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Numbness - forever?

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Re: Numbness - forever?

Hi Ostrich

Yes, I'm well now!! I found the best way for me to cope with chemo was to now dwell on it, not think about 'potential' side effects and just deal with the ones I actually did have!
The worst thing for me (apart from hospitalization for infection twice) was my mouth, which ulcerated really badly each time, and I am so glad it's finished. But it's not the end of the works. In fact it's the beginning of a new one.

Td x

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Re: Numbness - forever?

Hi Lotty,

Arm movement better than it was cos I was stretching etc but have not fully got my movement back cos I am still struggling with my wound (back wound opened up) and this makes me afraid to move too much incase I undo any healing! Catch 22! I was trying massage from the wrist up and that helped too. I am currently trying just to use my arm normally and wait until I have healed fully (now 6 weeks post op and NOT healed) and then work on my arm. I am going away for a week's rehabilitation at the beg of Dec which involves intensive physio so hopefully I will be healed by then and able to concentrate on my strength.

Well done to you for sorting your arm out sooner, xx

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Re: Numbness - forever?

Ostrich
Have just read your original posting on this thread and wondered how the tightness is in your arm? I had really bad tightness maybe 6-8 weeks post surgery and was also worried about the possibility of Lymphodema. I managed to get rid of it completely by my own massaging method!
It worked for me fairly quickly.
First of all I 'walked' my arm up the wall and stayed in the highest position at full stretch for several minutes, massaging with my other hand by grasping my wrist firmly and pulling back towards my armpit as tightly as possible in a sort of sweeping/pulling motion. By doing this you are giving your arm the fullest stretch you can. I was pretty ruthless about it and could feel different parts of my arm releasing with a kind of poppping or cracking. At first I thought something had snapped, but afterwards realised that something had released and it was helping. I also held my affected arm up in the air above my head and held the wrist with the other hand and pulled away from my armpit as hard and long as poss and threw a small hand towel over the top of my bathroom door and held one side with my right and one side with my left arm and pulled down as far as possible with my unaffected arm, so the affected arm was stretched as much as poss. Sometimes I would just hang there for several minutes - pulling as hard as I could in both directions!
I did these exercises religiously night and morning.
The cording didn't disappear over night, but by keeping up my massage and stretching, it went more or less completely over about 4 weeks and now I feel just a slight tightness in my wrist from time to time.
Although I had been told that it would go away eventually, I felt quite pleased that I had managed to speed up the process. Hopefully it will work for you too.
Lotty

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Re: Numbness - forever?

Hi Td,

Thanks for the tip re the chillow, I might try it under the body but I'll have to leave it on the floor and grab it when I need it otherwise there'll be no bed left for hubby as I am already taking up well over my share with my v pillow to help me stay on my side. I wish there was something I could do to stop them in the first place rather than when they happen! I stink, constantly! And as my wound has not healed and now re-opened deep baths are still just a dream and showers something to be done quickly to stop me getting it wet!

I have joined 2 chemo threads so I do have some other ladies to chat with, thanks for your advice, hope you are now well??

xx

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Re: Numbness - forever?

Hey Ostrich - feeling guilty for not having been on for so long to answer your chillow question!!

I found the best thing to do was to put the chillow in a pillow slip, put it flat on the bed long ways down the body and roll onto it when I needed it, which wasn't all night. It then cools between laying ons. I wear pj's so it wasn't too cold.

Hope your chemo is ok. I've just finished mine - I had TAC which was a bugger, but all finished now and I feel SO proud of myself! My hair took about 2 weeks to fall out and I have to wear a little hat (soft velor beenie thing) or a scarf at night to prevent freezing - I've had my chillow under my head only when temp been up - as you say, too cold for that!

I'll try to look in more often! Have you joined a 'chemo' thread - I found this particularly useful - about 7 of us all starting at the same time have kept in touch throughout - very supportive!

Good luck
Td xx

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Re: Numbness - forever?

Hi Maxinebev,

My lumpy side is starting to subside a little. I haven't got round to massaging it. Been a real lazy bones and spending more time on trying to get full arm movement back as have very tight cords under my arm.

