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View Full Version : JanW's surgery went well!



JanW
03-05-2010, 08:17 AM
I'm here at St. Luke's Roosevelt and just wanted to let all of my Weggie friends know that my surgery went really well. Dr. Lebovics said it was a textbook case. I've got some pain relief on board as well as steroids, antibiotics and regular saline, and am feeling pretty well. Sore throat is really minimal but the breathing relief is unbelievable. Thank you all for your support, and for those of you who are trached or waiting for this surgery -- it's so worth it and I hope that you get it soon.

In my role as SS nag, I will also say that if you are having trouble breathing, have WG and have been diagnosed as having asthma, please, please, please make sure with your docs (you'll need an ENT for this) that asthma is the true diagnosis. I understand now why the doctor says that people break down crying when they realized how compromised they were before. Even eating is different for me now, because I am not struggling for breath (and remember, I really wasn't aware I was doing that, until I wasn't doing it any more). The aesthesiologist who has worked with Dr. L on over 400 of the cases said that he is one of the three surgeons in the country that do this dilation in this way. Definitely worth seeking out. When I asked the doc what other docs do he simply said "they'll put in a trach and let the rheumo deal with it on the medical side, and hope for the best. And lots of people end up permanently trached."

Sangye
03-05-2010, 10:11 AM
Jan, SO happy to hear everything went well!! I had shivers of joy reading how well you're doing and how well you can breathe.

If you can, please ask the names/locations of the other 3 surgeons who do the dilation that way. It would help to have that info for our members.

Heartbreaking to hear about those who just trach routinely. It makes sense that if no one goes in and opens the scar tissue the Weggie would wind up permanently trached. Because of you, we are armed with this info now. Hopefully none of our members will ever go through unnecessary trachs. Thank you and take care of yourself. :)

pberggren1
03-05-2010, 10:24 AM
Yee Ha!!!!!! That is AWESOME Jan!!!!

elephant
03-05-2010, 10:53 AM
Great news Jan! Thanks so much, like Sangye said, you are helping everyone here who needs this surgery. Someday I might need one. Glad you are breathing better! Yahoo!

snooz23
03-05-2010, 10:57 AM
Great news Jan...you have provided some great perspective and helpful information to everyone out there. I hope your recovery is quick and easy.

JudyJ
03-05-2010, 12:36 PM
JanW
I am new to this siite and am so excited to hear how well your surgery went it sure encourages the rest of us. Best Wishes
Judy

jola57
03-05-2010, 04:58 PM
JanW, how wonderful you are getting better and can now enjoy your food : )

DEE
03-05-2010, 05:28 PM
happy everything went well wishing u a speedy recovery DEEx

Jack
03-05-2010, 08:03 PM
So pleased for you Jan and useful information should I ever need it. :)

JanW
03-06-2010, 04:01 AM
Thanks, Jack. I'm back home and cannot recommend my doctor or my hospital stay more highly. I now understand why people would do this procedure even if they have to have it done several times. Totally worth it and it's simply not arduous at all. When I think that many (most) Weggies are getting trached (sometimes permanently) at windpipe circumferences that are greater than mine was when I went in, it makes me so angry that I want to cry. All because maybe their doctors don't even know that this procedure exists. I am sure that my doc is trying to share the information with others -- he has got several papers in the works -- but what good does that do if some small town doc (or big town doc for that matter) who has no experience with us thinks that he's got to get the patient restored to full breath at any cost without looking into options that are not disfiguring or life changing. I have no restrictions on activity right now, only 24 hours after the surgery and am on nothing stronger than Tylenol. I am going to open up another thread on this topic.

Brooke
03-06-2010, 09:03 AM
Hi Jan~
I am glad everything went well for you!!!
How does one know if wheezing and difficulty breathing is due from the damage to the lungs or if it is SS?

JanW
03-06-2010, 09:39 AM
CT of the lungs is surefire. Also look under my new thread -- Breathing Problems -- Where are they coming from? for easy tests you can do at home.

