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Microsurgical Options / Re: Dr. Heilman and Dr. Sillman Tufts Medical Center Boston
« Last post by Arraia on December 14, 2018, 09:59:07 pm »
Hi JaneI am glad to hear your surgery went well!

I was diagnosed with 1cm left side tumor in 2016.I am from Boston area and my Doctor is Dr McKenna·I am still watching   b ut reading and learning everything that I can..I.willhave MRI.donenagain in Feb.Lets.see what hapening.
Thank.you for sharing your experience.I.wa very important to me.
Ho poo e yo.are doing well!
Happy  Holidays,!

Doris.Arraia
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Post-Treatment / Re: Four Months Translab post-op
« Last post by jami on December 14, 2018, 06:00:33 pm »
Hi Mmori,

I had my surgery mid-August, and completely relate. My drs tell us that I am recovering with amazing speed, and I “graduated” PT, but still struggle many days.

The hearing loss is more difficult than I expected, as there are activities in which I may look ok during, but it just is not working. I told my admin today that I can do no more lunch meetings (just can’t have a good discussion, too loud) and I bailed on dinner 2 of 3 nights during business travel this week (too loud). The patience of people as I remind them what ear doesn’t work makes a big difference. But adjusting to a new normal has hit my confidence harder than expected.

What Helps is when my husband acknowledges that we have a new normal, but doesn’t let me wallow in it. And to respect my need to rest (as Alyssa notes). A lot of rest.

And walk. Lots of walking. Good to get the space (time) and support to do it.

Finally, just today I reminded myself that it’s not even been six months and — it was brain surgery ...healing will take time.

Everyone is different.





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Post-Treatment / Re: Four Months Translab post-op
« Last post by Alyssa on December 14, 2018, 10:56:10 am »
I am 3 month post op. Although I still have facial weakness, off balance and fatigue, all symptom is getting better and better day by day. As long as I feel better and better I am not worry about it.

I tried to balance my life and work. Once I feel tired I just take rest which bring back to good condition.

Currently I see Physical therapist each week and all test shows I am making progress in balance and others. I start to do exercise, take a long distance walk and read and house work. All is helpful.

PT told me fatigue and fuzziness were very common because your brain losing one side balance nerve is working hard on balance compensation. It takes time for brain to adopt. Exercise following PT is very helpful for me :)

Take care from now.



 
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I would not think a radiologist has any veto power over a doctor.   They just preform the tests that are ordered by the doctor.  There would be no request for the contrast,  the doctor writes an order and the radiologist preforms the test.   Maybe there is more to the story or just plain confusion between them.  I’m inclined to think that this issue is related to the doctor more than the radiologist. 
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Now ive found out the radiologist has denied the request for Contrast  so i am getting another MRI without contrast and theres nothing i can do about it

my ENT requested contrast multiple times and the radiologist apparently declined it   NOW WHAT??????????


Why am i having so much trouble getting a doctor taking this seriously? Does anyone even know what to look for in cases like these? do doctors even know what acoustic neuroma is?

Why would they not give me contrast? whats the reason?
Ive been a month calling back and forth trying to get confirmed with contrast and then I find out the radiologist just declined it...

Why would they do this to me?
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Hello everyone,

Thank you for reading this! I’m currently having symptoms of this tumor and awaiting my MRI results from Monday night being Thursday, not sure why I haven’t heard back yet. I have unilateral high freq hearing loss guessed at around 30%. Not really much dizziness. Some headaches and constant ringing in both ears hay I can’t really hear unless it’s kinda quiet. I’ve been playing drums without hearing protection since age 12 however. I failed the caloric test with the VNG testing on my left ear. Didn’t give me dizziness. Worse case scenario I’ve been doing research Incase Inhave this. It appears Dr Jack Kartush of Michigan ear institute was one the best and most experienced the country doing the classic retro approach. The testimonies are encouraging for sure. Unfortunately he has retired. I was wondering if anyone knew who kinda took his place there? There is a handful of surgeons there that I’ve even seen mentioned on here.

