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Tightness around chest after bi lateral mastectomy ??

55 REPLIES 55
ali76
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi I'm new to this forum,

I was diagnosed in October 21 with TNBC grade 3, I had 5mths of chemotherapy then a bilateral mastectomy on the 11th May 2022. I must admit the tightness around the chest was the worst. But now 4mth on the tightness has completely disappeared. I still have down days where I'm constantly checking for new lumps worrying the cancer is going to come back. What I wasn't prepared for after my surgery was the nerve pains feels like electric shocks and the 1st time I had them I was worried. 

I'm now back in work and doing ok, praying it continues.  Love and best wishes to all xx

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Really? Exercise worked? How are you now? Did swimming help? Thanks. 

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hello, I know this is an old thread but has the tightness gone away?

Annie63
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail

When I read your post it made me think of a quote in the film “Shirley Valentine”, Costas says something about loving your scars, they show you’ve survived… that you are alive. I was pleased to see Jaybro shared similar sentiments. 
I do hope you come to accept, maybe not love, your body again. It’s got you here and you have more life to live. 
Good luck

Annie 💕

Jaybro
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail

I’m sorry to hear you feel so badly about your body. You are going to have to keep adapting I’m afraid - unless you are offered reconstruction or can afford corrective cosmetic surgery - because it is cosmetic now.

A BCN told me in exasperation (at the breast surgeon, not me) that a lot of the problem is because they perform the surgery with the patient not only flat on her back but with the arm raised. This stretches the skin but makes clean surgery with clear margins easer. The problem is, when the patient sits up again, the skin relaxes into its natural state, leaving many of us with what they call ‘dog ears’ - small bunches of flesh at each end of the scar - and wonky scars, especially if you’ve had FAC. I’m actually quite lucky - the central dog ear is so well-placed that it gives me a deceptive cleavage, handy with some garments. 

I was very squeamish about looking at my scar, let alone touching it, for a few weeks and then decided I had to learn to live with it. I now actually forget about it in a pool changing room - and I’m not going to hide away in a cubicle (if one were available) for fear of distressing anyone - this is a harsh fact of life people should accept. I have yet to notice anyone looking at me. I now refuse to wear my fortress bras and prosthesis - why should I suffer for fear of what people will think? I’ve got one boob, so what? I’ve got to the point where I can walk through a restaurant or whatever and only remember once I’m outside that I’m lopsided.

It will be hard but keep reminding yourself that that scar has saved your life. Keep pampering it, get to know how it all feels in case anything ever changes and reflect a bit. What is an ugly scar compared to life?? Sorry if that sounds preachy but it does get easier until you almost forget about it. Enjoy the Qi gong and yoga xx

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Thanks Annie. I’m doing an exercise class at Maggie’s and am going to go to their Qigong and yoga too. I’ve seen the physio and breast nurse but they’re very non-commital - although lovely. 
The other thing I’m finding hard is looking at myself. I find the scars far worse than I’d been led to expect but and I do the twice daily massage it’s hard. Maybe this is quite normal but mine do seem excessively disfiguring with bumps and folds all over the place. Like a badly drawn contour map. 
Good luck with the bone scan.

Gail

 

Annie63
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail

Really sorry to hear how distressing the tight band across your chest is. Can you get in touch with your breast care team to tell them how you’re feeling?

Apart from the BCN physio exercises I’ve also started to do yoga stretches. It’s hard to tell whether tightness is reducing or I’m habituating to it but I do think it has improved a little. When I had my fitting for the NHS breast form nurse said tightness would continue to reduce. Sadly nobody knows how long it’ll take.

Bone scan results are in another couple of weeks. It was to give me a baseline for bine density and to know if I need to take calcium and vitamin d. 
Take care of yourself and do contact your team for more help, don’t be left alone with so much discomfort.

Annie 💕

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hello Annie,

How are you doing? I still have an unbearably tight band across my chest which I swear I'll tear out if nothing happens to improve it! Exercises aren't specific enough and I can't find anything on google - unless you count the threat of it being permanent...

