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5+ Years Post 1st Rib Resection/ Many Questions

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Old 06-23-2017, 04:55 PM   #1
Faith0220
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Default 5+ Years Post 1st Rib Resection/ Many Questions

Hello everyone,


I hoping someone one here can maybe shed some light on what I've been going through the last almost 6 years. I'm trying to find someone else who has had a similar experience to mine but so far I haven't had any luck. I'm really starting to feel more confused and alone with this then ever.

Almost 6 years ago, in 2011, I was finally diagnosed with Neurogenic Thoracic Outlet Syndrome. By the time of my diagnosis, I was completely debilitated and in constant, excruciating pain. The worst of it though, was that by the time I was diagnosed, I literally lost the ability to turn my head to one side. It was completely impinged. I would soon learn that a bone was the reason for this, I had these ribs that I was born with that only a small amount of people have. I'm sure most of you reading this are familiar with the condition itself, so I'll spare you. I had constant, left sided ( side of the compression) migraines, daily, facial pain, the pain would travel from my shoulder and side of my neck into my head and face and then down my arm and hand. I couldn't work anymore, drive, etc. It literally almost drove me crazy that I couldn't turn my neck no matter how hard I tried. I went undiagnosed for almost a year like this. No docs ever mentioned extra ribs or TOS or anything like that and I was seeing them all where I live. It wasn't until I finally met my Thoracic Surgeon an hour away from where I live who told me what was going on and he also told me that I was one of the worst cases he had ever seen in all his years of just doing this surgery. I was also told he only does this surgery in the most severe of cases, lucky me was one of those. My 1st rib resection was done the following week.

I didn't have a good recovery at all. The only thing that improved after the surgery was that I could finally turn my head again to the side where the rib was removed. I was told I would be able to go back to work and a normal quality of life eventually after a year of doing my physical therapy program and everything I was told to do. I never got any quality of life back.

I would go back to the surgeon who lives an hour away from me and is supposed to be one of the best for this, on follow up appts even a year later he seemed at a loss for why I had still so much pain, weakness and still some severe neck, head and facial pain, esp in my eyes. To try to make a very long story short(er), I felt like he eventually wrote me off. Passed me over to chronic pain specialists who suggested injections which I tried that just seemed to cause more pain then anything. Eventually, I saw every kind of other doc and specialists you could imagine, including spine specialists who were now telling me that my neck, head pain and headaches were being caused by scoliosis in my neck which may or may not have been connected to the TOS. I had dentists telling me it was my TMJ from grinding my teeth even though my jaws looked fine. Whatever specialist I saw, the problem was something else and not related to this rare surgery I had that they had never seen before.

The last time I saw my surgeon over 5 years ago, he still had no answers and basically told me that it could take a couple of years for the nerve pain to die down on the surgery side and that I would eventually have to have my right rib removed as well. And perhaps another surgery with the pec muscle on the left side if things didn't improve. Well, that's been hard to swallow when I'm still having so many problems on the side that was removed and all this time later. I still get some weakness in that shoulder and the nerve pain did come down some, but I continue to have problems. Pain and tightness around the collar bone and on that side of my neck. The muscles are constantly in spasm although recent massage therapy has helped a little but they always still end up tightening around my incision area and side of my neck. I still get constant pain in my face, esp eyes and head thats made it impossible to do anything, even read or watch tv, or even concentrate on anything. It's like a knife is stuck in my left eye all the time with variations in the severity of the pain, but it's never gone away. My neck is always tight no matter how much PT and stretches, massage, injections, etc I've done. I was put on heavy pain medications for the last 4 years that only made the pain and headaches worse I discovered, so I recently quit them all together.

Not only am I still getting this constant eye, neck, facial and head pain and some pain and weakness in that shoulder. I feel totally out of it sometimes. I always blamed this on the constant headache I've had for years now, and then the medications but I'm wondering if this is still from the TOS itself or the surgery. No one seems to be able to give me any answers and where I live and if they do, they are all different. I get the feeling that none of these people have ever dealt with someone who has had this type of condition or surgery before. I'm still trying to strengthen that left side because it still feels like all of those muscles are pulling down on me when I stand up. And I look completely lopsided now. I had the supraclavicular decompression done because that was the preferred method of my surgeon at the time. So around the scar area, that whole area looks like it's missing something. Flat and my left shoulder droops now and looks much different then my right side that still has the rib intact. I've had a nightmarish, unending hell since the surgery where chronic pain completely took over my life. I became severely depressed and anxious, I did nothing, went no where and just withdrew from the world until about a month ago when I stopped all pain medicine so that I could begin to try to finally figure things out and feel how I really feel. I missed the prime of my life. I'm 39 now. I went into this single and for the most part alone, and here I am almost 6 years later still single and alone.

I'm so tired of going to chiropractors and physical therapists who don't know how to help how I look or feel. My most recent chiro, said that it's clear that having only one rib removed has completely destabilized my spine. My surgeon never warned me that I would look so lopsided and off either. He told me when the other side starts to bother me, to go back to have that side done. But how could I when the left side was still giving me so many issues? I'm scared to death of going through all of this again to have it turn out like it did. But I recently realized that it may be the only way to get any kind of normality back that I lost a very long time ago now. The thing is, I still don't seem to have many symptoms on that side. Still mostly on my left where I had the surgery. Could it be possible that the right side could be contributing to all my symptoms somehow even though I don't get immediate pain in that area? Could it be the cause of my continued neck stiffness and facial pain and headaches? I just don't know but I need answers. I've lost enough of my life to all of this and I'm not okay anymore with just accepting that I'm permanently disabled; I never was ok with it but I was so desperate to believe that something , anything else I was trying would eventually help fix these remaining problems.

