Recent Posts

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Post-Treatment / Post Gamma Knife spaciness
« Last post by suz on January 02, 2018, 06:10:38 am »
I had GK on 12/22 and everything went beautifully. My concerns about the head frame were unfounded- it was not that bad. The main side effect I noticed after was an increase in tinnitus and other noises in my AN ear. But over the past few days I have developed a Spacey feeling - like I need a cup of coffee (but I just had some). I can't seem to shake this spacey feeling. Is this normal? Anyone else feel it? I heard about folks being tired after GK before t this is not really tiredness. I just feel like I can't quite focus and it's unsettling.
Eye Issues / Re: gold weight and MRI
« Last post by LakeErie on January 01, 2018, 02:19:02 pm »
An MRI is Magnetic Resonance Imaging. Gold is a non-magnetic metal so safe to use in MRI's.
Facial Issues / Re: electromyography
« Last post by vickieastwood on December 31, 2017, 11:07:59 am »
Sophiegain, you sound a lot like me. My AN was 4.2 and my dr's said they thought my facial nerve was intact. I waited over 2 years and never had any improvements - the droop just got worse. I was just so grateful to be here, I felt guilty when bothered by the droop and my vision and hearing. Finally I put that aside and decided I wasn't just going to live with it and started researching options. Because I'd waited, the gracilis flap surgery was the best option for me. I had mine done at Johns Hopkins in August and have just started to get movement again. I see small improvements every week and am so glad I took steps to improve my quality of life. Good luck to you on your journey! Let me know if you want to hear more about mine.
Eye Issues / Re: gold weight and MRI
« Last post by vickieastwood on December 31, 2017, 10:53:03 am »
Same here. I got a gold weight in 2015 and had an MRI in 2016 with no issues.
Eye Issues / Re: Tips on getting scleral lenses
« Last post by vickieastwood on December 31, 2017, 10:49:13 am »
Hi Jessonia, my opthomology surgeon didn't even know about scleral lenses, I don't believe they are trained in them. My guess is that yours just doesn't know anything about them so tried to steer you away. Basically they are hard contact lenses. The differences are that they are bigger ( covering and protecting your cornea), a machine take detailed measurements of your eye- up to 10,000 I think, and they are deeper so that you put drops in them that will stay against your eye all day while you wear them. The infection risk isn't any more than any contact wearer. I can't believe how much better my eye feels when I have them on. Any my vision went from legally blind to 20/30 in that eye. They are truly a blessing for me and it sounds like would help you too. Good luck and keep us informed!
Post-Treatment / Re: CSF leak from incision
« Last post by ColleenH on December 31, 2017, 09:25:42 am »
I never had a "goose egg" - my leak sprung from my nose. Good luck and be sure to rest.
AN Issues / Re: 1 Month after AN Surgery (4 Month UPDATE)
« Last post by CompassGeorge on December 31, 2017, 08:49:30 am »
Thanks ColleenH and congrats on your progress as well! Any issues with tinnitus before or after your procedures? George.
AN Issues / Re: 1 Month after AN Surgery (4 Month UPDATE)
« Last post by ColleenH on December 31, 2017, 08:30:14 am »
Thanks for the follow-up report. I am 6 months post-op and practically back to normal except for slight dry eye and SSD. Yay us!
Hearing Issues / Re: Baha surgery for January 19th
« Last post by Theham on December 30, 2017, 09:06:10 pm »
I just recently had my BAHA abutment implanted in May 2017.  I was completely sedated for the 45 minute procedure and recovery was quick, but I did take an entire week off from work and worked from home the second week following - none of this was truly needed but it gave me the pressure free time to recover and a relaxed pace to get back to my office job.  I returned to the office after I was able to remove all the visible bandages more so that I didn’t freak out coworkers with the healing disc still affixed to my head quite visibly due to my very short hair.  It really was a case where the waiting to activate the sound processor was the toughest part even taking into account the procedure and recovery.  I had a few mild headaches following the procedure but nothing over the counter Tylenol didn’t address.  The one thing I didn’t expect is the odd sensation when folks got me laughing or smiling - the abutment placement through the soft tissue for me made it feel like I had a muscle cramp in the side of my head when I laughed.   It was both funny and mildly uncomfortable at the same time but nothing I would term painful.  I did have a few coworkers who I didn’t tell about the implant in advance to come up to me after the fact quite curious.  Responses ranged from curious to at first unsettled but they’ve all gotten used to seeing either the abutment or the BAHA device.  It helped my transition back to work that I shared information ahead of time with the team I work with.   

Do post any questions you have as well as feel free to send me a pm I’ll be happy to share my recent experience with you or answer any questions as will my wife who helps me keep an eye on my implant.  I do feel it important to remind you that everyone heals differently and each medical care provider will give you directions tailored to best help you heal.  As I am not a medical care provider, please follow all the after care instructions provided to you by the medical team you are working with.

I’ve been single side deaf (right side) all my life (near 40 years now) and traditional hearing aids never helped the way my BAHA (Cochlear BAHA 5 Power) has.  It was definitely the right decision for me, though I am still learning to hear with the device. 
AN Issues / Re: 1 Month after AN Surgery (4 Month UPDATE)
« Last post by CompassGeorge on December 30, 2017, 09:25:50 am »
Hi dmborman, Yes, I had what I would describe as "mild" tinnitus before my surgery. It was something that I just noticed from time to time- not really bothersome to me. The tinnitus is still there but perhaps I am getting more used to it as I seldom even think about it. It certainly doesn't seem any worse in my case. George.
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