How did your bone scan go?

Gail

Annie63
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail
I agree never through I’d be on a cancer forum! I’m on anastrozole for 5 years. Booked in for a baseline bone scan early next month.
It’s dawned on me too that we’re in it for the long haul. Some friends are surprised how much healing I’ve still to go and I suspect from other posts we are forever changed and will need to find ways to minimise the tightness etc. 

Take it slow and steady.

Annie x

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hello,  thanks for your reply. Gosh that’s not very good news. I’ll go nuts if I have live with this tightness! I’d be interested to know how you get on with swimming - the physio told me it was the best exercise. I’ll do it - but don’t look forward to it. Also I was told not to until my wound has completely healed. I’m aged so it may take longer!
Gail

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hello Annie, thank you for your reply. Yes I have a small “breast” (seratoma) under each arm but I’m told my body will re absorb them in time.

I think one of the difficult things to get used to is how long everything takes - the wound to heal and now this wretched tightness. It’s also beginning to become very clear I’m in for the long haul. 

May I ask what treatment you’re on? The cancer I had was oestrogen fed and I don’t need chemo because they got it but will have radiotherapy and I’m on Letrizol for 10 years. They’ve offered me bone infusions which I’m dithering about but after talking to a nurse friend may change my mind. 

I never wanted to have so many conversations about cancer! I hate that I have this need to know, but the doctors, quite rightly, leave the final decisions to us so we’re forced to focus on it more than is good for us! And it’s a lot to process. 

Thanks again for your reply. 
Gail

Annie63
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail, 

I had my mastectomy the day after your surgery. I’m very lucky as only on hormone treatment for 5 years now no chemo or radiotherapy needed. You might be right that I’m habituating to the tightness rather than it improving, who knows we’re all learning everyday. I thought I’d go back to swimming in due course too but only in the small pool so I can stand if I need to. Sorry to hear you feel you look a fright. I had a female surgeon and who has left me with a very neat scar. I hope you feel more comfortable with the scars soon as they continue to heal. I’ve still got some seroma in my armpit so good to hear it’ll be reabsorbed. I still feel it is all surreal having had my cancer picked up by a routine mammogram.

Look after yourself.

Annie 💕

Jaybro
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail

Sorry to be discouraging but I had my mastectomy and FAC in 2018 and I still need to massage my scar area daily as it tightens very easily. Nor did my seroma go away. It’s still there, making my numbed upper arm feel like there’s a thick paperback between arm and body! I did my exercises faithfully for months but I’m lax nowadays. Swimming definitely does help but it will be breast stroke for a while! I hope you’re luckier but it won’t just magically go away, I’m afraid. It needs constant nurturing xx

 

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

This is an old thread but I’m curious to know if this tightness ever went away? I’ve had it for 5 weeks and it feels so permanent. 

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hello Annie,

Thank you so much for your reply. I had the bilateral mastectomy on 14th June, so around the same time as you.

I don’t feel as though the feeling of tightness has improved, merely that I’ve got used to it.  I too do the exercises religiously and will start swimming when it’s safe (but after radiotherapy), because the physio said it’s the best exercise, not because I want to!

I went to the hospital yesterday and saw the surgeon who said I was healing OK, just small seratomas in the area under my arm which will get absorbed back into my body in time. She told me not to massage where the wounds are until they’ve completely healed but I can do it above and below. 

I don’t know about you but I look a fright - I can’t believe it when I look in the mirror. I look as though I’ve been attacked by sharks. 

Thanks again for getting in touch, it’s very nice to be in touch with someone who knows what it’s like. 

Gail

Annie63
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Gail

The physio exercises I have been doing are the Breast Care Now physio exercises. I imagine they are this site but I got mine from my breast care nurse. I had a single mastectomy 5 weeks ago today and have been doing the exercises religiously and also massaging with scar oil. I still have a tight sensation but I think it’s easing. If you can’t find the exercises ask the BCN nurses on this forum.