The key thing to remember is "not all wheezing is asthma." This is the mantra of ENTs. If you are wheezing on inhalation, other sources higher in the windpipe need to be examined, particularly in those of us with WG or sarc.

JanW
03-19-2010, 06:45 AM
Had my surgurical follow up today and everything went well. Dr. Lebovics says my throat is now almost fully open and that I'll probably want to be back in several months for a 'touch up.' Also did a baseline hearing test (and cleaning). He said that the test picked up some congestion in one ear which could be symptomatic of WG, and of course important to know. He didn't feel that there was anything more for him to do at this time, and I'll see him in two months. I'll see my rheumo tomorrow and figure out the meds -- no surgery on the saddle nose until remission and six months off the meds (although in rare cases he has operated on people with who haven't achieve med free remission because the deformity was so bad). Mine's not so bad that people stare and point, thank goodness, but he has had peeople in that situation. I just avoid photography and shadows.

Jack
03-19-2010, 07:05 AM
Medication free remission is a big ask! It is something people hope for, but only the lucky ones get there.

moyan
03-19-2010, 08:56 AM
Hi Jan, good news for you. Several times I have read here that wheezing on exhalation is astma, but.....in my 70 years I have never had astma and now sound like a steamship when I exhale. Has lasted about a month. what could it be? Also so short of breath I have to rest after sitting down.

JanW
03-20-2010, 12:53 AM
I would definitely have your lungs checked out, moyan. Adult-onset asthma is unlikely...could also be COPD if you were/are a smoker.

JanW
03-20-2010, 12:55 AM
Jack, I know it's a big ask, and I'm not necessarily looking to get there either. I think my surgeon could probably be persuaded...he mentioned that he did one woman who was on low-dose pred when it became clear that she would never get off meds.

Sangye
03-20-2010, 01:02 AM
I wish we had some statistics on how many Weggies get into drug-free remissions and for how long, etc.... I'll ask my Wegs doc in a couple weeks.

As far as having that hope for myself, I treat it like the rest of Wegs-- have hope, but not a tight grip on a particular outcome.

JanW
03-20-2010, 01:06 AM
I'm more in the mode of figuring out how to get the doc to perform the surgery if I don't completely go into remission -- but I get it, he could do the work and it could collaspe again. The only people I've read about who had the surgery are in fact off meds -- unlike my windpipe this isn't something that I had to have done. He walked me through how this is an aesthetic problem of the Western world, blah, blah...but he also introduced me to the plastics guy that he does this with. They feel optimistic for me because many Weggies they see are much sicker initially, and I haven't gotten sicker since diagnosis, despite no medical treatment (can't count mtx because it was only a trial dose).

moyan
03-20-2010, 01:24 AM
I would definitely have your lungs checked out, moyan. Adult-onset asthma is unlikely...could also be COPD if you were/are a smoker.

Hi Jan, gorgeous day here! I had my lungs checked thoroughly about a year ago. What is COPD? Some obstruction somewhere between tummy and throat, very small though and first signs of edema, I was a HEAVY smoker but quit 15 years ago.

Jack
03-20-2010, 02:43 AM
COPD seems to be used as a general term covering many different types of lung condition. It is not a wind pipe restriction, but refers more to restrictions of the lung's structure.

Sangye
03-20-2010, 07:43 AM
My aunt had adult-onset asthma in her late 50's. She had severe asthma attacks and actually died from an attack that couldn't be stopped. Apparently the asthma had become an increasingly crippling condition for some time before she died. I don't know the details since I wasn't in contact with her.

moyan
03-20-2010, 08:23 AM
Thank you Sangye, unfortunatly your story sounds very relevant. Had thorough lung check about maybe a year ago with some minor probs, but my breathing was so haeavy, I could not finish a sentence without stopping in the middle. Took Advair till 2 weeks ago, didn' t think it did anything for me. Will start agin and have an ENT app Mon and the lung guy April 1st. This time I will know a little bit what I am talking about! :)

Sangye
03-20-2010, 09:09 AM
I'm glad you're going to see both your ENT and your pulmy. They might need to re-evaluate your lungs.

