One down, two to go!

[LisaT]

Had a breast biopsy this morning (not related to Wegs); it wasn't too bad and I've decided after the last few such procedures that having chronic pain gives one a high pain threshold. I used to wonder whether my and other chronic pain patients' nervous systems were hypersensitive to pain. But I have these procedures that I'm told will hurt or be uncomfortable and they're not bad at all, and I think it's just because I'm so used to being in constant pain it's nothing in comparison to what I feel every day. Two more appointments this week: the special chest ct to look at a structure on or near my heart. That's the one I'm really worried about. Then a follow-up eye one that's No big deal. Fun week! Silver lining: they told me to rest for two days and do no housework or cooking. No need to tell me twice! So I'm catching up on some very important tv shows... And looking forward to whatever Dean makes for dinner! :biggrin1: I've decided that what we really need in this family is another wife. :lol:

[pberggren1]

I sure hope the breast biopsy comes back normal. Hopefully this heart thing is no biggy as well.

2 wives does make sense but if you want 2 husbands just let me know, I'm available.

[LisaT]

I sure hope the breast biopsy comes back normal. Hopefully this heart thing is no biggy as well.

2 wives does make sense but if you want 2 husbands just let me know, I'm available.

Do you cook? :love:

[windchime]

When do you find out about the breast biopsy? Did you get the wire stuck down into the spot where they needed to do the biopsy? I had that done and it was without a numbing agent. It wasn't too bad. I think you're right about pain, I've developed a higher pain tolerance as the years go by. Good luck with the biopsy and ct results.

[pberggren1]

Do you cook? :love:

I make a mean chili and beef stroganoff. I can do many other dishes as well like chicken catiatore.

[LisaT]

This is very uncharacteristic, but I'm not too worried about the biopsy. They were taking it because of microcalcifications that are usually benign. Perhaps I'm not worried because there is an entire beautiful facility full of doctors and treatments and millions of dollars to fight breast cancer. It seems more of a known entity than WG.

[pberggren1]

I'm sure you are fine hun.

[LisaT]

Thanks! Found this info in the newfangled ct scanner they'll be using on me on Thursday. I had no idea it was such an innovation. In case anyone is interested:

St. Paul's Hospital is First in Canada to Scan Patients with Groundbreaking Technology (http://www.providencehealthcare.org/radiology/high-definition-scanner.html)

[annekat]

Just a quick comment on the pain tolerance thing. I've come to think that about myself, too, that I have a high pain threshold. Not that nothing ever hurts! But I've had dental issues that should have hurt a lot but didn't at all, and have not experienced any of the pain that many on here have with their sinuses, even though I have extensive bone erosion and disturbance of tissue in there. Not sure what it all means.

Anyway, Lisa, I wish you the best of all possible results on all of your tests!

[LisaT]

When do you find out about the breast biopsy? Did you get the wire stuck down into the spot where they needed to do the biopsy? I had that done and it was without a numbing agent. It wasn't too bad. I think you're right about pain, I've developed a higher pain tolerance as the years go by. Good luck with the biopsy and ct results.
It was a core needle biopsy, they make a small incision and then shoot the needle in and take tissue samples. It was with freezing. I get the results June 2nd the same day as I get chest ct results. I called in the big guns... My mom is coming with me. :biggrin1:

[windchime]

Good luck with it all. The new CT scanner sounds really neat. Def state of the art.

[Alysia]

you are a brave girl, Lisa :thumbsup:
I had breast biopsy couple of years ago, before wg, and it was painful like hell. I was whimpering. (I didn't want to tell you about mine yesterday when we chat before you went there, not to frighten you). but maybe I am too sensitive. every thing is aching even pedicure.
I am sure it will be nothing. mine was too.
good luck ar the CT. I hope this will nothing as well. you already have WG, so enough is enough.
sending to you prayers and hugs :hug1:

[pberggren1]

I'd be a little sensitive too if someone was poking needles into my breast. Speaking of needles, when I went to the lab today I had my oh so favorite phlebotomist....NOT, and she poked me hard and it still hurts. Now there is a big bruise there.....GRRR.

[Alysia]

I'd be a little sensitive too if someone was poking needles into my breast. Speaking of needles, when I went to the lab today I had my oh so favorite phlebotomist....NOT, and she poked me hard and it still hurts. Now there is a big bruise there.....GRRR.

How dare she ? didn't she know you are Batman ?

