I had a mastectomy and LD recon on the 22nd. From the left side of my spine below my scar to the top of my hip I have reduced sensation. The sensation carries on right the way around my side to halfway across my tummy. The consultant said yesterday that it might be permanent but that the nerves may regrow in weeks or months.
I was aware that my upper arm might have some long term or permanent numbness etc following the lymph node removal but had no idea about this. Has anyone else any experience of such a large area of numbness and whether it was a temporary thing etc?
Its such a weird feeling - not numb really but when I touch my skin it feels v odd - like having had an injection at the dentist and the feeling starting to return. Every time I sit back or someone touches me there I jump - not because it hurts but because the sensation is sooo weird.
I know what you mean. I have had bi-lat ld recon and my numbness goes from my back scars to my waist and under my arms. My first recon was in January and second was done in June and it seems the area of numbness seems to have stayed in this area now.
I had some extra physiotherapy at work and he told me to have massages to encourage sensation to return, but I do not like the feeling around the edges of the numb area which is tender to touch and itches sometimes. The physiotherapist in hospital told me to rub different textured things across my back to ‘re-educate’ the nerve endings - I havn’t really tried it though.
I suppose there is still a chance of some sensation returning and it is still very early days for you. For a while I found it strange in the car going round bends and it felt like I was leaning against something. Putting deoderant on is strange too.
I had mastectomy, lymph node clearance and lat dorsi reconstruction 4 yrs ago. The numbness under the armpit was really strange and I hated the odd sensation when I washed and put deodorant under there…it felt like I was touching cold trifle. But the numbness did begin to diminish- after about 3 months, I think, and gradually I got most of the feeling back.
I had forgotten about the numb area on the back until I read your posts, but I did have that, too. I remember once at work a child tapped me on my back to get my attention, and I felt very annoyed and irritated when a relative gave me a great thump on the back as a greeting (not that they knew anything of my bc or op). Both times I really jumped and also I felt quite queasy…definitely not a nice experience. But have since got a lot of the feeling back, over about 2 yrs, although area around scar remains semi-numb and it feels tightish sometimes.
I had LD flap recon on 12th May, and am pleased to report that everything is gradually unfreezing. I’ve had the same numbness - upper arm to elbow, armpit and tip of scar to waist. I have found that the return of feeling is generally heralded by a discomfort which feels like your skin has been sunburnt, and occasionally other little aches and pains too.
Thanks for your comments. Must keep telling myself its early days. What deoderant do you use? I have been using the crystal stick type thingy the BCN gave me but I cant tell if its actually going on and as I seem to be sweating like the proverbial every night since surgery (why I don’t know) I am paranoid I stink constantly!
I use alcohol-free mum, or bionsen roll-on deodorant from supermarket which has no alcohol or aluminium. I always put deodorant on other armpit first so could feel it going on, then had more confidence it was actually covering numb armpit afterwards. I always then dry armpits with hair dryer as they seem to stay damp for ages otherwise! By the way, my numb armpit didn’t sweat for ages after surgery!
Thanks timetraveller will have a look out for them! Think I may have solved the sweating problem (it was all over and on reflection the numb armpit was the least sweaty bit of me) - have been using a soft buckwheat pillow to go under my arm and stop it squashing the bit of my boob/back that goes around my side whilst I try to sleep on the other side because it molded to me better - decided not to use it last night as swelling going down and ta dah no more drowning in sweat!!
I invested in a Chillow to cope with the sweaty night thing - mine being due to enforced chemo menopause. The best 25 quid spent!
My onc isnt’ into deodorent changing - I’ve stuck to my usual brand.
Rosebud454
Hi ostrich, just browsing threads. I think a chillow is a cooling sort of pillow. I know you can order them through the Amoena catalogue, but your bc nurse may know also.
Rosie x
Hi Ostrich, I have just come back from the bc clinic where Ive started acupuncture for hot flushes, and theyve given me a chillow pillow, the ladies on the course said they are brilliant - well will try anything!!
