Recent Posts

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Caregivers / Thank you Caregivers
« Last post by DanFouratt on Today at 11:14:03 am »
To the caregivers. Last fall I was focused on my AN.  This spring I under went open heart surgery.  Both times my wife was my caregiver.   I was 8 weeks post op (now 9) and by all accounts doing great after OHS. My wife help get me here especially the early days.  We went on vacation last week, which was planned before surgery to celebrate recovery. Day one my wife missed the bottom stair of the place we were staying. She broke her heel, this resulted in surgery, splint, crutches and no pressure on foot.  I went from patient to caregiver overnight. I now truly respect the challenge of being a caregiver.  When I was receiving help there were times I thought, “Enough I CAN DO IT”.  Learning how to hit the sweet spot of making sure your patient needs are met, but not smothering them with “doing everything” is a difficult balance.  I wish I understood that as a patient. Most of us will over service and smother a bit as caregivers.  The patient needs to appreciate that and not be annoyed. (I have apologized.) In addition to the above balance, it is a lot of work to be the caregiver.  I have a new gratitude and appreciation for the help I received. Thank you for all you do.

Dan
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Hearing Issues / Re: Bone Conduction Headphones
« Last post by donjehle on Today at 10:06:52 am »
Thank you, both, for your replies.  I tried one of the Shokz one, and it was okay, but I got tired of charging it all the time.
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Post-Treatment / Re: CSF pouch under incision
« Last post by donjehle on Today at 09:47:29 am »
Hi Michelle Belle!

I see that no one has yet responded to your message.  I haven't had surgery yet, so I cannot speak directly to your question about the CSF pouch.  However, let me make a suggestion to you:  Go to the ANA Forums Home Page (it may not work well in this thread).  Then in the Search field in the upper right side, type in "CSF" and hit your Enter key on the keyboard.  When I did that, I found 75 posts in the forums where someone had posted about CSF.  I don't know how many of these posts would be relevant to your situation, but my guess would be that some of them might be helpful for you.  At least it's worth a try.

Best wishes on your AN journey!
Don
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For those in the 'watch and wait' status / Re: Suddenly getting vertigo
« Last post by donjehle on Today at 09:39:15 am »
Hi maryblair, and thanks for posting on the ANA Forums!

I also have a very small acoustic neuroma and had horrible vertigo and dizziness.  I had fallen down numberous times and had to walk with a cane.  But that was when my AN was first diagnosed.  I went to a vestibular therapist (not a regular physical therapist), had a few months of treatment, and I have not had any more dizziness since, and I don't use a cane anymore.  My last MRI showed no growth. 

I am not a medical doctor, but my understanding is that acoustic neuroma patients can have occasional worsening symptoms even though the acoustic neuroma is not growing.  So, we are told not to panic if we have occasional reoccurring symptoms.  The MRI is the definitive answer to the question of how fast or slow the AN is growing or whether it is staying the same or even shrinking.  Since acoustic neuromas typically grow very slowly, you probably can wait until your next scheduled MRI, especially with it at only 4mm.  But, if you have any concerns, I would share them with your healthcare provider.

Best wishes on your journey!
Don
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Facial Issues / Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Last post by UkulelesAreAwesome on May 26, 2024, 03:22:56 am »
I had gamma knife in August 2022. Around April 2023 I noticed minor twitching with my left eye and left side of my mouth. In 2024 I started to have facial spasms near the left eye, left cheek, left side of my mouth, and below the mouth on the left side. It's worse in the morning. Brushing my teeth aggravates it. Tension in my neck and shoulders aggravates it. Too much physical activity makes it worse. I have not been prescribed anything for it. Botox was mentioned if it continues. I've found it helpful to use an icepack on my head and neck. I also noticed the use of a TENS unit has been helpful. If I place the electrode pad on my shoulder it seems to help a lot and it's either relaxing the muscle or affecting the nerve. It seems to help decrease spasms. I have not found anything that helps with the increased head pressure or increased tinnitus.
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Hearing Issues / Re: OSIA OSI300 Implant
« Last post by carriekartman on May 24, 2024, 08:54:26 pm »
Oh good for you! My doctor said it was a no go, due to the shadow they cast on MRI, but now I'm going to ask again. Cannot wait to hear about it.
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Hearing Issues / Re: Bone Conduction Headphones
« Last post by carriekartman on May 24, 2024, 08:49:01 pm »
Hi Don,

