[Laur3d]

I am just now 4 weeks post op for venous TOS. I also had a blood clot in my left shoulder due to the compression. So during my 7 days in the hospital there was the catheter procedure to break clots, followed by first rib resection. I have been told normal recovery should take 3-4 weeks, but most postings I've seen speak closer to a few months. I have full range of motion, but the most lingering pain is under my armpit. I may get a MRI to get more answers. I tire very easily still- even walking. I am getting weaned of meds, but I'm afraid it's too soon. Hoping to return to work next week. Any similar experiences or feedback? This past month has been quite difficult. Thanks.

[ladylaura418]

Originally Posted by Laur3d

I am just now 4 weeks post op for venous TOS. I also had a blood clot in my left shoulder due to the compression. So during my 7 days in the hospital there was the catheter procedure to break clots, followed by first rib resection. I have been told normal recovery should take 3-4 weeks, but most postings I've seen speak closer to a few months. I have full range of motion, but the most lingering pain is under my armpit. I may get a MRI to get more answers. I tire very easily still- even walking. I am getting weaned of meds, but I'm afraid it's too soon. Hoping to return to work next week. Any similar experiences or feedback? This past month has been quite difficult. Thanks.

Hi there,

I'll be six weeks post-surgery on Tuesday. Of course, everyone's experiences are different, but I'll just say that I've had similarities with you at this point. My pain moved around a lot initially - from my shoulder, arm, back, chest, arm pit. My upper chest and top of my arm are still numb, apparently from severing sensory nerves during the surgery. I've been off all meds for about a week now, and feeling back to about 80% of my usual energy. I still tire quite easily as well, I can be out and about for about 5-6 hours and then need to rest for awhile.

I know this is a long, hard road to recovery, but hopefully we will experience positive outcomes. I have already noticed an increase in my hand strength, and before the surgery, I could barely make a fist. I'll be having my second surgery four weeks from Tuesday, and I'm just hoping it goes as well as the first.

Hang in there!

[Jomar]

Sometimes during surgery they will position the arm away or up/back for better access, that could be why the armpit areas is sore, got overstretched due to positioning. Also if they went in thru the armpit for the surgery, that could cause extra swelling & discomfort.

I'm sure the lymph nodes in the armpit area got aggravated also.

[Limoges]

Jo*mar, I was thinking this as well, thanks for bringing it up. Though my incision is along the clavicle, they must position the arm in a specific way during surgery that makes it hurt afterwards. Armpit pain seems to be common among those of us who've had this surgery. (I am 3.5 weeks out from surgery.)

LadyLaura, I see Dr. Donahue on Monday. It makes me feel better to know I'm not crazy (well, more or less, haha) for being so tired. We are having dinner guests tomorrow and I did some VERY light work around the house for an hour or so yesterday. I needed a nap afterwards! I keep thinking I should have more energy than I do!

[Laur3d]

Thank you all so much. My incision is along the clavicle, but the pain beneath my armpit had been going on for months. I was diagnosed with rotator cuff tendinitis late January, but it turns out this was actually the problem. In my follow up Monday and venogram I will discuss the lingering pain. I'm not sure at this point I could even last 5 hours working. another question, I do have they same narrowing on my right side, but it is not being recommended for surgery. Considering this did start for me with a blood clot I do have a lot of fear this will repeat itself.

LadyLaura- did you request the second surgery or was this just the planning by surgeon?

Thanks again- it really helps to hear from others going through the same thing.

[Sheri_TOS]

Originally Posted by Laur3d

I am just now 4 weeks post op for venous TOS. I also had a blood clot in my left shoulder due to the compression. So during my 7 days in the hospital there was the catheter procedure to break clots, followed by first rib resection. I have been told normal recovery should take 3-4 weeks, but most postings I've seen speak closer to a few months. I have full range of motion, but the most lingering pain is under my armpit. I may get a MRI to get more answers. I tire very easily still- even walking. I am getting weaned of meds, but I'm afraid it's too soon. Hoping to return to work next week. Any similar experiences or feedback? This past month has been quite difficult. Thanks.

