Extreme pain after 2 week post op exercises for BMX

Options
Summer2016
Summer2016 Member Posts: 135
edited September 2016 in Surgery - Before, During, and After

I had a BMX on 9/14/16. Felt great when I returned home 9/15/16 for the first 3 days. I was given pain meds that lasted a little over one week when taken as prescribed. Began using Tylenol extra strength OTC during the day with pain med at night as soon as my drains were removed (one week after surgery). First week of post op exercise was painful yet manageable along with walking outside for 10 to 15 minutes. However when I began second week post op exercise, 2 hours afterwards I was in extreme pain and cried all night. I am disappointed that my surgeon and nurse both told me on the day my drains were removed that I should be on OTC only now when I am experiencing extreme pain. I feel angry that No One ever discussed managing pain with me other than to say that I should be on OTC after the first week. There is no way I can perform post op exercises without prescribed pain meds. I see others have been ok on OTC which makes me worry that something must be wrong. I have recovered from 2 broken feet at different times taking few pain meds and throwing out the rest of the bottles and using OTC mainly. Have always been told I have a high pain tolerance which is making me feel all the more that perhaps something is wrong when ice, heat, OTC and rest are not working. I want to be able to perform my post op exercises to prevent problems. Should I be on OTC only at this point?


IDC surgery pathology: Left side clear,  Right side tumor 1.3cm, luminal B, grade 2, stage 1A, ER+PR+Her2-, BMX 9/14/16, No family history of BC.

· Share on FacebookShare on Twitter

Comments

  • muska
    muska Member Posts: 1,195
    edited September 2016

    Hi Summer, I am very sorry to hear about the pain you are having. What post-op exercises are you doing? Have you called the nurse to discuss the pain you have during these exercises?

    I was on Tylenol only from day 1 and don't remember being in much pain. However, I don't remember doing any serious upper body exercise during the first month.

    · Share on FacebookShare on Twitter
  • AnotherMichelle
    AnotherMichelle Member Posts: 39
    edited September 2016

    Summer2016, I am bungling along this process at the same time as you although I had a lumpectomy and two axillary surgeries. The pain a week after both axillary surgeries has been brutal. It's still not gone three weeks after the most recent surgery. As far as I've read, most people say it's nerve pain (the nerves regenerating or the nerves having been damaged--mixed theories) and that most pain relievers won't help, including Oxy. My surgeon didn't warn me, either, and when I asked her about the pain at my second post-op appointment, she said to gently massage it (which I've read on a couple other posts here at BCO, too). I am not a big fan of this because IT HURTS TO TOUCH. But I'm trying it. I'm seeing a PT/Lymphedema specialist in a week, and I'm going to ask what I can do about the pain.

    I hope you get some relief! I'll be thinking of you.

    Kelli

    · Share on FacebookShare on Twitter
  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2016

    Hi Summer2016:

    Did you have reconstruction? Even without reconstruction, bilateral mastectomy with sentinel node biopsy ("SNB") can sometimes lead to arm, shoulder, and other issues that cause pain. I recommend that you contact the office of your breast surgeon to report your pain symptoms and request an evaluation and/or appropriate referrals (e.g., qualified lymphedema therapist/physical therapist).

    Be sure to tell them that some exercises are causing you severe and lasting pain, and ask if it may be better to dial back each exercise to the point of gentle stretch with no pulling or pain, and/or reducing the number of repetitions, or even skipping certain exercises (doing only what you can do until you can be evaluated).

    I had no reconstruction, but I could not raise my arms even to shoulder height. I simply could not do some exercises. I was advised that if my range of motion did not return within three weeks, to seek a referral for physical therapy. Because of range of motion problems (both sides), possible frozen shoulder (left side), and axillary cording (both sides), I obtained a referral to a physical therapist (PT) who was also a certified lymphedema therapist (CLT) with experience treating breast cancer patients (PT, CLT-LANA).

    Here is some very general information about possible causes of pain, not in any order:

    (a) Lymphedema:

    As you may know, lymphedema can occur following surgery and/or node removal due to disruption of lymph channels. Excess fluid (lymph) can collect in tissues causing edema (swelling). This can also cause pain and heaviness in the arm or other affected site.

