[bigpede]

occlusions

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been diagnosed with tos and had rib ressection 3 weeks ago. what i am now curious about is more specific information on occluding vessels. after the usual tests that we have all endured, plus a few, it was discovered that both of my internal jugular veins were completely occluded in many positions, but always when arms were elevated. the extreme bulging and pressure in my head, face and neck during movement being the reason i sought treatment to begin with. having obvious occlusion of right and left subclavian veins the decision was made to do the rib ressection on my right side. now having had the surgery my right side my right arm has none if any symptoms at all. now for the bad part. my right phrenic nerve was [damaged] which has my diaphram elevated and paralyzed on the right side which means im breathing on one lung and sleeping with a machine to help me breath.sounds terrible huh, it gets worse. I still have to resolve the issues with the left side. and the problems with pressure that is unbearable still occures in my head,neck and face with any leaning forward or raising of the arms.I'm not making light of tos, i know how it can change someones total thoughts of life itself. I had never heard of tos,i didnt know that the way I've felt for years had a name. Now im in deep, I cant risk left side surgery, atleast not until i get something fixed with this nerve. a repeat would mean a respirator, and still the possibility of unresolved head problems. a machine at night is bad enough. I'm sorry I'm rambling but I'm stuck and frustrated and worried and yes a little scared. My dr. said that the condition with my jugular veins was so rare he or any of his partners had never encountered it before. someone please tell me that they have been through this and it will all work out just fine.

[astern]

God Bless you Big Pede! This sounds very scary! May I ask who the surgeon was who did the rib resection? I think I recall one poster here having pherenic nerve damage... hopefully someone will come by and comment soon.

Will definately keep you in my prayers,
Anne

[Horizontal One]

Hi Bigpede

Iam sorry but by trying to catch up I did not see this post until now..so my apologies. Unfortunately I had just written a reply but because I had to answer the phone I had to re logon and hence my long message is now in cyberspace so apologies asthis will be shorter - forgot what I had written..but this is more or less it.
As with the last message. I also have phrenic nerve damage. Total paralysis of the left and partial on the right. It is not thought to be, because of surgery. Just as an update I had surgery originally to both sides many years ago, three or so years ago I became symptomatic my left side was re explored. There were some issues addressed at the time, like a stenosis. Sadly, my pain did not abate. Only when a block was attempted on the right side did my diaphragm issues become apparent. I went into respiratory failure required CPAP. I am short of breath and my respiratory rate is 32 plus and I am on oxyen and as the warmer weather is here find much more SOB and chest heaviness. We have so many striking similarities so please do not feel so lonely. There are also so many wonderful people on the TOSforum that havae a wealth of information, support and so on. They have been an invaluable to me invaluable. I too like you are in limbo and facing further investigation by another specialist. I think a lot of the problem may be all probably is not knowing or just waiting and not knowing.
Whilst I appreciate the CPAP you have is not pleasant. Can I just ask does it help you have a better quality sleep?
Let's face tomorrow together, along with our TOS friends.

I will end now, by just saying that I hope I hope that with each day you will find a little more pain relief and some more answers.
Take care, chat soon.
Regards
H. x
BTW have you had conduction studies of your phrenic nerve done?

[bigpede]

Hi Horizontal One Thank you for your response. My nerve damage became very apparent shortly after surgery. I really didnt notice anything while I was still laying flat but the next day when I sat up I got the sensation of my chest not having room to expand kind of like being at the bottom of the pile in a football game but the people wouldnt get off. After about 2 days of severe loss of breath with any kind of movement and I do mean any kind, I couldnt even adjust my body in bed without what seemed like an asthma attack, they sent me for x-rays. It showed the elevated diaphram stuck in place. I later found out that the dr. told my girlfreind that he had taken x-rays before I had awoke from surgery and discovered this problem.I am somewhat irritated that it wasn't mentioned until it was clear I couldn't leave the hospital in that condition.The machine I use is called a bipap, it is supposed to assist inhaling with air pressure which supposedly will stimulate the nerve and help it heal faster. My breathing has improved but i think it is just my body getting used to one lung. There is still no movement in my right lung or diaphram. I havent had a conduction study done but I have a appointment tuesday with a pulmonoligist and a follow-up with the surgeon who operated on the same day. As for the quality of sleep I get, I havent slept all night in probably 4 or 5 years but I do get sleep an hour or two at a time with the bipap. I had surgery on wed. and did not sleep until saturday night when they finally set me up with a bipap in the hospital. Enough of my troubles,I hope you get some more relief from your pain. I did notice with the warmer weather that i dont use the bipap heater obviously, but I do use the humidifier on it. This seems like a wonderful site. It helps alittle just to vent some. Thanks for your time and concern. Take care of yourself and hopefully chat soon. I'm not real good with working around with this computer so p-lease bear with. Bigpede

[ocgirl]

Horizontal,
If your breathing problems were not caused by surgery ,
do you mind if I ask how your doctors think that your phrenic nerve was injured ( I hope I'm using the right termonology here)

Bigpede,
I'm glad the you can get a little sleep on the Bipap.
When I was hospitalized for an acute asthma attack and aspiration pneumonia they put me on the bipap machine. I was barely conscious and kept trying to take it off.
When they said if I didn't leave the bipap machine alone that they would put me on a ventilator- it woke me up enough to leave the bipap machine alone.

[Horizontal One]

Hi
Sorry I willl reply to my phrenic nerve problem tomorrow. PC went a bit wierd and also been off.
Chat tomorrow.
Hx