Glad that's over!: Thought I'd post a wee update... - MPN Voice

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Glad that's over!

DENICE66 profile image
21 Replies

Thought I'd post a wee update on my BMB, which I had on Wednesday last week. I wasn't too worried as I'd had lots of supportive responses to some of my questions in a previous post. All I can say is thank goodness I didn't know what was coming! Maybe I was just unlucky but it was awful :(. I had a local anesthetic but that was all. I wasn't given any pain relief or sedation, even though I asked if I could maybe have a bit gas and air. The first aspiration thing was ok and even the actual bone marrow biopsy bit was bearable......if it had just been once. But the heamm did it at least six times (by which point I'd given up counting). I apparently have soft bones or something, which he said made getting a good sample difficult. I was on the table for over 45 minutes and crying in agony by the end.

I was so glad when it was over I scurried out as fast as I could. Afterwards though, I felt quite angry. Should I have been more forthright about asking for additional pain relief, particularly as I had multiple samples taken and it took so long? Has anyone experienced anything similar? I've decided to give him some constructive feedback when I go back for the results in 4 weeks. I don't think anyone else should have to go through that without being offered something to help.

Maybe I'm just being a big jessie (as my granny would say!) but I've had two babies at home without any drugs and would rather do that any day than have another experience like my BMB!

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DENICE66
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21 Replies
JediReject profile image
JediReject

I extend my empathy to you Denice. I'm sorry you had a difficult Biopsy. I too find them very painful and far too lengthy to endure with simply a local anaesthetic. . I'm no wimp or a jessie either as I never have injections for most dental work and have had a few painful episodes in life, but I find the bone core can take me to the point of AARGH.

I had my first biopsy done by a experienced doctor a number of years ago. He put the anaesthetic in and left me to go numb, of course it doesn't seem to numb your bone !!.

For the core he said count from 20 down and then he applied a deal of pressure which I felt as a real push motion. 25 seconds done.

My last 2 recently were very different. 35 -40 minutes of it. I thought they done but then said to me "right were going to take the core now" I said we'll you had better fire some more anaesthetic in which after a short discussion they agreed as I insisted. It took the slightly built nurse 4-7 minutes of effort to obtain it. The pain was shooting down my left leg, and I was gripping the bed frame and sweating. . Whew the relief when it was over. The next one was the same only a bit worse as they had to chase the bone to find the marrow.

Back in the waiting room a sheepish guy said "is it you that delayed my first biopsy appt by half an hour? How was it?" I smiled and said "No worries buddy it was fine, nowt to worry about". . I haven't seen him since thank goodness but he might have sailed through it. My advice is don't have a trainee they have to learn but if you find it traumatic ask for an experienced bod.

I will need several in the coming weeks, months. Ho Hum. . All my best to you. Chris

Stevesmum42 profile image
Stevesmum42 in reply to JediReject

Oh brave Jedi, you have gone through it ,on top of everything else. I hope next time they get it swiftly and painlessly .

Apart from that hope you are progressing well.

Best wishes Sandy x

westlieght profile image
westlieght in reply to JediReject

I feel for you and understand BMB the third one I had was dry taped!

Are you going to the London forum in November? Will meet up with Claire Harrison and Team.

Best wishes

DENICE66 profile image
DENICE66 in reply to westlieght

I doubt I'll make London. I'm in Scotland.....but will try to get along to an event at some point. Be lovely to meet people going through similar experiences. :)

Helen1952 profile image
Helen1952

Aww what a shame that you had such a bad experience especially of something that can never be easy .

I had a local too and my heam had to give it a couple of goes but it helped that she was very experienced and very kind and they were all kind afterwards too.

I hope that you feel a bit better now and are not too sore and with any luck you will never have to have another one .

Have to say I agree about having babies at least that gives us a great result .

Take care

Helen x

Stevesmum42 profile image
Stevesmum42

Oh poor you that sounds horrible. Mine was swift compared to that, can't say it was pain free but it was bearable , Hope the entry sites are not too achy.

Regards Sandy

Cdseiter profile image
Cdseiter

Denice- so sorry to heAr that you had a rough time if it. Mine was like Stevesmum42 described...bad but not awful. Took them quite a bit to get to my core becaus I hav really hard bones. I think you are well within your right to insist on more pain management of you ever need another. It is your body - you call the shots ...never forget that. Hope you feel better soon and that the biopsy will yield meaningful information......

IainF profile image
IainF

I had something similar to Jedi's experience too, although it wasn't as long as his was still a good 20 minutes. I was the last person to be 'done' that morning and the tiny (and I mean tiny, she was smaller than me Nanna - and she is tiny!) doctor stopped halfway through going for the core and said - "Sorry I have to stop for a bit as I'm exhausted!" and I could tell she was having a really hard time getting in there. As I had nowt but a local it wasn't very pleasant - I believe there might have been a bit of swearing at one point.

I'm having another in a few weeks but was really, quietly relieved when I was offered sedation or gas & air (I love Guys!).

Actually the worse bit for me was being asked by the extremely unfriendly, unpleasant, hard faced doctor 'How was it?' when I got my results - she looked genuinely shocked when told her it was bloody awful.

Jedi - Here's wishing you all the best over the next few weeks Chris, keep your spirits up, we're all thinking of you.

darcey profile image
darcey

I have had to have five bone marrow biopsy's. Over the last 14 years. As this is the only true way to see how your progressing.