[pberggren1]

I guess not.

[LisaT]

you are a brave girl, Lisa :thumbsup:
I had breast biopsy couple of years ago, before wg, and it was painful like hell. I was whimpering. (I didn't want to tell you about mine yesterday when we chat before you went there, not to frighten you). but maybe I am too sensitive. every thing is aching even pedicure.
I am sure it will be nothing. mine was too.
good luck ar the CT. I hope this will nothing as well. you already have WG, so enough is enough.
sending to you prayers and hugs :hug1:

Right back at ya, Alysia... :hug2: I guess I've reached the point where I've lived with pain for so long I no longer fear it. All it can do is hurt... And eventually pass or let up. I sort of hypnotize myself by telling myself it won't hurt too bad, all will go well, it will be over soon etc. They were a bit worried I'd bleed too much because I'm on an NSAID (anti-inflammatory), so I also told myself I wouldn't bleed much... I bled less than a 'normal person' not on meds that thin your blood. It may or may not have had anything to do with my self-talk, but either way it kept me calm and I didn't need to take an Ativan and be driven home in a stupor. (Knocks me right out... I take a quarter of one pill for major dental work and end up so loopy I keep trying to comment on the tv show they've put on for me while they are actually working in my mouth... :lol: Thank you for your prayers and hugs, and same to you. :love:

[LisaT]

I'd be a little sensitive too if someone was poking needles into my breast. Speaking of needles, when I went to the lab today I had my oh so favorite phlebotomist....NOT, and she poked me hard and it still hurts. Now there is a big bruise there.....GRRR.
I'm sorry she gave you an owie... :hug2: I hope it feels better today. Ice packs help. They gave me a special one to wear in a special place, so I walk around looking lopsided for two days.

[Alysia]

Right back at ya, Alysia... :hug2: I guess I've reached the point where I've lived with pain for so long I no longer fear it. All it can do is hurt... And eventually pass or let up. I sort of hypnotize myself by telling myself it won't hurt too bad, all will go well, it will be over soon etc. They were a bit worried I'd bleed too much because I'm on an NSAID (anti-inflammatory), so I also told myself I wouldn't bleed much... I bled less than a 'normal person' not on meds that thin your blood. It may or may not have had anything to do with my self-talk, but either way it kept me calm and I didn't need to take an Ativan and be driven home in a stupor. (Knocks me right out... I take a quarter of one pill for major dental work and end up so loopy I keep trying to comment on the tv show they've put on for me while they are actually working in my mouth... :lol: Thank you for your prayers and hugs, and same to you. :love:

that sounds awesome, to tell yourself all of this and to also listen to yourself :thumbup:
thanks for your good words. waiting to hear your update about the CT and eye check and holding your hand during them :hug1:

[LisaT]

that sounds awesome, to tell yourself all of this and to also listen to yourself :thumbup:
thanks for your good words. waiting to hear your update about the CT and eye check and holding your hand during them :hug1:

Thank you! I will appreciate having you there with me. :thumbsup:

[LisaT]

I make a mean chili and beef stroganoff. I can do many other dishes as well like chicken catiatore.
Sounds yummy.
I do! :thumbup:

[Dirty Don]

CACCIATORE! Oops, sorry...spilled my coffee...again!!! Does sound good tho!! You hire out Phil?!?!?! LOL!

[jvilner]

Holding only good thoughts on your biopsy. 🙏

[LisaT]

Thanks everyone, for your good wishes. Much appreciated!

[Alysia]

CACCIATORE! Oops, sorry...spilled my coffee...again!!! Does sound good tho!!

mmm learning new recipes..... maybe we need a thread for sharing recipes all around the world, only healthy ones, of course... (for me only Kosher :wink1: ).

and we still need to find out, Don, what is the secret of YOUR coffee ?

https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/t1.0-9/10336723_629599920450629_963690338366988298_n.jpg

[Alysia]

:back on topic:

sorry :wink1:

[pberggren1]

As long as some of the recipes have bacon.

[mishb]

I have had a couple of core biopsy's as well and found that they didn't hurt at all.

The results were all good - benign fibroadenoma's.

