LiveLoveandTrust

I had shortness of breath after my surgeries (3 total) and was told that the phrenic nerve can definitely be irritated with even 1 surgery. Mine was complicated with the 2 extra surgeries and lasted a long time post surgery.In my case on an xray that was done, the diaphragm was still elevated into my lung at 18 months post op. The phrenic nerve is "the motor" that works the diaphragm so when it stays elevated you do not have the lung capacity that you would normally have. I started using a wedge type pillow as laying flat was totally out of the question.
Even now I will experience it at times when I over do things and I have never had any anxiety problems ever.....I find doing diaphragmatic breathing helps to calm me down and lessens obviously "the anxiety that the shortness of breath does causes". There are sites that you can find online that will teach how to do the breathing.....would be better than taking more pills.

chloecasey

I'm now just a day shy of 6 weeks after surgery. As I understand, this is supposed to be a big marker of how well the surgery went as this is when strength training can begin with PT. Unfortunately, my first PT appointment is today. Ugh. I'm nowhere near ready to begin strength training and I'm hoping that my PT will be able to help get some of this "wrecked" feeling I have to move along. I'm hopeful because my arms themselves are feeling great. My chest, back, shoulder blades and neck are not feeling great these days.
The shortness of breath comes and goes but is not near as dramatic as it had been. Before, I was a step away from heading to the ER, now it's pretty ignorable when it happens.
What I have noticed, is that my sternum is feeling worse day by day. I believe I am the only one here to have had this particular surgical approach so I haven't bothered to ask anyone about how their sternum feels but I'm starting to be suspicious that my sternum is failing to heal properly or that I aggravated it in some way. Either that or I'm not tolerating the wires very well as when I turn my head a certain way or push my hands inward (like to clap, squeeze something together in my hands or anything other motion that has me push towards my center) I get fairly strong pain in my sternum.
I'll update again as I make some progress (hopefully!) in PT.

Sigh... the radiating, diffuse arm pain I had prior to surgery that disappeared post op came back today. I am ridiculously disappointed and feeling disheartened. They left the damn scalenes in and I'm wondering if that's causing issues. My PT is afraid to touch them because she's worried that because they're now unattached (obviously) and atrophied that they'll rupture. They're painful and now potentially causing more problems.
Or maybe it's the impinged nerve in my neck.
Or maybe it's pec minor syndrome that I had all the symptoms of but wasn't worked up for.
Or maybe it's residual pain from my shoulder surgery in 2006.
Or maybe it's from my hypermobility.
On top of that, I'm still having issues with my throat feeling swollen and extreme fatigue. I'm going to call my PCP on Monday and ask to see him to discuss all of this. My surgeon told me that I get no more meds from him because I should be healed and pain free by now so I see no reason why I can't talk to my PCP about these problems and see where he wants to send me and what route he wants to take. After doing some research and seeing MissPennyloafer's post about hypermobility and POTS I feel like something clicked. POTS would explain absolutely everything. The IBS, anxiety, depression, hypervilligence, overstimulation, poor sleep, blacking out when going from laying down to standing, fatigue... I'm hoping I can convince my PCP that this isn't a long shot and that he can order some testing. He's the best doctor I've ever had and treats me with the most respect so I'm hopeful.

So it's been 2 months.

I got news today that I feel mixed about. According to my physical therapist, my scalenes (what's left of them) are smooth and relaxed, the front of my neck feels good and my chest is great. My range of motion is full on my right side and almost full on my left. My TOS surgery was a success. The arm pain that I complained about before seems to have been a fluke from overdoing it that day and I've learned that the TOS related pain can be completely managed by pacing myself and resting when I need to rest. I still get some pain/numbness if I do too much but overall I'm cured. Hooray.

That being said. My trapezius, SCM, and a few other muscles in the sides/back of my neck and down my back are completely spastic. The same PT saw me before surgery and discharged me due to failure to progress. She's feeling the same problems, same trigger points, the same inability to release, and same levels of tension as she did before surgery. Everything's the same meaning, that pain was not related to TOS. I think she's right. She also found that my jaw bone is completely jammed. Apparently I have TMJ but am in so much pain elsewhere I've never noticed. Great.