I hope your massage helps. My back scar is still not 100% healed and has a bleed once or twice a week from the middle where they had to pull the skin more to get it to join so everytime I do my arm exercises I am worried I am making it worse! Its a catch 22 situation I feel. If, when it finally heals, its still tight then I am hoping massage/physio will help. I am going to use the rehabilitation centre through my job at the beginning of Dec (5 star food, intensive physio and massage, brill!) so hopefully things will have settled with my wound/scar then and any further work can be done.

Glad to hear someone else had a chilly side (if you know what I mean, it does make you feel like you are being hypersensitive when you mention it to others!)

I have my chillow and still cant work out the best way to use it. I tried sleeping with it under my head on Saturday night and it was freezing. I still woke up drenched in sweat from my boobs to my pelvis so maybe I need it under there! Thing is I start chemo tomorrow and worry that when my hair falls out if I sleep on the chillow my body temperature will drop so low I might wake up an ice cube!

Good luck with yours, let me know if you figure out how to get the best results!

xx

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Re: Numbness - forever?

Ostrich

In reply to your questions of 16.10.08. The tightness is mainly along my scar. Have been swimming for first time since surgery in June and hurts to stretch out to do breast stroke. Have asked doc to refer me to a physiotherapist and his reply was "how could this help me?".I explained my back was tight so he said he would do me a referral.(He's never examined my back or new boobs).

Had a massage last week for first time but had to have it sitting in a chair lying forwards.

I too had the chill experience which has now gone. Also my ribs felt funny under the one side. It's great to know other people had same problems as my partner thinks I'm mad!

Have just ordered a chillow pillow. Cant wait.

Maxinebev xx

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Re: Numbness - forever?

Hi Td,

I have my chillow now and suddenly dont know what to do with it!! Do I sleep on it under my head or body? Do I sleep on it all night from when I get in to my already cold bed (brr) or grab it and shove it under my back when I wake up sweating??

Thanks for the advice re armpit/arm - will try that massaging thing!!

Do you, or does anyone else know whether massage helps with clots? Aside from the seroma (which is, day before seeing surgeon, giving me jip in my shoulder) I have thickening/lumpiness/soreness on my side. The surgeon said these are probably clots from my secondary bleed or just post op but that they wont come out with draining but will be re-absorbed over time (months I think he said). Thing is that it is this that causes me the most pain. I am trying to wear a secret support top and occasionally my post surgery top/bra but my side is so swollen with these clots (which I think are actually under the drain holes) that I get a massive dent by the end of the day where the elastic in my tops is pushing against my side. Aside from wearing nothing (which my surgeon doesnt want as he said I should have some support) I can't think what else to do.

My OH said maybe massaging the lumps/clots will help them disperse so I wanted to know if anyone else had any ideas or knows if massage helps?

Should rename this thread - "oooh thats odd following mx and recon - any tips!?" LOL

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Re: Numbness - forever?

I also had the cold thing - it lasted for about 6 weeks post surgery, and as we all say, most odd!
Hope the Chillow worked / helped Ostrich. My sweats are much better, except when I'm in my first chemo week when I seem to have no temperature at all..... but I've just had my LAST chemo and so hopefully it'll get better now....

Re tightness down the arm. this is where the lymph system that has been cut off is packing in and causes the cords that you can see under your arm and sometimes down your arm. We were shown how to massage in little circles from the wrist UP the arm towards the armpit over the tight bits, with the arm elevated (try doing this whilst sitting on the sofa with your affected arm resting on the back - arm gets tired otherwise) - I found this helpful. A sleeve wont help, and wont stop lymphodema either - just helps control it if you get it...

My arm was much more painful in weeks 3-6 post op than initially, but settled down after that. The numbness in my upper arm has only just started to get better - I had my surgery 12th May.

Wine filled seromas......mmmmmm!!!

Td x

dotchas
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Re: Numbness - forever?

Hi Ostrich,

I get that cold feeling too! Wonder what causes it? Its very strangeisn't it?
Maybe thats where all the fluid in our seromas comes from,mine would be white wine and cola!

Dot
x

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Re: Numbness - forever?

Oh how good this site is for not feeling alone!! Hurray I am not the only one who has that cold sensation. I told my OH about it and he said it can't be happening otherwise when the surgeon drains me each week white wine would be coming out not blood! Cheek!!

Let us know what the BCN says on Mon Anne, still trying to stretch my under arm but feels like it will rip horribly, rubbing bio oil onto scar now and upping the arm stretching.

