Bone marrow biopsy: Was it painful?

I have never done doctors, i'm Jak 2 positive MPN ET, i don't want a bone b, i'll allergic to cain family so no numbing agent works with making me very ill, i also have MH Crisis from an inhaled gas, so i'm not sure they would sadate me, so i'm not sure why i really need one..i know it is for marrow scarring, but if they can't cure but can only treat with drugs that make you sick or have such side effect you don't have a life, i have not ever had the flu or a cold in my life, and i'm 76 and i work or did like a 50 yr old taking care of 2.5 acres to mow every week 200 trees and 50 rose plants, and my 96 yr old aunt lives with me. i ususally have a border collie but he passed in Feb of this year. I have Medical ptsd and it is just hard to give blood when you have never done it.. i can even go in the building with out having problems, As a kid i can remember other in the house being ill, but i was the one making toast and soup at a very young age. This is all too much for me to handle i think. I can move to Canada if i need to. i'm not afraid of pain, but i usually fix things. no doctors..

I was scheduled to have a bone marrow transplant in 2025. Prior to having it, I had been in PT for a torn miniscus. I decided to pause PT because of the upcoming biopsy. My Physical Therapist said her mom had had the biopsy and it was the most painful procedure. Of course, this made me concerned.
The biopsy was NOT painful ....I took one Tylenol afterwards for a slight discomfort....my concern had been for nothing!

I only know this because I asked the nurse who did my last BMB at Mayo. She said they have 6 BMB qualified nurses on staff who do all the BMBs at Rochester. They are basically in clinic 3 days a week and travel the hospital for in room biopsies the other 2. She said they average 15 biopsies per day and some of these nurses have been doing this for years. My 1st BMB nurse said he was doing biopsies at Mayo Rochester for 15 years so they are quite skilled. I've had 2 done under local with no pain or post procedure issues. I have a 3rd scheduled for late September.

Hi @twitt1949 There is a significant difference between mild sedation offered for procedures such as a bone marrow biopsy and colonoscopy, than full general anesthesia. There are also varying levels of both types of sedation/pain management.
The mild sedation using a combination of propofol and fentanyl is usually well tolerated and the effects diminish quickly.
Generally anesthesia is usually a much deeper sedation and those effects may take a couple of days or more to fully dissipate in some people. I remember a surgery years ago that my mom had and her experience, which then left me concerned to be under anesthesia. But I was promised that the mild sedation I’d be receiving for my procedures would be a much different experience…and it was. It’s referred to as PSA or Procedural sedation and analgesia (PSA).

I’m sorry you had a rough recovery after your sinus biopsy. Not sure if it was the anesthesia or just being in such a sensitive area.

I would be surprised that the biopsy caused the issue of pain long term. I have had 4 biopsies; one without sedation... that didn't feel great, but resolved in a few days. She could have gotten an infection through the biopsy site or she may have an underlying issue causing the weakness and pain. Take any blood work number that is not in the normal range as a serious issue and get to the bottom of it. There is a normal range for a reason. While slightly out of normal doesn't mean full blown stage 3/4 cancer it may be the precursor to cancer and should be tested for gene mutations etc. Sorry to hear life is a bit of a struggle, praying they can find the issue and cure her of the ills.

@gingerw

No, we are going there because she is allergic to Betaseron, and the Pegasus is really difficult on her system. She also has extreme hip pain and extreme nausea, and we all know fatigue comes along with this. We have tried shots in the hip and the leg, and we are working on stomach issues. The shots did not work, and that is why I came up with the bone marrow issue. She has had one thing after another. She is 24, and she just stays in the house. She cannot walk far. Anyway, it is a lot of stuff, and I was curious if anyone had experienced anything when they had their bone marrow biopsy—if anyone had symptoms for a long period of time or symptoms associated with that. I am sorry for text talking, so if this sounds weird, my apologies. She already had a biopsy when she was diagnosed with ETJAK2. My question is more about her pain in her leg, which is disabling her from walking far. We got injections in her hip and back to see if those would help, but they did not. I was curious if anyone had an issue with their biopsy causing pain that lasted, and what they did about it. We are going to the Mayo Clinic because she is allergic to Betaseron, and the interferon causes severe side effects. Those severe side effects, along with her terrible leg pain and nausea, mean we are just trying to figure all this out and piece it together.

@dmcj
Hi friend! I feel very bad for your daughter and all of you ! My first three BMB WERE DONE IN DOCTORS OFFICE ! The last one , hurt so bad if I was standup I would have passed out!!
My fourth one , new doctor new hospital! I told them I must be put to sleep and do not want to feel or hear anything!
So my MPN SPECIALIST ARRANGED FOR THAT !
After I woke up , I felt no pain ! The PA HAD PERFORMED SUCCESSFULLY BIOPSIES
NO BLEEDING NO PAIN NO BRUSE !!
That is the way a patient should feel !!
Even my first three BMB HIRT ONLY DURING THR PROCEDURE!! NOT AFTER!! It is A CRYING SHAME THAT YOUR YOUNG LOVED ONE HAD TO SUFFER !! I am sorry for what she is suffering through 🥵🥵I would not go back to same place for another biopsy!!
I do not know what and how it was done to cause long term pain ! Will THINK OF HER AND PRAY THAT SOMETHING CAN BE DONE TO HELP HER !
Keep looking for answers and hope you will find help for her ! GOD S BLESSING

Hi @ladyplumber7
Certainly as a patient you have a right to decide against any treatments or testing that you don’t want. But somewhere along the line you must have had blood work done that showed a high level of platelets because you were diagnosied with ET (essential thrombocythemia) related to a defect in the JAK2 gene. Basically what this means is the ‘off’ switch that controls the production of platelets is malfunctioning. So your body makes more platelets than it can use. Usually a bone marrow biopsy isn’t required to diagnose this condition because it is distinguished adequately through blood tests. Though there are times when a doctor will recommend the biopsy to determine the extent of the disease. If you needed a bone marrow biopsy, then they may recommend IV sedation which is super easy, no mask, no ‘caine ’ anesthetic.

When there is an overabundance of platelets it can leave you more susceptible to blood clots in legs or lungs, or at a higher risk for a stroke. Quite often, doctors will suggest a medication such as hydroxurea to help keep the production of platelets under control. There are other drugs, such as Besremi that are targeted to that specific mutation to keep those cells from proliferating. Another common drug, baby dose aspirin is taken to help keep the blood thinned. There are quite a few members in Connect with ET who take Hydroxyurea with very limited side effects but it keeps their platelets at safer level.

I realize you’re not a fan of doctors or medical procedures so you’re hesitant about taking medications. I don’t understand your reference to moving to Canada. The recommended treatment for ET would be the same. But either way, it might make sense to keep your stroke risk lower by considering medication.
Have you been advised to take aspirin or Hydroxurea?

@gingerw I was told that sedation and CT scans were the only way a bone marrow biopsy was done. But that's not what the majority of cancer hospitals were saying when I checked online. Even AI said it wasn't mandatory! So I found another doctor. I had the biopsy done without sedation and without radiation. I had no problems with the procedure that took no more than 1/2 hour, once started. The first doctor never gave me a good reason why she required sedation and radiation and claimed I would have a hard time finding anyone who would do the bone marrow biopsy differently. My eGFR is 85 so I'm fine for contrast dye. Thanks for your concern!