Pain Control, Cording, Hypersensitivity, Fluid - Single Mastectomy 5wks

mrswjt
mrswjt Member Posts: 5
Hi All
Need support & info with all of the above. I am 5 weeks post surgery and seriously struggling. R mastectomy. Cancer all gone. 3 lymph nodes taken and all clear. No chemo or radio required. 10 days into Tamoxifen. Overall got the best possible result I could so all very happy with that but just struggling post surgery. 

PAIN CONTROL - interested to know what kind of pain control and how long has everyone taken it after surgery. I left hospital with no pain control. They said take Panadol. I felt quite good for first week after surgery just taking the Panadol but been downhill since. 10 days after surgery got script for Tramedo for pain. Still taking that now. When I've woken up and feel ok (maybe 2-3 on pain scale) and think Im good enough to not take the Tramedo by mid-late arvo the pain is up around 7-8. Besides Tramedo only thing for relief is laying on bed with nothing touching my underarm or around all that area. 

CORDING - Physio said I do have mild Cording in my arm. Guitar strings. Seen physio twice now for treatment and will continue. I have complained about tightness all along, only to be told by the professionals and everyone that this is all healing. I knew in my head that it was far too tight to be healing. Man it is like a clamp. Last visit to physios she said I have Cording into my chest (I knew it). I cant believe the tightness. On the days I feel like I can go pain free it is still tight but bearable (until late arvo).

HYPERSENSITIVITY: 5 wks post surgery and I prefer to go bra free or I put soft bra on L side only & leave other side hanging down. Will wear a tighter singlet but also leave one side down if sensitivity is too high. Can hardly stand anything touching the area and without the pain meds it is so much worse. Having said this, the physio has done quite firm massage in the area and I coped with that quite easily. Other day after trying on some singlets when shopping the sensitivity was full on burning feeling. Like raw sunburn. Worse Ive had it. Physio told me to slowly put different material textures and warm and cool over the area in small bursts in order to retrain my brain with the pain signals. I felt sick just listening to her say that and the thought of how I was going to cope with that. Sensitivity is a real 'icky' feeling. Help??

FLUID: I left hospital with the drain removed. Surgery about 1pm, drain removed 10am next day. No round ball like Seroma but did have fluid and the pain & tears to go with it. Drained 20mls day 4, 60mls day 7 then 30mls day 10. Nothing drained since & surgeon checked this around 3wks. Wonder if the ongoing pain and tightness is actually fluid. Having said this, I am very thingy about having it drained re: needle inserted = more scar tissue + possible infection. But if it meant the pain & sensitivity would go then I'd do it. How long after surgery have any of you ladies had fluid syringed? Anybody got anything to say about all this?

Can anyone offer anything on all or any of the above? Will it get better? How long? I know it takes time and everyone's different. But that's all I ever hear. 5 weeks post surgery seems like a reasonable amount of time for the pain to have lessened - or am I still just impatient. And some of pamphlets you read say you may be able to go back to work after week 4 - Ive got no chance of coping with work especially as I work at a computer and sitting makes the tightness completely clamp up. I am going to have to go and stretch now after typing all this. BTW: I have good arm range and movement. Cant just fling my arm in the air willy nilly but I can get it above my head slowly even though it pulls. I am strict with my stretches and rehab. 

Help :(

PS: Sorry for the long drawn out saga .... but I've really never felt so alone in all my life and feeling like 'this is it' for me, I'm stuck on pain meds forever.
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Comments

  • Romla
    Romla Member Posts: 2,092
    I can’t help a lot sorry but have you got the little pillow that goes over your shoulder and protects the scar from weight of your arm esp when sleeping ? Also I was uncomfortable after surgery with my Target post op bra for months and swirtched to an aah bra and the difference has been amazing - so comfortable no seams.They are odd in that you step into them and pull them up , and not particularly attractive .Variations on this product are available Target , Best and Less , KMart -I bought mine online - they are cheap too.I think some stores call them sports bras. 
  • mrswjt
    mrswjt Member Posts: 5
    Thx for the bra tip Romla. I will look into the aah bra and try it out. If I could get a one sided bra, I'd go flat on the R if it meant pain free. I do have the little pillow which I used after surgery and found it irritated me then. That was early days so will give it another go and see if anything's changed. Again, thx for your help.
  • Zoffiel
    Zoffiel Member Posts: 3,374
    Hey @mrswjt 


    All this sounds very familiar to me. I had a double mastectomy with imp!ant reconstruction in 2006 and .had a recurrence in my armpit in 2016. 

    I'd like to give you a positive story but, unfortunately, some of us just don't deal well with the assault of surgery. I've had enough cords to restring an orchestra, have had monster scarring episodes and leak like a cabinet room in federal Parliament.

    After years of this stuff, where I have been told I heal too quickly, too slowly, I've not stretched enough, I've over done it, I should rest,  I should exercise more...I've decided I'm just plain irritable.  I don't suffer from allergies or any underlying condition, I just have a shitty response to having bits of my body removed. I would also like to see some research into the correlation between excessive fluid in wounds and conditions like cording.

