Author Topic: New and very anxious  (Read 3005 times)

dsf767

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New and very anxious
« on: November 08, 2017, 05:58:46 pm »
Hi all,

I'm sure you have read posts like this 1,000 times by now but at this point I'm very anxious

For a couple years I've had single sided hearing loss with occasional Tinnitus no other symptoms of note i do have very occasional vertigo if i wake up and move quickly but other then that no balence issue or facial issues.

When i noticed the hearing loss i did see an ENT but i was younger then and when he told me i should get a hearing test i kinda blew it off. I know that was a mistake but at the time i was busy and well honestly not sure what i was thinking.

Fast forward until now and i finally made the decision to follow up on the situation even though in the 2 years since this all started i haven't got worse but i recently had my daughter so thought it was about time to start looking after myself for my family's sake. So i had my appointment with my ENT today and they confirmed i hid mild to moderate hearing loss in my left ear.

The results of my hearing test on my left ear were SRT 40 Discrimination 76% 75dB MCL what ever that means (maybe someone can elaborate on those numbers).

Basically my doctor said there was distortion in my left ear which he was concerned about so ordered an MRI in the research I've done i always knew an AN was possible but it was not until tonight when i was finished with my appointment that it really hit me. He said i will most likely have to wait 3 week for an MRI then wait for the results after that.

I am the type of person to plan and look at everything so i know it's going to have me going crazy until i find out one way or another so i figured I'd join here share my story in case in the event i do have an AN i will be ready to hopefully be in a better place to deal with it.

ANSydney

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Re: New and very anxious
« Reply #1 on: November 08, 2017, 08:43:46 pm »
dsf, welcome to the forum. I won't say welcome to the club and I hope you never have to!

SRT is speech reception threshold. It is similar to the more meaningful pure tone average (PTA). 40 refers to the dB (bigger is softer) that words can still be heard. At 40 dB it would be considered moderate hearing loss. Discrimination is the amount of words and subwords that are correctly heard, in this can at 75 dB. Your results are very similar to mine which would be considered moderate hearing loss.

Can you use the phone (not so well) on your poorer ear?

Ironically, you may have done the "best" thing by unknowingly putting yourself on (potential) watch & wait. These tumors have been found to stop growing after 4 years from diagnosis (or ~symptoms). http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf

These are slow growing tumors so there is no rush to get the MRI or anything done.

Good luck.

dsf767

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Re: New and very anxious
« Reply #2 on: November 27, 2017, 10:26:45 am »
Well I just got the news I do have an AN.

I guess now the fun part starts I guess luckily I live just south of Boston so I am going to be going to MEEI and the MGH team to see whats next on my journey I am very scared as what comes next but I hope I can be a part of the forum to help me feel better about my situation.   

Even though I was diagnosed in Weymouth at the local MEEI office I did not really care for my ENT. He just seemed so impersonal and at first he told me to call Dr. Lee in Boston and did not even mention Dr. McKenna who I know is very highly regarded on this forum. I also asked about he size but he could not tell me and just told me it was a "good size" what ever that's supposed to mean.

I called Dr. McKenna's office today and am waiting for a call back but knowing lots of people on this forum has experience with him makes me feel better, not that I think Dr. Lee would be a bad doctor but for something like this I want to see the best.

I really have no idea what to think or how to feel at this point my Wife, Parents, and Boss know at this point and its just so hard knowing what going to come from all of this and the information is so hard to process.

I just want to thank everyone on this forum because when I got the call from the ENT he seemed to know nothing other then giving me a name and its only because of the reading I have done here I felt like I had a little more information to use 
« Last Edit: November 27, 2017, 11:46:52 am by dsf767 »

LakeErie

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Re: New and very anxious
« Reply #3 on: November 27, 2017, 12:37:19 pm »
You can get a copy of the MRI report directly from the imaging center just by asking. The report will have the radiologist's estimated AN dimensions. A word of caution though, radiologists look at a lot of images and not a lot of AN's. An AN experienced physician often measures AN dimensions differently than the radiologist. It happened in my case, my experienced skull base surgeon found the tumor a full centimeter larger in one dimension for example. AN surgeons look at AN images all the time
The worst part of the tumor process for me was the time prior to making my treatment decision. Once I had confidence in the surgeon I selected, I was much calmer than I would have believed prior to the decision.  Things get better as you gain information and make decisions as you are gaining some control over events. Most people do very well these days if they have experienced doctors. Good luck
« Last Edit: November 27, 2017, 12:41:02 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

dsf767

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Re: New and very anxious
« Reply #4 on: November 27, 2017, 01:35:04 pm »
Thanks,

I got my appointment with Dr. McKenna scheduled for 3 weeks from now. I will probably also send my information over to House just to see what they have to say as well.

