not doing well
 

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

rest, ice, pillows and more ice
 

:eek: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.
:hug:
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 ! :hug:

Hang in there...

Dolfinz

Hi Momz
 

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. :hug:

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/

Hey Momz.....I haven't been here for awhile. I'm so sorry to hear that your pain has been so bad. :hug: I hope that the pain doc was able to help, but I'm worried that's not the case as you have not reponded in this thread with an update.

I don't mean to pry, but was the spat with hubby an isolated thing or ongoing issue ? I ask because I know that my own marital difficulties add stress that make my pain even worse. If you need to chat, my email is finztotheleft13@yahoo.com

Wishing you relief

Hi everyone,

I am sorry it took so long for me to post a reply on here but I was down in the dumps and then my laptop cord caught fire. I can't use the other computer at all because I can't hold my arm up tight so I need my laptop. The laptop is an old one and the battery doesn't hold a charge and the cord was breaking for a while... but then one day it started smoking so I had a problem. We had to order a new cord and wait for it to come in the mail so now I'm back up and running! woohoo!

Well here is my update on how things are going... I saw the surgeon on Friday last week he was disappointed but still feels as though I will be able to recover from this. Maybe not completely but at least a lot better than I was prior to surgery. He told me that some people have 100% success right after surgery and others can take up to two years. The other one is some don't recover at all and have permanent nerve damage. I fall into either one of those categories so either it's going to take a long time or not happen at all. He was hoping that I would have instant recovery but that doesn't seem to be the case. I told them that I was in worse shape than I was prior to surgery and he could actually see that the appointment. He said I looked a mess and in a lot of pain. He is now sending me to physical therapy and I have a therapist all lined up who is a specialist with TOS. They are both hoping that some therapy will help. He told me that the numbness that I'm having is normal and should get better. I also saw my pain management doctor the same day and she said the same thing. She told me that basically what happens is that the nerves go into hibernation after the surgery. This is a major surgery and affects a big bundle of nerves and he had to move all of them and free up all of them. All the nerves were encased in scar tissue and held down by the scaling muscles. She said his report was very thorough and things were a real mess in there and it looks like he did a good job. She said it was quite extensive work and is not surprised of my symptoms at this point. Also there are surface nerves all around the area and were cut during the surgery. It takes time for them to heal as well but sometimes they don't heal completely. We don't know what'll happen yet. All we can do is hope for the best.

I have to say I am feeling a little bit better now since my appointment with her on Friday. My doctor told me that I was only on one third of the Neurontin dose and I could definitely take more to help with the pain. She started me out on the lowest dose and has been playing around with it to see what works especially due to my reactions and allergies. The Neurontin seems to really be working and I don't have any side effects from it. And the world to have something that works and I really wish I would've had it prior to surgery. She increased my dose to 600 mg three times a day. I have 300 mg pills so I can even take more if needed in between the doses. The maximum doses 3600 mg a day. She has also kept me on the Avinza which also works because I can tell when that wears off. I take that every day in the evening before bed because it helps me sleep and then I'm good for most of the day (the following day). I can definitely tell when it wears off and it's a different pain than the nerve pain. I can tell when the Neurontin wears off but I try o keep it going so it doesn't wear off because the pain is excruciating! Also she upped ibuprofen dose to 600 mg. I can also tell when that wears off. That really helps with the aching and the swelling in my neck around the incision. So to say the least with all these meds I think things are under control at this point. I am actually happy for once because I can go through the day without dying in pain! I still have just a slight pain but I have actually been able to hold my head up straight and moved my arm which I have never been able to do since surgery. It's a great feeling and I feel as though I may have some success. Last night my medicine wore off and I fell asleep on the couch.. when I woke up I cried... I realized I'm not better yet. Basically I was told that the nerves are really ****** off and could possibly be damaged permanently but maybe some therapy will work. I have noticed though that my right eye and vision has been much better along with my hearing so it's a definite that the nerves were pinched to those areas and have given me a relief since surgery. I am happy about that because my vision was really bad and my right eye had so much pressure it was terrible.

Things are better now with the hubby... we had a big blowout and I am a bit annoyed with with him lately. I need a break and a vacation but surely can't afford one. It's one of those things that if I can't do anything... neither can he. He sits on the couch and does nothing because I sit on the couch. He can't seem to do work around the house because I can't be involved. He will admit to it but it's obvious. It really ticks me off. I have a lot of issues with him but every time I try to bring them up he gets ****** and starts an argument. Unfortunately he's one of those that is always right and I'm always wrong. It truly bothers me but I have learned just to do my thing and shut up about it. I can't confront him with anything because it goes nowhere other than a big argument. I am now frustrated and have decided to find things to do on my own which isn't much at the moment. I actually took a long walk yesterday and it felt great even though it was cold outside. It started snowing on my way home but I felt good and it was nice to have some fresh air and some exercise. I walked to the store and just browse around and talked to a few people... took my time... and then walked home. I was actually in good spirits by the time I got home even though I was a bit tired. I am tired of sitting on the couch doing nothing. I have decided I will get out and walk except for like today because it is freezing out there!