Next time I have to have it done I'm going to ask them to test for granuloma's

I hope you get great results for the biopsy and the scan Lisa

[Lilly]

Wow Lisa T, you are incredible! I Admire you so much. It seems like a lot of weggies are strong! I guess sometimes we have to be, but you are truly a strong lady, and your family does not need another wife! Your family is lucky to have you! I wish you the very best with your tests, and pray they all turn out negative. Keep us posted! And I Love your Picture by your name. Is that a picture you made? Its awesome! Ill be checking on you :-)

[LisaT]

Thanks everyone for the support. Lilly, I don't feel strong at all, some days I just want to curl up and cry (and some days I do), but I can't mope around for too long, have to keep moving. My house is a disaster and my kids are getting dressed from a mountain of unfolded laundry... Of course I can't stand not being able to do what needs to be done. I have a pounding headache on waking these days. The biggest pain in the butt is that I can't have any coffee this morning until after the procedure (ct) which is at 10 am.:mad1: I usually have two cups before I really move. So, not feeling very strong today, but coming on the forum and seeing everyone's kind words helps... :love: Soon my kids will get up and I'll put my mom face on and start getting them ready for the day. They make me strong in a way, because they need me. I did do the drawing but I copied it from something on pinterest so it's not an original. I find doodling a good distraction sometimes. Thanks for all your kind words and caring!

[Dirty Don]

The point is, Lisa, that you do/did get up and you do try...it's not enough, it's never enough, then again if that's not enough then you are on the right track cuz you still want more...keep on keepin on...

[jvilner]

If anyone ever heard if Dr. Lowe from Recovery- he said "lower your expections and your performance will rise".

[LisaT]

If anyone ever heard if Dr. Lowe from Recovery- he said "lower your expections and your performance will rise".

I hear ya. Just wondering when I will have lowered them enough... Some days it's hard not to feel useless... Don't worry, I know that's not the case, it's just a feeling...

[Beverly]

Yes, Lisa, I have those times of feeling useless. Then someone encourages me, I get over it and the crying. Anxious to hear from you about test. Am praying for you and am proud that you get up to take care of your family. It is ok that they take their clothes from a pile:thumbsup: At least they are clean! I too like your pic and wondered if you drew it. Especially like the glasses:cool1:

[LisaT]

Thanks, Beverly! Funny, I had great red glasses like one in the drawing and lost them in my own house. I figure they must have somehow ended up in the garbage or recycling. I loved those glasses! I know those times of feeling useless and depressed are temporary, so now I just remind myself of that when I'm in a funk. This too shall pass.

[LisaT]

Two down, one to go! Yesterday sucked but today is a new day. I had a bad headache, and not having morning coffee (I had to hold off until after the CT) wasn't helping. Then the nurse gave me beta blockers to slow my heartbeat… which didn't work. I must have been anxious or something. So he repeated the dose and waited… it started to work but not enough. Finally, after a third dose and some interesting conversation while my headache intensified, my heart rate was low enough and they were able to do the CT. What they didn't tell me until I was halfway through was that I then needed to take nitroglycerin to dilate my blood vessels. This didn't sound to me like a great idea for someone with inflamed blood vessels, but the nurse reassured me that it would be fine, it just might 'give' me a headache. I think I'm completely incapable of coping without coffee, because the thought of making my already brutal headache worse, caused me to burst into tears. He was so sweet, brought me water and wiped my tears with my blankie. It made me realize two things: 1. how much of a difference it makes when someone just takes a moment to empathize and show some care; and 2. that every once in a while I just want to be babied. Once I got out of there and stopped for coffee and curry (my comfort food--I know, I'm Jewish but Indian food is just so much better! Unless of course, you live in Israel where the food is delicious, right, Alysia?) Anyways, that's over and done with and on to the next. However, since it's raining and my back is acting up, which makes it hurt to drive, I'm going to cancel today's eye follow-up and spend the day doing lazier and more fun things. Nothing urgent about making sure the eye procedure looks good on healing. I don't think. Hope everyone is having a good day!

[jvilner]

Hey LisaT-I live in Israel too! Yes the food here is delicious. Plus we have great coffee and curry-so come on over. We'll start our own WG chapter/vasculitis org here 😉

[LisaT]

Hey LisaT-I live in Israel too! Yes the food here is delicious. Plus we have great coffee and curry-so come on over. We'll start our own WG chapter/vasculitis org here 

I spent a summer in Israel many years ago (half of it on Kibbutz) and didn't want to leave. I loved it there and felt surrounded by family. The weather wasn't bad either! I'd love to go back someday.