I'm wondering if I've got some asthma creeping in these days--I've had a strange sound on exhalation for a year and now I also have a little whistle. In my early days with Wegs, more than one pulmy mentioned the possibility of developing asthma. We ruled it out then, but apparently it can happen.

moyan
03-20-2010, 09:15 AM
I'm glad you're going to see both your ENT and your pulmy. They might need to re-evaluate your lungs.

I'm wondering if I've got some asthma creeping in these days--I've had a strange sound on exhalation for a year and now I also have a little whistle. In my early days with Wegs, more than one pulmy mentioned the possibility of developing asthma. We ruled it out then, but apparently it can happen.

I am really glad I happen to have those apps scheduled. A doc told my mom never to have fur animals 65 years ago, so I guess WG can bring out the worst in you. May I swear?

moyan
03-20-2010, 09:17 AM
PS Have had all kinds of furry critters, with 5 kids, one animal each... Also I, cats and dogs!!! Raining or not.

Sangye
03-20-2010, 09:42 AM
Ya gotta have your beasties!

The only time one of my pets was in jeopardy was when my first doc was diagnosing the Wegs. Alveolar hemorrhage can be caused by a handful of illnesses, one of them due to exposure to birds. If you avoid birds the disease goes away. I had to wait a week for my results and I cried every day hoping I wouldn't have to give my cockatiel away. He's my little pal. :)

Turned out it was Wegs--a far worse disease. But I was greatly comforted that my birdy boy could stay.

moyan
03-20-2010, 12:24 PM
I can relate to that, we humans are the weirdest kritters of all :)

JanW
03-21-2010, 12:29 AM
The other rare vasculitis disease that adult onset asthma is connected with is Churg Strauss syndrome (you can read about it on vasculitis foundation site). I was tested for it at the same time as WG because it is also mimic's WG with its breathing issues like sarcadoisis minics WG with saddle nose and SS. I copied this from the VF site: Churg Strauss syndrome, known as allergic granulomatosis and angiitis, is a disorder characterized by allergic rhinitis (inflammation of the nose), asthma, and an increase in certain blood cells known as eosinophils, which infiltrate and inflame different organ systems. The organs most commonly involved are the lungs, peripheral nerves, sinuses, and the skin, although any organ system can be affected including the cardiovascular (heart), gastrointestinal (stomach), kidneys and the central nervous system.

Treatment is very similar to WG, but my doc still wanted to test me to rule it in or out. Of course I didn't have asthma at all.

moyan
03-21-2010, 12:34 AM
Thank you. I think this must be WG. Had a kidney biopsy at the hospital but of course nobody told me anything and I was too new to ask.

JanW
03-21-2010, 12:38 AM
CS also affects the kidneys. As a form of vasculitis it's very close to WG in that it can go anywhere, it's just that it generally starts in the lungs first, whereas we tend to start in ENT/kidney areas first.

Sangye
03-21-2010, 12:42 AM
You'd know if CSS was on the list of possibilities if your eosinophils (type of WBC associated with allergic reaction) were elevated.

You can have high eosinophils with other disorders. (Eosinophil count is part of a routine blood count.)

JanW
03-21-2010, 12:48 AM
Precisely. That's what my rheumy checked for.

moyan
03-21-2010, 02:04 AM
Sangye and Jan, I came to think of a possible solution: Little cat (Saboteuse), very soft fur, like a chinchilla and sheds a lot, comes up on puterdesk for a lovesession each morning when I play my wake-up silly games. I do not like animals in my face, but this one strokes my cheek with her body. It might be that that is too much for slumbering allergies so will start pushing her away. :)