I guess what makes me be a little more positive about all of this is that I live near a great medical city (Boston) and am seeing someone who lots of people on this forum have had a good experience with 

ANSydney

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Re: New and very anxious
« Reply #5 on: November 27, 2017, 02:12:34 pm »
As LakeErie has said, you can get your radiologist's report simply by asking. You can also get your MRI images on CD. These come with measuring tools and a scale, so you can work out size yourself. What's more important than absolute size is growth with time. If it's stopped growing or slowing down, that's what's important.

You remind me of me in the first month following diagnosis. I was like a deer in the headlights of an oncoming car. I'm now over a year since diagnosis and things are looking OK. I'll wait until my 5th MRI (2 years) before relaxing somewhat more. In the first five months I was feverishly researching. Now I still do some reading and visit the forum, but it's as time permits and is not consuming me.

ANs are one area where increased knowledge and taking charge of your disease come in handy.

From what I can gather you have minimal symptoms and had them without progression for about 2 years. They are good signs.

I like Dr McKenna since he's the only one in the US that I know of that only treats if there is ongoing indications of treatment. There are other around the world, but the US seems to be different.

In the words of Dr Micheal McKenna, "The best treatment is no treatment, if you can do it" ( https://www.anausa.org/resources/videos/support-group-video-library.)

If you need any help taking your own measurements, I'd be happy to help.

All the best.

dsf767

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Re: New and very anxious
« Reply #6 on: November 27, 2017, 03:49:43 pm »
As LakeErie has said, you can get your radiologist's report simply by asking. You can also get your MRI images on CD. These come with measuring tools and a scale, so you can work out size yourself. What's more important than absolute size is growth with time. If it's stopped growing or slowing down, that's what's important.

You remind me of me in the first month following diagnosis. I was like a deer in the headlights of an oncoming car. I'm now over a year since diagnosis and things are looking OK. I'll wait until my 5th MRI (2 years) before relaxing somewhat more. In the first five months I was feverishly researching. Now I still do some reading and visit the forum, but it's as time permits and is not consuming me.

ANs are one area where increased knowledge and taking charge of your disease come in handy.

From what I can gather you have minimal symptoms and had them without progression for about 2 years. They are good signs.

I like Dr McKenna since he's the only one in the US that I know of that only treats if there is ongoing indications of treatment. There are other around the world, but the US seems to be different.

In the words of Dr Micheal McKenna, "The best treatment is no treatment, if you can do it" ( https://www.anausa.org/resources/videos/support-group-video-library.)

If you need any help taking your own measurements, I'd be happy to help.

All the best.

Well I have the CD and think I figured it out if my measurements are correct its fairly large (about 3.7cm at its largest spot)

https://imgur.com/a/IvNT6

Cityview

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Re: New and very anxious
« Reply #7 on: November 27, 2017, 04:56:22 pm »
dsf767

You've used the forum well as you have identified the most experienced team in all of New England.

I was diagnosed four years ago around Thanksgiving and it was difficult to get that news during the holiday season.
Still on watch and wait with a small one.

Good Luck with your appointment and God Bless during this holiday season.
« Last Edit: November 27, 2017, 04:58:02 pm by Cityview »
Small AN
Successful watch and wait for over 4 years!

ANSydney

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Re: New and very anxious
« Reply #8 on: November 27, 2017, 04:59:18 pm »
Hi dsf767,

Your doing all the right things. You've made measurements and posted your measurements. Great work. (I wish more would!)

I remember when I was diagnosed just how hard it was to work out where to measure things from. You've done very well. For better information, take a look at https://www.anausa.org/smf/index.php?topic=23670.msg979775078#msg979775078

When measuring these tumors, the intrameatal part (inside the inner ear canal) is not included, as shown in the above post. I would rate your tumor as 30 x 32 mm. If you look at the coronal view, you can also work out its craniocaudal height (the third dimension).

We are very similar in that we have some hearing loss and virtually no other symptoms. My tumor is about 25 x 25 x 32 mm. So the height is the bigger concern. Your tumor is large, but if you want some pertinent reading, https://www.ncbi.nlm.nih.gov/pubmed/25120176

I hope your tumor has stopped growing. You'll only know in 6 month's (or so) time.

The dilemma is your tumor is large, but your symptoms are small. Again, very similar to my situation.

Keep in touch.

dsf767

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Re: New and very anxious
« Reply #9 on: November 27, 2017, 06:07:43 pm »
Hi dsf767,

Your doing all the right things. You've made measurements and posted your measurements. Great work. (I wish more would!)

I remember when I was diagnosed just how hard it was to work out where to measure things from. You've done very well. For better information, take a look at https://www.anausa.org/smf/index.php?topic=23670.msg979775078#msg979775078

When measuring these tumors, the intrameatal part (inside the inner ear canal) is not included, as shown in the above post. I would rate your tumor as 30 x 32 mm. If you look at the coronal view, you can also work out its craniocaudal height (the third dimension).

