Surgery Scheduled Next Week!

[Lila]

I'm so sorry I haven't been on here in a while. Unfortunately, something is always happening in my family, and it's hard to set aside some quiet time. I hope that everyone is well! I want to thank everyone for all the advise and support over the last 7 months. Just an update: My sis is hanging in there. She still has her trache in. She has been seeing the docs at JHU. They are ALL wonderful there. She is scheduled for surgery next week with Dr. Ishii to have her nose reconstructed. I'm concerned and she is as well. All the research I have done on this doc doesn't really state that she does Rhinoplasty that often. It seems like she is more focused on 'hair restoration'. Is anyone familiar with her? If so please let me know....Thanks so much! :)

[Sangye]

Hi Lila-- so happy to hear from you! I've often wondered how you and your sister are doing. What a relief to know she's going to JHU.

How did she find that surgeon? Always check out a surgeon ahead of time.

[Lila]

Hello Sangye!!!!!!!!! So glad to hear from you as well! How are you? I think of you often also, and I hope you are well!!!!!
My sis was actually referred her through Dr. Levine. My sis had only met her once and she said she had to research Wegeners and she would call her back. The office called her a couple weeks later to schedule the surgery. They didn't tell her if they would use cartlidge or a cadaver (spelling?). They didn't give any information. My sis called up there twice and asked the doc to call her back, but she didn't! I dunno, I have a bad feeling about this surgeon, but from what I can tell her two partners have tons of experience with Wegs and surgery.
I just didn't know if anyone knew of her.
I hope this message goes through as I am doing it from my phone, and I don't have spellcheck on here! ...and my phone is dying!!!!!!!!
So great to hear from you Sangye! {{{Hugs to you}}}

[Sangye]

I say trust your gut feeling. She may be a fine surgeon but not right for your sister.

I'm doing pretty good. I've had two rounds of rituximab and it seems to be keeping the Wegs dog asleep. I see Dr Seo next week for the first time since I've been feeling better. Big hugs to you, too. :)

[elephant]

Lila, I agree with Sangye. Sangye, I am hoping that Dr Seo will say your in "REMISSION!!!!!

[Sangye]

LOL-- Me too! :)

[Lila]

The whole bottom portion of my last message got cut off :(
I will be on tomorrow night to catch up with everyone! Goodnight and sweet dreams!
YAY again to u Sangye!!!

[JanW]

I would trust my gut on this one Lila. My doctor, Lebovics, who is an ENT, does the surgery himself, but only with an assist from the top guy in plastics in his shop. I'm assuming Dr. Levine is at JHU - is that correct Sangye? I assume they would only recommend the top people to deal with WG patients, but you have to be very careful because we don't react the way that normal people react and my understanding is that all kinds of things can happen in terms of reabsorbsion of tissue even -- as you can imagine, not pretty. I've corresponded with people on line who have had to do this more than once -- also not good as it is a somewhat painful surgery (although, for those of us with a saddle nose, the pain is better than the stares).

Dr. Lebovics says that the biggest thing that you have to watch out for is people trying to do a nose job on you on top of just restoring what you had (which of course is difficult because you probably never went to that doctor with your old nose). The worse results are when you want the tip rotated or something (I think that makes the nose look smaller).

[Sangye]

That's really good info, Jan. I didn't know any of that!

Yes, Dr Levine is a Wegs doc at JHU. But docs can refer you to another specialist based on a lot of things, and it doesn't necessarily mean they're the best one to do a procedure. If Dr Levine said, "She's done this surgery on lots of Weggies, really understands the complications and has been successful," then that's something to go with. But if it's "She's done surgery on some of my patients in general" that's another. When a doctor gives a referral, it's good to ask what that's based on.

I had trouble finding a good PCP in Maryland, which left Dr Seo having to deal with a lot of stuff that could have been handled by a PCP. No matter what was going on, my PCPs always said, "I don't know. Ask Dr Seo." It was ridiculous. Finally one day he gave me the name of a PCP close to me that was treating a couple of his patients well. He made it clear that that was all he knew about her.

Regardless of what a doc told me, though, if my intuition says the doc isn't okay for me I always go with that.

[JanW]

I'm your person to talk about the nose stuff, Sangye!