Have just been told by onc that will be having 6 x FEC and then tamoxifen so am def going to look into the chillow as have had problems with night sweats intermittently throughought my life (and lots recently) - anything not to wake up in that awful state
I had a double mastectomy and immediate LD recon on 14.6.08. Most of my back is still numb but some of the feeling is returning gradually, but my bingo wings are still numb and hurt when I swing my arms when walking briskly and change gear. The pain down my sides is much better. Yes it did and still does reach around to my tummy. I’m so glad you mentioned this as my PS and the nurse said this was nothing to do with the op as they hadnt touched there.
Have always thought about a chillow pillow as have terrible sweats at night as I had to come off my HRT. Did the hospital provide yours free Bessieboo and are they hard as I like soft pillows?
Can anyone else suggest alternatives to HRT as my doctor has said nothing works!
I have terrible difficulty getting hold of the PS nurse and am desperate to find something to help the discomfort due to the tightness in my back. Will massage help that?
Sorry - haven’t caught up with this thread for a few days!
Chillow is the brand. It comes in various sizes, for applyiing to various bits. I chose the pillow sized one. It is flat and the covering is soft. You fill it with water which reacts with the gel innards creating a coldness when you lay on it. I fing it too hard to put in my pillow as it isn’t yielding, but it is fantastic for laying ON in the bed, or if you’re sat (reading, tv etc). If you lay on it all night it does loose it’s coldness, but cools quickly thereafter. I often lay my whole body on it when having a dreaded flush and roll off when it passes.
I have also found that the chemo plays havoc with my temperature control, not just the ‘enforced’ manopause thing.
As you can tell, I love my Chillow!! It was about £25 - google chillow.
You won’t regret it!
Hi Max, Yes the breast clinic gave me the chillow when I went to have acupuncture on Monday, my night sweats are terrible, couldnt sleep at all the other night. I put the chillow under my ordinary pillow and then whisk the ordinary one off when get hot. I also had to come off HRT overnight, and then Im on Arimidex now - so dont know which is causing them! I was told to take starflower oil capsules to help as well. Havnt kicked in yet - but I’ll try anything!
I had double mastectomy on July 24th, and no reconstruction - numb under my arms and strange feelings down the underside of arms, particularly left arm - BC nurse said to keep doing excercises, so I am!
Have ordered my chillow!! Still sweating like the proverbial every night since op! Maybe having the menopause anyhow!
My front and left side are less numb now, in fact the feeling is pretty good but strangely painful around the edge. My back is still numbish but think thats because of the fluid and “squishy bits” (as quoted from my surgeon) where there are clots that he can’t drain (ugh). Under my upper arm is numb and painful to the touch (my bingo wings) and it feels very tight in my arm pit when I try and put my arm out to the side and up - can still only manage 90 degrees that way though nearer 135 degrees frontwards but still tight feeling in armpit.
Hope you find some relief for your tightness Max, do you still have fluid or has that settled now? Is the tightnss all across your bak or where the scar is?
You may find it useful to have a look at the BCC fact sheet on menopausal symptoms as there is some information about how to relieve some of the symptoms some of you are experiencing, it can be found by following the link below:-
Hi
I had mastectomy and LD flap recon on Aug 4th. My GP referred me for physio, because of restricted arm movement, tightness and pain down my ribs at the side, and general tightness and twitching across my back and to new boob. I had my first session today which lasted an hour. She is a specialist breast physio and knew what she was talking about. My problems are mostly caused by scar tissue and adhesions. She was particularly concerned about my ribs, which are very firmly stuck, and very uncomfortable.The only solution to this is ‘deep tissue massage’ .However while the massage was mostly pleasant, apart from some sharp twinges, I have not felt any more mobile. It was the first session though, and I think I have quite a few more to come , plus hydrotherapy…so no return to work for a while…hopefully!
My chillow is wonderful. I think I paid just £20, from an E bay shop. It was cheaper to buy 2,and a friend was also desperate to a solution for her hot flushes, so we joined together to order.
I am beginning to have some feeling back ,down my back, but it is very patchy. It has improved a bit though. I remember when the dressings came off, asking my OH to rub Bio oil into the back scar. That was sooooo strange, as I couldn’t feel most of it, and then all of a sudden it would send shivers down my back.
Looking back to those eary days, things have got better, but I still feel I have got a long way to go, and patience is not my strong point!
