[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

[Sea Pines 50]

well i finally went to wikipedia last night in my insomniac state and looked up the word "occlusions" so i could get a clue what you might be talking about. it's not just a term in linguistics, folks!

turns out i suspect that i may have that going on, too; the normal vessels being so blocked on the right sight has caused my external jugular vein to become enlarged. it was explained to me only in very basic terms (pedantic talking to child, picture it), as the blood being impeded (pun intended, sorry bidpede) in its normal route and having to find another course to take. hey, it seems you can't discuss this topic w/o making bad puns! should be listed as a sx...

gee, the constant h/a and neck pain i've had for 30 years makes sense now. thanks, doc. i think it also illustrates why so many of the top TOS docs are vascular surgeons. impeding bloodflow must be like trying to stop mother nature...she doesn't like it and you get a very angry and unhappy result. TOS that in yer pipe and smoke it!

i sent you a PM a couple of weeks ago, bigpede. now that i know you're in pittsburgh (fine city! sienna miller knows not what she speaks!), there's another doc i've come across in my recent travels over the internet in the wee small hours whom i'd like to give you just in case you're interested: Dawn A. Marcus, M.D., Assistant Professor in Departments of Anesthesiology and Critical Care Medicine, and Neurology @ University of Pittsburgh, Pittsburgh, PA. her address is: Pain Evaluation and Treatment Institute, University of Pittsburgh Medical Center, 4601 Baun Blvd., Pittsburgh, PA 15213-1217.

perhaps you're already familiar with the facility, bigpede, but in my experience it is invaluable to go there armed with a good referral. something about the way this lady writes makes me know she is not only brilliant but compassionate. i don't know your personal situation, of course, in terms of whether you already have a PM doc in place. it's just with this major blip on the radar for you with the phrenic nerve damage - and the underlying TOS still in the throes - well i wanted you to have more than one option. more than two, even. OK, three! PA is a great state for TOS'ers, isn't it!

i'm so jealous.

hope you are breathing better day by day, little by little. when you are feeling up to it. please let us know how your follow-up visit with the surgeon went.

cheers.

alison

[Horizontal One]

Hi

Now for my phrenic nerve....no problems after first surgeries many years ago. CXRs no problems and had CXRs over years and no elevation etc. Have no been symptomatic. Last surgery - Nerve slung up thru ssurg - no damage -post op CXR showed no problem. about 5 days post op - chest pain and SOB - CXR and ECG normal but continued to be getting more breathless then oxy sats down and put on Oxygen treated for chest infection..and tried various lung therapies but found them difficult to generate pressure required.
Get muddled here as not so well, but CXR after ICU eleation obvious. I did have VQ scan which showed issue with diaphragm, but neg for PE (embolus).

HAd lots of resp funct tests where vital capacity decreased etc... Now when saw CXR after 5 days it looked like consolidation/collapse but can see the elevation...misleading. Anyway..had nerve conduction studies ..paralysed left and partially paralysed right. On oxy at home to help with SOB as work hard on resp rate. ON exertion rate increases and with warm weather. As with Bigpede..feels like heavy pressure on chest I liken to elephate sitting on self ( not that one ever has!!) Feel pressure in throat etc if lie flat and hard to breathe. So sleep (that is questionable statement) upright. Still on follow up.
So sot sure what happened partic as the viral illness some years back and docs think this might be responsible. Difficult one to prove or disprove. Surg sure (who I trust) not happened in op but suppose lesion etc could have occurred off sight of surgeon or something went during first few days especially as vomited heavily for 24 hours (reaction to one of the pain meds).
Serial CXR over years studied for changes. Good resp physician on board. Has disscussed all options with me. Wants to just watch and see what develops. KNow about Bi PAP (still might need at night) Diaphragmatic pacing etc...

All a bit confusing. Anway currently arms and hands are giving me hell. Exhausted.Hate the pressure around throat on being upright and also the pain down arms and in fingers (first 3 partic). Feels like someone forgot to take BP cuff off arms in part. Get the discoloration and mottling of hands, and swelling. Pins and needles better with Lyrica but still occurs. Once one arm red and hand and other pale...doc was amazed!! Doing anythhing that requires constant use and repitition eg action like washing hair etc increases pain as do vibrations. Pain in neck, dont hold head upright in mid line always to one side. Feel like head not supported and falling into body. Odd sensation around chin to bottom lip. Whooshing in ears. Hate pressure on arms ...So meds high, tried dropping off middle dose so function better instead of being drowsy and pain but sometimes have to take.
Did have stenosis SC art and had some grafting work..and vessels in general are smaller than normal!!
Anyway that will do for now. Hope that sort of explains though doesn't in some parts .

Thanks for kind words. THank heavens for voice software. Sorry if any errors as still learning though better than previous versions.

Best wishes to you all.
Hx

[ocgirl]

Gentle hugs to all those who are suffering...

[ocgirl]

Bigpede,
You have my thoughts and prayers first and formost.

Your questioning regarding which doctor is right is not hard for me to guess; and that's all we can really do is give you our past experiences to draw your conclusions from.

The way I got tos was from being positioned wrong on the operating table during a surgery. My neck was either hyperextended or my arm positioned wrong and I came out of the surgery with tos. My neurologist from UCLA tells me this is how I got it and I believe her.

If you have a doctor telling you that you need to seek compensation if you're not better, it's pretty clear that he thinks this injury should not have happened.

Your surgeon is going to do everything to cover his b*tt and he will probably try to drag this out as long as possible, trying to keep you happy until the statute of limitations is over for a medical malpractice suit.

I know because I have been there.

The surgeon (if your situation turns out to be like mine) is going to tell you that you are doing great because he doesn't want to give you the idea that you have been wronged.

The statute of limitations in Calif is 1 year from when you THINK you may have been harmed. With a surgery my attorney told me it is usually a year from the date of surgery.

It seems to me that your surgeon may not be the best one to give you advice since he is in a position to be sued for what happened to you.

In my case, to prove that the surgeon fell below standard of care another surgeon that does the same surgery has to say that the surgeon fell below standard of care.

It was nice for my neurologist to support me, telling me how my injury happened.
But my lawyers needed to find a surgeon to testify against the surgeon that harmed me.

I'm not an attorney, but I am a RN who lost a rewarding career and you know all the rest to an error that was made in the operating room.

I had to see other doctors to get treatment because my surgeon just kept telling me that " nurses who have surgery always seem to think they are having problems."

In reality they had given me a brachial plexus stretch injury which evolved into severe bilateral neurogenic and vascular tos; permantly disabling me and turning my life upside down. Now my life is one of chronic pain and the debilitating problems of tos.

Please, find a medical malpractice attorney and find out what can be done about this situation. They probably have a list of doctors they draw on to give opinions about if your surgeon fell below standard of care. It is important to get the opinion of one of the top tos docs(see the doctor list sticky) as anyone else will not have the understanding of tos and it's complexity.

You must not let the statute of limitations run out ( they are different state to state)