EDAC and a brain scan,,,,,what does it all mean?

[windchime]

Today I finally received the last of my massive amount of medical records. :ohmy:And that's basically just the last couple of years. In reading through them a couple of thing stood out and I would like to know if anyone has any experience with the same that can be shared.

The first was a note in my Pulmonary file from my last visit on February 12th. It said that I have excessive dynamic airway collapse or EDAC. I know the definition and understand that, but would like to know of others experiences with it. Unfortunately this was the first I heard I had it. :w00t: Maybe they decided after I left the office and when they (the PA and the doc) decided it was applicable. I will ask them about it at my April visit. I'll have a new lung CT by then too and will see how the bronchs are doing.

The next is the Radiology report on my brain scan, which I didn't get a copy of last year. This is more confusing and even more confusing trying to look it up. :ohmy: If there are any out that have vasculitis in the brain, maybe you can help. The way I'm reading it I may have some vasculitis in the brain since I don't have migraines. The following is the report.

"There is a thin rim of periventricular signal abnormality as well as a few scattered, small to moderate sized foci of abnormal signal intensity primarily involving the more peripheral portions of the centrum semiovale and corona radiata bilaterally, without involvement of the subcortical U-fibers, the etiology of which is most likely ischemic (migraine disease or vasculitis.).
There is a single focus of abnormal signal intensity oriented perpendicular to the long axis of the lateral ventricles; however, this most likely is not related to a demylelinating disease." I know the last few words are the normal CYA statement made by Radiologist.

Sorry this is a long post, but inquiring minds would like to know so if you feel like sharing or just want to comment please feel free.

PS Big print easier to read....LOL :lol:

[drz]

Have you consider all the possible migraine symptoms to rule it out? It can present in different ways you know.

Migraine Symptoms - Headache, Pain, Nausea, Vomiting (http://ask.healthline.com/health/migraine-symptoms)

[annekat]

I can't comment on the specifics, but it sure is disconcerting when you see or hear of things in your medical records that you were never told about. This has happened to me, and I don't like it. I hope you are filled in on these things soon. It seems like we have a right to know what is going on in our own bodies, and a right to have it explained to us. I also hope neither of these things turns out to have serious repercussions for you.

[vdub]

I have vasculitis of the brain, specifically the pituitary. If your docs read the report from the brain MRI and determined it was nothing, then they wouldn't necessarily have mentioned anything to you. The odds of wegs in the pit is 1 in 10 million, so you certainly have the odds working in your favor. However, the pit is just a small part of the brain, so maybe there is something more -- I'm certainly no expert. It's something you might want to make a note of to ask about during your next doc visit, but given it is two years old and nothing has been said and, given the odds of brain involvement, I wouldn't lose any sleep. Just talk to them about it on your next visit.

[Alysia]

Dear Cindy,
I don't understand any of these, but if you are concerned, go to meet your doc asap.
brain involvment is very rare, so I guess that you don't have it.
please check if this link can help you:
http://www.medscape.com/viewarticle/733606_1

the brain is so complicated: here is a story: a friend of mine was pregnant and in the ultra sound the brain of the baby looks abnormal. the docs asked my friend if she want to do an abortion because they told her that the baby might not be ok. she refused. she said that the brain is so complicated and who knows, maybe this abnormality is a good one. she already had a gifted kid, so she said that maybe this abnormality is a sign of gifted kids. and then she was right, and her baby turned out to be a gifted sweet girl, totally healthy.

so I hope that this will turn out as something not significant.
I am sending to you my love and prayers :hug1:
please update us.

[windchime]

Have you consider all the possible migraine symptoms to rule it out? It can present in different ways you know.

Thanks for the info. I do get headaches just none of the accompanying symptoms with it. I have had what I thought was a migraine when taking Cipro which is why I won't take it. Horrible headache with that med. Other than that I just usually get tension headaches from looking down at my tablet too much. :rolleyes1:

[windchime]

I will ask the neurologist about it next time I see him, but will also take the report to my Rheurmy when I see her next. I think I may have to take the path report to the neurologist for him to believe that I actually have Wegs. More good news. A new sleep study tonight. Or a titration study where they reevaluate my cpap levels. I may also have to add oxygen to the cpap at night because pulse ox is dropping at night apparently. Diyrd an overnight pulse ox earlier this week. Feeling depressed tonight and like I'm a 100 years old with all these problems. Right now wishing I NEVER would have had that bronch in Nov. So many escalating problems since. Feeling very sorry for myself.....Got to leave for the sleep study, yipee.