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Re: Numbness - forever?

Hi Ostrich

I had a left mx with immediate diep free tram recon and ax clearance on 23 Sept. My op was 15 hours but I was only in hospital for 6 days! Recovering well at home and starting chemo on 5 Nov - TACT 2 Arm 2 Epi-CMF accelerated.

What a relief to read your post and realise that I am not going mad - I have also had that strange feeling in my chest behind my new boob when I drink anything cold!!
My OH just rolls his eyes and thinks I am imagining it, and I metioned it to my PS yesterday, but he ignored it!
I also have very sore ribs underneath my new boob, but all he said was that they didnt go near my ribs during surgery!

Even though my flabby, post-2-kids tummy was cut out, transplanted to my new boob and the skin stretched together to form a lovely huge smiley scar, the worst thing so far has been my arm. I have been very good with my exercises as I am paranoid about getting lymphodema, but this last week I havent been able to stretch it as much as before. My scar is just under the armpit (I previously had a SNB) and I get this terrible tight, pulling pain under and right down my arm. I was told just to keep up the exercise and phone the BCN about getting a compression sleeve. I will call her on mon and see what she says.

Have a good weekend
Regards
Anne x

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Re: Numbness - forever?

Hope the chillow works for you, and you get a good nights sleep tonight. I know exactly what you mean about the cold drinks - thought it was just me, it feels so weird down my left chest, like its so near the surface somehow!

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Re: Numbness - forever?

My chillow arrived today! In the nick of time as I had yet another terrible sweat in the night. I have decided to write down what I am eating cos this can't be right (4 weeks of 6 nights out of 7 feeling as though I am standing in a shower) and wonder if its related to something I am eating? Looking forward to using my chillow tonight! Even if I can solve this lot of sweats with the food issue I am sure it will come in useful for the induced sweats of chemo/tamoxifen!

I know what you mean Judy re tightness. Every morning and late evening I am in pain/discomfort all down my left side and it almost feels raw inside but also tight. My back scar is beginning to heal and I can feel tightness across it (but not healed enough for bio oil). The other area I am beginning to find tight is under my armpit. My scar is right in my armpit (not just under as my friend's is) and I am finding it increasingly tight (thats probably because I haven't done my exercises as much as I should for fear of upsetting things post my secondary bleed and constant oozing). Am now doing them 3 times a day to try and make up for it.

What do you mean re your ribs being firmly stuck?

Another strange thing I find is that every time I drink something cold I can feel it down my left chest almost like the liquid is going down there behind my new boob and to the bottom of my ribs, not into my tummy where it should do.

I am lucky to have the use of intensive rehabilitation for 2 weeks with my employer and will use it, just can't decide whether it would be more useful now or towards the end of chemo as its nearer London and means staying away for 2 weeks.

Here's to gradual improvement, getting stronger and more flexible and cool nights!!!

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Re: Numbness - forever?

I got a chillow for £17 from ebay...

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Re: Numbness - forever?

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!

ForumMember
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Re: Numbness - forever?

Hi all

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:-

http://www.breastcancercare.org.uk//docs/menopausal_symptoms_jun_2006_0.pdf

I hope you find this helps.

Kind regards
Lucy

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Re: Numbness - forever?

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?

xx

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Re: Numbness - forever?

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!

Shirley

xx

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Re: Numbness - forever?

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!

Td xx

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Re: Numbness - forever?

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?

Take care Ostrich, things will improve slowly.

Max xx

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Re: Numbness - forever?

Hi ladies,

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 🙂

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Re: Numbness - forever?

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!!

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Re: Numbness - forever?

Thanks Rosie will have a look into it, x

rosebud454
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Re: Numbness - forever?

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

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Re: Numbness - forever?

Whats a Chillow waiting angel?

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Re: Numbness - forever?

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.

Td x

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Re: Numbness - forever?

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!!

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Re: Numbness - forever?

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!

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Re: Numbness - forever?

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!

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Re: Numbness - forever?

Hi all,

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.

So yes, in my experience it does get better!

Td x

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Re: Numbness - forever?

Hi Jackie and Ostrich

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.

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Re: Numbness - forever?

Hi ostrich

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.

Jackie.

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Numbness - forever?

Hi,

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.