Recent Posts

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61
Inquiries / Re: Should I be concerned
« Last post by Laura B on April 10, 2024, 11:03:58 am »
Just wanted to provide an update before I leave.

Got results of my MRI today seven months after my actual MRI and all completely clear. :)
62
Eye Issues / Re: Any other cycclists out there???
« Last post by Greece Lover on April 10, 2024, 11:03:12 am »
I have had something similar.  I noticed it in the fall (about four months after my surgery).  I walk to work every day and in a cold wind my eye would get blurry on the AN side. My doc said it was probably that the facial nerve was still healing if it took some trauma during the surgery and that it could improve over time.  It has and I don't generally notice it any more. 

don't know if that's what's up with you, but maybe could be.  He also said that it could heal over time, but that nerves heal very slowly. 
63
Thanks a lot  for your answer.

I was told by some people similar things. But right now I can only think my life is over. What your telling does give me a bit of hope, I am wishing very hard to believe in it.

Ona more practical aspect, I  am worried that I am not getting enough support. The ENT assigned to me by the hospital does not answer my mails.i had one appointment in February and the next one is not even scheduled… I will have a second MRI in June.
64
Inquiries / Re: Am I normal?
« Last post by UkulelesAreAwesome on April 09, 2024, 09:12:08 pm »
Angie,
I was diagnosed with thyroid problems in 2015. The problems were somewhat under control. The thyroid issues have been more noticeable and much harder to control after I had gamma knife. My thyroid problems are autoimmune  I've been diagnosed with hashimotos and graves. I take medication for it but it's a challenge these days. I have many of the symptoms you mentioned.
65
Post-Treatment / Re: First Follow up after SRS (any)
« Last post by UkulelesAreAwesome on April 09, 2024, 06:30:09 pm »
I follow up with the neurotologist and neurosurgeon who performed my gamma knife. I do a video visit with them annually. But I live 3 hours from the hospital so I have my annual MRI and hearing test done locally and the results are sent to the U of MN where I had gamma knife. I'm very happy with University of MN. I just don't like the long drive. I've had no problems with doing my MRI locally.. I think they can give you a copy of all of your MRI images and all of the medical reports.
66
Post-Treatment / First Follow up after SRS (any)
« Last post by DanFouratt on April 09, 2024, 10:01:14 am »
I went to UNC for my CK treatment. I believe they are technically excellent, however, my experience there as a customer/patient left me shaking my head at the time of service and since in my rescheduling of appointments.  I had to delay my 6 month follow up to allow for open heart surgery at Duke. The experience there was very different.  My question is has anyone not followed up with the Doctor who performed their SRS and simply went with another?  Thinking through it, I see no problem, but I may be a bit bias based on my past. 

All thoughts are welcomed as this is a big decision for me.

Thanks

Dan
67
Physicians / Re: Seeking advice for finding surgical teams
« Last post by DanFouratt on April 09, 2024, 09:25:51 am »

March 3, 2024 there was a presentation about high volume facilities put on by UCSD. You may find this helpful in your search.

I decided on the radiation treatment but had a surgeon identified.  I spoke with several surgeons across the country.  They all asked who mine was.  When I told them Dr. Brown of UNC without hesitation they said I was in great hands.  He has done these before like the presentation said is a good thing.

Good Luck on your decision journey.

Dan

68
Pre-Treatment Options / Newbie without diagnosis...yet
« Last post by DRMFFEB26# on April 08, 2024, 04:10:35 pm »
I have tried to search existing messages but have not seen any previous answers so here goes. Mid-January 2024, after swimming, right ear would not unplug, white noise started, and reduced hearing. ENT hearing test confirmed reduction of hearing. I underwent right inner ear steroid perfusion #1 & #2 within the same week. This caused me to become very hyper - which I warned ENT about since I am bipolar. I delayed 3rd shot for another 3 weeks. Since there has been no improvement in hearing since the shots, ENT suggested contrast MRI to rule out acoustic neuroma. I told ENT I had a very bad reaction to Prohance contrast dye 16 hours after a 2023 contrast MRI  - hives on face and neck and red rash over whole body that took a week to recover from with anti-itch meds. Because of this, the contrast MRI must be done at the hospital (not outpatient) with the following pre-treatment: 50 MG Prednisone 13 hours before MRI, another 50 MG Prednisone 7 hours before, and another 50 MG Prednisone 1 hour before, plus 50 MG Benadryl 1 hour before MRI. I told ENT this would send me into a Bipolar episode. I did talk to my psychiatrist who prescribed 2 drugs to counteract the Prednisone high that I would need to take daily a week before and a week after and another drug 3 hours before MRI. I decided to wait for 3 months before deciding to have contrast MRI to see if my hearing improves. So, my questions are: 1) has anyone required the same pretreatment with prednisone to prevent reaction from Prohance?  and 2) where is the contrast dye Prohance injected? in the ear? how long does it take to recover from MRI before they let you get up and go? I can't get any answers. Thank you and very glad to find this group.
69
Inquiries / Re: Should I be concerned
« Last post by DanFouratt on April 08, 2024, 11:52:25 am »
Laura,

I am struggling with having the test done in October and no one giving you any results.  I would push that issue to the point of getting copies ans sending them elsewhere for an opinion.  We are entitled to copies of the test results. Several of the sponsors.

To give you an idea of MRI in wait and watch time; I start the MRI at 9:30 and drive down the road to my ENT for a review at 11:00. When I did my first MRI and not in the system, I had the MRI done at a Rex Med facility and with in two hours had calls from both a Duke Doctor and an Cone Doctor.  Local but different establishments. 

It simple should not take that long.
70
Physicians / Seeking advice for finding surgical teams
« Last post by TWMD on April 08, 2024, 11:34:22 am »
Hi. My daughter who is in her mid 20s was just discovered (via MRI) to have a 27x29x25mm tumor that radiologist and a neurosugeon have said is most likely a VS. I'm trying to identify other doctors to consult. She's currently in Atlanta, and has spoken to a neurosurgeon (Jeffery Olson) at Emory (and will talk to a neuro ENT there this week), since that's where she lives and where her MRI was done. She has a video appointment with Henry Brem at Hopkins later this week, and we've requested a consult with Friedman/Schwartz team at UCSD. At first Hopkins seemed  most convenient since we live nearby and she could recover from surgery with us, but after reading the forums, it sound like it's not critical to be close by the surgery location for the recovery period. So we're really open to other suggestions of teams/hospitals.  She already has severe hearing loss in one ear, but no other symptoms. Where/who else should we consider? Mayo? Other east coast/mid-atlantic area hospitals? Thanks in advance for any advice.
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