[Joanna81]

Hi,
It's been a while, but I'm back again...
I'm now 17 months post op on one side(cervical rib & first rib removal ) & 13 on the other(he said I had a rudimentary rib here).
Symptoms are awful & seem to be worsening.
I fell and broke my fall(& my wrist) with my left arm 11 months ago, which I don't think has helped matters.
I also have a 9week old baby, which is deffinitely not helping! Having a toddler & small baby is challenging at the best of times.

I have my first physio appointment coming up, but not sure how knowledgeable they will be as it is just an nhs(uk health care) one & I can't really afford private at the moment.

When I last saw my surgeon he asked if i felt the surgery was sucessful(no) discharged me & told me to tell my gp to refer me back to him if I needed after the baby was born. I felt a bit abandoned by him to be honest. I don't know if I still need to be seen by a vascular surgeon, & if I do should I see him again? Or do I get a refferal to someone else? Someone else wouldnt have seen what was going on in there first hand, notes can only tell you so much!

Does anyone have any advice on making every day life more manageable? Things are really tough & I'm struggling with almOst everything! Any useful aids? I am struggling to look after two kids along side cooking & cleaning.

My relationship is hanging by a thread. He keeps saying he had shoulder surgery(to reattatch a partially detached ligament) & I managed, which is hurtful & frustrating. I don't think his surgery is anywhere near the scale of mine & he only had one shoulder done??

Most everything causes pain & symptoms, the thought of living like this for the rest of my life is a very hard one the thought of more surgery is just horrific. Recovery was pretty tough.

If something hurts, should I stop? Or should I push through at this point?
I seem to have lost an amount of fine motor movements, can these be regained? I noticed it tonight when I did some macrame for the first time in forever(which alsO caused pain that still hasn't subsided). I would have thought it would be a good physio type thing to do?

Some weird symptoms I have...
When I bend over I get pressure in my head, kinda like someone has their hands round my neck
I get crampy pain in my lower ribs, could that be related?
I don't seem to have the same lung capacity anymore? I fatigue easily.

Anyway, any advice or suggestions would be very much appreciated.
Thanks

[MarketRisk]

hi. i'm so sorry to hear that you are having such a tough time of it. and with two little ones. and i can empathise re relationship front. are you at pain clinic? can social services help?

[Jomar]

Are you doing any home or self care therapies?
Postural work?? like keeping the chest open and the head & shoulders in line w/ body and not forward?

pics of easy ways in my profile album.

Sometimes surgery causes internal scar tissue/adhesions, or even before surgery there can be some.
Usually won't show on imaging, was any thing like it mentioned in surgery notes?

I don't think I would go back to a surgeon that writes you off esp when you are still having issues. to me it means they don't care to follow up or try to help more..
Might as well give another a chance if #1 didn't do a best job that he could have, or missed something... #2 might be able to fix or help??

but sometimes surgery only can help a little and pain is still there....

For physio I hope they will work on pain & symptom reducing first before anything else.

If they start pushing you to stretch or strengthen too soon it may cause a delayed pain & more symptoms.

[(Broken Wings)]

So sooorrrryyy you're in this bad situation. Just been posting a lot on mspennyloafer's thread .

Can you find that? I'm on iPad and don't not how to copy and past links right now.

There's lots of tips for you,but you have too much t handle by yourself.

Is it possible for a family member come help you out with the precious babies.

I think it will take some time before you're going to be able to do it on your own.

Sometimes a non-TOS suffer just don't understand. We do here at NT...

[Joanna81]

Originally Posted by MarketRisk

hi. i'm so sorry to hear that you are having such a tough time of it. and with two little ones. and i can empathise re relationship front. are you at pain clinic? can social services help?

Thanks
I have just finished the forms for the pain clinic, so we will see what they have to offer.
Not sure about social services, I just read in the paper that the funding has been cut... I am going to speak to my health visitor when she is next round.

Originally Posted by Jo*mar

Are you doing any home or self care therapies?
Postural work?? like keeping the chest open and the head & shoulders in line w/ body and not forward?

pics of easy ways in my profile album.

Sometimes surgery causes internal scar tissue/adhesions, or even before surgery there can be some.
Usually won't show on imaging, was any thing like it mentioned in surgery notes?

I don't think I would go back to a surgeon that writes you off esp when you are still having issues. to me it means they don't care to follow up or try to help more..
Might as well give another a chance if #1 didn't do a best job that he could have, or missed something... #2 might be able to fix or help??

but sometimes surgery only can help a little and pain is still there....

For physio I hope they will work on pain & symptom reducing first before anything else.

If they start pushing you to stretch or strengthen too soon it may cause a delayed pain & more symptoms.