I'm tired of the constant pain in my face, eye(s) and head and my tight neck. I am tempted to go back to my former surgeon and ask him all these questions but for the reasons I stated above, I really hesitate. Should I try to find another one in the same city that I saw my previous surgeon in see instead? If there is another good one there for this, I don't even know. I know there are none in my home state. And he was supposed to be one of the "best' but I'm not so sure I trust him anymore. '

Is there anyone else out there who just had a rib removed on one side and looked and felt ok afterwards? Or if you have these ribs you kind of HAVE to have both sides done whether their symptomatic or not ( or you feel like their not) I don't want to waste anymore of my life not knowing. But I feel like a surgeon does surgery and any of them that I see now will just suggest doing the right side, if anything just so it matches my left side. I hope I'm making some sense here. Please forgive me if I don't but the stabbing pain in my head and eyes is quite distracting. I've been fearing that in a small percentage of people that had to have had this surgery, that I'm one of those that has not and just will never recover. I couldn't move my neck and was told surgery was my only option at the time so I feel like I never had a choice in the matter.

Anyone else have one side done and not the other? DO both sides look different or the same? Did you have complications for years following your surgery? Were some of the same as what I'm describing? There has to be at least one other person out there who has had a similar outcome to me. What direction should I go in now?

I know I'm asking a lot of questions but I do have a lot of them. I want to thank anyone who reads this who can give me any kind of advice, feedback, encouragement, something. I really appreciate it and know it probably wasn't easy to read all of this but I'm really at a loss lately. I want to live again so bad without this pain and be able to finally look in the mirror without looking so lopsided. Can anyone help?
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Skeezyks (06-24-2017)
Old 06-24-2017, 12:40 PM   #2
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Hello Faith: I cannot comment with regard to your concerns. Hopefully there will be some other members who will. I simply wanted to leave a brief reply welcoming you to NeuroTalk. I hope you find the time you spend here to be of benefit.
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Old 06-24-2017, 01:01 PM   #3
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Be sure to explore all our sticky threads (on TOS forum main page above the thread list) & use the search for specific things you want to find..lots of info in past posts...
https://www.neurotalk.org/search.php

some things off the top of my head-
scar tissue- internal- can cause ongoing pain & sx..
trigger points / muscle spasms
posture - fwd head /fwd shoulders

Did you have the extra cervical ribs & those were removed, or a rib resection of the normal first rib? Did they remove the whole rib or leave a stub? ( a stub/stump can cause ongoing problems )
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Old 06-29-2018, 08:44 PM   #4
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Looks like it has been about a year since you posted but, I hope you are doing well. I would like to reach out to you since your symptoms sound nearly identical to mine. Eye pain, facial pain, and headaches I consider the worst of them. I basically had a headache for 11 years straight. I am about 9 months post first rib resection. My story is a long one but, basically I went to countless doctors for years MRIs, CTs, X-ray, you name it. Never had any significant findings ever. Finally, I decided I HAD to convince a doc to operate on me. Luckily first rib resection can be performed from clinical findings alone because, again, no significant findings with the latest scans the thoracic surgeon ordered -AND-

after surgery I was informed by the surgeon and nurses that I had been living with a BROKEN/NON-UNION of my first rib since a dirt-bike crash when I was 17 (as of writing this I am 29 and my symptoms started after the crash).

My broken first rib was missed by doctors COUNTLESS times. Even the surgeon (who confessed he had missed it too) and nurses were astonished.
It was deemed such a clean break that it was hard to notice on imaging. I put the CT scan on my computer to look at (and knowing where and what to look for) using 3D modeling software and sure enough there it is. Needless to say I have ZERO trust in radiologists (I could elaborate quite a bit here as there are many cut and dry reasons why but I will leave that for another story).

Finally, to try to help you out my friend I want to tell you what has been helping me out. Immediately after the surgery I felt INCREDIBLE despite undergoing an invasive surgery.

Stretching my neck. A LOT.
Also, avoiding caffeine completely. Not even a cup of green tea.
It seems for me, that, that tightness in the neck is the source of my symptoms and pain.
I really stretch the operated on side of my neck like a mad man to be honest.
For nine months since I have to stretch everyday. Many days every hour. Stretch in the shower under mild heat too.
It seems the caffeine adds a little tightness to that area and even a little bit seems to cause quite a lot of pain and symptoms and does not allow for a very deep stretch.
At times during these 9 months post op I have gotten lazy with my stretching (I t gets exhausting sometimes) and I slowly feel my neck get tighter and the symptoms follow. Once this occurs it can take weeks to get myself to a lower pain level by getting back to the stretch-grind. lol

Sorry for the rant. It is the defining focus of my life for the past ~12 years condensed to a forum post. Please get back to me if you read this !
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Old 06-29-2018, 09:01 PM   #5
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Also, I will sometimes do manual traction with my hands in that area the while stretching to get an even deeper stretch. It is all about really searching out any and all tight areas and working on them.
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