[Alysia]

Hi Lisa,
you were brave as well in that scary CT :thumbsup: :hug2: you were so blessed to have that empathic doc, it really makes the difference.... we all need to be babied when it hurts or scary.... I hope that the headache went away.
when will you get the results ? praying for good ones...
why did you have to do that CT ? is it wg-related or other ?
and yes. the food here is delcious.... as Joyce wrote above, you are invited, just name the food that you like, and I will cook it for you :razz:

[LisaT]

I loved the falafel and pizza in Israel (the New York style pizza in Jerusalem, yum!) but now I can't eat either (unless the falafel is without wheat and I eat it without pita). All Israeli salads are delicious. I couldn't eat meat there for so e reason. I think it had to do with the chicken coops on the kibbutz and their 'aroma'. I stopped eating red meat for ten years after the trip but started again the moment Sophie was born. I must have needed iron! I've been a carnivore ever since. Now craving one of those yummy chopped cucumber tomato salads. What is the herb that's chopped up and thrown in? I must have this today.

[Alysia]

I loved the falafel and pizza in Israel (the New York style pizza in Jerusalem, yum!) but now I can't eat either (unless the falafel is without wheat and I eat it without pita). All Israeli salads are delicious. I couldn't eat meat there for so e reason. I think it had to do with the chicken coops on the kibbutz and their 'aroma'. I stopped eating red meat for ten years after the trip but started again the moment Sophie was born. I must have needed iron! I've been a carnivore ever since. Now craving one of those yummy chopped cucumber tomato salads. What is the herb that's chopped up and thrown in? I must have this today.

do you mean this herb ? Parsley - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Parsley)
I don't know how to make Falafel but I know a good place to buy it.... :wink1:
as for the others, you prob means to this: Hummus - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Hummus) and this Tahini - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Tahini)
which we usually buy and not make at home.
but I can make for you stuffed chicken, stuffed peppers, soup with Knaidlach, kebab, kugal, or Salmon with cream.... all Kosher.... anyway, I think that the home-kitchen is not so different....

[LisaT]

do you mean this herb ? Parsley - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Parsley)
I don't know how to make Falafel but I know a good place to buy it.... :wink1:
as for the others, you prob means to this: Hummus - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Hummus) and this Tahini - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Tahini)
which we usually buy and not make at home.
but I can make for you stuffed chicken, stuffed peppers, soup with Knaidlach, kebab, kugal, or Salmon with cream.... all Kosher.... anyway, I think that the home-kitchen is not so different....
Now my mouth is really watering... I love hummus and tahini... Couldn't remember it was parsley in the salads. Now I have to buy some. I was thinking it might be cilantro.

[Alysia]

can be cilantro as well. I prefer cilantro.

[jvilner]

Most if the time it's parsley cause a lot of people don't like cilantro. I've even had it with mint. Lol- I'm from the garden state (nj), but the veggies are far better here.

I sometimes wonder with eating middle eastern diet (which is supposed to be so healthy), how'd we get WG?!

[annekat]

Cilantro popped into my head although I know absolutely nothing. It has a little more interesting flavor than parsley. It is used here in salsas and lots of other things......

[LisaT]

I love cilantro. Threw some in my salad last night, inspired by this discussion, but it was from the freezer (I buy it fresh then chop up and save some if I haven't used it all)--I think freezing made it lose its flavour. The salad (inspired by the Israeli salads we were talking about) was delish though. :drool:

[Michael Bell]

could have been a super villain in diguise. Watch yourself Phil.
Mike

[pberggren1]

Which one are you Mike?

[Michael Bell]

the old grey haired one on the left, the others are my sons, their parteners and my grandchildren.
Mike

[LisaT]

