Recent Posts

Pages: 1 ... 7 8 [9] 10
81
I was diagnosed with this and told i have high levels of fluid in both my ears...but only the left has hearing loss. When doing my HBOT treatments i get relief with the pressure it unclogs my left ear and i can hear the tv inside the tank perfectly. SO....if i can hear inder those conditions....doesnt it mean i am not experiencing hearing loss?  But instead hearing interference? Now started to check hearing aids online in different places, but really hope it is too early for me.
82
For those in the 'watch and wait' status / Re: fast growing AN
« Last post by carriekartman on February 21, 2024, 10:48:05 am »
Thank you Dan and Dodge! It helps to hear (ha, ha, wouldn't it help to really be able to hear?) that other tumors grow quickly, as I've been perplexed by so much messaging from multiple doctors, to the contrary. I'm 3 days away from my first fractionated zap, and really it feels like Christmas and a birthday rolled into one.
83
Post-Treatment / How long after SRS for the first MRI follow up
« Last post by DanFouratt on February 21, 2024, 08:53:25 am »
I have a question for those who had SRS and their first follow up.  My 6 month was scheduled for the end of March.  I have opted for open heart surgery (yes it has been a bad year).  I cancelled my follow up and told them why.  I want to recover.  Please note the recovery time is similar to a surgical recovery for an AN.  She rescheduled the MRI for less then 21 days post Open Heart Surgery.  I will not be driving by that time and plan on cancelling that one, with a recommend follow up.

How long have some of you waited for the first follow up?  I have read some people are doing it at a year.  I also have read that if the tumor grew it is attributed to the radiation treatment.  If it shrunk fine.  Regardless we will wait and watch and do another MRI in 6 months. So how beneficial is the six month follow up?

I have reached out to some in the medical world but would like to know real world stories.

Thanks

Dan
84
Microsurgical Options / Re: Loss of Vestibular Nerve
« Last post by Greece Lover on February 20, 2024, 09:42:55 am »
One more reply from me (sorry!):  The reason those nerves are removed is two fold. First, and most important, it's so the tumor doesn't come back.  Second, I think, is that we make a better recovery long term with those nerves gone than with them damaged.  Don't know if that makes sense, but I think those are the basic reasons. I know it seems weird, and I was surprised when I first learned it as well.  Where do you live? Do you have an experienced ENT doc who's handling your case?
85
Post-Treatment / Re: Equilibrium/Balance recovery post-surgery
« Last post by Greece Lover on February 20, 2024, 09:41:04 am »
I responded to your other post as well, but I will reiterate here that I found recovery to be pretty amazing.  it's tough at first, of course, but within a week or two I was walking around the block.  By 6-8 weeks taking long walks.  After that I was driving on a long road trip and riding my bike and hiking.  I do occasionally still have trouble, especially in cold and wind--it makes me jittery and my balance feels worse.  But very manageable. 

I also think PT can help (although mine was all post-surgery).  I am a professor and once a year I visit our PT school and the students do various exercises on me and tests, etc, and so I get some free maintenance as well!

86
Pre-Treatment Options / Re: Another Newbie
« Last post by Greece Lover on February 20, 2024, 09:37:45 am »
Sorry you had to join the club.  I would second that the symptoms/experiences are unique to everyone.  I do think it's generally true, however, that sometimes people struggle with balance more pre-surgery than after surgery.  The reason is, once the balance nerves are removed completely during surgery, the brain starts with a baseline and the signals it gets are consistent.  When the tumor and nerves are still there, the signal is fuzzy, and it's harder for the brain to interpret.  It's actually amazing how quickly you recover balance after surgery.  Like you, I'm very active: hiking, camping, biking, etc.  I returned to all of those things within about 3 months of surgery. 

Do you know which surgery options are available to you? It sounds like you might be a candidate for Middle fossa approach. this approach has the best chance at hearing preservation.  That's what I had, and I'm really glad I did.  But, again, everyone's journey is different.

Let us know how we can be helpful and best of luck on your journey!
87
For those in the 'watch and wait' status / Re: fast growing AN
« Last post by DodgeAU on February 20, 2024, 03:05:05 am »
Prior to my treatment, I was also in the fast growing AN category. Discovered at 6mm and it was growing at an average of 6mm a year. Been hoping that it will eventually stop growing at some point but it did not stop in 3 years!!. After the 3rd year it was already 18mm and finally decided to have a GK treatment. I suggest not to wait and watch for long period of time if the growth rate is more than 2mm per year in consultation with your doctors. Personally I regret waiting for 3 years to get treatment although I was able to speak to multiple AN specialists and really make a decision as to what is best for myself. 
88
For those in the 'watch and wait' status / Re: fast growing AN
« Last post by DanFouratt on February 19, 2024, 07:52:15 pm »
Thanks for sharing and good luck on your upcoming procedure.  It was the best move I made when I decided to go forward with my treatment.
89
For those in the 'watch and wait' status / fast growing AN
« Last post by carriekartman on February 19, 2024, 07:26:51 pm »
I want to share my current status, in case it helps others who are considering their options. My AN was diagnosed on 10/23/23, at 12 mm x 6mm x 6mm. I had already lost a lot of hearing, but what remained was important to me (word discrimination 30%, quite a bit of pitches still registering), and my balance and vertigo were impacted, but improved with PT. Within 2 months I had a swift increase in symptoms, lost all hearing, and MRI in mid-February showed tumor at 14 mm x 7 mm x 8 mm. It was ONLY measured because I was moving forward with prep. for SRS. The doctors would not do another scan for me sooner than 6 months, except as part of my upcoming treatment. So this is a reminder: not all ANs are slow growing! I truly wish I had decided on my treatment and treatment team sooner, and moved ahead, rather than believing I had "plenty of time," which we are constantly told. Please remember that smaller tumors have better success rates, and the best outcome you can expect from SRS, is the level of hearing you went in with.
90
Pre-Treatment Options / Re: Another Newbie
« Last post by DanFouratt on February 19, 2024, 04:20:23 pm »
Todd,

Everybody's journey and decision process is different. My tumor was about the size of yours.  It grew during one watch and wait procedures.  I only had hearing loss (40%) and tinnitus. Okay an occasional wobbly moments. I did not want my condition to get worse so I decided to address it. I looked at both surgical options and radiation options. (Email me if you want to see this work at Dan4att@gmail.com.) I choose radiation this fall and have not looked back. Neither my surgeon nor my oncologist thought I was rushing and they both supported the decision. I was out and about the next day and back to all activities within four days after the treatment.  Again I only had hearing loss ant tinnitus, which I still have.

I am not a doctor and cannot advise.  I can say decisions are personal but they are yours.

Dan

Pages: 1 ... 7 8 [9] 10