    Lymphedema can occur in some cases following SNB. The risk of lymphedema is a life-long risk (it may appear any time, even years later), and once it appears, it is a life-long condition. It should be treated as soon as possible to bring it under control, because it can be progressive.

    For some basic introduction to the risk of developing lymphedema and the condition itself, please see this site. There is also information on self-care and risk reduction steps that you can take to try to avoid or control it.

    http://www.stepup-speakout.org

    The site recommends limiting stretch to the axilla (underarm) in the post-surgical period. (Interestingly, I did not receive that advice from my surgeon, but for me it was a moot point as I could not even raise them to shoulder height.)

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    "Limit your arm movement to shoulder height for the first 10-14 days post-op to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration."

    It is a good idea to obtain a referral to a certified lymphedema therapist ("CLT") for a baseline evaluation either before surgery or shortly after, including baseline arm measurements. A therapist can also provide guidance about self-care, appropriate preventive measures, and safe approaches to exercise. Here is some information about how to find one, or your breast surgeon may be able to refer you to one:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    (b) Cording or Axillary Web Syndrome

    "Cording" can also cause arm pain. In my case, it severely limited range of motion. I also experienced pain when moving or extending my arm, but not at rest. The pain was along the inside of my underarm, elbow and wrist. Often, you can clearly see a "cord". Here is some information about it:

    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    (c) Frozen shoulder or other shoulder problems

    Frozen shoulder can occur after breast surgery, causing pain and restricting range of motion. Some shoulder problems can lead to pain in the medial upper arm (outer side). I had this on one side, and physical therapy was very beneficial.

    (d) Post-mastectomy Pain Syndrome ("PMPS") or nerve-related issues

    As noted by others, nerves are impacted by surgery, which can lead to pain problems. For example, with PMPS, pain is typically localized to the anterior/lateral chest wall, axilla, and/or medial upper arm according to this information:

    http://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-postmastectomy-pain-syndrome

    (e) Scar tissue or adhesions

    These may cause pain along the scar line, chest, and underarm area. A physical therapist may use techniques such as gentle massage of the scar area or myofascial release methods.

    There may be other causes of pain, so it is best to check in with your breast surgeon, find out what is going on, and obtain treatment.

    BarredOwl

    · Share on FacebookShare on Twitter
  • Summer2016
    Summer2016 Member Posts: 135
    edited September 2016

    Thank you, BarredOwl for all the informational links as this is a huge help! After reading more about Lymphedema, I believe this must be what is happening to my chest/trunk/arms and underarms. I was aware of the arms, however I had never read about all the other areas on our bodies that could be affected. Since I removed my compression vest to wash and air dry, I noticed swelling in several areas. At first thought swelling was simply from surgery, now I'm thinking Lymphedema. My discharge papers never mentioned propping my arm up......jeeze and it has been aching like crazy. Plus, my surgeon told me last week to use a heating pad on my arm and chest not the ice.

    I did speak with my surgeon's nurse today. I explained that I was following the simple week 2 stretching exercises. While they were a bit uncomfortable as I performed them it wasn't what I would call painful. I explained that the pain set in about 2 hours later with no mercy. My surgeon is out until Thursday of this week and the nurse will speak with him regarding pain meds. Thankfully, I have a follow up with the surgeon the following week. I will ask about maybe sticking with week 1 stretches for now. I just didn't want to cause any issues from Not stretching/exercising. The link step up speak out is just the opposite of my surgeons recommendations. Looks like they know far more than my surgeon :(

    I had SNB and No reconstruction. I will be 50 years old this Feb and to me the reconstruction just wasn't important ( not meaning anything negative towards anyone who does reconstruction as I firmly believe that it is a personal choice). This pain issue has been terribly upsetting as like most I am right-handed and my right side was my tumor and SNB. Also because I did not want reconstruction, I had a plastic surgeon perform my closures to reduce the chance of 'dog ears' under my arms. In closing the PS cut under my arms nearly to my back to avoid 'dog ears'. Maybe this was a bad idea. I still can not wash and dry my own hair!

    I will be asking for a qualified Lymph therapist and perhaps a pain management center referral from my surgeon. Pretty sure my Aetna Insurance will not pay for PT, as they didn't when my daughter had surgery for a different health issue. On my list to double check.