[mmthomm]

I was finally diagnosed in Nov 2013. I had already had 9 months of joint/tendon involvement and a diagnosis of seronegative rheumatoid arthritis. In retrospect, the first place my Wegener's showed up in my head was in June 2013 inmy pituitary with the development of diabetes insipidis (not fun!) but at the time they thought it was a pituitary adenoma. DI under control with meds but then it went on to invade my meninges, led to two blood clots, and grew a mass from my nasopoharyx to my skull base...(i had outrageous headaches and almost total loss of hearing in my left ear) and then I finally was diagnosed with Wegener's. :-). Honestly, I was just glad that I didn't have lymphoma which is what they originally thought...don't know that this is helpful to you at all but thought I'd share my experience...if there is any question about brain involvement though I would recommend an updated brain MRI with contrast that is read by a radiologist who specializes in neuro radiology.


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[vdub]

I'll be darned. My docs labeled me as #24, so I guess that makes you #25.

Was your pit totally destroyed? WG took out both my post and ant pit, hypothalamus, and pit stalk. I'm on desmo, levo, b12, hydrocortisone, d3, testosterone, and hGH -- all just for the pit issues. They even classify it as a separate disease from Wegs -- Granulomtosis Hypophysitis.

The GH will never go away -- its pretty much a done deal and it is treated by an endocrinologist.

Wegs is treated separately by a rheumy. There is some coordination between the to docs, but basically the diseases are distinctly separate at this point.

#23 is also on this forum. She was dx'ed just a week or two before me. She is a young mother living in Denver -- Jennifer. I talked to her once on the phone, but I don't see her on the forum very often. She had indicated that she was getting into a routine and doing well.

[mmthomm]

No...way! Want to write more but have to be at the gym early. I'm actually in the Denver area too and would love to connect with her to see who her doctors are...


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[vdub]

No...way! Want to write more but have to be at the gym early. I'm actually in the Denver area too and would love to connect with her to see who her doctors are...
She had been dx'ed just a couple weeks before me. From her posts, it looks like her docs called her #32. However, when I went to the specialists in SLC, they called me #23 and I told them I'd have to be #24 as Jen had been dx'ed a few weeks before me. So, I was #24 for a long time.

It looks as if Jennifer only had 4 posts then left. I used to have her phone # and called her several years ago. She's a nice gal.
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/1061-new-member.html

For a long time, my avatar was as you see it now. The numbering was based on this article.....
Pituitary involvement in Wegener's granulomatosis. [Pituitary. 2008] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/17492510)

The WG pit people are very rare....

[annekat]

Thanks for sharing your experience, mmthomm! What you have been through, and are going through, sounds awful, but how great that you can connect with others with those same very rare conditions. And one right in your area!

Assuming that you are a new member, welcome to the forum, and you might check out the New Member Introductions category from the main page of the forum, and tell us more of your story, whatever you'd like to share. You have come to the right place.

[mmthomm]

Thanks annekat. I am a relatively new member and just hadn't gotten around to doing the intro/my story thing...that's a good idea. I'm definitely grateful for the forum because it really has been a good source of information and support!


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[annekat]

Thanks annekat. I am a relatively new member and just hadn't gotten around to doing the intro/my story thing...that's a good idea. I'm definitely grateful for the forum because it really has been a good source of information and support!


Sent from my iPhone using Tapatalk No rush, whenever you are ready to formally introduce yourself. There's no rule about posting in a thread without the introduction routine first, especially if it is relevant to the thread, as your post here appears to be.

[Dirty Don]

No rush, whenever you are ready to formally introduce yourself. There's no rule about posting in a thread without the introduction routine first, especially if it is relevant to the thread, as your post here appears to be.

You're such a 'blog cop' Anne...LMAO...ohoh, ducks as piece of jagged pottery flies by!!!!!!!!

[annekat]

You're such a 'blog cop' Anne...LMAO...ohoh, ducks as piece of jagged pottery flies by!!!!!!!! Oh, Don, I wasn't trying to be a cop! And yes, I have plenty of broken pottery.... I wish Arizona was closer!