Laura -

I know four people locally who have had their 1st rib removed due to a blood clot forming in their vein. One person had a 9 inch blood clot. They all were back to work in the 2 to 4 week time frame depending on the type of jobs they had and still have no long term problems. Just because they were back to work doesn't mean they were pain free. I think they all had monitoring (repeat angiograms??) for awhile and were on blood thinners for 3 to 6 months post surgery. I think the post-op treatment varied by surgeon. So, to make a long story short, it sounds like you are on a similar track. Hang in there!

Everyone's recovery is different! I, too, was expecting a longer recovery after surgery after reading the posts. I went back to work at 5 weeks as I had used up my vacation time.

[Laur3d]

Hi Sheri, thanks for sharing. That does make me feel better. I think this experience is just much more than anyone can prepare you for. Was there. Need for you to have a second surgery or was that discussed? Thanks again

QUOTE=Sheri_TOS;867703]Laura -

I know four people locally who have had their 1st rib removed due to a blood clot forming in their vein. One person had a 9 inch blood clot. They all were back to work in the 2 to 4 week time frame depending on the type of jobs they had and still have no long term problems. Just because they were back to work doesn't mean they were pain free. I think they all had monitoring (repeat angiograms??) for awhile and were on blood thinners for 3 to 6 months post surgery. I think the post-op treatment varied by surgeon. So, to make a long story short, it sounds like you are on a similar track. Hang in there!

Everyone's recovery is different! I, too, was expecting a longer recovery after surgery after reading the posts. I went back to work at 5 weeks as I had used up my vacation time.[/QUOTE]

[Sheri_TOS]

Laura -

People who have the TOS surgery due to a blood clot tend to fare better after surgery than other cases but this doesn't always hold true. I mentioned the people I'm aware of who've had surgery for blood clots whose situation was similar to yours. My surgery was for neurogenic TOS (far more common but less likely to have a good outcome). Hopefully, there is never a need for a 2nd surgery on this side! I do have arterial and neurogenic TOS on the other side from a separate injury and likely having surgery in the next few months.

[Laur3d]

I'm very sorry to hear that. Good luck and speedy recovery

Originally Posted by Sheri_TOS

Laura -

People who have the TOS surgery due to a blood clot tend to fare better after surgery than other cases but this doesn't always hold true. I mentioned the people I'm aware of who've had surgery for blood clots whose situation was similar to yours. My surgery was for neurogenic TOS (far more common but less likely to have a good outcome). Hopefully, there is never a need for a 2nd surgery on this side! I do have arterial and neurogenic TOS on the other side from a separate injury and likely having surgery in the next few months.

[ladylaura418]

Originally Posted by Laur3d

LadyLaura- did you request the second surgery or was this just the planning by surgeon?

Thanks again- it really helps to hear from others going through the same thing.

Hi there,

The surgeon is very clear on his intentions and procedures. In cases where patients present with bilateral symptoms, the surgeon "offers" the first operation to the patient. Therefore, he deems that your symptoms present in a way that surgery could be helpful after all other options are exhausted. For my left side, he "offered" surgery, and after careful thought, I believe(d) it would be the best thing for me, all things considered. After the first side has healed, the surgeon is pleased with progress, etc, and he believes the remaining side could also benefit from surgery (again, other treatment options already tried), the surgeon will go ahead with the surgery at the patient's will. Of course, any surgery is at the will of the patient, but in the case of my right side, I didn't have to wait for him to "offer" me surgery. He told me I was a candidate, I have seen improvements from my left side, and I asked him when he could book me into surgery.

So long story short, in answer to your question, I requested the surgery for the remaining side, but it was only after the surgeon deemed that I was a candidate.

I hope that makes sense! Good luck to all.