I realized that I have yet to post an update, although I've told some people individually. I got mostly good news!!! The breast stuff is benign and she said given my age and lack of family history of breast cancer I don't even need mammograms annually any more. Since they injected some sort of little metal marker when they did the biopsy, the same area won't be noted as a concern or need follow-up again. Then the chest ct results were slightly more complicated, but the good news is that they are almost certain it's not a tumour, and pretty certain it's not fibrosing mediastinitis (which nobody seems to know a lot about, but is more rare than WG and more difficult to find an expert and a treatment… however in reading a bit about it while awaiting results I came across info that Rituximab is showing good results in a trial, so I went in with a plan just in case…) The cardiologist, who is young, brilliant, and kind, felt that it is most likely prior granulomatous disease, which if I understand correctly WAS active WG or similar (I guess RA can do the same thing), but is no longer active and not growing. The only way to know for sure other than a PET scan (which is not available for cardio patients at all and can only be ordered if you have a confirmed diagnosis of sarcoidosis), is to scan again in 6 months to make sure it hasn't changed. Surprisingly, I'm comfortable with this. I used to FREAK OUT while waiting to find these things out, and have been pretty stressed waiting for this one, but little by little I'm learning to live my life 'in the meantime' and not obsess as much about the eventual outcome. Whatever I find out in six months, I can try to have a great six months or I can waste a lot of time and energy worrying about it. But I have faith in this doc, and she spoke with 'the' head of radiology at one of the major hospitals here. Also even tried to get me into a longitudinal sarcoidosis study just to get the PET scan. She feels it's safe to wait six months and not keep exposing me to frequent radiation bc I've had soooo many scans lately. Anyways, just as an aside fyi for those dealing with old granulomas/scar tissue… I saw my Bowen therapist/friend yesterday who knows a lot about natural health; she suggested taking serrapeptase, which can apparently eat the dead tissue. So I will run that by my pharmacist and try it if it's safe with my other meds. Hope everyone is feeling okay!

[annekat]

Glad to hear the good news, Lisa!

[Alysia]

good news are awesome :hug3: thanks for sharing.

[windchime]

Glad the news was positive Lisa. Relax now and enjoy the next six months.

[LisaT]

I still need to follow up with a second opinion etc as I'm not convinced I'm receiving aggressive enough treatment,... And have some relatively new and some worsening symptoms. But that was a huge relief and now I will plod along. Thx everyone for your support.

[LisaT]

Glad the news was positive Lisa. Relax now and enjoy the next six months.

I hope and pray every day for better news for you too. :hug2::hug2:

[jvilner]

Happy for you Lisa!!

[LisaT]

I should probably rename this thread... I just wanted to share (and record... This has become a bit of a health journal because developments are all in one place). I just saw ENT and two residents. More good news! My ears look fine and the plugged feeling /hearing troubles are likely eustacean tube dysfunction. My throat looks somewhat better than before starting meds. I have a 9mm airway. I'll have to read more on the stenosis threads but I think that's decent. And my nose doesn't seem too bad (so I'm thinking my worse symptoms the past few days (the yucky stuff you all know too well) could be a bit of the kids' cold but under control because I've been using all my supplements, tricks and potions. Thy would explain why I'm even more tired than usual. Finally, even my nasal cavities look a but healthier. So maybe these meds are working! He said to see my rheumy about headaches/ruling out wegs in my head. My hope is that if all I these other symptoms are under control the headaches are not from wegs. My blood work also looks ok so... Fingers crossed. I was very happy to hear him teaching the residents about wegs and discussing the Cleveland clinic protocol for stenosis and how minimizes the need for surgical procedures. He seems optimistic that I may not need dilation but said to come back in the event of any breathing troubles. He had much nicer bedside manner this time and instilled more confidence. Yay! (Hands a bit shakey, though, which worries me with a surgeon but could be an off day, too much coffee, nerves around his pretty young resident. �� who knows? I'll keep an eye on it next time especially if he ever suggests surgery.

I aalmost feel feel bad reporting all this good news when others are going through varying degrees of the medical nightmare. But I know this is a place where one person's good news is everyone's good news, and I hope that this will help others who aren't getting good news right now to see hope and a light at the end of the tunnel.

Thank you so much to all of you for the help and support and safe place to vent, cry, laugh, connect and most importantly engage in the illicit trade of spoons. ��

[annekat]

I'm glad to hear some good news. You are so right that on here, anyone's good news is everyone's. I, too, hope for better news for some others of us....

[windchime]

Please always share your good news. I 'm happy for you, now if you could just feel a little better. Cold, cold go away.

[pberggren1]

That is awesome news sweetie. Glad to hear you like your ENT and the appointment went well. I assume you meant to put a 1 in front of the 9 for 19mm instead of 9mm. 9mm is extremely small and I doubt you would be getting around as you do with that size of trachea. Mine is around 17mm with slight stenosis.

What meds are you currently on?

[BookNut]

SO VERY happy for your good news! Good news gives everyone a lift!! And before I forget....I got such a kick at Phil making the kind offer of being a second husband. Awesome Phil!! There are days that I could use someone else to do the cooking. Bring in that chicken caciatore!

