enzh-CNfrdeitjaparuestr

Notice

The forum is in read only mode.

Welcome, Guest
Username: Password: Remember me
24 Mar 2019
Forums are now in read only mode. Please read more to see alternative options.
Read More...
Past and present, we all want to hear your story.

TOPIC: Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 10 months ago #5654

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
Hi,

This week brought a lot of changes.

End of last week I noticed that there was something wrong: the food that I usually like no longer tasted good, I no longer enjoyed the things I usually like, each time I took Tramadol I felt no pain but I did not feel better anyway, I lost my appetite, etc. plenty of things I never had before. I just could not recognise myself. So I searched online for potential explanations. I found that thoracic surgery was at the top of the list of surgeries that cause depression... :-( I thought, "WTF!?! as if I need depression on top of everything else...".

I thought let's try to fix constipation as it might give me courage to deal with the rest. I was pretty sure constipation induced the headaches and a sort of 'floating low-grade nauseous feeling' I've had for a while. So I stopped Tramadol. Cold turkey. Constipation disappeared within 36 hours. I felt terrible nonetheless for a total of 2.5 days moaning with pain and feeling terribly low. But to choose between constipation and pain, I prefered pain, at least for the time being.

And then came the third day. Boom! It was GREAT. :-) All of a sudden the depressive mood completely lifted, the headaches were gone, I could eat again and enjoy my food. :-) The pain was still pretty bad. The following 3 nights I took half a tablet of Tramadol (1/2 of 50mg) to sleep. I waited until I was groaning with pain before taking it. Yesterday night I took nothing. It is still very painful, but I feel so much better. I'm positive again. Tramadol was messing up with my brain. I initially believed that my chest was completely disfigured. I no longer think so. It is still not great, but I does not qualify for the next freak show.

So the plan now is to make the best with the residual pain and do more breathing exercises. Now when I blow my nose I no longer have the feeling that my rib cage is going to crumble. It seems something has healed inside and that things are holding together. Before that each time I blew my nose I had to hold my rib cage with my arm (plus the bandage of course) and blow one nostril at a time... Strangely enough last week I had to sneeze 10 times a day for a couple of days. Probably more than the amount of sneezing over the last 30 years. I concluded it was definetly a conspiracy against me (undoubtedly a punishment for thinking about using the lifts/elevators in Berlin :D ), but it made me realise my rib cage was holding. Having deeper and longer breaths is now possible.

I do not know whether it is related to the opioids, but it seems the sensitivity is slowly going back on the left side. The right side is still completely numb and it is where all the pain is.

More later :-)

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 10 months ago #5655

Definitely from opiates. I had exact same issue after my 2nd surgery. I was nauseous and in a very dark place. Once i stopped all of the opiates and went to 800mb ibuprofen 3x a day, I felt sooo much better mentally. The pain wasn't as bad as the side effects of the opiates.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 10 months ago #5659

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
I agree. What is aweful is that depression sets in very insidiously. If you never had depression before, you don't understand what is going on, especially as you just had surgery. So it is "understandable" not to feel great. And there you are, trapped in a situation you misjudged.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5686

  • Fish
  • Fish's Avatar
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 179
  • Thank You's Rec'd: 37
I was given 3 bars exactly 1 year ago by Dr J , age 42 haller 13.
Sounds like your in a little more pain than I was at this point. We all have different pain tolerances as well. Just to let you know I still feel like I'm improving, so just keep walking and moving, if it hurts then stop and rest. It's definitely a long recovery.
Stretch and walk at this point.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5691

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
Thanks for the encouraging words :-)

This week was my 2-month post-op. Glad it is behing me :D

I keep doing my stretching exercises. I have been very mobile since almost day one, being able to sleep flat on my back, raising my arms, getting up from a supine position, lay flat on my front, etc. I feel very lucky especially as I read many patients have to sleep on a recliner for months or just cannot get up on their own. I never forced through pain though. I keep moving even when it is uncomfortable, but when it starts hurting I stop. I keep moving my arms in all possible directions as it seems to distract my brain from the pain for some strange reason. My pain has not really been related to my movements, it is a deep pain in my back and sides (especially the right side that has been painful since the second I woke up from surgery).

I now can do my breathing exercises without pain. I do them slowly so that I can expand my lungs slowly and detect whether pain is coming or not. Again I keep going until it becomes uncomfortable, but never continue when it is painful. Schaarschmidt told me to do the breathing exercises despite the pain, but I never thougt it was a good idea. So I stop before.

