done from the same spot? the pain is a deep ache – it feels as if I had the procedure done yesterday.

Unfortunately, I can't speak to the doctor who did the procedure. It was at his private clinic and he's frustrated with me for asking so many questions so he's refused to work with me any longer.

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After my biopsy in 2011 which proved I had MF, I had an appointment with the consultant. She offered me the chemo tablet. I said, "No thank you, I cannot believe that something which does so much harm can be good for one!" She 'sacked' me on the spot. (Just as well). My GP, a fine man, got me another consultant and later I saw another who is very good. He accepts I am using natural supplements – with the help of a medical herbalist. He also said recently, in front of a student. "Whatever you are doing, keep on doing it. It is working. You are unusually stable!"

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@gmill123

that's quite a few biopsies! Do you get them done from the same spot? the pain is a deep ache – it feels as if I had the procedure done yesterday.

Unfortunately, I can't speak to the doctor who did the procedure. It was at his private clinic and he's frustrated with me for asking so many questions so he's refused to work with me any longer.

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All my biopsies were for diagnosis and progress Updates with my treatments of Acute Myeloid Leukemia and subsequent SCT. From what I’m reading about your experience I’d also recommend a change in treatment centers. I guess I’m not understanding who secured your stem cells for treatment. Will you be having a stem cell transplant? Cell harvesting is generally completed under the supervision of a stem cell/bone marrow transplant team. They’re dedicated to your treatment, care and education. If you’re not getting the answers you deserve then definitely seek expertise elsewhere. We ask a lot of questions of my team if concerns pop up and never dismissed out of hand. I’m so sorry you’re having a negative experience.

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@gmill123

Hi – Thank you for this.

No, I just had a bone marrow aspiration completed to bank stem cells for future use. I'm worried I had some permenant damage and I am not receiving adequate care from any doctor and I have to wait 2 months before I can get in to see a specialist.

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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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@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!

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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.

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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.

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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.

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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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