    Thanks much for all the help!



    · Share on FacebookShare on Twitter
  • Summer2016
    Summer2016 Member Posts: 135
    edited September 2016

    Hi Muska. I am following the discharge stretching/exercises from the hospital. They call them exercises however they are stretches using a cane while lying on your back. Sort of like a mopping in mid air and one is to hold cane with both hands while on back and slowly raise above your head to stretch. As I mentioned above, it was uncomfortable but not painful while stretching. Rather, it was 2 hours later the severe pain hit me. I promise a grown man would have rushed to the ER!

    I realize these are considered mild stretching exercises, yet I would have thought that just simple everyday things would be where the surgeon would want me to start. For example, making my own cup of coffee, taking a short walk etc...then as you mentioned stretching perhaps after a month or so.

    Yes, I did speak with the nurse today. She first told me that she had not had many women call for additional pain meds that most used OTC meds. She asked what OTC I was using. I responded with extra strength Tylenol. And I said it was doing nothing. She said it was a poor choice and of course it would not do anything and that I should use Motrin. Well, Tylenol was recommended on my DC papers! Explained to her that I was told by another MD no more Motrin as I have elevated liver enzymes. The nurse wanted to know why I had been taking Motrin. Well, like my medical history forms says......I have suffered from migraines since age 39 (always around my period). I told the nurse that I feared something was wrong if no one else is asking for more pain meds. She then proceeded to tell me everyone heals differently and not to compare myself with anyone else.---Yet, I feel I'm being treated like everyone else! I explained the stretches and pain and the fact that I have severe pain at night even without stretching. I will have pain at night just from my 10 to 15 minute slow walk down my long driveway (walking was also surgeon recommendation) and from daily meal prep, shower etc...The nurse's response was that she will have my nurse navigator call me to review my stretches and that she will check with the surgeon to 'see' if he will 'allow' more pain meds. I reminded the nurse that my goal is to be able to perform the recommended stretches etc... in order to return to my normal daily activities. I didn't want severe pain to prevent me from doing what I was told I needed to do and I that I didn't want severe pain at night to prevent me from sleeping as I need rest to recover as well.

    I'm upset and frustrated due to the fact that I have always had a high tolerance for pain and that I have always bounced back from health issues surprisingly quickly. Therefore, it is natural for me to be concerned that I am performing a simple stretching exercise recommended by surgeon for week 2 post surgery and clearly it is not working for me. I fully expected to have discomfort, pain etc...just thought an OTC med would be all I needed by week 2 and truthfully I believed by week 3 I probably wouldn't even need any OTC med.

    I appreciate your response! Hopefully, I will know more by Thursday and then the following week I have another appointment with my surgeon. Praying I'm not going to be in the PMPS group---just learned about this today from BarredOwl's post!



    · Share on FacebookShare on Twitter
  • Summer2016
    Summer2016 Member Posts: 135
    edited September 2016

    Oh Kelli, I'm sorry you are suffering from additional surgeries....I can't even imagine! Our timelines are very close as my biopsy was in Aug 2016 and surgery Sep 2016. Thanks to BarredOwl's information I will be requesting a referral for a qualified lymph therapist and I may ask for a pain management center as well. I honestly thought I would know Lymphedema from the hospital DC papers stating that my arm would be swollen as in noticeably if I was experiencing Lymphedema.

    I have my first oncologist appointment this Friday and have been so concerned that I may need chemo that I believe that I missed the Lymphedema symptoms (aching arm, numb hands etc..) Also, just learned from BarredOwl's informative post that Lymphedema can be in my chest, trunk, underarms etc...which I have a great deal of swelling now that I went a couple of days without my compression vest and then tried my week 2 stretches. Not that my surgeon told me to keep wearing my compression vest. He actually told me I could take it off after my first day home and shower then wear a tank top. I chose to keep wearing it until week 2.  The one I ordered had not come in yet so I finally HAD to remove and wash it! I'm just thinking that if my surgeon, his nurse, and my nurse navigator do not help me with this pain management then maybe my oncologist would.

    I just want to feel good enough to do what I need to do to get well. And I remember my father's quad bypass recovery. He was on pain meds while doing home stretches and while he was in PT. While I was hoping to be only in discomfort and mild pain that OTC meds would handle, if I need prescription meds to do stretches and 15 min walk and to sleep I am willing to use them to help me move through this recovery and get back to normal sooner.