Good luck

Annie

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

You prob won’t see this as it’s such an old thread but in case you do could you please send me the exercises? Thanks so much. 
Gail

Josie16
Member

Re: Tightness around chest after bi lateral mastectomy ??

I had a single mastectomy in February 2018. I noted that the scar itself appeared very tight, however I felt as though there was a tight band all the way around my chest. I likened it to feeling as though I was wearing a bra that was way too tight, all the time. I slept propped up on 5 pillows because I couldn't lie down and breathe at the same time. I couldn't lean back in my chair because then I couldn't breathe. Doctors and nurses appeared to have no idea what was happening. This went on for 3 months. I thought to myself, this is impossible - they only cut my breast and removed lymph nodes from the same side armpit. They didn't touch the other side or my back, so what could be happening? Then it occurred to me that when you get appendicitis, the pain is initially in the centre of the stomach, near the navel; my brother was diagnosed with heart disease from a pain in his shoulder!! So, I thought, it's my brain that's causing the problem, identifying the tightness of my new scar with something it was already familiar with - a too tight bra. So, the problem could only be solved by convincing my brain that the tightness was only in the scar and not all the way around. I did that by telling myself (my brain) that it was wrong and only the scar was tight. I did this many, many times and reduced my number of pillows by one every couple of nights. Within 2 weeks, the tight bra sensation was gone and has not returned.

oldgirl
Member

Re: Tightness around chest after bi lateral mastectomy ??

Does anyone have anything new to add? I had a bilateral mastectomy a month ago and am I great discomfort from a tight band across my chest. Nobody can seem to help, apart from telling me to continue doing the exercises, which I’ve been doing ever day since I had the op. There has been no improvement. I take paracetamol but it doesn’t seem to help. Help!

ksrourke
Member

Re: Tightness around chest after bi lateral mastectomy ??

How long did this last for you?

im 2 weeks post DMX   

im getting DIEP FLAP in Jan. 
I pray this feeling goes away 

thx!

kari xx

Josie16
Member

Re: Tightness around chest after bi lateral mastectomy ??

I had a single mastectomy in February 2018. I noted that the scar itself appeared very tight, however I felt as though there was a tight band all the way around my chest. I likened it to feeling as though I was wearing a bra that was way too tight, all the time. I slept propped up on 5 pillows because I couldn't lie down and breathe at the same time. I couldn't lean back in my chair because then I couldn't breathe. Doctors and nurses appeared to have no idea what was happening. This went on for 3 months. I thought to myself, this is impossible - they only cut my breast and removed lymph nodes from the same side armpit. They didn't touch the other side or my back, so what could be happening? Then it occurred to me that when you get appendicitis, the pain is initially in the centre of the stomach, near the navel; my brother was diagnosed with heart disease from a pain in his shoulder!! So, I thought, it's my brain that's causing the problem, identifying the tightness of my new scar with something it was already familiar with - a too tight bra. So, the problem could only be solved by convincing my brain that the tightness was only in the scar and not all the way around. I did that by telling myself (my brain) that it was wrong and only the scar was tight. I did this many, many times and reduced my number of pillows by one every couple of nights. Within 2 weeks, the tight bra sensation was gone and has not returned.

LIsaGay
Member

Re: Are you happy with your reconstruction?

Yes Lisa, am unhappy with outcome as well after DMX and 7 recons with two infections as well

LIsaGay
Member

Re: Tightness around chest after bi lateral mastectomy ??

Thank you! I have had a dmx nipple sparring with 7 recons and two sepsis from hospital, I worked the whole time and am wanting to downsize, I wanted to 16 months ago when original surgery was. I too have a terrible tight band around chest and it gets more painful with exercise of arms and am quite "bitchy" sorry but its true. Does anyone know if smaller implants will help? The foobs are uneven so I always wear a bralette

Pauline Moore
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi can I please ask where you buy these from and how you use them 

Many thanks 

Pauline x

Nicki121
Member

Re: Tightness around chest after bi lateral mastectomy ??

