Hi everyone

I just wanted to post a short message letting you know how my post op time is going.

The last few days have been miserable and I am so tired of pain that I can't stand it anymore. I got so mad the other day that I started kicking things, crying and screaming. I just can't take it anymore. Even with all the medication I'm on I still have pain and it's worse than it was before the surgery. I can only talk for a little while before I have so much pain that I can't move. The whole area around my incision is sore and I can't even touch it. I have constant aching around the shoulder in the back of my head. I get headaches from hell and they just don't stop. It's at the base of my head where it starts and all around my neck just flares up in pain. I would like to detach my head if I could. It hurts so bad that I can not open my eyes or move. I try to massage the area and when pressing in certain areas it actually helps it go away. I am still getting excruciating nerve pain that is in the neck and shoulder along with numbness on the surface of my chest and neck. It is the craziest feeling. I can't feel my fingers when I touched the area but yet the pain is just unbearable. I honestly don't know what happened! I cannot move my arm if I try to use it in any light motion to pain shoots right up to my neck. I still in dealing with the cold hand in color changes but it's worse than before surgery.

I have really bad sharp pain in the right side shoulder blade. That seems to be where a lot of my pain coming from because anytime I moved my armoh my it hurts. It's where if you go from your shoulder and go down into your back its right where you're arm and shoulder kind of connect. It's hard to describe but it's basically been in my back below the shoulder just touching that area is so darn painful . Can anyone tell me why that area would hurt so bad. It hurt before the surgery and always felt like knotted muscles there but even massages didn't do anything. The pain is just so bad and it moves into my shoulder so I wonder was something missed? He said he freed up all my nerves. I got a copy of the operative report stating that all four nerve roots were encased in scar tissue and also the scaling muscles do not look so The one muscle had atrophy and he removed to scaling muscles that were pressing down on the nerves. He told me at the hospital that he felt I would have a good outcome but what the heck?

I still have all the same pain I had before and new pain that is 10 times worse! I totally regret having the surgery now and I'm so upset. I don't know if there is something else that is causing the problem. I did make one boo-boo the other day. My husband and I got in a fight and I got really ****** off and took my rings off then threw them (with my right hand of course) which was totally stupid But I wasn't thinking. I just took it and threw it and boy did I have pain. It was a shock instantly right to my neck. After that my kids and I went for a walk but I felt pain the whole night. So I am also worried that by doing something stupid cause damage somewhere. Something is wrong because I shouldn't be in so much pain. Everyone else sees it because I'm all hunched over and just can't move.

I see the surgeon tomorrow and also my pain management doctor. The meds just don't even seem to be working anymore so now what? I'd like to detach my arm and head. I think that's the only solution at this point.

Sorry for all the depressing news but I hope everyone has a great day

Momz

Oh Momz, I'm so sorry. I hope the pain mgmt Drs get you adequate medication to quiet these nerves long enough for them to settle down after this surgery. Umm throwing motions = BAD. no-no sweetie. you need 2 months of rested body and babying your condition. 2 whole months. Maybe a year before you start feeling improvement - it varies for everyone. Just hang on and it WILL get better with your Medical team's help.

will keep you in my prayers.
Anne

Hi Momz....

I am so sorry for all the pain your going thru. It will take time to heal I'm sure.

I too am going thru some severe pain with a frozen left shoulder and nothing right now seems to help it but some intense therapy and by the time I get home I am so sore it keeps me up all night . I am feeling your pain !

But make sure you rest as much as you can. It will get better !

Hang in there...

Dolfinz

So sorry to hear about your pain. I haven’t had surgery yet myself, so I don’t have any practical advice for you. Just wanted to let you know I’m thinking of you.

I do recall discussion on the forum in the past about nerves going through a phase of “acting up” in response to the trauma of the surgery. (Anne refers to this in her post.) And it sounds as though you may have had extensive work done since you had so much scarring. Hopefully your surgeon and pain doc can reassure you that this is an expected temporary response to such extensive surgery (?) and provide serious relief to get you through this difficult period when you see them today. Best of luck, and please keep us posted.

hang in there Momz. Life will be peachy again soon. Please let us know if your doctors helped you figure out what you can do or take to lessen your immense pain. Do TOSers get hooked to an ice machine post surgery? I know many shoulder procedures do? How long has it been since your surgery? Wishing you a calm and relaxing weekend.

Let us know if you find out anything from your appt today.

If nothing needing any surgical intervention is found - I hope they do rx some therapeutic PT for you { for pain relief- Ultrasound, IF stim, heat, LLLT, massage etc}
You could have some nasty trigger points {knots} that need a pro to work on.

But if this continues in the same way with no relief I would really think about getting a second opinion from another TOS doc.

I know it's very hard to do, but trying to de stress and relax as much as you can does help a little bit.
When you get tense and angry your whole body tenses up and your breathing gets shallow. That is the opposite of what you need to aim for.
Relaxation with deep diaphragmatic breathing - gets max oxygen in and a complete exhale gets rid of the toxic air
slow and rhythmic maybe listen to some slow calming music

here's some online sounds that you can set to which ever helps you best-
http://www.soundsleeping.com/

You are describing the same kind of pain I experienced from a Suprascapular Nerve Entrapment. This is rare but unbelieveably painful. I had this injury and the pain was 500 on a scale of 1-10! If everything else has been ruled out, have your doctor look into this. My EMG's were negative and my surgeon at Hopkin's termed the surgery "speculative" but he freed the nerve and I was able to start rebuilding my life. If left untreated, this becomes a monster that can destroy your life, it nearly did mine!!!

Find a neurologist familiar with this and pursue it. Mine literally blew the dust off a manual and located my symptoms, that's how rare it is, but if you have it, it's nothing to play with. Get it checked.

It is so very hard to be in so much pain. I have had TOS for almost two years and they are looking at doing another surgery as a last option. My doctor is from Denver and he says this is the last thing he thinks that could maybe help me After that its pain management and disability he says. I am only 23 now and the pain is always terrible. I am in nursing school and fighting my way through. Just don't give up on yourself or your doctors. I really think that they try to help us, its just as hard on them as it is on us, they don't want to see us suffer and I believe they want to help. Best of luck to you when you see your doctor.