After almost 4 years of constant pain and many doctors I had a rib resection and scalene removal by the 2 incision approach at the beginning of September 2012. Surgeon I used has an average of 6-7 thoracic patient per year who have to have surgery. Aside from the initial pain involved with recovery I was feeling much better until about the 3rd week which is also the time that I weaned off all meds I had been on including pain meds from my surgeon. Ever since that point I have been on a major downhill. I have constant pain in the front left armpit area and also the shoulder blade area. I am starting to experience bits of numbness again and every time I use the arm whether involving weight or not the pain intensifies.
If the pain wasn't enough I have become severly depressed due to lack of energy (currently on adderall 20mg x 2 day) and focus. I feel as though I have a huge gray cloud infront of my head and can not concentrate. I started back work on Nov 3rd and have been on a reduced schedule at work of 30 hrs. But anything more than a 4 hour period of sitting and the pain gets intolerable and wears me out. Also in addition to this I have been having issues with sleep insomnia and average about 4-5 hours of sleep per night even with the aid of meltonin. I have tried supplements and have been watching my diet thinking that it could be related to a deficiency in something.
Had a followup scan with my vascular surgeon and he says that he doesn't see any obstruction. Saw him this past Wednesday about the issues that I described above and he told me that I am healing well and that it is not related to what he did and that I should see my primary about those issues.
I feel hopeless right now. Trying to work is killing me both physically and emotionally. I am not the person that I used to be. Even while I was in pain before the surgery I had decent amounts of energy and was a happy person. I don't feel like that anymore. Does anyone have any advice. I am seeing my primary tomorrow but with the past experiences that I have had with my doctors I am highly doubting that it will help at all. I am the sole income for my family and in the past month back at work the amount that I have made is not even covering the essentials. I never feel well enough to go to work but push on for them. My work does have a long term disability plan that would pay about 1,400 per month which would be tight but do-able. I don't want to feel like this anymore. I want to be the mom and wife that I used to but I'm starting to feel like I'm loosing this battle and the depression and anxiety from everything is over whelming. I don't know what could be causing these issues....I'm googled out may be endocrine? Don't know.

Any advice is appreciated. I am desperate and will try anything at this point.


Amber

Hi Amber - I haven't had the same surgery as you but I have had a thoracotomy for excision of a thoracic disc in July. I do have similar issues with my arm/shoulder and incredible aches and pains from the surgery itself. My surgeon and gp have both told me that it takes a good 12 months to recover from such extensive surgery and that as the fields of the surgery heal and you use them etc they will ache more as part of the healing process. It is hard to know what is normal and what is not. I was also told and know from other spinal surgeries that I have had that the anaesthetic itself takes its toll. I returned to teaching this term and I have had days where I have thought it is beyond me because of the aches and pains. In Australia it is incrediby hot and humid at the moment and I am finding it intolerable. Like you when I came off my fentanyl pain patches that was when I felt overwhelmed with discomfort and wasn't sure how I would ever go forward like this - that was about a month after surgery. It is only early days relatively speaking in terms of time frames for you - maybe you need to still be on a stronger form of pain relief or even a different kind and slowly ease of the dosage over a longer time. You might benefit from hot packs etc too. What I have found is that if I can maintain a level of pain relief regularly eg anti inflammatory and panadol osteo etc then that takes the edge off and it is manageable - not necessarily perfect or comfortable but I can cope. Night time is a challenge - it is 3.24 am here at the moment and I have been awake trying to get comfortable but it is also very humid and the aches and pains are worse in this weather. I have decided I am not going to allow myself to get distressed about night time and as long as I am resting - maybe eventhough that is not ideal for recovery - I am not going to stress over it. The trouble is that pain and suffering is such a personal thing and the experience is different for everyone. I think people - family, friends, work colleagues etc just expect that you bounce back from this kind of surgery but the real struggle is ongoing.
Try not to lose heart. Be kind to yourself. Maybe see if you can go back on a stronger form of pain relief and then cut it back over time. It could just be another part of the healing process. Importantly remember you are not alone.

