Abdominal swelling/bloating after a double mastectomy

@babs25

What tests did you have done to rule out other reasons for stomach area swelling?

Many thanks.
@timely

I had to have a CT-scan of my chest, abdomen & pelvis. I had just had my 3 month checkup so no blood work was needed. Once the results were back and other reasons were ruled out I had the go ahead to do my therapy. I have OT tomorrow and I'll ask her what others have had for testing before they started and let you know.

Please fill me in on exactly what massage method that she is using for your stomach. I have breast lymphedema.
She did tell me that I should not massage below the bellybutton but did not say why.
I asked her if I have stomach lymphedema too and she said nothing. I have rolls above the bellybutton on both sides of it. When I massage over from the left side to the right side above the bellybutton, I end up with all the lymph fluid on my right side. Both rolls get smaller the more that I massage to the right side.
She has me just massage down once on the left side at the end of massage and still did not tell me to massage down the right side at the end at all, even though I told her about this fluid accumulation on the right side at the end of the massage. She says that it is odd that all the fluid accumulates there and does not know why.
She seems to think that I should not have this problem as I only had a lumpectomy of the left breast and sentinel node removed.
Her only answer to this is to get one of those massaging vests.
I am thinking of seeing another PT and getting another opinion.

I had an OT appt this morning and I asked her if someone wanted to explore possibility of abdominal lymphodema what would you suggest. She said find an OT that is CLT (certified lymphodema therapist) make an appt for an evaluation & if they determine treatment is necessary the OT would send their finding to the patients Dr and she said she also has the patient contact either phone, email or if they have a mychart send message through that - to confirm you had an appt with OT and she was going to contact your office. The OT needs a Dr order for treatment and some just give it without seeing patient others, like mine, wanted to see me and rule out other possible reasons for my extended stomach. I will also let you know that when the decision to purchase my own pump & garment - the rep from the company selling the items needed my Dr contact info for insurance purposes... you'd need a prescription or order if using insurance. They handled all of that so that was nice. Like I mentioned before I purchased my without insurance as my garment required the newest pump & insurance would only cover the smaller pump which was not compatible with my garment - so I paid the without insurance amount. Any issues I have had my rep is very responsive too. And for me purchasing one for myself in long run will save me money by eliminating the 2 appts I would have each week to use the pump at my OT's office. Again the results are amazing - and I'm so glad that I asked my PT about the distended stomach - because she had OT come in - decided to make an appt with her and so glad I did! I hope you find relief - there are many massage therapist that are trained and certified in Lymphatic drainage so that's another great option. Take care.

Thank you so much for taking the time to answer. I am familiar with the procedure and Dr referral because I did have it done for my arm. I may well go back through that again, but thought if there was a piece of equipment I could obtain, I might be able to avoid it. Many thanks!

How much did the machine cost? (Hope it's ok to ask!)

The cost will depend on what garment & pump you'll be using. I had a garment made specifically for me - each garment & pump have different prices. If you have insurance it may be covered- I have insurance and while the garment would be covered my insurance would only cover the smaller pump which did not work with my garment (they were we're waiting & seeing if this works -- sigh -- so I was given the cost I would pay if out of pocket. My cost for both was $3500 which can be paid over time if preferred- I opted for payment in full. The cost may seem like a lot but considering I needed to go in 2 times a week to have the treatment done by OT which was around $300 per week ( yes insurance did cover it but I hated having to go in 2x's a week and my therapy time would be less than I needed ) so this was the perfect solution for me. I've known of 2 others who purchased theirs & they agreed that being able to be at home was so much nicer. I hope this answered your question. If you have any others let me know. Take care.

Where do you purchase this? How do I learn more information about this?

You can learn more info on the company I used on their website:
https://biotabhealthcare.com/
There are other companies too so a search online would give you more info on what is offered.
I would suggest if this is something you'd like to pursue after you have decided you may like to pursue this - I would find an OT that is a certified lymphodema specialist and make an appt for a consultation (many times these are no cost). They will be able to give you information & guide you through the process. Hope this helps.

Hi. So sorry I never saw the replies to my post. I got involved in planning reconstruction surgery with a different surgeon so put the abdominal problem asidefor a bit. But there is definitely a problem and the second surgeon ordered an ultra sound to begin to try to figure out what the problem is. That will be this Monday. But after finishing reading all the comments/replies on this forum, I'm sure it's lymphatic and I am going to figure out how to deal with that. I already saw a lympedema therapist for my mastectomy area but she basically ignored my abdominal problem. But I won't give up.
I'm assuming you have a similar issue and I'm curious if you have done anything?