Discussions By Condition: Medical Stories

Has anyone read my story/dilemma. And do you have advice? Thanks!

Posted In: Medical Stories 0 Replies
  • Posted By: actoreddie
  • June 28, 2010
  • 01:29 PM

Hello to all,

I am sorry for reposting but I am NEW to "this" forum and am learning the rules and NOT sure where to put this post? Can anyone tell me if it is in the RIGHT place.. "MY Story"..

First off, I'd like to explain my condition and what has been going on the past month. My history includes benign Arrhythmia that is for the most part now somewhat under control since I had an ablation at the University of Pennsylvania last May. Although the doctor wasn't able to ablate the PVC's entirely , it seems and is safe to say that he has stopped the PSVT and mitigated some of the PVC's but NOT all! In any event, that is NOT my problem now, although I realize may still be related to the Sarcoid I was Dx'd with in 2005 after an initial CT Scan and then subsequent CT scans which revealed bilateral hilar adenopathy the following year though there was no lymph node enlargement. Even my Scan of 2007-2009 basically showed the same thing, except for 3 nodules in the left and lower right lobes of the lung, the biggest measuring 3 & 4mm. I had always had at least one nodule since 1998 and some focal scarring. That is what prompted me to follow-up with can scans starting in 2000 but there was no enlarged Lymph nodes at that time. Again, they were 1st seen on a scan in 12/04 for an incidental MRI scan I had done. Of course NOT the appropriate scan but at the time we weren't looking for Sarcoid or Lymphoma. The only thing was the additional findings I stated above, on the CT angiogram I had done at UPENN prior to the ablation procedure for mapping the catheters' routing. In any event, I was "slightly" short of breath a month ago, so I used the ASMANEX twist inhaler my Pulmonologist gave me for PRN use I had in the medicine chest. After about the 6th day, of the 10 days of usage , @ 2 doses a day, I became hoarse and now have a raspy high pitched voice. I went to an ENT DOC and he believed the Asmanex was the culprit even after he scoped me. So he put me on an arsenal of meds, e.g., prednesilone for the inflammation, a Z-pack in case it was bacterial, & an anti-fungal if it was a yeast infection. It is 2 weeks later after the meds and I am still the same. This ENT admitted he was stumped, which I respect him for, and didn't know why my right vocal cord had a weakness, or possibly paralysis on one side. I told him about the Sarcoid, even though I had to biopsy to confirm that diagnosis, he said it may be the sarcoid infiltrating a nerve or a lymph node pressing on the nerve that leads to the right vocal cord. He suggest another ENT expert. I went to him just this week he does a strobovideolarngealoscopy? and shows me the inflamed vocal cords and the right one which had sort of a bow in it. Then he spots a small hole/ulcer adjacent to the vocal cords but night right near them. So I have to issues going on. I ask him do I have CANCER, he said it doesn't look like cancer but you definitely have a small hole and AFTER looking at the 2010 CT scan of the NECK & CHEST he showed me that is appears that one of the enlarged lymph nodes is pressing on the nerve, which may be causing the right VC issue. So, he tells me lets wait a few more weeks and see if that small hole disappears and in the meantime I will call your Pulmonologist. So, I think it's safe to say it is NOT the Asmanex that caused this , maybe the small hole, but more likely the Sarcoid or possibly microscopic granulomas?? Anyway, I am worried that I may have been misdiagnosed by "a" doctor, as having Sarcoid when I may have NHL or Lymphoma. The thing is I had a PET and many CT scans which all stated by various docs/radiologist, that the pattern of the mediastinal/hilar adenopathy is "consistent" with sarcoid NOT Lymphoma or small cell lung cancer. My GP and Pulmo. also told me I would be dead by now if I had small cell L/C 5 years ago. I said what about "indolent lymphoma", is it possible that I have that and have had it and NOT the sarcoid all along!! he said he doubts it and didn't want to put me through a mediastinoscopy or Bronchoscopy if it wasn't necessary back in 2005. Did he make a mistake or can the Sarcoid still be DX and the cause of ALL this?? Only way to tell , I know, is to get the biopsy. If it is Lymphoma I am going to be very upset at this doctor and the others that were 99% sure that it is Sarcoid, especially given the high ACE levels and the fact that for 5 years I had NO night sweats, Fever, Chills, unintended weight loss or loss of appetite, etc.. However, if he is wrong, the appropriate treatment (CHEMO/RADIATION) has been delayed for 5 years!! In any event, I have to wait for my follow-up with BOTH he and the ENT in a few weeks. Lastly, the last few days I have been feeling off balance and some slight bouts of vertigo when I lay down OR turn my head. I have had a few bouts of vertigo through the years but this is less severe but the last few days of feeling like I am walking crooked or being pulled to one side, worries me. I Had a CT of the brain and Auditory Canals in 2005, normal then. I take Ativan (PRN) Klonopin .05 mg BID, which I just started again for bouts of panic/fear, Crestor, Lovaza, Norco for pain (PRN) Requip for RLS, Triazolam for sleep, Tenormin 25mg daily for tachycardia or IST, and Nexium, especially now with the vocal cord thing and the small hole/ulcer? Can anyone with some expertise shed some light on my condition and should I worry that I have freaking Lymphoma and maybe it was never Sarcoid, although I know shares MANY of the same manifestations and many symptoms. I am only 54 and am terrified that I won't be around to watch my only son graduate college OR even high school for that matter, depending upon what I have of the 2 lesser evils:confused:.

Thanks to ALL,

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