The Adhear was terrible. I used it for less than 24 hours. It made little difference in my hearing, and left me wiht a sore area where it attached for several days. I'm sad I wasted 6 weeks waiting to try it. I've since learned on a BAHA Facebook group, that everyone says the same thing about it; utterly out of date and not much help with hearing. I will try the BAHA "softband" next, though that same community warns that it is no where as good as the real BAHA implant. I'm using a Cros system now, which is so so.
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Facial Issues / Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Last post by Dlip246 on May 24, 2024, 08:34:29 am »
Hi everyone - as promised just checking in to update anyone who is following this thread and may be going through what I am going through.

I am over 2 years post CK and about 22 months since my first facial contraction/spasm/cramping - if you go back to my prior threads, you can see all the treatments I have tried. Well, sad to report, I am still going through it.  Thankfully they have become "weaker."  By this I mean shorter in duration (they used to last up to 2 minutes and now they are under a minute) and less intense (I used to not even be able to keep my eye open or my mouth from contracting).  Now I can "fight" through them a bit.  So, I guess this is good news?  They still occur almost every day - same triggers - exercise, sneezing, yawning, social interactions, etc., etc...).  My brain MRI that focused on the nerve showed....nothing. So no help there.  MRI's don't really show the nerve and nothing stood out.  I have seen literally over 10 different specialists and have had 6 MRIs since the CK and not one doctor has ever even heard of or has seen my symptoms. 

If anyone wants to chat or discuss what they are going through, please reach out to me (I have been through a lot and have tried everything so I may be of some help)!
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Radiation / Radiosurgery / Re: Radiosurgery from a non-expert center
« Last post by mwatto on May 22, 2024, 07:44:11 pm »
Like Richcooks I went to a radiation oncologist for my AN 5 years ago. I had fractionated CK. The centre a private facility -5 D Clinics in Perth - mainly treated cancer tumors however the team itself had many years experience with radiotherapy. My own Professor well over 30 years. The team included a Physics chap, a neurobiologist etc. I had 3 fractions 5 years ago and no side effects my hearing still 87% (I see an audiologist every year) balance totally fine. I had nerve pain but that turned out to be TMJ and post vax or Covid reactivation of virus maybe herpes simplex (or so a neuro said who I saw this year re I was worried I had trigeminal neuralgia). It has gone now and I am back to being pain free. Have had no contrast MRI past 5 years and it has shrunk by half (was cystic but that disappeared after treatment).
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Post-Treatment / CSF pouch under incision
« Last post by Michellebelle007 on May 22, 2024, 03:42:41 pm »
I’m almost 3 weeks post surgery for my AN. I have a pouch at the top of my incision that goes from my temple into my ear that the doctor believes is CSF. It’s not actually leaking out, no dripping from my nose or ear or salty taste in my mouth, it’s just collecting under the skin. I have been on Acetazolamide for one week and haven’t had much success in drying it up. My doctor wants to keep my stitches in, he’s worried it will start leaking out. This is my second surgery for a regrown AN, so they took my facial nerve this time and I’m dealing with a paralyzed face on the right side also. A symptom is shooting pain from the jaw and that is happening from time to time but I don’t think it’s CSF related. Has anyone had CSF leak under the skin? What did you do to resolve it? I’m hopeful it will resolve and they won’t have to go back to repair it or get a shunt. I did have this same issue in 2018 for my first surgery but it quickly resolved in a matter of days after I was put on the same medicine. It seems to be smaller when I lay down and after sleeping overnight but then refills once I go vertical. I’m also getting pains from that spot spontaneously. Any advice is appreciated.
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