Lebovics always does his with his plastics guy, and when he introduced me to him he talked about how the plastics guy is always saying, "we can make it a little bit more perfect here, or shave off a little there" and he's always like, "this person's got Wegeners, let's just anchor this nose to some cartilage and get out." He doesn't really look at the aesthetics (and if you saw his rumpled Colombo look you'd know that on sight -- in fact he cracked a joke about the plastics guy looking like a Dr. 90210 Beverly Hills type -- which he did). What I like about Lebovics is that as soon as it's even a little bit out of his wheelhouse (like your stenosis goes a little too far into your trachea) he immediately calls in the surgeon who is a specialist in that area.

I had a really 'good' nose before so I wouldn't want a single thing changed anyway, so I guess that's good.

[Lila]

That was excellent information from all of you. I actually called Dr. Ishii's office again today and spoke with the receptionist. She said the doc wasn't in today but she would have her call me back on Monday to answer my questions (kinda cutting it close since the surgery is Tuesday).
Jan, I remember you telling me about Dr. Lebovics now. He is in NY right? I guess my sis wants to keep all of her care at JHU (Sangye, you know how stubborn she is!) Yes, Dr. Levine referred her to this surgeon and my sis really trusts Dr. Levin's opinion. Unfortunatly, I haven't been able to make it to her last couple of appoinments, so the questions that should have been asked, never were. Apparently the surgery is a 'External Rhinoplasty'. It is all just so odd because no one told her to stop her Methotrexate, Pred, Ibuprophen, pain meds or Enbrel Injections 2 weeks ahead. She stopped on her own cause she is familar with having surgeries. One thing she did say that Dr. Levine said was "you are ready for the surgery, and we want to get that trache out soon, because I don't feel like you need it any longer"
I do have a bad feeling, and I've expressed to my sister. But, it seems like she's gonna go ahead with it. I just pray to God that it's the right decision. We ALL know we can bring a horse to the water but we can't make em' drink!!!
Today she said she doesn't want a perfect nose just a funtional nose and one that everyone doesn't stare at. She was in the grocery store a while ago and a little kid yelled out "Mommy, look at how tiny her nose is". So, I can understand WHY she NEEDS this more than WANTS this.
Thanks so much for ALL the info, advise and support! Sangye, I'm so FREAKIN happy that you are doing better! :)

[Sangye]

You've done all you can do! I understand wanting to keep all her care at JHU. All my docs are there except for my PCP and an awesome dermatologist (who I don't need to see at this point). I hope it goes well for her at any rate.

[Lila]

Thanks so much Sangye! Did you go for your follow up with Dr Seo yet? I would have updated this sooner but I've been staying with my sis and she's still living in the Ice Age with no internet access! It seems like her surgery went well! The doc informed her that there are 'no guarantees', but she really believes this surgery will work. It's amazing what they can do now a days. They took donor cartilage and put there. She almost has no pain! Thank God! The doc did email me back Sunday evening and answered all my questions, which made us feel much better! I hope u are well! Please let me know how ur appoinment went!

[Nancy]

Hi Sangye -
I wanted to FU with you on your treatment with the rituximab. My Wegs doc wants me to take that as the cytoxan was not effective as usual. I applied to genetech acess to care - they have initially denied me based on last year's tax forms. But appealing due to this year's lack of work.... How do you feel that this medication is working for you... I have been researching and reading and find such varied accounts - I do not know what to expect and my wegs doc - just told me to get a tetanus shot due to B cell destruction and the need to go on B cell memory for about 8-9 months. Any experiences, thoughts would be appreciated...
Nancy

[Sangye]

Nancy, I just started a new thread after my appt today. Also, the thread "Rituximab Round Two" contains all my updates about rtx. It's strayed off topic now and then, but I keep bringing it back on topic, so the whole thread is useful reading.

In a nutshell, rtx is the only med that has gotten the Wegs under control for me. Ctx failed (twice). Mtx failed after I had an allergic reaction to it (pulmonary infiltrates). CellCept barely contained it. The only thing left was Rtx.

[LisaMarie]

Nancy
Please let me know how your plea with RTX genentech goes I too am appealing them to provide the medication for me....I am in the "we are reviewing your information " stage...I had to send them the last months proof of income to show we make considerably less than before.....I wish they would just approve it for WG...I am also still trying to convince both insurances (I have Aetnea and Blue cross Blue Shield)...it would be more cost effective in the long run toapprove RTX then not. I have trach stenosis with right sinus , jaw and gland involvment...my understanding is that RTX will calm WG down better and faster than the other medications...I am on methtrexate and predn now but the methro makes me vomit for 2 days then I am nauseated for 3 more.....I hope and pray Genentech approves us both...Have a great day

[Sangye]

Lisa Marie, what reason did your insurance companies give for denying rtx coverage? I've been through it, and maybe I can help.