    Thank you for responding to my post. It makes me feel my concerns are valid. It is a help to hear other's experiences! I will be thinking of you as well and wishing you and all of us the best!



    · Share on FacebookShare on Twitter
  • muska
    muska Member Posts: 1,195
    edited September 2016

    Hi Summer, I am well familiar with the cane exercises you mentioned and they are great but I certainly started doing them much later in my recovery. I took a look at my records: my surgery was on 6/13 (BMX w reconstruction) and I was not allowed to even raise my arms above the head for some time, not to speak about any exercises you mention. I saw a PT on 7/30, i.e. more than 6 weeks after surgery and she showed me the cane exercises you mentioned and instructed me to start them very carefully and stop as soon as it would start causing pain.

    · Share on FacebookShare on Twitter
  • Summer2016
    Summer2016 Member Posts: 135
    edited September 2016

    Hi Muska. I pulled my stretching sheet out from the hospital to review it. And it says the first sheet such as shoulder roll is to begin post op through week 2. The next sheet said stretches for week 2 (cane exercises). I wonder if they gave this to me because I Did Not Have Reconstruction. I believe it makes sense to wait longer to do these as I am hurting just when I walk or move around for a few minutes. At least my surgeon is giving me a few pain meds until my appointment next week. According to his nurse he wants to check for a seroma. I have no idea if I have one. I have swelling that just started 3 days ago, however it looks to me like what I believe would be normal post op swelling. It is in different places such as below my right breast area, above my left breast area and other places and seems to be growing in size in each place. I have put my compression vest back on during the day but must remove it at night. Not certain if my extreme pain is from the swelling or what. Can't help but think it is all do to those stretches.....ughhhhh.....just ready to be moving forward in my healing process as I don't like to sit around!

    · Share on FacebookShare on Twitter
  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited September 2016

    Sunmer, you shouldn't be having pain to this extreme. I would suggest backing down your exercises to a more comfrtable level. If your liver enzymes are elevated, you should limit the Tylenol--it is processed and excreted through the liver. Ibuprofen, however, is processed and excreted through the kidneys, so if your kidney function is normal you ought to be able to take it.

    And for the record, I required a narcotic at night for a full month post-BMX. I didn't have recon, but I had the most tearing, burning pain in my sternum it took my breath away. Even now, 7 months later, it is tender to touch.

    I how they will relent and given you something stronger for pain. Also, I think a lymphedema specialist is a great idea. She can evaluate and treat. I saw one because I could barely lift my arms 2 weeks post-op. I thought for sure I had lymphedema, but it was just stiffness and swelling. She did some massage to help move the swelling, but thankfully it got better and i got my full range of motion back.

    At one point I got some cording, about 4 months post-op. i saw a massage therapist who had training in myofascial release for about 10 weeks. It wasn't covered by insurance, but she worked a miracle on my arm.

    · Share on FacebookShare on Twitter
  • Summer2016
    Summer2016 Member Posts: 135
    edited September 2016

    Hi mustlovepoodles. I spoke with my nurse navigator today. She too said to gear back on stretches and for me to ask oncologist for PT eval.  I have gone back to week one stretches once daily with a 20 minute walk down the road. She believes swelling is the pain producer. My surgeon gave me enough Norco to take one each night until I see him next Thursday. I know the burning pain you speak of oh so well.....it's horrible! It makes me feel better to hear someone else needed extra pain meds for a bit longer as I feared something was wrong. Hopefully, a PT eval with a QLTherapist will help me move forward real soon. I too am noticing now that my range of motion has been reduced and I can not reach as high/far as I would like both above and straight out in front of me. I am trying OTC Motrin now instead of Tylenol and still I don't feel any relief.....as I might as well not take it. Just wanted to see if Motrin would stop the pain. I was told to place a heating pad on painful areas however I believe it has caused more swelling am going back to my ice packs. I meet an oncologist 9/30/2016 it will be interesting to see if he is concerned with my pain issues. Thank you very much for your helpful insights, mustlovepoodles!

    · Share on FacebookShare on Twitter

Categories