Thank you so much for your kind words ejwblibby. I saw my primary care today due to the numbness taking over the entire upper left side of my body and arm. He prescribed me steroid, put me back on my lyrica medicine and put me on some anti-anxiety medication to help with depression. Glad to know I'm not alone. Crossing fingers and hoping that it may help make the pain tolerable. Have 5 days of FMLA left until next August so I really hope it does. I'll keep you posted. Thanks again.

Sometimes after TOS surgery you may still need to be on some sort of pain med long term.
The surgeon should have shared that possibility with you, but doing 6-7 of these per year isn't very many.

I'm sure others that had surgery will chime in and share their knowledge first hand.

I think some are on muscle relaxants of some sort to keep things from tightening up.

Don't suffer /tense up with the pain, you do need to keep the pain & tensing at bay.

Doctor does not want to put me on any pain meds. He is concerned on the addiction aspect of it. I myself would prefer not to but need something to relieve the pain. Took the viibryd about 2 hours ago and it seem to be helping to reduce the amount of pain that is caused by anxiety. I know that healing takes time and that I must be patient, but I just want to be semi-comfortable in the mean time. Doctor said we will try this and see how it goes. Says if it doesn't that he will do some more blood tests and also a scan of my arm and hand.

Thanks again to all on this board. You have been so comforting while going through diagnosis stage, surgery, and now recovery. Hoping that I can get back to a manageable normal. TOS will always be a large part of me and I know that I must take it easy to recover. Does anyone have any ideas of what could help my back in a cubical based environment.

Amber

I'm so sorry for your pain, and what you have been going through. I am 3 weeks post-op, and have been feeling pretty rough today. My arm pain returning and scapular pain is so very discouraging, but I am just hoping it is from the swelling. I take muscle relaxers to help with the spasms and prescription strength ibuprofen. I have Tramadol for pain and a compound pain cream I use for breakthrough pain relief. At first the muscle relaxers made me very sleepy, but my body has actually adjusted quite well. I take them 3x's daily. For your back pain, are you referring to your upper back/shoulder area? If you aren't too bothered by wearing a moist-heat heating pad at work, I would recommend one that you can lay over your shoulders and has a neck cut out to help with the tension you feel when sitting for longer periods of time. As difficult as it may be, try to remember your breathing throughout the day. When we are in pain, we tend to tense up more and guard causing everything to be more painful. Taking short breaks to get up and walk around will also help to loosen up your shoulders/neck. I hope you can find some relief soon, and start to feeling better. Hugs!

Oh good it is probably the lyrica that you need as it works on nerve pain etc The stronger medication masks the symptoms but you need to be able to move and function especially when you are the sole earner etc. Don't lose heart. We are never the same after major surgery but we have to focus on the positives and find a way to keep moving forward. Importantly remember tat pain etc is a very personal thing - but you are not alone as there are others battling on too! Take care

Yes, when I came off my pain meds my doctor recommended that I slowly wean off my meds. Lyrica is the only medication that I know for a fact worked (other than massive amount of ibuprofin-2400 to 3200mg per day). Being strong. Had a decent day today. Have felt more productive than I have at all in the past month (still remembering to take it slow). You are right. I have a wonderful husband and 2 beautiful girls who take care of me and keep me going and a board that I can go to when I don't feel like rambling about symptoms that they they do not have an experience with. They are my world. My motivation. My husband was the one who matched my conditions to TOS then had 4 doctors confirm it. I am a lucky girl....just takes time...that and lots of rest!

Amber

May I ask how long you have been on the Lyrica? I do know a few people that have really benefited from taking it. I was so apprehensive when a doctor recommended it in April. Most meds that can cause weight gain, have done that for me so I get super nervous. I may still try it, though