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Medical Forum / Diseases and Disorders / Lupus / November 2007another update
Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an arteriogram and the other surgeon wants MY heart doc to do a heart cath to make sure the heart is ok too. They were suppose to set it all up MONDAY. Believe this NO one has called me and no one set up nothing yet. I called them to remind them but zip. MY heart doc says COME into my office, I saw her and she was the one started this testing. Why come in. Nurse says, well I am not sure, something about talking to your surgeon. NOW what. See the complicated mess this is. THEY say it needs fixed, they say the right side is only supplying my brain, left vertebral is backward flow due to blockage of the subclavian. they call it RARE. Like Shelagh WE must be RARE together haha. a so the wait is on and looks like a delay in our winter leave. I know patience is a virtue. I worry it is going to get worse before they do something. But then again I told them about all the symptoms in June, and now the symptoms are more so. DUH Ever fold your clothes and feel like your arms are 1000 pounds and can't hold them up. Dizzy when you bend over, feel gushing in the head and neck? Damn fun LOL sorry for the curse haha. so keep the prayers a comeing and that is all I know right now. At least I am glad I got my holiday shopping done, and hubby put up the tree. hugs to all and to all a good night for my nap janers OK now Janers... it is time for you to be the squeaky wheel and BIG TIME noisy!! Don't let them forget you or the procedures etc... PHone and PHOne again and then PHONe some more!!! until you are in and DONE and healthy and well again; we all will keep our cheers and prayers coming !!.... BUT your job is for you to PHONE those dam doctors until they DO SOMETHING for you !!! OK? hugs for you (((Janers))) Shelagh http://members.shaw.ca/tiderington Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an arteriogram and the other surgeon wants MY heart doc to do a heart cath to make sure the heart is ok too. They were suppose to set it all up MONDAY. Believe this NO one has called me and no one set up nothing yet. I called them to remind them but zip. MY heart doc says COME into my office, I saw her and she was the one started this testing. Why come in. Nurse says, well I am not sure, something about talking to your surgeon. NOW what. See the complicated mess this is. THEY say it needs fixed, they say the right side is only supplying my brain, left vertebral is backward flow due to blockage of the subclavian. they call it RARE. Like Shelagh WE must be RARE together haha. a so the wait is on and looks like a delay in our winter leave. I know patience is a virtue. I worry it is going to get worse before they do something. But then again I told them about all the symptoms in June, and now the symptoms are more so. DUH Ever fold your clothes and feel like your arms are 1000 pounds and can't hold them up. Dizzy when you bend over, feel gushing in the head and neck? Damn fun LOL sorry for the curse haha. so keep the prayers a comeing and that is all I know right now. At least I am glad I got my holiday shopping done, and hubby put up the tree. hugs to all and to all a good night for my nap janers > Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are > not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an [quoted text clipped - 21 lines] > hugs to all and to all a good night for my nap > janers wow, Some big things happening, I still do not have much input of Lupus even though I have it :( You will probably feel best with the doctor you trust. As far as them remembering you and to call etc, I am a bit skeptical on that one, an ENT told me 9 weeks ago on a Tuesday that he would call me on Thursday with a testing schedule, well, not only am I still waiting, I have been to another doctor and tests were done and read. So then, Lupus can cause the heavy arms? I'll bet it also is cause for extream exhausted feeling too. Be safe, I am glad you have a friend to be 'rare' with, its nice to have someone who knows how it all feels. Prayers for sure. Zinn Me again. No lupus is not causing the heavy arms the circulation problem I have or blockage or stenosis is causing it, says the heart surgeon. the name of the "thing" I apparantly got is subclavian steal syndrome and it is rare. I did get a call from the surgeon this afternoon late, and I see HIM and my heart doc both Monday. I told them enough of this stuff. I AM THE PATIENT and I SHOULD NOT have to be the one on the phone doing all the inbetween stuff. They know I am angry. so meeting it set for MONDAY after lunch and then the surgeon is going to discuss what HE is going to do to correct this. Plus the heart doc may not decide to DO a cardiac cath. whether this is lupus related is beyond me. It maybe due to athlerosclerosis of the vessels or what ever. I used to be a heavy smoker as well but NO SMOKEY now since March of 02 so that is good. I did what you said Shelagh and phoned and phoned. To the point today that when they called me and didn't know I was to see the heart doc, well that made me vocal and told them like what I wrote above. I AM THE PATIENT. See what happens when they take being an RN for granted. haha. MORE next time. Thanks for the prayers but keep them a rolling. the symptoms of this is LOW bp in the one arm compared to the other. mine is 30 or 40 point different. changes in vision a lot, dizzyness, fainting feeling, heavyness of arms and weakness. Headaches, and what not. thanks again me in limbo Well, that sucks, but at least they are catching it and are planning to do something! (((HUGS))) Bev > Me again. > No lupus is not causing the heavy arms the circulation problem I have or blockage or stenosis is [quoted text clipped - 22 lines] > thanks again > me in limbo In message <078ab7af-f0cf-4608-8c30-e0ebc057342f@e23g2000prf.googlegroups.com>, zinn.46350@yahoo.com wrote [ >So then, Lupus can cause the heavy arms? I'll bet it also is cause for >extream exhausted feeling too. Oh, yes indeed - and this is much more common than the other symptoms she describes.  SignatureAndy Taylor [Editor, Austrian Philatelic Society; Chair, N E Lupus Group]. Visit <URL:http://www.austrianphilately.com> or <URL:http://www.northeastlupus. org.uk> for the obvious; Andystuff on <URL:http://www.kitzbuhel.demon.co.uk> > Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are > not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an [quoted text clipped - 21 lines] > hugs to all and to all a good night for my nap > janers Janers, The prayers are already on the way. Now, let's do some cussin'! Congratulations on your persistence. I once ask a doctor if he had ever mistaken one of his patients for a person! He was offended. Hehe Now let us be thinking happy thoughts about your upcoming experience Monday. It is good to be informed cause we worry 'bout ya..... George You remain in my thoughts and prayers. Good vibes going your way today and always! Hugs, Sherry |
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