So I've been tasked with finding a doctor to work me up for Joint Hypermobility Syndrome and Ehlers Danlos Syndrome. It likely caused the set of circumstances necessary to create the TOS in the first place. There are only a handful of rheumatologists in my area that take my insurance and the ones that do seem to only want to deal with autoimmune issues. Orthopedics don't want to see me because they don't deal with Ehlers Danlos syndrome and only want to see me for JHS if something needs to be surgically stabilized. Pain Management doctors will see me... if I have a solid diagnosis. PCPs are able to diagnose this I've been told, but my PCP left the practice and the new one I saw didn't listen to me at all and refused to even discuss the fact that I felt like I had an issue. As in, wouldn't even listen to what problem I thought I had. I don't want to stray too far from the practice I'm in because I don't want it to look like I'm med. seeking! I'm so tired and confused. Isn't there someone out there that can do this legwork for me?

I've been so tired. I've been tired for months prior to surgery and that hasn't let up either. I thought it was the TOS and all the energy that went into trying to make nerves pass along information and the excess tension but that's not the problem. My PT asked me today how the heck I expected to go back to work next month like this. I honestly don't know and I'm going to need to collect disability if I can't go back to work. But I need a doctor to file! I'm so stressed out. This is ridiculous.

I'm puzzled. I had surgery 8 years ago and I'm worse now. But I remember my surgeon, prior to surgery, attributing all those same problems with the traps, upper back and SCM to TOS. Did your doctor sat they were not related to TOS? What TOS symptoms have you done away with as a result of surgery?

Thanks,
Kelly

You're right, they absolutely can be TOS pain, however, the way I have healed indicates that isn't the problem along with my past medical history. The areas of my body that would have been the most traumatized by surgery are completely healed up and doing well. The areas that would have been indirectly affected are a complete mess and the mess that they are in is the same they were before surgery, immediately post-surgery, and now 2 months later. The way the symptoms have not fluctuated at all is what has them concluding that it is not TOS related pain.

I had AVNTOS. My blood flow is restored, my arm pain and weakness has disappeared, the feeling that my hands were full of stagnant blood has gone away, my sense of feeling has been restored in my fingers and forearms, and my hands have warmed up quite a bit. I do get numbness, tingling, and pain if I overdo activity but as a baseline, it's gone. Also, the spastic muscles in the front of my neck have relaxed and now can be considered normal.

The residual symptoms are also the symptoms I've had the longest. Since around the time of my shoulder surgeries which were to stabilize them due to my hypermobility. I also have pain in other areas of my body that seems to be due to hypermobility as it's in my lower body.

The only surgery-related issue I seem to have now is my myofacia being all balled up making me feel "stuck."

Another explanation is all of the sx are due to TOS but the surgery alleviated only the vascular and arterial sx. I find is troubling that surgeons are so quick to say something must not be TOS when TOS surgery doesn't resolve the sx rather than asking, why is it that the surgery so infrequently resolves neurogenic sx? Just once I'd like to hear of a surgeon who takes it upon him or herself to figure out why the surgery didn't work rather than falling back on circular logic that shuts down real inquiry.

Good luck unraveling it all.

I have had same issues, but overtime I have had improvements. I had my last surgery in July of 2012. I always felt that the surgery only fixed the blood issues, but slowly the nerve problems have been getting better. I still get massages once a month and do daily stretching and nerve glides. I can tell you that the tingling as pretty much stopped, and days where muscles are better. My surgeon told me that my tos was years in the making, so it might take time to get better. I am grateful for any progress that I make, and yes it has been slow, but I continue to make progress.

My nerve pain down my arm is gone, the tingling and numbness is gone. That points towards the neurogenic aspect being resolved. The fact that those symptoms have been completely stable throughout recovery is another big sign. If there had been changes and it settled in this way, that would be one thing, but you don't have such a traumatic surgery to the area and see absolutely no change one way or the other.

I have not had surgery, but all the symptoms you have remaining are ones that I currently experience. I have been able to alleviate the SCM and most of my jaw issues though. All those symptoms are TOS related. I do not have EDS, joint hypermobility, c-spine or any other surgeries to account for my issues.

I hope your surgeon is correct in that your neuro issues have been solved, but in some unlucky cases, TOS is more comprehensive than the nerves that run down your arm. Most of my back/scap issues I believe are coming from my Long Thoracic Nerve. My other issues seem to stem from my Vagal.

It can take well over 6 months to see signs of improvement if the irritation or compression has been removed from the nerve. Nerves hold a grudge and there is no immediate gratification with this syndrome!

The median, ulnar and radial nerve are not the only culprits. For lack of a more scientific term, there's a lot of junk in your neck and BP area which your surgeon should not shrug off as unrelated.