Earlier this week I had a great night. I could sleep deeply, I could stay on my sides. I had very vivid dreams that night. I knew this is a sign my body is experiencing some changes (this sign is not new, I have a chronic illness and I noticed over the years this sign correlates with an imminent change, usually a good one). Indeed hours later, my sides started to itch. A itching like I never had before. I must have been very comical to watch as I was trying to calm it down :D 48 hours later the sensitivity to my left side came back (say 80%) and I feel it is my body again! :-) Perhaps just 30% on my right side. And 40% on the skin of my sternum. I was over the moon. For some reasons, my brain did not recognise that my torso was still part of my body. Putting my hand on my side was extremely unpleasant causing me to feel disgust and even nausea. So it seems this problem is slowly healing. I still cannot imagine to touch my sternum where the dent used to be (it gives you an idea about the repulsive feeling my brain has about this numb area).

The nerve endings are obviously growing back. But there was a trick :-) With the nerves back came a rebound of pain! :-/ Not a big one, luckily. So the following nights were more painful.

I still have the feeling that my organs are dangling inside my rib cage. The feeling tends to decrease when I do my breathing exercises, which is one of the main reasons why I do them :-) When I eat now I have to sit straight. Before surgery I could eat and lie down without any problem. Now I have the impression that my stomach remains "open". I do not know whether I have a reflux because it is not painful, but I can definitely feel that the food/water is "travelling" in my oesophagus.

More later.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5705

Anna, thank you for posting. I'm a 45 year old woman, too, and I had the Nuss at Mayo in Arizona in April. I had multiple complications, one of them is that I experienced horrible depression and mood swings from gabapentin. I felt so much better off of them. I was doing well up until the 3 L pleural effusion, and the rib fracture....and then I had to go back for rib fracture repair, which became a modified Ravitch because Dr. J debulked the cartilage.

Then they found the breast cancer.

I'm glad that you sound like you're feeling better. I feel like I can breathe much better than I could, but I'm not running and sprinting like many of us have experienced. So don't feel badly that you're not bouncing back like those among the community who are in their 20s and 30s.

I do not regret the surgery. I have the gift of having my left lung open for the first time in my life.

Best of luck to you. You're not alone.
/michelle

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5708

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
Hi Michelle :-)

I feel so so sorry about all your problems. You are a very brave woman to go through all of this with such strength. Life can be very unfair. You will be in my thoughts. I hope you will fully recover soon.

Yes I do feel I am improving. Being able to breathe "so much" is amazing! :-) I stll cannot believe it is possible. Before surgery my goal was an improvement in my quality of life. Chronic fatigue syndrome is not about tiredness, It is a devastating metabolic/auto-immune disease that leaves patients homebound and bedbound sometimes for decades. If better breathing allows me to go out once in a while, to go to a store once a week or to go to the seaside once a year, then it will be a massive improvement to me. I do admire patients who run marathons, etc. But my situation is different and I do not compare myself with them. Yesterday I used the spirometer (the one with the 3 balls) and I managed to raise all 3 balls 12 times consecutively (I had to stop because I started to feel dizzy, probably hyperventilating). I was really glad! :D And in 3 weeks time I plan to go to the movies to see Passengers (a scifi movie with 2 passengers of a colonisation spaceship who wake up 90 years in advance). I look forward to it :-)

Anna

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5733

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
Hi,

The week was pretty uneventful :-) It seems each time I do my breathing exercises with the spirometer (3 balls) the result are more and more consistent each time. Before that some day I could do well and other day getting the third ball up was a struggle. I am still amazed at the amount of air I can breathe in :-) and all of this with the breathing exercises only. I would like to walk more but I am very tired and the weather is cold. The tiredness is now different from what it was after surgery. After surgery for a good 7-8 weeks it was a tiredness related to meds and later to the fact I could not rest properly due to pain. Now it is more like a deeper tiredness as if things are changing inside my body. Sleeping is easier even though turning on my side is still tricky business. My right side is still aching, and I now think this will be the case for many many months if not years.. It is a bit strange, that side is more painful, the scars heal slowlier than on the left side, the sensitivity is lower than it is on the left side. It looks like everything is "delayed" on that right side. I wonder whether a large blood vessel migt have been squeezed so that blood flow is restricted which would explain the slow recovery on that side. But I speculate.

I am now thinking about wearing my brace less tight or even take it off a couple of hours a day. For some reasons, this brace is reassuring. I have the impression it holds my entire rib cage and that without it the whole thing is going to crumble down :dry: :D I sneezed less this week so I am going to try to wear the brace really loose, and when the sneezing comes it can tight it very quickly. I think I caught a little cold, hence my extremely frequent sneezings. I also think with the brace off the slightly bluish mark on my skin when the lower bar is will fade away.

The food travelling up my oesophagus is indeed a reflux. But this week it was less a problem. It looks like my organs are slowly but surely finding their right place in my now super spacious rib cage. I am curious to see at the next x-ray how much my heart has shifted to the centre. I have less the feeling that my organs are dangling when I am walking. The arrythmia is also less severe.