We are very similar in that we have some hearing loss and virtually no other symptoms. My tumor is about 25 x 25 x 32 mm. So the height is the bigger concern. Your tumor is large, but if you want some pertinent reading, https://www.ncbi.nlm.nih.gov/pubmed/25120176

I hope your tumor has stopped growing. You'll only know in 6 month's (or so) time.

The dilemma is your tumor is large, but your symptoms are small. Again, very similar to my situation.

Keep in touch.

Are these any better?

https://imgur.com/WAkD0sa

https://imgur.com/HxNZJBt

so most likely looks like mine is around 30mm x 28mm x 29mm

Which is still quite large a little closer to your measurement if I have it right


ANSydney

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Re: New and very anxious
« Reply #10 on: November 27, 2017, 06:11:24 pm »
The ENT's "good size" can be interpreted at least two ways.

"good size" = not too large, nothing to worry about
"good size" = substantial size.

We spend thousands of years developing a number and measurement system. We should use it.

dsf767

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Re: New and very anxious
« Reply #11 on: November 27, 2017, 06:16:18 pm »
The ENT's "good size" can be interpreted at least two ways.

"good size" = not too large, nothing to worry about
"good size" = substantial size.

We spend thousands of years developing a number and measurement system. We should use it.

That bugged me as well that he couldn't give me any size information thanks for helping me work out the size and I thank you for taking the time to go back and forth with me on all this.

I think I am going to call Dr McKenna's office tomorrow and see if I can move the appointment up at all see as the size is on the large side to see what he has to say about all of this. 3 Weeks seems like a long time to wait do you think he will want to go right to surgery or do you think he will want me to watch it seeing as its been there for a couple years to see if it gets any bigger?

dsf767

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Re: New and very anxious
« Reply #12 on: November 27, 2017, 07:03:46 pm »
dsf767, you've done better than some radiologists with those measurements. Now you know its size. What's more important is changes over time. If you have the same person doing the measurements (you) and you redo them at the same time (again you), you will have what really counts.

So, you = 27 x 30 x 29 mm
me = 25 x 25 x 32 mm

On a volume basis, very close.

I think you will be hard pressed to find anyone in the US that will see if it's still growing. Your only saving grace is that you are pretty well asymptomatic. I've already had three MRIs and will have the next at the end of February. It is "stable".

Surgery for ANs is something you need to seriously consider. Most have new deficits following surgery. Most have total hearing loss. Those that don't have total hearing loss, loose it within 10 years (with very few exceptions).

You never have surgery to preserve hearing. Lots of posts with supporting evidence.

If there is no significant growth, waiting two years will not affect outcomes (there is a paper that studied this, but I can't readily locate it). Also, waiting to see if there is growth and only acting if there is significant growth gives the best outcomes. The study that demonstrating this is ... I can't find it either right now, but the following paper covers it  http://etheses.bham.ac.uk/3748/1/Martin12MD.pdf . Also look for the terms "intention to treat" and "vestibular schwannoma" online.

I wish yours (and mine) were smaller, then it would be a no brainer (pun intended). While others can afford quite a lot of growth before intervention, we have very little wiggle room.

BTW, I waited three years after I had a hearing test with some single sided hearing loss before getting an MRI. Another interesting parallel.

Not that I'm suggesting treatment without a strong indication, but don't discount radiosurgery http://bmjopen.bmj.com/content/bmjopen/3/2/e001345.full.pdf

ANSyndney,

Thanks it is alot to consider but like I said earlier I feel good knowing I have done lots of research thus far and will do alot more now that my diagnosis is confirmed.

I feel like I am in good hands with all the information on here knowing that I found one of the best in McKenna who wouldn't have even been recommended to me if I didn't bring his name up I would never be seeing him.

I am a take charge kind of person so thats how I plan to handle this aswell

alabamajane

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Re: New and very anxious
« Reply #13 on: November 28, 2017, 07:59:57 am »
Dsf767,
You have done well to be proactive in your research. That info will serve you well in your decision process. Only you can decide how you want to proceed,, “ one size fits all’ does Not apply to these tumors generally. Every patient has different needs physically and emotionally when it comes to having a brain tumor. It isn’t black and white.

That said,, I think you would be well served to send a copy of your MRI to House Clinic for a second opinion ( or first actually as you haven’t seen Dr McKenna yet or received the radiologist report!),,,,and get good medical advice from another source. Remember, we on this forum are not medically qualified to give advice just our personal opinions and experiences,,,

Good luck and I really hope you can move up your appointment with Dr McKenna. The waiting is hard!

Peace and best wishes.
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

dsf767

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Re: New and very anxious
« Reply #14 on: November 28, 2017, 08:10:40 am »
Jane,

I do plan to send my MRI to house if nothing else but to double check everything McKenna is going to be tell me. I did call the office and got my apointment moved up to next Monday and plan to send a copy of my MRI CD to house has anyone copied their MRI CD or do I need to contact where I got my MRI to get another copy?

 

 


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