Looks like I’ll be having a mediastinoscopy procedure done this month or in October to try to verify a diagnosis of sarcoidosis.
I’ve read a lot about it, and while I know that every person can have a different experience of a particular procedure, I was wondering if any dopers out there had ever had this done and if so, what was your experience like? Especially your recovery period.
I have a meeting next week with my surgeon and will find out then which procedure he will use. He needs access to the hilar lymph nodes.
I can’t answer your question about mediastinoscopy; however, I did have sarcoidosis, so if you are diagnosed, I’d be happy to share my experiences there.
My sarcoidosis was diagnosed through a gallium scan. The results of that were definitive enough, I guess, that the surgeon felt the mediastinoscopy wasn’t necessary.
Let us know when you’re going to have the procedure, Motorgirl, so we send the collective positive thoughts of the Dope your way.
Thanks, I would love to hear about your experience with sarcoidosis. Think I should start another thread about that?
Apparently my pulmonologist wants a biopsy because my blood tests (ACE, calcium level, etc) and pulmonary function test are all normal. This is sometimes the case with sarcoidosis, but without one or more results to corroborate what they think they are seeing on the CT scans, my doctor wants someone to look at the actual tissue. Whee!
I have a consultation with a thoracic surgeon this coming week, and I don’t know how quickly they generally want to schedule the procedure after that. I’ll let you know.
Thanks for the promise of positive thoughts. I’ll hold you to it!
I’ll be another one without any experience but with best wishes for you and your procedure.
Generally, I’ve found that getting in to see the surgeon means that surgery is going to be very soon. At least, that’s how all of my husband’s procedures have been. There can be a delay seeing the surgeon in the first place, but once seen, he’s in a hurry!
Sure, start a thread! We both might be surprised at the number of Dopers who can contribute.
In a nutshell, I was diagnosed in about 1993, I think. It resolved on its own without treatment.
The symptom that sent me to the doctor was erythema nodosum. My legs looked like I’d been a victim of Tonya Harding. I had severe joint pain, intermittent fever, night sweats, and fatigue. I had a number of medical tests – various blood tests, an abdominal CT scan, and the aforementioned gallium scan.
I went through about 6 months of being very scared about what was happening. And I am grateful my doctor took a “wait and see” attitude rather than automatically putting me on prednisone.
The weirdest things were being deferred from donating blood for something like seven years and being denied a term life insurance policy because of it.
Here I am, 14 years later. On more than one occasion, I’ve been answering the standard medical exam questions and have responded “No” to “Have you had any serious illnesses?” – and then said, “Oh, wait, I’ve had sarcoidosis, does that count?” The standard reaction is “Well, DUH, it counts!”
I know others whose experience with sarcoidosis is far different from mine. But for me, thankfully, it turned out to be a big “meh.” If you are diagnosed with sarcoidosis, I hope your outcome is like mine.
Checking back in briefly to say that I’ve had a reprieve. The pre-op chest x-ray the thoracic surgeon ordered revealed shrinkage in the lymph nodes, so they called off the biopsy and I’m getting another cat scan the first week of November.
This is good for many reasons, foremost among them that I really don’t need to have to deal with being sick right now. Too many bad things happening in my life.
When I remember I will start a sarcoid experience thread. I think it will be very interesting. Don’t want to start one now because I don’t have the energy to keep up with it at the moment.
ETA - If the cat scan shows further shrinkage, they’ll have a definite sarcoidosis diagnosis, since according to my pulmonologist nothing else does that.