I feel my bars very much. They are very tight. I guess now I am still a bit obsessed by these bars in the sense that each time I want to move my torso, I think "wait! slow... is it going to hurt if I do this? yes/no? perhaps another movement is better, etc." I guess with time this feeling will diminish.

More later. :-)

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5763

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
Hi,

The week was not too bad. It seems my sleep is more "stable". I still have big variations between good nights and bad nights, but it is less frequent now. The breathing exercises are fine. I even use them as a way to relax my muscles around my rib cage. It is quite effective. I still have some incomfort, but no real pain. And when I do, I just stop and try again later.

My rib cage is still adjusting to the force from the bars. Over the last two days, I've felt my flared rib on the left side trying to push out. I wear my bandage even tighter. At the same time my right shoulder was more difficult to move, and a vertebra was painful. So I increased the amount of stretching. I could feel things popping in my shoulder each time I moved it, but it was not painful so to speak. Now it is getting better. I guess it will stabilise for a little while before the next adjustment. I have now accepted the idea that my rib cage will take 2+ years to adjust to this new position (my correction index was 77% after all) and that these pains will come and that a lot of stretching will be needed.

I have the impression that my lower ribs are slightly caving in. I had noticed that before my flared rib started to be painful. However, I am not sure this is really the case. it is difficult to distinguish a real variation of the ribs from post-op swelling that is finally going away. Especially as it is symetrical.

This week I noticed the scars where the drains were are changing colour. It is no longer "angry red". Because sensitivity comes back, I am able to touch my skin again. So I use a cream to massage my sides. I don't know whether it is the cream, the massage or just the natural process, but it looks better :-) I hope over time the incision scars will improve too as they are quite long. My right side is still itchy and painful, which I am prettry glad about it strangely enough. But this is because I noticed that itchiness seems to be correlated to increasing sensitivity ;-)

More later :-)

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 9 months ago #5774

  • Anna
  • Anna's Avatar Topic Author
  • Offline
  • Gold Boarder
  • Gold Boarder
  • Posts: 248
  • Thank You's Rec'd: 41
Hi,

This week was good and bad.

On the good side, I can now do the inhaling breathing exercises with the triflow spirometer 4-5 times a day 15 consecutive times. The results are now very consistent. I succeed 95% of the time. I also do more exercises. To the stretching exercises with my arms I added 10 sit-ups twice a day, 10 push-ups (using my knees) and 10 squats. The scars heal and sensitivity is slowly coming back on my right side (the left side is pretty much ok now). I have now identified why I had that nauseous feeling when I touched my right side. I eventually recognised the feeling: it is exactly like motion-sickness! Don't laugh :D I read an article years ago explaining that motion-sickness happens when the brain receives conflicting information from senses. For example, you are in a driving car and your inner ear perceives motion, and at the same time you read a book and what you see is static. So the brain receives simultaneously the signal from the ear that the body moves and the signal from the eyes that the body does not move as the surrounding environment (the book) is not moving. Some people's brain ignore one of the signals and they don't experience motion-sickness. Other (unlucky like me :-( ) people's brain is unable to ignore one of the signals and the nauseous feeling sets in. I believe when I touch my right side, my hand tells my brain "ok, I touch a part of me", but my brain does not receive a signal from my torso saying "yep, that hand I know well has just pressed the flesh". A sensitive brain like mine has a tough time dealing with this :D , hence the nauseous feeling (by now you must think, "good grace, she is not a neurologist seeing patients" :D )

On the bad side, I hurt myself during my exhaling exercises :-( so I guess I have to wait a couple of days for the pain to disappear and resume exercises. So even almost 3 months post-op don't assume you can no longer hurt yourself. Probably the most dissapointing thing is that each time I go for a 2-km walk, I suffer from delayed tachycardia. I walk fine and then 8-10 hours later the arrythmia starts. It is often at night and I wake up the following day very tired. So I now put emphasis on my lung exercices with the spirometer rather than cardiovascular exercises like walking. I believe that I have to expand my lungs as much as I can so that my left lung becomes bigger and pushes my heart towards the center. All of this before too much fibrous tissue form around the bars and eventually stick the bars to the lungs and the heart. It will then be even more difficult to expand the lungs and push the heart. I obviously have a problem with my heart not being able to cope with exercises. It may resolve spontanuously later. Or not. In any event, it is disappointing as I really want to do more. I also have some new pain on my left side as if my flaring ribs are pushing out. So I am back tight in my bandage. It is a bit as if they are screaming, "someone left a bar here in the middle of the way, I don't like it and I plan to make my opinion known loud and clear". :-) I tried to explain that it is Prof S's fault. In vain. :D

More later

Anna
Moderators: ipectusRandy
Time to create page: 0.296 seconds
Cron Job Starts