Being confined to my chair has helped me catch up on a lot of threads. Again...Great news, Lisa!!

I think tomorrow I should feel much more normal myself. Another step down on prednisone, my high dose clarithromycin is kicking in, AND my son and granddaughter arrive for a visit tomorrow evening. Yay!!

[LisaT]

That is awesome news sweetie. Glad to hear you like your ENT and the appointment went well. I assume you meant to put a 1 in front of the 9 for 19mm instead of 9mm. 9mm is extremely small and I doubt you would be getting around as you do with that size of trachea. Mine is around 17mm with slight stenosis.

What meds are you currently on?

thanks! I think we're talking about a different part of the airway... My stenosis is subglottic, just below the vocal cords. He definitely said 9 millimetres. I discussed this with someone at the support group dinner (more on that when I have more time/ energy but it was good)who said 9 is really good, normal for women is 10... Is your stenosis lower down therefore at a spot that is supposed to be wider? I have no idea where the trachea begins and ends. Still learning but that's the only thing I can think of to explain...

[pberggren1]

Nope, same area. My stenosis is around the 4 ring I believe. The trachea begins at the larynx and ends at the branch.

How was the meeting?

[LisaT]

I'm very confused then about the discrepancy. Hmmm. Will have to look into it further. The meeting was good. It was really nice talking to other Weggies in real life. Everyone's symptoms and route to diagnosis are so different. It was slightly overwhelming but I'm really glad to have found the group and they all seemed really nice and helpful. I couldn't take a photo because my iPhone was recovering from accidentally having a bath earlier, but someone else took photos and if he emails them I'll post.

[LisaT]

I'm not sure whether this helps clear up the different measurements / locations of stenosis:
What is subglottic stenosis?

Subglottic stenosis (SGS) is a narrowing of the airway below the vocal cords (subglottis) and above the trachea. Subglottic stenosis will involve narrowing of the cricoid, the only complete cartilage ring in the airway. This narrowing is often caused by scarring in the larynx just below the vocal cords but may also involve the vocal cords and affect the voice as well. Subglottic stenosis comes in two forms: acquired and congenital.

I have yet to find a discussion of the 'normal' measurement of the area vs. the size of a narrowed subglottic region and a narrowed trachea. But you know me... Dog with a bone. Stay tuned.

[LisaT]

Aha!

What Is the Difference Between Tracheal Stenosis and Subglottic Stenosis?


The biggest difference between tracheal and subglottic stenosis is the location of the narrowing. Tracheal stenosis occurs lower in the trachea (windpipe) and is more commonly associated with trauma to the airway, i.e. intubation or previous airway surgery. Subglottic stenosis in higher, just below the level of the vocal folds and is more often idiopathic (of unknown origin) or associated with autoimmune disease. In addition, the subglottis (the area just below the vocal folds) is naturally the most narrow point in the adult airway. To resect subglottic stenosis can prove more difficult because of the close proximity to the vocal folds.

from https://www.bcm.edu/healthcare/care-centers/otolaryngology/conditions/subglottic-stenosis

i have yet to find what the 'normal' diameter should be of the subglottic region, but this explains why it would be narrower than the normal measurement from lower down the airway.

[LisaT]

Finally! See the blue text below. It doesn't all make sense to me, but it appears that the 'normal' measurement of diameter is very different for men and women. According to this range, my airway falls within the 'normal' diameter for the subglottic region for women. If yours (Phil) was subglottic stenosis, it appears that the diameter would also fall within the normal range for men. But since it's lower down the trachea, we have to find the normal range for that location... Interesting stuff. It certainly doesn't feel like I have enough diameter of breathing space at times, but I take some comfort in this anyways, just because I choose to. Back to mom duties for now. :wink1:

Abstract
A device that determines cross-sectional area (CSA) of the airway by acoustic reflections (Hood, Inc) was used to measure subglottic area. Airway models were made from Plexiglas rings with known internal dimensions similar to clinically encountered stenoses of various lengths and diameters. Acoustic measurements of airway area were made and compared to actual CSA. There is a strong correlation between CSA measured acoustically and the actual area of simulated stenoses. However, when the CSA of the stenosis was < 0.64 cm2, the signal was impaired, resulting in overestimation of the stenotic CSA. In simulated stenoses with a CSA of < 0.38 cm2, acoustic measurement of the CSA beyond the stenotic segment was unreliable. Determination of the origin of stenosis was accurate with this method. The CSA of cadaver airways was also measured acoustically. The CSA 2.0 cm below the glottis of normal airways in males ranged from 1.28 to 2.74 cm2 and in females 0.87 to 1.43 cm2, with means of 2.16 and 1.09 cm2. It appears that acoustic measurement of CSA of subglottic stenosis is a feasible clinical technique that yields dimensions of the airway in situations in which direct measurements are impossible. It was suggested that this technique be used for assessment of subglottic stenosis and evaluation of the efficacy of treatment of subglottic stenosis.
PMID: 8678424 [PubMed - indexed for MEDLINE]
MeSH Terms
From: Acoustic measurement of subglottic ... [Ann Otol Rhinol Laryngol. 1996] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/8678424)

[pberggren1]

I might see my ENT by the end of this month and I will ask him.

[LisaT]

Only ask if the answer is helpful to you. Don't create work for yourself or take up your time with him on my account. I'm content with what my ENT said I was just curious about the difference...

[pberggren1]

I have go to see him anyway soon. No worries.

[Alysia]

I am so glad for the good news, Lisa :hug3:
always share good news. it gives us all inspiration and hope and smiles :biggrin1:
thanks a lot for the info. you are a good researcher and we are blessed to have you here :thumbup: :love:
must be awesome to meet weggies face to face. is any of them in the forum as well ?

[LisaT]

None of them seemed to be on the forum. The leader of the group, who is our age, said she used todo online forums but doesn't any more so I will search her name. She's been very helpful she said she has the same headaches starting at the base of the skull and they are sub-occipital lymph nodes.

[LisaT]

I am so glad for the good news, Lisa :hug3:
always share good news. it gives us all inspiration and hope and smiles :biggrin1:
thanks a lot for the info. you are a good researcher and we are blessed to have you here :thumbup: :love:
must be awesome to meet weggies face to face. is any of them in the forum as well ?

have you ever met another weggie? How far are you and Joy from each other?

[Alysia]

I once met a weggie at the cinema: I wrote it here on page 3 http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/3233-ent-docs-3.html

between me and joyce its about 2 trains to change, I think about hour and half of travel .... and also time and energy which are needed....

[jvilner]

I have dysphagia with both liquid and solids but no aspiration. Has anyone heard of this problem with WG? Just did a gastroendoscopy with a biopsy. Only thing that shows is esopholic esophagitis. Any connection? It's disturbing to for me as I cannot swallow meds I must crush them. No improvement with all the medication I've been on. Phil you are a wealth of information. Maybe you know of something?

[pberggren1]

I once met a weggie at the cinema: I wrote it here on page 3 http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/3233-ent-docs-3.html

between me and joyce its about 2 trains to change, I think about hour and half of travel .... and also time and energy which are needed....



Do you keep in touch with this young lady?

[pberggren1]

I have dysphagia with both liquid and solids but no aspiration. Has anyone heard of this problem with WG? Just did a gastroendoscopy with a biopsy. Only thing that shows is esopholic esophagitis. Any connection? It's disturbing to for me as I cannot swallow meds I must crush them. No improvement with all the medication I've been on. Phil you are a wealth of information. Maybe you know of something?



I'm not sure Joyce. Maybe you have a sphincter muscle problem. I have seen it in a few Weggies, but it is very rare. Are you on antibiotics for the infection?

[Alysia]

Do you keep in touch with this young lady?
no. we changed Phone numbers, but she looked at me like: what does this old lady want from me :wink1:

[pberggren1]

Old Lady?.....lol. Ya right, ur a hottie.

[jvilner]

Phil- no antibiotics except bactrim. Gastro doc says I should be better with prednisone. Got a second opinion and did another gastroendoscopy. Waiting for biopsy results. Am scheduled for mammometry but want to cancel cause I really don't want to do it.

Alysia-my daughters base is in Haifa and my son studies at the Technion. I can travel to you by car-then it's like 45 mins. When you feel up to it let me know. 😊

[Alysia]

Alysia-my daughters base is in Haifa and my son studies at the Technion. I can travel to you by car-then it's like 45 mins. When you feel up to it let me know. 
sounds good..... Haifa for me is only 30 min drive in my car....
we will continue on PM
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[annekat]

How exciting to think that the two Israeli Weggies might meet! I so look forward to this and seeing the pics. As for the little girl, Alysia, well she was obviously too young to appreciate your beauty and the value of knowing another Weggie.