I have this awful tightness too after 4 weeks post bilateral mastectomy with expander implants which were filled with 300ml while in theatre.  I still have lots of bruising and by the evening when I feel at my worse I feel like I want to concave and cannot straighten up.  I also have fluid retention to the sides of each breast and it is very painful and constantly sore and I get sharp, probing needle like pains now and again. I had fluid drained from my right side 10 days ago under ultra sound but think i may need this draining again.  Left side the fluid is soft but my right side it's firm. I worry about introducing infection by having this done again.  I take so many pain killers, as advised by the medics and sleep inducing drugs at night -I must rattle!

 

It's difficult to know what to do about any concerns.  I don't feel I want to bombard the BCN unnecessarily if what i'm experiencing is normal.  My next appointment is not until mid March for expander saline top-up and I feel that there is too long a gap without being monitored after the initial 2 week follow up.

 

There is a really good network of support groups 'Keeping Abreast' held in various towns and I went along to a couple before my operation.  My nearest is held at the Lister hospital.  It is for ladies who have had or are awaiting mastectomy and reconstruction. Unfortunately I wasn't able to make the January meet and the next one is not until March.  

 

Nicki

llclis
Member

Re: Tightness around chest after bi lateral mastectomy ??

I have had that same exact feeling for 2 years now, strongly considering a new surgery, pre-pectoral, and smaller implants (the latter was my choice from the beginning, but the surgeon decided otherwise.)


@ConstanceMarie wrote:

I had a double mastectomy with implants, had an implant removed due to infection but ever since my double mastectomy almost five months ago I’ve had a tight constant pressure and cinched in feeling where I don’t want to take a deep breath or stand up straight. I feel like I have. Blood pressure machine pump inflated and on my chest with constant pressure.  I have told my doctors about this and they speak as though they’ve never heard of this and it’s nothing and will go away.  But it doesn’t.  What can I do?


 

Wiggleworm1123
Member

Re: Tightness around chest after bi lateral mastectomy ??

Has it gotten any better. I wish the doctor would have warned me about this being a side effect. I did this profalaticly and if i knew i would feel this i may not have done this . Any advice. Its driving me crazy 

Wiggleworm1123
Member

Re: Tightness around chest after bi lateral mastectomy ??

 I had a double mastecomy  9 days ago and have the exact  same feeling. It is driving me nuts. Will it ever go away? Has your feeling gotten any better yet ?

ConstanceMarie
Member

Re: Tightness around chest after bi lateral mastectomy ??

I had a double mastectomy with implants, had an implant removed due to infection but ever since my double mastectomy almost five months ago I’ve had a tight constant pressure and cinched in feeling where I don’t want to take a deep breath or stand up straight. I feel like I have. Blood pressure machine pump inflated and on my chest with constant pressure.  I have told my doctors about this and they speak as though they’ve never heard of this and it’s nothing and will go away.  But it doesn’t.  What can I do?

Premmious
Member

Re: Are you happy with your reconstruction?

I had a radical mastectomy done Sept 2016, followed by reconstruction.  I have had nothing but pain and problems.  I have had a total of 8 surgeries, replacement of the exspander, removal of the expander and breast implant placement.  It was replaced a second time, I developed large amounts of scar tissue, that was cut away and finally leaving the implant out.  However, I developed chronic seroma that had to be constantly drained.  I have so much pain to my left chest, left armpit and also scapula region. Its been over 2 years.

Jay68
Community Champion

Re: Tightness around chest after bi lateral mastectomy ??

I had a bilateral mastectomy last September and I still get the tightness in the chest and under arm.

First thing in the morning and later in the evening are the worse times for me.

Exercise really does help together with daily moisturising the areas with E45.

No short term answer - on researching it would appear it can go on for 3/5 years.... x
Loolarch
Member

Re: Tightness around chest after bi lateral mastectomy ??

