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Post-Treatment / Delayed facial droop after middle fossa?
« Last post by chicagorose on Today at 08:35:29 am »
I'm wondering if anyone else has experienced this. I had middle fossa surgery on March 13th to remove AN on my right side. Everything was fine, no facial issues although I did have some serious balance issues. Upon discharge, there were still no facial problems, but the balance issues remain. I'll be going for vestibular therapy for that. Yesterday, 3/23 I started noticing a little bit of facial drooping especially when I try to smile.  Today, the facial drooping is a little more pronounced and I'm starting to deal with my right eye drying out. Is this something that happens? If so, why is there such a delay and what should I do about this?

Inquiries / Re: newby with questions
« Last post by MarlaB on March 23, 2018, 04:39:39 pm »
Two friends of mine had to wait for their MRI because they had, like you, recently taken steroids to see if that would resolve their issues.

Their docs (different ones) seemed to think that the steroids that were still in their systems would show up oddly on the MRI and perhaps give a false positive or a false negative...I can't recall which one. They had to wait a few months after they stopped taking them.

Anyway, before you spend the $$ on the MRI, it might be worth asking your doc/radiologist the question.

And either way, knowing yes or no, we are all here, alive and offering support and understanding. This is a great group you wouldn't want to ever offer to join.

Dr. McCracken did our March webinar- if you are an ANA member you can view in our Memeber Section. If you are not, contact for a free temporary membership and patient kit!
AN Community / Re: mgus
« Last post by chicagorose on March 23, 2018, 01:43:21 pm »
I was actually diagnosed with SMM, the intermediate stage between MGUS and MM, several years before being diagnosed with AN. There is no correlation between the two.
Post-Treatment / Scalp Spasm
« Last post by dsf767 on March 23, 2018, 01:37:26 pm »
Hi All,

Searched for this and didn't find much info on it so figured I would ask. I had my 3.5 CM AN removed 9 Weeks ago via Retrosigmoid then a week later I had a second surgery to clean out an infection and fix a small CSF leak.

During that second surgery they removed the metal mesh covering where they removed my tumor I was told this for 2 reasons, when you have an infection they metal cannot be cleaned and they would worry about the infection coming back and that i had a sensitive scalp so they were worried the metal had something to do with the infection in the first place.

Anyhow it's now 8 weeks since that surgery and everything has healed well and at my follow up my neurosurgeon was very happy with how everything looked at this point as far as healing goes. He did mention without the mesh my scalp will slowly fill in the spot where he opened my skull with scar tissue and that I don't have anything to worry about not having it even though I now have an indentation in my skull.   

With feeling returning to that part of my scalp what I have noticed is a slight spasm/twitching if I place my fingers directly over where the hole was made to remove my AN. It is not at all painful just slight pulses in that area. Sometimes they are stronger and I can fell them easily other times they are very faint.

I suspect its most likely due to the nerves in my scalp working extra hard to regenerate as well as buildup the scar tissue but like I said I had not seen it discussed in my searches on the forum so figured I would ask the question.   
Inquiries / newby with questions
« Last post by melb1978 on March 23, 2018, 01:30:49 pm »
Well, My MRI is scheduled for this Tuesday.  For the last 3 weeks i feel like i've been in the twilight zone.  I woke up one day with what felt like really stuffy ears.  After a few days i went to my gp who diagnosed it as "allergies" (with no other symptoms) and gave me a steriod shot.  Great - 3 hours later my hearing returned, but the next day i woke up in the same situation and went to urgent care.  They put me on a steriod pack - hearing returned shortly after the first does, but every morning i wake up and the hearing is gone for several hours until i take my morning steriod dose and i get it back.  Fast forward...i'm on steriod pack number 3.  I could deal with the sudden hearing loss but the amount of pressure that builds in my ears is terrible.  Without the steriods my hearing tests shows a significant hearing loss in my left ear, and no hearing loss in my right.  i'm having pressure in both but the left is far worse.  i have the facial numbness off and on and just in the last few days started feeling pressure in between my eyes and nose.  Nothing like what's in my ears.  The ear pressure is unbearable and makes it hard to function. i've never in my life had a sinus infection, ear infection or allergies.  This is all so out of the blue for me.  I'm a 39 year old mother of 2 and i just want to get this figured out.  Did anyone else have this experience before they were diagnosed?
Physicians / Re: DR. McRacken and DR. Vandergrift Medical University South Carolina
« Last post by kestes on March 23, 2018, 01:13:14 pm »
Hi i was just diagnosed yesterday with AN about 12mm and was given  a referral for McRacken or Lambert at MUSC as i live in south carolina.  And was glad i found your post. Hopefully i will get the referral
Next week and will see one of the two soon. I appreciate you posting recent information. What made you choose surgery over Gamma Knife?  I have 10% hearing loss, balance issues, tinnunitis and a stuffy head feeling along with vertigo and that sent me to the doctor, then mri, then they found the tumor. Is there any other info you can given or questions i should ask the drs or anything else from your MUSC experience or anything in general you might think is helpful. Looks like you have had great success and outcomes. Congrats! I truly appreciate it!
Post-Treatment / Re: CSF Leak?
« Last post by gunns on March 23, 2018, 08:55:00 am »
Well Monday is the CT day. Just waiting for the insurance, Medicare and VA to figure out who will get stuck with the bill. The leak is getting more active now. This is getting old. Hummmm.... I do have some JB Weld out in the garage. LOL
Post-Treatment / Re: CSF Leak?
« Last post by tarheelEH on March 23, 2018, 08:20:36 am »
Thanks Cheryl for sharing your experience.  Now I am three weeks out and feel much better as the suture has absorbed and I can shower without plug the ear anymore.  I was very active but going forward really fear to do any exercise or lifting that increase head pressure.  I don't know when I can resume yoga or weight training without thinking the leak again... I am at North Carolina, but Duke won't be able to do the test, they have to send sample to Mayo Clinic of Minnesota.
Good luck too Gunns and please post your CT result if you would.
Hearing Issues / Re: Opinions about BAHA
« Last post by on March 21, 2018, 07:31:45 pm »
I am 90 years old and had a Baha super power 5 implanted.(Cochlear was  out of question due my age)

No infection .just simple  irritation on upper  implant post with a slight swelling due accumulation of  loose "FAT"

Surgeon said it was his fault not removing it ,due danger of infection!

Revision surgery may be in order at a later date to remove "FAT"

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