I hadn't really been doing much myself... Trying to be posturaly aware, but I don't think I was actually helping... I didn't know what to do myself...
Sorry if I'm being dumb, but which pictures? I will have a look

The physio to be honest didn't seem too positive and I got the impression she was thinking that it would be back to the surgeon for me...

She told me she could see my pecs and traps were very tight and to try and be aware of my shoulders being too far forward and to bring them back. It is so natural to be in that position though and having them back is not as comfortable! But I will work on that.
She told me to stand in a corner with my arms against the wall and push into the wall, to push my shoulders back. I did that today and my hands went white and numb and that was with my arms at a low angle fun
She also wants me to try and stretch my neck muscles gently, ideally after applying heat(which she wants me to do regularly). Basically just bringing my ear towards my shoulder. I didn't get the impression she was particularly experienced in my sort of case... She had to go off and speak to someone higher up than she was after the questions & examination to see what to do.
Next time she wants to use heat and do some stretching.

I am a little concerned about scar tissue... I am hoping that it isn't the case! On the one side particuarly it seems swollen under my collar bone. It wasn't straight after surgery but developed after a couple of days and hasn't gone down since. I have no idea if there was anything else in there! He didn't mention anything that I remember, though he did go on leave for 9 days straight after my surgery I don't remember talking to him in the recovery room, though I know I did (one of the reasons I was in there so long! No one else wanted to take the drain out or discharge me while I still had output into the drain), I haven't seen my surgery notes. Is it worth me requesting them? He was quite positive though that the outcome would be good, as he said the nerves were very tight over the rib

If I need to be referred back to a surgeon I am going to request someone else(even though he was recommended as he has done so many of these surgeries). If not only as I felt abandoned by him, but the care I received post surgery was really awful and the thought of being back on the thoracic ward with a couple of the nurses there is not a nice one. I was seriously contemplating a complaint at the time, but I just didn't have the energy.

Sorry I have gone on for so long... I don't often get to outpour... Especially to people that understand

Thanks for your advice and input

Originally Posted by (Broken Wings)

So sooorrrryyy you're in this bad situation. Just been posting a lot on mspennyloafer's thread .

Can you find that? I'm on iPad and don't not how to copy and past links right now.

There's lots of tips for you,but you have too much t handle by yourself.

Is it possible for a family member come help you out with the precious babies.

I think it will take some time before you're going to be able to do it on your own.

Sometimes a non-TOS suffer just don't understand. We do here at NT...

I will have a look at that thread, thanks

I don't have any family near by & even when I did they were not much help as they all worked so much. I hate imposing on people too. My dad takes my toddler for a few hours every couple of weeks. But to be honest I feel like an imposition for it! He has health issues himself and works too much, so I don't like to take up his day off. I know he can say no when I ask, but I also know it isn't something he is very good at saying! He also never offers, so I know he can't actually really *want* to or he would offer. Or when he is busy when I ask he would say well I'm busy today, but I can on my next day off... Does that make sense?

I just kinda have to get on with it. But I am not the only one suffering for it. I know my daughter needs more than I feel able to give at the moment and it causes me so much guilt. I can't even get out of the house by myself!
We are contemplating moving near my partners sister... She is young and healthy, only works mornings and adores the kids and would be more than happy to help! We will see.


Sorry again I have rambled on for so long... My shoulders won't thank me for it! But gah I just don't have anyone to talk to really. People that don't live in chronic pain just don't understand. It impacts so much more than just the areas in pain.


Any recommendations on computer mice? I am really struggling to find on that doesn't cause me pain!

Thanks all

[Jomar]

Look at the ball one & the foam roll one-
http://neurotalk.psychcentral.com/album.php?albumid=422

I prefer these kinds to open the area vs arms up against the wall as my bloodflow still gets cut off too.
let gravity do the work for you so you can relax and let the body change slowly

and if those seem to be too much for you , just lay on the floor in the corpse yoga pose and do the diaphragmatic breathing
then when that is easy and totally comfortable for you then roll up a towel to use like the foam roll.


If only 5 mins a day many x's a day is what is good for you then don't push for more until no symptom are increased.

Oh and explore Sharon Butler's website for good tips & explanations about sticky tissues.
www.selfcare4rsi.com

[kellysf]

Joanna,

I sometimes get sharp pain and a grabbing feeling at the bottom of my ribs. Following my surgery, I also had some diaphragmatic disfunction because the phrenic nerve was stretched. This was supposed to resolve over time. I was told this is a rather common side effect of the surgery. You may have experienced something similar which might have left you feeling short of breath.

