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View Full Version : being referred to Dr. Lebovics New York



cathy2330
03-07-2011, 05:47 AM
Hi I have been on here periodically. My situation is I have tracheal stenosis subglottic also stenosis of both bronchi's left and right. I have nasal crusting and now have something going on with kidneys that we are trying to sort out. I do not fall straight into the "wegs" category as I am always testing Anca Neg. sinus and bronchi biopsys are of unknown inflammation? But I am being treated as Wegs as this is the best guess scenerio and doc feels it is an autoimmune disease of some sort. My main issues for over a year now is the stenosis's. I spent 6 weeks in hospital last Jan. trying all sorts of treatments. The narrowings got down to 3 mm. I have had over 10 dialations in the past year. They are not holding up. Once dialated they are shrinking back quicker and quicker. My last dialation was Jan. 18 and I am already out of breath while walking and talking, light housework, grocery shopping etc. I know soon it will be out of breath just sitting and talking. Last year doc tried to put a Y stent in but was unable to do so, area just toooo small. I have done 6 months of cytoxan and am currently on 10 mg prednisone. From what I understand it is extremely difficult to treat stenosis's and there is no proof that cytoxan/rituxan will work for this. I do not want to try rituxan at this time as I do not feel I have any ACTIVE inflammation at this point. It is looking like the kidney issue is something else totaly unrelated. My problem is I do not want to keep getting dialated every 6 weeks.

I live in Maple Ridge BC Canada and my rheumatologist wants me to go to New York to see Dr. Lebovics for a dialation with Mitocyn C??? topically applied to the stenosis. She believes it will be covered by our BC Medical as nowhere in Canada is there a Doctor that performs this. She will be applying to the BC Med board for approval. She has had other patients that currently are doing this at this time. My question, anyone had this done for existing stenosis. Mine according to doc is very hard and calcified, hard to stretch out. I believe the last dialation stretched to 7mm and was at about 5.5mm at the time but as I said shrinking back starts almost immediatly. I am just wanting to know if anyone has had success with this, how many times has the procedure needed to be done and what are the risks. Anyone heard of Dr. Lebovics or is currently dealing with him. ANy advice would be appreciated. She would like this done ASAP.....

Thanks for any info at all.....Cathy

pberggren1
03-07-2011, 07:33 AM
JanW would be the best person to ask. She has stenosis and sees Dr. Lebovics.

Sangye
03-07-2011, 02:39 PM
JanW will give you all the info you need. I'm very happy to hear that you're going to see Dr Lebovics. You can trust whatever he tells you.

JanW
03-08-2011, 12:55 AM
Hi, Cathy --

Everyone is right. I do have stenosis and a saddle nose and am a current patient of Dr. L. (seeing him next Friday in fact for a routine check up). I am very fortunate in that I have had only one procedure (which was surgical -- he made incisions into my scar tissue to actually open the area up, and then coated it with antibiotic for infection, steroid for inflammation and myomicin C which is chemo for possible retardation of regrowth). I only have it really in my subglottis -- the first two rings of my trachea are affected, but nothing else.

I do know that if you have more extensive lung involvement the surgery will involve him and a thoracic surgeon. He started working this way a couple of years ago.

Of all the doctors I have ever had, including the wonderful woman who delivered both of my kids and whom I have seen for 20 years, I like him the best. Naturally I feel as though he saved my life (my windpipe was down to 2 to 2.5 when I had my initial appointment and it while not an urgent situation, I did have surgery within six weeks, but more than that, he is one of the most compassionate doctors you will ever meet. He is extremely knowledgeable about WG (while taking on a full compliment of patients - as my rheumy would say you can't earn a living on WG alone), having worked with patients at our National Institutes of Health, where he got his start. He worked under Dr. Gary Hoffman, a rheumy who is considered to have 'written the book' on vasculitis, and is an age peer of Carol Langford at Cleveland Clinic (where Hoffman is now semi-retired as well). I think that the only reason he probably didn't go out to Cleveland when the group moved is that he is a NYer through and through.

His office is amazing -- I have never once been taken late into an appointment, get bills easily cleared up, etc. The hospital where your surgery would be done is fine also and centrally located. He typically works with an Italian aesthesiologist (guy in his mid 50s) -- they have done a ton of surgeries together.