I too had a had bilateral mastectomy about ten weeks ago, and would recommend you try and get some more physiotherapy? I am still having regular sessions, and it does help a lot as she massages the scars which definitely reduces the tightness. I am massaging them myself using bio oil, but I don't think that helps as much. I also do the recommended exercises at least three times a day, I find first thing in the morning my chest scars feel pretty tight but stretching e.g by raising my arms as high as they can go, reduces the tightness. 

 

I wonder how how long other people carry on with the exercises post mastectomy? Any advice from anyone?

Uncle Sonny
Member

Re: Tightness around chest after bi lateral mastectomy ??

I am two months post bilateral mastectomy.  Tightness in chest and underarm area is quite severe and very uncomfortable.  Had physical therapy which did wonders for my arm but did not help the tight feeling.  Wish I had better news and would appreciate any info on this.  Oh, I had previously had radiation on the same Breast albeit 19 years ago.

Uncle Sonny
Member

Re: Tightness around chest after bi lateral mastectomy ??

I am two months post bilateral mastectomy.  Tightness in chest and underarm area is quite severe and very uncomfortable.  Had physical therapy which did wonders for my arm but did not help the tight feeling.

lisad
Member

Re: Are you happy with your reconstruction?

Hello Sandra

 

Thank you for your reply.

 

I had my original implant removed and had a more natural implant inserted on 5th June (not an expander as per original implant)

 

Very smooth op, no pain only tenderness, final stitches out this Friday.

 

So far, I am glad I took that desicion to have it done, more natural look although my other boob probably needs a lift now, but that can be sorted out with bras  .Smiley Very Happy  Only time will tell I guess if all OK and do not get any infection for it to be rejected.

 

Kind regards

 

Lisa

 

Sarnies
Member

Re: Are you happy with your reconstruction?

Hi Lisa, 

Just seen your question, what did you opt for in the end?.

I had the expander in 2015 however a week later it rejected leaving no option but to remove it leaving a hefty hole which took 3 months to heal. 

I have no intention of having another implant. But life as a solo boober isn't as bad as what some may think. I know age and size of boobage is a factor. 

Hope all is well. 

Sandra

lisad
Member

Are you happy with your reconstruction?

Hello All

 

I had a mastectomy in July 2016 followed by an immediate reconstruction of a BECKER™ Expander/Breast Implant, however, after finishing chemo and radiation my implant is hard and uncomfortable.

 

I have discussed this with my breast cons. over the months and due to have symptoms of a Capsular contracture http://www.aurora-clinics.co.uk/breast/capsular-contracture-after-breast-enlargement-what-is-it-and-...  my cons. is going to do a reconstruction putting in a more natural implant in the next month.  

 

My only concern is that should an infection occur than the implant would be removed and I would have no breast until a time when using my own tissue could be implanted. So should I have it done or just put up with it as it is?

 

Has anyone else had issues with their reconstruction and had it redone.

 

Would really appreciate feedback, thank you

 

Lisa

 

Nuthatch
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Loubylou
Interested to hear about silicone gel sheets. I don’t know anything about them and how they work? My tightness is still there, and not getting any better really. I’m seeing physio regularly and she does soft tissue massage which has relieved the top most layer I think. But the tightness is much deeper in, not just on the surface. I found out about deep friction massage but that sounds quite aggressive - with suction and pummelling by a small gadget! Too risky for my ribs apparently. Am being referred back to my oncologist now. Will let you know what I find out there. I suspect he’s going to say, again, that I must wait patiently for it to improve. But info about the silicone sheets would be good if you have a minute. x
Loubylou
Member

Re: Tightness around chest after bi lateral mastectomy ??

I have found silicone gel sheets have helped enormously in softening the scar area. They are around £15 each but you only need one per breast as you wash them each day. They make any lingerie more comfortable , can be barely seen and help with the scaring. I have had my reconstruction reconstructed due to capsular contracture thereby scar tissue on scar tissue. Hope this helps. 

