It appears I may have an autoimmune disease afterall... (update#8, apparently no AI!)

[solferino]

10 years ago I was diagnosed and treated for idiopathic tracheal stenosis, basically there was scar tissue on the inside of my trachea and it was closing in on itself. I had 6cm of it removed (called a resection), but the scarring was so severe the surgeon could not take it all without damaging my larynx. I like to talk, so he made a good decision.

Over the past 6 months or so I've noticed the same wheeziness and shortness of breath that I had way back then. I went in March for tests and the stenosis is back. The new surgeon (my original dr was killed in a car accident last October) is performing a dilation surgery on me a week from today as there is no way I could have the resection again because there's really nothing left.

One of the tests I had was a blood test checking the antibodies level, to help determine if an autoimmune disease called Wegener's Granulomatosis may be contributing to the recurrance of the scarring. I never heard anything after that test, so I assumed I was in the clear.

Today my surgeons secretary calls and tells me that my doc wants me to see a rheumatologist specialising in wegener's to see me on Thursday.

I'm going tomorrow to Boston already for pre-surgery testing, I was really hoping I'd be able to be squeezed in tomorrow instead of having to make 2 trips to the city this week.

I'm so frustrated because this test was done in March and I'm certain it didn't take 2 1/2 months for the results to come back. I think the doc never actually looked at my file for those results until today when he was going over the schedule for tomorrow and saw my elevated ANA.

So now I'm waiting to hear from this other docs office. I'll update on Thursday, but believe me, I'm going to be grilling the doc I see tomorrow about why the delay in deciding I needed to see this other specialist.

The upside of all of this is one of the other docs who will be in surgery on Monday is partnered with the guy who treated Steve Tyler of Aerosmith and Julie Andrews. I figure if that office is good enough for them I'm willing to settle. He's a vocal chord specialist and will work to preserve my voice, which I still want to keep.

So, if anyone out there has made it through the post and is familiar with autoimmune diseases, share your stories. I know they're not all created the same but I'd still like to know what it's been like for you.

 

[jann1033]

i posted on your other thread but just a

 

[Mackey Mouse]

"The upside of all of this is one of the other docs who will be in surgery on Monday is partnered with the guy who treated Steve Tyler of Aerosmith and Julie Andrews. I figure if that office is good enough for them I'm willing to settle. He's a vocal chord specialist and will work to preserve my voice, which I still want to keep."

This sounds like he may be the the doctor for you and you will get good treatment in Boston....Mass Eye and Ear? or MGH? Just wondering where other people go when they go to Boston for treatment, we are quite fond of MGH..

Hugs and take care and keep us informed.

 

[safetymom]

Sorry to hear you that you have to go through all of this. Hopefully you will be better in no time and still have a great voice.

 

[solferino]

i posted on your other thread but just a

Thanks for the

This sounds like he may be the the doctor for you and you will get good treatment in Boston....Mass Eye and Ear? or MGH? Just wondering where other people go when they go to Boston for treatment, we are quite fond of MGH..

Hugs and take care and keep us informed.

MGH, but I get the impression that MEEI is tightly tied into MGH and the docs have priveleges at both- I had to go there for special x-rays.

I really do like the people at MGH. My main doc I don't particularly like- he's skilled at what he does, but bedside manner is severely lacking.

The vocal chord guy and the senior guy he works with are VERY MUCH into learning as much as they can about the stenosis and preservation of the chords on all of their patients. Apparently one of the gals on the email list I am on is in direct contact with the senior guy frequently and he even called her while she was hospitalised at MGH and he was at a conference somewhere abroad. He really seems to care, as does the guy I'm seeing from that office.

Sorry to hear you that you have to go through all of this. Hopefully you will be better in no time and still have a great voice.

Thanks SM- thankfully my chords are in perfect shape, but the damage is right at the floor where they begin... so it's keeping that area safe and getting the icky stuff out of the way.


I had a pre-op checkup today and go back to MGH to see the AI guy. I'm really curious to see what he's going to have to say.

 

[KPeveler]

check out butyoudontlooksick.com. It is a great site, and there may be people there who have had similar experiences!

 

[solferino]

Hi everyone= back from Boston and feelign good. I've been told the dilation was a success although I did not actually get to see Dr M, aside from being very groggy in recovery. I was told I saw him but don't remember. I find it frustrating to say the least. Yes, I understand he's a busy man, but I think his patients deserve a little bit of time with him. Heck, Dr N ( the autoimmune guy) came to see me TWICE and he's just consulting. Love that guy. I did see Dr B (vocal chord guy) before going into the OR. I don't know if he actually went in- when I saw him he said he was going to be in another OR just down the hall and would be available if needed.

I met a few of the residents this morning and one of them had me blow on his hand and he said the breath felt great. Dr. N was really impressed when he listened to my breathing thru the stethoscope because this time when he listened I didn't have the wheeze. He's such a nice man. From what I gather from him because none of the bloodwork or urinalysis tests came back showing markers for Wegener's, the AI. He's still wanting me to stay in touch with his office though. Too bad my surgeon doesn't have the same bedside manner as this guy. My surgeon is an a$$ as far as I'm concerned. He's extremely competent surgically, but aside from that I just don't like him. From what I gather from my email list I'm not the only patient who feels that way.

The worst I have to report is a fat upper lip from Dr M's giant hands vs my teeny mouth. And I got epinephrine nebuliser treatments every 4 hours. It was like this aerobic workout withotu exercising. It made my heart go crazy. My nurse said that it was likely caused because I don't have much body fat and the med had no where else to go. The smell of those epi treatments gagged me and it was so hard to breathe that stuff in, but I knew it had to be done. I don't want to smell that stuff for a long, long time.

Dr N told DH that he felt that the advair will be extremely helpful and I more than likely won't need another dilation for some time. I'm anxious to hear exactly what Dr M has to say as well. I need to call for a follow up appt but will wait until after the 4th to do that. I'm exhausted right now and want to go to bed.

I got released around 11:30 yesterday morning. We were really anxious to get out of there because Storrrow drive was being shut down at noon and that's the easy way out of the city for us. Otherwise we'd have to go up 93 and around and although we could have done it, it's not a mindless trip like Storrow drive has become to DH.

My throat hurts a wee little bit now and I'm feeling a little phlemgy. I'm now seriously wondering if I'm sensitive to dairy, as I was free of phlegm all day yesterday and this morning I had yogurt and started feeling phlegmy a little while later. I don't know how I could possibly eliminate dairy!

I guess that's it for now. Glad to be home to my family and furry critters and the Dis'ers. .