I know that I asked him about the use of lasers in surgery because I see some of our international members getting that done, and he has said that he uses that in cases of extreme scarring (which is what it sounds like you have). I don't know that he does dilations without surgery -- logically it just doesn't seem as though that would be as effective as surgically cutting in to the scar tissue.

My recovery was quick - you spend overnight in the hospital. The surgery took about 40 minutes. No sore throat or anything afterwards, although the hospital sends a soft food tray. I was tired but back on my feet within a day.

Honestly, the worst part of my visit every time is getting scoped. Its a feeling that I can't get used to . He jokes that his ears are as good as most people's scope (that is, he can hear how closed you are by listening to you breathe), but he's got to justify the office visit.

Oh, of course, he will also check out your nose and they can do a baseline hearing test (and should). Interestingly, he's not an 'ear' guy -- I didn't know that there were those fine divisions within the ENT profession, but he's in a big group and apparently others deal with really specific ear problems. He will work with a plastic surgeon (also in the group) to fix my nose, should I go into a non-medicated remission.

Please let me know if you have any other questions -- I can't emphasis how much I love my ENT!

cathy2330
05-15-2011, 12:08 PM
Hi everyone, especially Jan as I know you see Dr. Lebovics and also have stenosis. I just got back today from New York and having Dr Lebovics do the treatment for me. After my consultation with him on Monday it was realized that I have tracheal stenosis, subglottic stenosis, bronchi stenosis in each bronchi and severe nasal obstructiion with partial saddle nose. We agreed that the next and only viable option for me would be the dialation, with the incision and mitocymin C application. I have had over 13 balloon dialations in the past year and they are not holding past a few weeks and shrinking very quickly with the widest area being around 3 4 mm very quickly. Procedure was done , not much different than the dialations, sore throat, I had a severe allergic reaction to the pain mediction but nothing a little benadryl didn't help. Soft foods for a few days overnight in the hospital St. Lukes with a follow up visit two days later. Still swollen but looking much better, trachea area dialated to about 8 mm and subglottic to about 10.5 widest I have ever been. Problem of course is how long this is going to last. Dr. Lebovics wants to attack again in 3 months time, settled on proabably mid sept. although procedure is covered by BC Medical as this is not done in Canada anywhere I am out of pocket for flight accommodations and living expenses. Did stay in the residence close to hospital that is available for out of town guest but it does all add up. Although I have all along been ANCA negative, with inconclusive bioposies and never a real confirmation of Wegs. Dr. Lebovics feels very strongly that it is Wegs ( and he is the expert in this area I am told). I am going to my ENT here in Vanc. in 6 to 8 weeks and he will do a video to send to Dr. Lebovics so he can see how the stenosis are holding up. Definetly still have active imflammation in trachea and subglottic areas but bronchis don't look active at this time. Overall very happy with the procedure and will just have to take it one step at a time to see if it will help me. He is keen on my starting Rituxan but I just have to really think on this. He believes in my case that the pros will outway the cons, I am not so sure and have to really consider. So looking for another trip to New York in Sept did manage with my husband to do some sightseeing and my goodness the fabulous shopping!!!love filenes basement and DSW shoes and CENTURY 21 sooo much fun. Saw Central Park, Battery Park, double decker hop on hop off bus tour and the weather was fabulous.

By the way Jan, told Dr. Lebovics about this website and that I have spoken to you on several occassions and he remembers you and said to say hello of course. He was able to slice into the narrowings using his very special sciccors and was a very nice and cordial man. I thanked him so much for taking me on as a patient.

Talk to you all soon and will keep you updated to how long the treatment seems to be lasting.

Cathy

pberggren1
05-15-2011, 12:14 PM
I am glad you got to see Dr. Lebovicks to get this done Cathy. It is unfortnate that the best guy for this is far away from you and you have to pay so much to go and see him, but of course it is well worth it if it improves your health and quality of life.

Sangye
05-15-2011, 12:42 PM
Glad to hear it went well, Cathy. I hope you can figure out a way to get there at less expense!

elephant
05-16-2011, 01:28 AM
I agree with you Cathy, your health is more important than the cost of it, hopefully you will be able to get back there.