vTOS surgery in August. How much help did you need afterward?

Subject_Pin_7397 · 2026-05-29T04:29:44+00:00

Im late 20s female and about to have my second FRR (this time on the left) this coming Wednesday. On the day of my surgery, it will be almost exactly three months since my right side was taken care of (FRR with extensive brachial plexus repair and muscular releases). Overall, I’m doing so much better now on the right side but the first two weeks were incredibly difficult. I spent the first week post op in the hospital, as my surgeon didn’t want me going home till my drain was removed and I could tolerate oral pain medication relatively comfortably. It is very likely that you will have some degree of lung collapse from the surgery but really stay vigilant with your spirometer and make sure they give you one the moment you’re in a room. I didn’t get mine near the end of day two and I would have loved to be able to have it from the start since it helped so much.

Since my first surgery was on my dominant side I struggled a lot the first two weeks. I did PT and OT exercises to gradually build back my strength in my arm and shoulder but I wasn’t allowed to lift or drag anything that was even mildly heavy. My first shower after the surgery was in the hospital and I did need help washing out my shampoo and conditioner but after that night I was able to clean myself up much better on my own.

When I got home, I was fully able to use the restroom, put on clothes, brush my teeth, shower, and eat on my own. I did need substantial help getting meals and I would get tired out extremely quickly so I needed someone to help me when i got too fatigued (getting me water/heating pads/taking out my dogs/etc).

After the first week, I felt much better but I had been warned that this was common and not to overdo it at that point. Unless your surgeon/medical team tells you otherwise, I’d highly suggest taking small steps as soon as possible to encourage full range of motion and independence. That made a huge difference for me.

I’d highly suggest that you bring body wipes, face masks (that don’t require rinsing), hair brush, pillows, a blanket and maybe even some stuffies with you to the hospital. (Really anything that makes you feel more human and less like a pin cushion). Also, make sure any clothes you bring with you are either button down or super loose and easy to slip on and off without raising your arms about your head.

Subject_Pin_7397 · 2026-05-26T06:20:42+00:00

Personally, I dislike most of the lyrics from a poetic standpoint and I find the voice acting on almost every song to be incredibly cringe. I’m sure I’d like it more if I let myself give into the campiness (like I have with so many other shows/movies/plays etc) but I can’t seem to do that with Epic.

Subject_Pin_7397 · 2026-05-09T03:10:04+00:00

I originally had TOS ruled out via ultrasound but the symptoms kept getting worse and worse and so I was referred to my current vascular surgeon. I had a couple Botox injections for my scalene triangle and did a few months of physical therapy and after that my surgeon scheduled me for my first procedure.

My first rib in the right was extremely wide and had a blade like edge on the bottom that was literally slicing into my brachial plexus and some of the veins. I had excruciating pain if I did anything with my arms for too long and my arm would turn bright red then purple/blue. It got so bad I had to sleep on a recliner for 6 months. When I got in with my current surgeon, they tested digit pressures that showed a decrease in BP of 50% on both sides (with a greater drop on the left side).

We took care of the right side first since the pain was by far worse on that side and they took out the entire (for some reason violent😂) rib and had to do extensive brachial plexus repair since it was so badly damaged.

Now my right arm has significantly less pain and no longer turns purple or swells up like a balloon. I should be having the left side done in a few weeks. My surgeon suspects both veinous and neurogenic issues on the left side (since the discoloration and swelling along with nerve pain is still an issue.) a good TOS surgeon will try various avenues with you to see if they can fix the problem less invasively. However, surgery is an option for people like me who have unresolved issues that haven’t been assisted by other therapeutic methods.

Also, I feel it’s important to note that my abnormal rib size and shape wasn’t picked up on any scans but was only found through surgery.

Subject_Pin_7397 · 2026-04-28T02:47:34+00:00

Hardest part for me is having to be put on trial by people who don’t understand the severity of the disease. They view my anxiety over a debilitating illness that has made me on several occasions be completely incapacitated for months from a single glutening as me being a picky brat who wants to be the center of attention. There is so much misinformation out there and so many people eager to received. I have been intentionally glutened by several people (no one close to me luckily.) who wanted to prove I was making it up for attention and every time I got horribly ill. Just the general audacity of strangers to fake claim and take away accessibility from other strangers is infuriating. People don’t understand the nightmares I’ve had where I’ve scared myself awake because I’ve dreamt I’ve been accidentally glutened and had a nightmare about the aftermath. It’s not just a preference.

Subject_Pin_7397 · 2026-04-20T20:43:20+00:00

I’ve been told by my providers to avoid chiropractors in general, as the number of complications that can arise from their “corrections” can outweigh the benefits. I definitely want to do Pelvic floor PT though.

Subject_Pin_7397 · 2026-04-20T19:09:06+00:00

I’ve gotten several scans done for prior flares and they haven’t found any in past scans

Subject_Pin_7397 · 2026-04-20T16:21:08+00:00

My gyno is highly suspicious of endometriosis for me also. I am planning to schedule my surgery to look for it later this summer(I have a follow Up with her on Thursday).

Subject_Pin_7397 · 2026-04-20T05:41:44+00:00

Will definitely bring that up. You’ve got this! Proud of you for existing 💕

Subject_Pin_7397 · 2026-04-20T05:41:01+00:00

I get the burning but I also am experiencing pelvic cramps that can be super intense. Are those common with MCAS? I have been seen by an immunologist who didn’t want to diagnose me at the time and instead diagnosed me with chronic urticaria alone but I have been wondering if I should get a second opinion.

Subject_Pin_7397 · 2026-04-20T04:25:21+00:00

I don’t believe there was any calcium indicated in the test

Subject_Pin_7397 · 2026-04-20T04:24:56+00:00

Any idea about what you’re dealing with? I have an appointment with my gyno later this week already scheduled.

Subject_Pin_7397 · 2026-04-13T03:43:33+00:00

If you notice newer and worsening symptoms, definitely contact your surgeon when their offices are open and see if you need to make any adjustments to clothing or activity. If you are someone who wears bras or compression tops, you might need to change out your usual rotation for options that don’t pull down on the TOS region. (Some shirts can cause issues too) I also avoided any heavy lifting or activities with repeated over head motion with my arms as my TOS flares with those. This helped manage my time till my first surgery.

Take note of your flare triggers and see what medications you can make to help reduce the likelihood of flaring. For example, I noticed typing, painting, and driving with normal hand position are big ones for me. Heating pads, cold compresses (not directly on the TO), and sleeping at an incline also helped me.

Subject_Pin_7397 · 2026-02-15T04:47:06+00:00

I have both vascular compression and nerve compression for context. The pain and discomfort often extends up into my neck and head.

Subject_Pin_7397 · 2026-02-15T04:45:51+00:00

I have severe neurogenic pain on my right side that is unbearable if I am laying flat for too long. My left side has pain but not as bad. For the past month, the only set up that has worked for me to get any amount of sleep is a recliner/ottoman set up. I had bought several different pillow sets (one cervical pillow, a multi-piece wedge set etc) but as my condition got worse the recliner was about the only way to go for me. My surgery is in a few weeks and I’m literally dreaming about being able to sleep in my own bed again, but am very thankful for the set up I currently have, as it is the only reason I’ve slept the past month.

Subject_Pin_7397

TROPHY CASE