Good luck,
Kelly

[(Broken Wings)]

Originally Posted by kellysf

Joanna,

I sometimes get sharp pain and a grabbing feeling at the bottom of my ribs. Following my surgery, I also had some diaphragmatic disfunction because the phrenic nerve was stretched. This was supposed to resolve over time. I was told this is a rather common side effect of the surgery. You may have experienced something similar which might have left you feeling short of breath.

Good luck,
Kelly

Very possible. Thx for sharing this info.

[(Broken Wings)]

Originally Posted by Joanna81

Thanks
I have just finished the forms for the pain clinic, so we will see what they have to offer.
Not sure about social services, I just read in the paper that the funding has been cut... I am going to speak to my health visitor when she is next round.




I hadn't really been doing much myself... Trying to be posturaly aware, but I don't think I was actually helping... I didn't know what to do myself...
Sorry if I'm being dumb, but which pictures? I will have a look

The physio to be honest didn't seem too positive and I got the impression she was thinking that it would be back to the surgeon for me...

She told me she could see my pecs and traps were very tight and to try and be aware of my shoulders being too far forward and to bring them back. It is so natural to be in that position though and having them back is not as comfortable! But I will work on that.
She told me to stand in a corner with my arms against the wall and push into the wall, to push my shoulders back. I did that today and my hands went white and numb and that was with my arms at a low angle fun
She also wants me to try and stretch my neck muscles gently, ideally after applying heat(which she wants me to do regularly). Basically just bringing my ear towards my shoulder. I didn't get the impression she was particularly experienced in my sort of case... She had to go off and speak to someone higher up than she was after the questions & examination to see what to do.
Next time she wants to use heat and do some stretching.

I am a little concerned about scar tissue... I am hoping that it isn't the case! On the one side particuarly it seems swollen under my collar bone. It wasn't straight after surgery but developed after a couple of days and hasn't gone down since. I have no idea if there was anything else in there! He didn't mention anything that I remember, though he did go on leave for 9 days straight after my surgery I don't remember talking to him in the recovery room, though I know I did (one of the reasons I was in there so long! No one else wanted to take the drain out or discharge me while I still had output into the drain), I haven't seen my surgery notes. Is it worth me requesting them? He was quite positive though that the outcome would be good, as he said the nerves were very tight over the rib

If I need to be referred back to a surgeon I am going to request someone else(even though he was recommended as he has done so many of these surgeries). If not only as I felt abandoned by him, but the care I received post surgery was really awful and the thought of being back on the thoracic ward with a couple of the nurses there is not a nice one. I was seriously contemplating a complaint at the time, but I just didn't have the energy.

Sorry I have gone on for so long... I don't often get to outpour... Especially to people that understand

Thanks for your advice and input



I will have a look at that thread, thanks

I don't have any family near by & even when I did they were not much help as they all worked so much. I hate imposing on people too. My dad takes my toddler for a few hours every couple of weeks. But to be honest I feel like an imposition for it! He has health issues himself and works too much, so I don't like to take up his day off. I know he can say no when I ask, but I also know it isn't something he is very good at saying! He also never offers, so I know he can't actually really *want* to or he would offer. Or when he is busy when I ask he would say well I'm busy today, but I can on my next day off... Does that make sense?

I just kinda have to get on with it. But I am not the only one suffering for it. I know my daughter needs more than I feel able to give at the moment and it causes me so much guilt. I can't even get out of the house by myself!
We are contemplating moving near my partners sister... She is young and healthy, only works mornings and adores the kids and would be more than happy to help! We will see.


Sorry again I have rambled on for so long... My shoulders won't thank me for it! But gah I just don't have anyone to talk to really. People that don't live in chronic pain just don't understand. It impacts so much more than just the areas in pain.


Any recommendations on computer mice? I am really struggling to find on that doesn't cause me pain!

Thanks all

I avoid mice, entirely. Working on laptop, with trackpad, external monitor raised to comfortable eye level. you can get full-size keyboards, with track pad...

I do have to use them on one sys, but I don't use it too much.

Oh. and if a key, like overstrike, bugs me, I remove it from my keyboards

At one time, I had placed a long dressing mirror at the side of my workstation. It was my posture police!!!

Did I mention Lidoderm patches 5%.

They are a lifesaver.

I really was suggesting some family member for you, but more for our kids.

Don't feel guilty. I know you can't do a lot of necessary things for them. Honestly, I don't know how you're doing what you're doing. You're made out of though stuff. If I had small children, I would have to have help. Man, just a few years ago, I couldn't handle all you're doing.

Just mealtime is hard on TOS. Paper plates and cups, if possible.

[(Broken Wings)]

You don't have to apologize for lo png posts. Whatever it takes. It is what it is.