Nasal Septum hole NOT able to be fixed???

[debhaz22]

Hi all,
I went to see my ENT the other day and he said that if the hole in my septum gets much bigger I will "not be a candidate for surgery"! What?? Has anyone else ever heard this? I can't live with this hole in here...:sad:
Thanks

[windchime]

Hi Deb, Are you ready to get it fixed now so you don't run the risk of not being a candidate for surgery? I can't answer your question as I only have a deviated septum and nasal spurs which the ENT isn't concerned about. I also don't have wegs in the sinus. I would move with the surgery to avoid not being able to have it fixed later. Just my two cents worth. Good luck with whatever decision you make. :hug2:

[debhaz22]

Hi Cindy,
No, he said it can't be fixed now until they determine why it keeps getting larger. But he said if it keeps getting larger at some point it would "be too large for surgery"? That sounds crazy to me.

[windchime]

Sounds like a no win situation according to the doc. Is there an upside? I hope so. Maybe a second opinion?

[debhaz22]

Oh, definitely a second opinion. That just sounds crazy to me to leave it like that. :sad:

[MikeG-2012]

Oh, definitely a second opinion. That just sounds crazy to me to leave it like that. :sad:

Absolutely! Go find another well respected ENT and get a second opinion.

Sounds like you're not doing too bad in your new role as a bulldog Deb! I'm so proud! :rolleyes1:

[debhaz22]

Oh Mike, you would be SO proud of the bad a** bulldog I've become! I even got an appointment at Hopkins! So thanks for your encouragement :thumbsup:

[Alysia]

Hi Deb.
as long as your wg is active, any "fixing" of the nose will not be in place because wg can continue to destroy it. you first need to stop the wg's activity. it means also to stop the hole from being bigger. it means taking the right meds. it means getting a good treatment from a good wg-doc, which you are soon going to get.
and then, you can find a good ENT which specialized in those surgeries.
I am also waiting for remission to fix my saddle nose :sad:

[debhaz22]

THANK YOU Alysia! How long have you had the hole? Do you know how big it is? I've only had mine for 3 months and it's driving me crazy not being able to breathe thru my nose. How long after you developed the hole did you get saddle-nose? (sorry for all the questions :unsure:

[Alysia]

Hi Deb,
my saddle nose, is the collapsing of the nose bridge into the inside of the nose, after the cartilage was "eaten" by the WG. I still have a "wall" between the 2 nostrils. I have wg since 2008. at about 2010 I noticed a change in the nose, but minor one. something like little sign of the glasses.
only about less then a year before it bacame saddle. it was after YEARS of bleeding and crusting and all the stuff we know coming out from the nose, and pains, WITHOUT GETTING PROPER TREATMENT !
only about less then 2 years ago my doc finally gave me immunosupressnats. before that I was only on pred and bacrtim. even in an acute state, life risking, only pred saved me.
so things get worse and worse... mtx didn't help....only rtx stopped the deterioration.
but still once the nose started "saddling", less then a year ago, for about couple of months, it continue to "saddle" untill it stopped, a bit after the rtx started to work. so it is kind of still "new" nose for me, to get used to.... I am glad I have glassess...
ask whatever you want. I am here for you.

[annekat]

Deb, I am something like Alysia, except that I do have a small hole in the bony part of my septum, where the cartilage was attached, causing it to lose its support. I don't know if the hole has gotten bigger; would need my ENT to tell me that. I still have the "wall" between the two nostrils, as she does. My saddle nose developed shortly before diagnosis, as far as I know, since I didn't notice it at the time, and no one mentioned it, weirdly enough. I guess that is because I also wear glasses and they disguise it fairly well. Either that or everyone thought I was a drug addict and didn't want to say anything. Anyway, if my WG had been caught and treated sooner, perhaps I wouldn't have the saddle nose. Once I got proper treatment, I'm assuming the process of erosion of my septum was stopped or slowed way down. I can only hope it won't get worse in the future. It is likely I will never get it fixed, although if my circumstances change, I guess it could be a possibility. It causes me no trouble with breathing, so I'm thinking it would be a cosmetic procedure and not covered by insurance, which is currently Medicare.

[Juliesjewels]

Oh Mike, you would be SO proud of the bad a** bulldog I've become! I even got an appointment at Hopkins! So thanks for your encouragement :thumbsup:

Hi debhaz22,

What do you think was the determining factor that got you the appointment at JOhns Hopkins? My rheumatologist faxed all of my medical records to JH for consideration and I'm waiting to hear if I will get an appointment or not. Honestly I'm scared because if they don't see me I don't know what to do. I have this massive hole in my nose where my septum used to be. I have negative ANCa and two negative nasal biopsies. But I've got pain, fatigue, a nose that won't heal elevated SED rate, elevated C reactive protein, hearing loss, headaches, nasal pain and other symptoms. Actually my ENT fixed the hole in my nose on February 11 but the hole has come back because the ENT thinks I have vasculitis but the rheumatologist is not sure. That's why they referring me to Johns Hopkins. I am worried and scared to death that John's Hopkins won't accept me as a patient. I just don't know what to do because I feel so bad.


Sent from my iPad using Tapatalk

[annekat]

I don't know if holes in septums are routinely fixed, or if most people just live with them.... depending on the severity and how much problem they are causing, I guess, but your pain, etc. could be from general inflammation in the nasal cavity and sinuses.

In any case, if you are not yet diagnosed with WG, all the signs are pointing to it, and a referral to Johns Hopkins is definitely what you need. They can make a diagnosis without the signs your local docs were looking for, such as the positive ANCA and nasal biopsy. ANCA's are not always positive in WG patients and nasal biopsies are not always conclusive. I don't see why they would not accept you. Good luck, and I hope we hear from Debhazz22 soon.

[SpaceflightAddict]

I have this massive hole in my nose where my septum used to be. I have negative ANCa and two negative nasal biopsies. But I've got pain, fatigue, a nose that won't heal elevated SED rate, elevated C reactive protein, hearing loss, headaches, nasal pain and other symptoms.




I had exactly that same set of symptoms when I was at Johns Hopkins around this time last year; negative ANCA, two inconclusive biopisies, and a long list of sinus problems. I was admitted at another hospital, and they could not figure out what was going on, so they transferred me to Hopkins, and within a couple of days they had diagnosed me and started treatment.

The doctors at Johns Hopkins are excellent, and they will get to the bottom of it. Another option might be to go on the Vasculitis Foundation website here: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) and have your ENT or rheumatologist give someone on that list a call. I have heard of the doctors on that list doing phone consults with other doctors.

Best of luck to you, and I hope someone gets it figured out for you soon.

[blu4runner]

Johns Hopkins has some excellent doctors dealing with vasculitis. I am presently seeing DR Peter Merkel at the University of PA hospital. He does take new patients and spends a great amount of time on research. I would recommend him as well. He helped me when I was in a flair and I have no regrets.

[Juliesjewels]

All of your responses has given me hope. I suppose I'm just so worried about this that I tend to focus on the negative side. I, like all of you, just want a normal healthy life back. Five years ago I would've never dreamed that something like this would happen to me. I really want to be healthy again and that's why am hoping John's Hopkins can help me with that. I will certainly keep you all posted. Thank you again. Julie


Sent from my iPad using Tapatalk

[annekat]

You could send Debhazz22. a private message, too.... she probably just hasn't seen this yet.