Also, I was wondering if the endoscopic method has a higher rate of preserving hearing like at skull base insiltitue? I would like to go here in OH or even north since MEI is there.  Can anyone give me some direction please?
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Post-Treatment / Re: Four Months Translab post-op
« Last post by MT on December 13, 2018, 10:09:47 am »
Hi Mmori,

Recovery is a unique process, what do your doctors say? Are you guys seeing a vestibular therapist? Take care of his nutrition as well.

Good luck.
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Post-Treatment / Four Months Translab post-op
« Last post by mmori on December 12, 2018, 03:58:51 pm »
Hello all! My husband had Translab on August 30, 2018, so we are approaching four months post-op. His 14 mm AN was completely removed with only minor, temporary facial weakness that quickly went away. The hearing loss does hasn't seemed to affect him as he was already dealing with hearing loss and I believe had already adjusted prior to the surgery. He still is very off balance and deals with fatigue and a "fuzziness" (as he describes it) in his head. You can see it in his eyes.  I know this is typical but does it go away or is this the "new normal"? Anything he can do to help alleviate it? Thanks so much for any tips/advice. This site and organization has saved us!
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Radiation / Radiosurgery / Re: One-year update on 2.7 cm AN and CyberKnife treatment
« Last post by triplewave on December 12, 2018, 01:09:43 am »
Quote
I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

The only supplement I take for lifting is creatine. I haven't noticed any effect of taking creatine on my symptoms.

For general health I take curcumin, krill oil, sulforaphane (via broccoli sprouts), vitamin D, and garlic extract. I haven't observed any effect of these supplements on symptoms or tumor size either.

Advil is always useful for the headaches.

Quote
How's your overall experience with the CK procedure?

Going through the procedure was easy and anticlimactic. Getting the MRI and CT scan before the radiosurgery was more uncomfortable than the treatment itself. I felt like I ought to stay as still as possible during the MRI to make sure the model would be accurate.

It does require a lot of trust in the team designing the treatment plan (the angles and intensities of the radiation beams). Going into it I assumed that the treatment plan would be generated by an algorithm, but it was actually custom-designed by a team of scientists. Unless you happen to be a Cyberknife expert, you won't be able to form your own opinion about the plan, and you can't easily back out at the last minute anyway.

I received the CK treatment in three doses over three consecutive days. The worst part for me was the unease and sadness of knowing that there was no going back to my brain being in a natural, unradiated state, which I had decided was preferable to the risks of surgery, but still not ideal. The surgeons I talked to who prefer open surgery had been adamant about avoiding radiation, but the literature seemed to suggest that there was no increased risk of secondary malignant tumors or other brain issues from the treatment.

The music they chose for the first session was also pretty slow/depressing, which didn't help. Having a robot shoot beams of radiation at me while I was lying on a table in a scary looking mask was very surreal and sci-fi.

As I mentioned, I had some headaches for the first week, but it wasn't that bad, and the results seem promising so far.

Quote
One year down and it's good news -- great to hear! I'm glad the symptoms you experienced were transient :) I'm nowhere near a power lifter, but I can say since I started back at the gym with weight training over the last few months, my wonky head symptoms have gotten better for sure. I believe physical activity is a plus for recovery.

Glad to hear that weight training has had a positive effect. I guess I can't say whether or not it has had any effect on my recovery since I got right back to lifting a week or so after the treatment.
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Radiation / Radiosurgery / Re: One-year update on 2.7 cm AN and CyberKnife treatment
« Last post by Alyssa on December 11, 2018, 11:27:54 pm »
I have 11 year WW since 2007, I have to decide and go for surgery in September this year. It grows slowly from 8mm to 13mm and eventually my left hearing almost gone.

So far so good to recovery from surgery...


I decided to be treated with CyberKnife at Stanford with Dr. Chang after a month of research and soul-searching.


Thanks for sharing your 1 year progress, Triplewave. Sounds like you're CK is very successful.

I'm on my first 6 months observation have not decided yet on active treatment.

I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

How's your overall experience with the CK procedure?

cheers
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