I was ET for ten years & two years ago I was told I now have MF so have had to have a couple more in the last 18 months.

As I said I am now MF and I've reciently had to have two more. Uggh but it's the only way for then to see the progress from your bone marrow. The first two with just a local on the skin area.

A lot of pulling sensation and as I have hard bones they took about 45 mins too.discomfort but not nice.

One I had one with the addition of gas & air & a local on the area, did not do much for me.

The last two with ive had with a mild seditave first, as I am no jessie either but they hurt and are sore & tender for a few days afterwards.

I insist of the mild sedation now it does help.

We all have different pain thresholds I have had three babies and like having babies you forget afterwards. Can't say for the men!!!

A lot of people on here say it was not too bad!!!! We are all different.

lizzziep profile image
lizzziep

It sounds like my experience was pretty good, I had local anaesthetic and gas and air. Maybe that should be standard in hospitals. But we trust the doctors and nurses to do what is best for us. If I have to have another I think I will insist on the gas and air, if it isn't offered.

clematis26 profile image
clematis26

Hi Denice - very sorry indeed to read of your experience. Strange how these Haems blame our bones for the problems they have ..... you are a very brave lady. Good luck with the feedback - or you could try PALS or Head of Dept. Take it easy and hope you feel better soon, Sue

Nickthedevil profile image
Nickthedevil

I really feel for you. Mine was exactly like yours, it took forever and was the most painful thing I had ever experienced. They had promised me sedation but the junior doctor who did it said it wasn't necessary even though both my daughter and I tried to insist! She even had the cheek to say afterwards 'I told you it wasn't so bad' . I was speechless. I complained at my next visit. Hope you are feeling better.

Karen x

DENICE66 profile image
DENICE66

Thanks to you all for sharing your experience. It's rubbish to know some of you had such a hard time but reassuring to feel it wasn't just me who struggled. My heart goes out to anyone who's had to endure repeated BMB's - I think they'd have to knock me unconscious before dragging me back onto that table!

If I do ever have to have another one, I'll feel much more confident about asking for more pain relief. It's such a confusing time being newly diagnosed, I think we put all our trust in the medics and maybe forget to trust our own bodies and instincts too. And I'm normally a pretty stroppy mare!

Anyway, I'm looking forward to my four weeks of 'normality' before I get the full results. I'm fortunate not too have too many symptoms - just the sweats and a bit tiredness/aching - so I can remain in denial a wee bit longer, lol. :)

catkinspolymer profile image
catkinspolymer

Hi Denice,

had mine over 20 years ago and I would say it was the highest pain level I had ever experienced. I had not long before had a vasectomy and that seemed easy in comparison . Normally i have a high pain threshold but i was shaking with pain during it and after. luckily never needed another.

all the best Town Crier ET for 20 years + HU plus baby aspirin

trevic profile image
trevic

My first bmb was the same, absolute agony and only local anaesthesia. My haematologist said the problem was my bones were too hard. I could feel him scraping up and down my pelvis trying to get in! The whole thing ended in complete failure. I was left to make my own way out of the department at which point my legs gave way. I refused consent for a second bmb unless serious sedation was considered. This was done in theatre although I don't think they were happy about it. I know many people have a really easy biopsy but I do think the other side should be out there too. I now need a third biopsy but it won't be done in the original hospital and only after much discussion!! Get angry! Haematologists often forget they are dealing with real people and not microscope slides

idi75 profile image
idi75

Can't a general anaesthetic be considered? It is inconceivable that patients should be subjected to such a painful procedure without sufficient pain control. Although the cause of my high red blood cell count, controlled by venesection, has never been diagnosed, my haem. has never considered using a bone marrow biopsy for diagnosis. I now understand why!

Hi Denice

I'm really sorry it was so bad for you, I think I have been very lucky have had two this year and my Heam very experienced and just had local, both times over in about 5 mins without very much pain - was worse for the other half in a way as he was in the room and could see what was happening - I'm no hero just think I have been very lucky.

Love Caz xx

Had mine done by a strapping young bloke and he really struggled saying that my bones were really hard. After going at me for quite a while, sweating like mad he said I need another needle. He got another one and that took a while as well, at the end the table was covered in blood and he asked if I wanted to see the first needle. He showed it to me and it was bent at nearly 90%, he said, "I told you your bones were hard, that's never happened to me in 20 years".

I simply told him that I was from Yorkshire and we give nothing away without a fight.

rubyrubyruby profile image
rubyrubyruby

I had one 3 years ago when first diagnosed, it was horrific ! I gave had 2 babies too and it was soooo much worse. I screamed so loudly the nurse on duty outside heard me! My husband said it was awful watching me in so much pain, I only had a local too!

Today I have just had my appt at Guys and it seems as my bloods are doing silly things, they are thinking I should have another one, my first was a local private hospital. I am terrified about the prospect! They have said I can be sedated, which I really hope will make it a bit easier. I nearly burst into tears when they said I would have to have another one!

DENICE66 profile image
DENICE66 in reply to rubyrubyruby

Oh that's pants :((. Hope this one is less traumatic. Finger's crossed the sedation helps. Why not plan something nice a few days afterwards? Give you something positive to focus on. x

westlieght profile image
westlieght

Hi you have every right to feel this it's ok too! Yes it B,ing hurts complain wow 45mins to long??? My last BMB was the worst painful with no pain killers ouch !

Best wishes

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