I have also decided to be a student and take college courses online. It is something I have always wanted to do. In high school my parents told me that a woman's place is at home the married and having kids. I was told no way about college. I was upset about it but couldn't afford college and I guess I listen to my parents and got married at 19 and had kids. It has always bothered me about not going to college. I love being a mom but I also enjoy working and want a career. I am tired of just having a basic "office job". I want more for myself and my family. I applied for financial aid and it's all ready to go.... I am going to start working towards a bachelors degree in business management/leadership. I have many ideas and goals and hopefully things will work out for me eventually. The bad luck has got a run out sometime.

I'm signing off for now... this Dragon software works great! I could never have typed all that. I hope everyone else is doing well... and I've been thinking about all of you especially the other postop Tos'rs. Johanna... hope you are doing well after your recent surgery. Been thinking about you as well. I really appreciate all of your concerns and well wishes. I am so glad to have all of your support... it really helps.

Momz

:hug:momz- i am REALLY HAPPY that you got such a good response from your doctors, only hurting for you that it took so long to get the help.

next time, for your sanity, please don't wait so long, ok? if you feel that awful, something is probably wrong and your doc should be able to help!!!

i am feeling better...just stiff, sore, and all that other post surgery stuff like post anestesia hormone mumble jumble. It really plays with my ability to stay happy, but at least i know it will pass. i was a little blue yesterday and this AM (when i dropped a full glass jar of spaghetti sauce on the floor *sigh*) but plan to just let it ride for today and hopefully it will lift tomorrow.

i hope you can find a way to communicate with your hubby- remember that he is hurting, too- having lost your company, good mood, and help. sometimes we just have to give our spouses the soundign board that they rpovide for us when we are hurting. Right now when you are feeling a little better might be a great time for that.


My hubby always thinks he is right, too, and he is a debater. i HATE debating...can I say that again...i HATE DEBATING!!!!! AAARRGHH, He HAS to be right and he will argue a point until the cows come home... it makes me want to punch a wall more often than not. However, i have learned that sometimes instead of taking the bait and arguing back and forth with him it is better to just not get into it and walk away. He is classic for telling me that he won't talk once i get agitated. When it happens he walks away. SO when he starts debating something that i don't want to debate, i just walk away now and politely explain that i didn't really want to debate whatever it was, just wanted to talk to him.

we have been married 5 year, dating for three before that, and it took me until this past winter to really be able to do that well. It is never too late.



In any case, i so so very happy to hear that you are doing better, and i really hope it continues for your sake. Keep us posted.

Johanna

We have been seeing a family councellor, and he keeps repeating that when I got injured the FAMILY got injured. He tries to get me to see hubby's pov. Men are fixers. They cannot fix this so they get angry, sullen and withdrawn. I found that until I acknowleged that this injury hurt my whole family, all we did was fight. Now we seem to be on better ground. We communicate all the time. He knows I hurt, so I try to not mention the pain to him. If I need help with something I just ask for it. I don't say I can't do this because I hurt. He doesn't need to be constantly reminded.
I can honestly say that things are getting better and better for us now that we see each others hurts (not just physical).
It is 17 years tomorrow, so we must be doing something right.
My prayer for you all is to get to that same place in your marriages. Build a strong house on a strong foundation, and not even TOS will rock your world.
Trix

Momz- i'm sorry to read about the troubles you've been having. I hope that your recovery improves, and that you start to feel better. I'm sorry about the hubby too... us men can be difficult at times. I have trouble just walking away from a "debate." I think that Trix made a good point that the injury is family-wide; at least for me tho, the problem is how do you deal with that? How do you get your family members to a better level of understanding?

Rest
 

Momz,

I'm not remembering exactly when you had your surgery, but when I had mine the doctor told me that is could be up to 9 months recovery.

Another words, he was saying he didn't want to hear that pain was still there until after 9 months and then we could say if the surgery worked or didn't.

He was so right. Nine months to a year.....and what a difference.

After that surgery, it is rough. There were many times that I felt, it just didn't work, but in time it did get better.

Keep your chin up and rest as much as you can.

Peggy

Shoulder Nerve Pain
 

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.

dads point
 

i am a guy been hurt for 17 years my wife of 20 years got hurt when she was in the canadian military in bosnia herniated disk 7 years ago. men want to fix things women want to talk about things .. i have been a stay home dad all these years . it is more painfull to see my wife hurting and not be able to fix it than the pain i am in .. i would take her pain not because i would be a good guy .it is just so much easyer to be in pain than to see someone you love in that condition ... how my wife has been able to stay with me, when doctors could not figger out what was wrong, sometimes i just want to get off the pain train, so i look at my wife and 4 kids and think if she gets worse who would look after them .it is nice in a way to know that i am not the only one who feels this way sometimes thank you .

I am so sorry:(
 

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.