Nuthatch
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hello August13
I’m not sure if you still look at these pages, but I’m trying to find ways of relieving the tightness across my chest (double mastectomy October 2017) and tightness of scar. I saw that you had some info that might help and wonder if you still have access to it and could direct me? I’m have radiotherapy at the moment so can’t do any massaging, but could hopefully do exercises to relieve the very tight feeling. Haven’t been able to see the physio still as the appointment was cancelled due to her cold, so it’s been a long wait for guidance!

How is your tight band now? Hope you are feeling strong now.

Thank you x
lolly73
Member

Re: Tightness around chest after bi lateral mastectomy ??

Yes please August13, info would b great x

August13
Member

Re: Tightness around chest after bi lateral mastectomy ??

I had the same after single mastectomy without recon. Physio taught me exercises which really helped.
To break up the adhesions that I had.
Can send info on next post if you like
Kess
Member

Re: Tightness around chest after bi lateral mastectomy ??

I am now just over a year since mx (no recon) not quite a year post rads. It has taken time, but the tightness is pretty much gone (I still go the exercises most days). It's still not wholly comfortable to lie on my left side, but it's certainly better than it was, and I can sleep on it for a while before I have to roll off it. I know some people are really unlucky and never stop having pain. That is not often the case though,
1852
Member

Re: Tightness around chest after bi lateral mastectomy ??

I had mastectomy aug14 had a lot of probe with seroma  non boob still tight and swollen dr says its haematoma can't be drained last time they tried got 30mls and didn't make me ch difference to constant discomfort  only option now open scar and clear out blood but no guarantee it won't come back so dr reluctant to operate gets me down at times then I get cross with myself because there are people a lot worse off . I use brufen gel but it's very sticky and sometimes my non boob feels itchy so then I just moisturise best wishes to all DEN

waveylocks
Member

Re: Tightness around chest after bi lateral mastectomy ??

Im a bit late joining in on this thread but just wanted to say that I had a single masectomy last April and I too have the tight band feeling.  i also get a sensation of someone lifting me under the arm!  the Physio told me it was scar tissue and that the best thing I can do is to keep the exercises going daily.

The door jamb one where you stand side ways on with arm stretch out onto door and then slowly turn away until it is stretched -hold for a minute - i find really good at relieveing the tightness but you have to do it several times plus several times a day until it has relaxed then keep topping it up daily. When I do them am much better I must admit!  However been away for  three weeks and didnt do them and the tightness is back.  Lesson learnt.  For the feeling of something under my arm he told to lay down and do a corkscrew twist with affected arm out streched -really works. Am hoping that in time it will heal and stop happening and I wont have to ekep doing the exercises....

I do wish they warned you beforehand as i had no idea this was likely to happen. 

ditzy65
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Rosie

 

I had implants and could have them straight away as I opted for smaller boobs, I was quite large before

and hated them so now have small ones. 2 tumours in my right breast and left remved too as family histor.

 

I really felt like I would never get any better, but things do improve and I am getting used to them slowly..I just realised last night that i have forgotten what my nipples look like as i don't have any now...I don't miss

them and don't think I will have tattoos...but it was realising that I can't remembe when i did have them...I'm sure that doesn't make much sense lol.

 

Use bio oil on your scars if you can

takr care xx

rosie14
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi ditsy65 what sort of reconstruction did you have??
ditzy65
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Ladies

 

I had my db masectomy last October with immeadiate recon, and I thought the tightness would

never go away. I wear a bra all the time at night too as I feel it gives me support!!!!

 

The tightness does go away gradually, it does take time but it will improve

 

Wishing you all the best xx

rosie14
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Lolly July 14 must have been a bad month!!! I live in Cyprus so things are rather different! Every time I went to see my surgeon I told him about the tightness and he just said it would get easier in time!!! Not yet!!! I hope your nurse is wrong too! Keep,in touch good to find someone that understands the awful feeling!🙀
lolly73
Member

Re: Tightness around chest after bi lateral mastectomy ??

Hi Rosie, looks like our mx was the same time then, July 14.  Have you asked ur nurse about this tightness? U r right, it is a bit like a bp machine feeling!  I hope my nurse is wrong in that it may never go now.....