    Part of the problem is that there is very little information given about long term negative side effects of surgery. What you are told is all very generic.its a bit like information about post natal depression back in the 80s. ' We don't want to make anyone anxious, so we don't talk about it's. FFS
    .
    So, what to do. You are only five weeks into this and it is a big operation. All that ferretting around under your arm causes more issues than losing a boob. In my opinion anyway. Exercise helps, but if you need pain meds, take them.

    I take a tramadol in the morning. My deal with myself is that if I take the pill, I have to get up and go for a walk. 5 km. I have Panadol in the afternoon and Lyrica in the evening--which cuts the nerve pain and helps me sleep
    I stretch and bend, some days that is no fun at all.

    You need to get a lymphoedema/breast specialist physio onto that cording. Not a pleasant process, but productive.

    If you are not seeing a counselor, get  your GP to write you up a mental health plan and start shopping around for one who suits you. This is an aspect of our health we tend to forget. Get an expert on board because the whole process is very stressful and tests you to your limits. Marg xxx


  • Afraser
    Afraser Member Posts: 4,450
    I too can't help on a number of those issues - I had no pain post mastectomy and axillary clearance (17 nodes) although I am beginning to think I was in the minority. I also didn't have cording but did get lymphoedema - I tend to think a good specialist lymphoedema therapist may be worth consulting. A seroma may not be painful - I had a huge one (first draining was 1.5 litres) which was spread over a wide deep area and didn't hurt at all. It did slosh when I bent over though!! Draining shouldn't scar but may introduce infection so it may still be best to see if the fluid will disperse naturally. Also mine simply refilled within a week or so, which meant relief was very temporary. The problem is compounded by the natural bacteria you have, even in a healthy body, that can find this kind of nutritious "soup" irresistible and infection can result, without any external stimuli. Damned if you do and maybe damned if you don't!  A lymphoedema therapist may be able to encourage the seroma to disperse by massage. Best of luck. 
  • mrswjt
    mrswjt Member Posts: 5
    @Zoffiel
    Thx Zoffiel for your response. Firstly let me say I got a smile coz you used FFS. That is my favourite saying. lol. Other than that the physio I am seeing is a Lymphoedma specialist and so far the treatment has been quite bearable and she has done firm work. No treatment yet on chest cords as too early. Havent heard or felt any popping yet (I dont think). And I agree with you so far about the ferretting under the arm. I walk my dog 2-3 times a day, only once on a bad day. Have seen a physcologist and a counselor a few times. Will continue with that but it seems too much about mindfulness and all that sort of stuff and just dont think thats me. Get more relaxation and peacefulness from walking my dog and smelling my roses at the front fence as I walk past. Anyway.... 
    Thx again Marg 

    @Afraser
    Thx for your reply too. I am very happy for you and glad you had no pain. I am onto the correct physio for treatment. Also found with having fluid drained early on that it came back. At this stage wont be getting any more drained and will try and move it with the massage and exercise and hope like hell my body figures it out soon on how to shift it better itself.
    xx
  • Sister
    Sister Member Posts: 4,961
    I was still taking Panadol 5 weeks after - just not as often.  Always sleeping with the pillow.  Doing my exercises regularly as best I could.  Only wearing a bra when I absolutely had to.  Even with the ah bra type, if I wore it more than a couple of hours, I would be in pain (and I used padded dressings tucked down the side where the scar and worst of the neuropathy was.  
  • mrswjt
    mrswjt Member Posts: 5
    @Sister What date was your mastectomy? I also see Kollias. How are you travelling now with the pain? 
    Thx for the response & good luck with recovery.
  • Sister
    Sister Member Posts: 4,961
    I had the first surgery on 22/12 (I think) and then the mastectomy on 8/1.  I still get muscle pulling and I'm doing my stretches and I still don't wear a bra unless I have to.  Numbness is still there and apparently, I have some cording.  However, chemo has taken over my full attention over the last couple of weeks so cording issues are going to have to wait.  No real pain, now though.
  • Brenda5
    Brenda5 Member Posts: 2,423
    Two years on, my cording comes and goes as does my lymphedema. I take Panadol as required. Five weeks isn't very long at all but get in to the habit of self massage as it can help a lot. It sounds like nerve damage you have and those things can take a long time to re-route themselves and heal. You seem to be getting all the treatment and meds you need. Just hang in there. <3 
  • mrswjt
    mrswjt Member Posts: 5
    @Sister
    Good luck with chemo.

    @Brenda5
    Thanks for the encouragement. Trying to keep in mind that 5 wks is still early days and trying to be positive that I'll turn a corner soon. Cheers 
  • Mollygirl
    Mollygirl Member Posts: 213
    @mrswjt, I saw an OT for my cording and she used a laser on it. She would also massage the hell out of it which felt fantastic. It remained all through chemo it now I'm 10 months down the track it is a lot better and movement is pretty near normal. 
    Makes sure you are super diligent with your exercises. Touch the area as often as you can stand. Use you shower head on it to stimulate the area. Nerves get messed around with when you get nodes removed and unfortunately nerves are notoriously slow to heal. Biggest hugs to you Honey. Xxx