Author Topic: Texas Teacher Newly Diagnosed @ 25  (Read 1229 times)

dinorahv

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Texas Teacher Newly Diagnosed @ 25
« on: June 25, 2018, 06:03:27 pm »
Hello everyone!  ;D

My name is Dinorah, I am 25 years old, and I am from Texas. I am an art teacher at a high school and was recently diagnosed with an AN. I apologize before hand for this very long post, but I wanted to share my story and feel confident "venting" in this forum.

It all started this past December, when I started noticing that I couldn't hear very well in my right ear. I didn't make much of it at the time because I had a cold and I thought that it was only "congestion". I would think to myself, "it's nothing it will go away once my cold does". I saw no change and it was already January so I decided to go to the doctor (ENT) and he looked in my ear and said it was congestion and he prescribed me medicine and gave me a nasal spray. After a week and a half of following the doctor's indications, I saw no change and decided to go with another doctor. He performed a small hearing test (he put me inside of an "egg" type chair and played some sounds and I had to press a button whenever I heard them. He then said that I had lost part of my hearing and that unfortunately there was no way to bring back my hearing to how it was. I was in complete shock for it had finally hit me that maybe this was more serious than what I originally had thought. I decided to go to a hearing center and get a real hearing test performed in March.

I went to the hearing center and was diagnosed with sudden hearing loss in my right ear and the specialist recommended me to get an MRI done just to be safe that nothing had caused the sudden hearing loss. I got my first MRI done in April and the next day I went to a generalist doctor so that he could take a look at the scan before referring me to an Ear Specialist in San Antonio, TX. The doctor read the report and took a look at my MRI scan and told me that I had an "enhancing mass" also known as an Acoustic Neuroma, which made sense with the symptom I was experiencing (hearing loss). He then referred me to an Ear Specialist in San Antonio and he told me about the three treatment options and he told me to get another MRI done because the one I got in my home town wasn't high resolution and he could really see the exact size. I got a second MRI done in May and they were able to see the size which is a small tumor, measuring 4 x 10 x 3 mm. In April-May I also started having trouble with my balance while walking. I never fell or anything but I would sometimes walk and loose my balance and "trip" towards the oppostie side of where the tumor is. As of now I feel that my balance has improved I don't know why.  :P

I kept exploring my options, for I knew surgery was the best approach for me in order to try and preserve my hearing and that I knew that I needed to find the best expert in these types of tumors. I found out about the House Clinic in early June and I scheduled an appointment with Dr. Slattery. This past weekend I went to LA and met with him on June 22nd. I was really pleased with Dr. Slattery's knowledge, experience, and felt very confident in his expertise. The thing with my tumor is that the doctors I had seen (in San Antonio), including Dr. Slattery can't seem to figure out what my tumor is exactly. He said that looking at both my MRI scan "I have some type of growth inside, and he said that it could be an AN which is a possibility because looking at it also has a little tail that  makes the shape look a little different than a typical AN" and he said it could also be a Meningioma. :o Looking at the tumor and where it is located Dr. Slattery said that the best option was to remove the tumor, since the shape is unusual, he told me he wants to make sure it is indeed a benign tumor. He told me that if it was a Meningioma, that there was a possibility to reverse my hearing, but of couse if it is an AN that there was a very small chance of my hearing coming back. It is very frustrating not to know what my tumor is exactly. I can only hope for the best and find what it was after the surgery. It's gonna be hard for me to go into surgery and just wait until I wake up to find out, but it is what it is lol. Dr. Slattery was great and he was very happy to answer all of our questions. We decided to schedule my surgery for August 28th, 2018 (Middle Fossa Approach).

Before I left to LA, I had also been trying to get an appointment at the Mayo Clinic since April and was finally able to get one for June 27th! I knew before going to LA that I was going to decide to get my procedure done either at House or at Mayo Clinic, but after having gone to House and after reading a lot of discussion posts here I am convinced that I want to get my procedure done at House! Unfortunately, the trip was already booked and I can't cancel my trip to Mayo, but I guess one last opinion does not hurt.

I guess I can say I am a little scared and nervous for that big day, but I know that I will be in great hands. The surgery will be performed by Dr. Slattery and Dr. Lekovic. I was wondering if anyone could share any experiences with these two doctors in particular. I spoke and met with Dr. Slattery, but did not meet nor spoke with Dr. Lekovic. I would like anyone to please share with me their experience after waking up from surgery? What did you feel right after waking up (a lot of pain)? How was their night at the ICU, their recovery the days in the hospital, what did you feel, was there a lot of pain, balance issues etc. Anything helps really. I plan to stay at the Seton Hall Care Center right after being released from the hospital.

Can share with me what type of side effects they had right after surgery, short-term and long-term? My primarily concern is facial weakness, and of course CSF leak. I also will fly home to Texas after the total of 14-day stay in LA (including hospital days) will I feel any discomfort?  ???

Lastly can anyone give me any tips they would like to share with me that helped them during recovery. Any tips they wished someone would have shared with them after their AN removal would be great! Thanks a lot to whomever took the time to read my post. I really appreciate your time and feedback.  :)

As of today I haven't felt a change in my hearing since December. I can still hear sound, but clarity is not there. According to more hearing tests that were done after the first one in April, scores show a decrease in the hearing, but I honestly don't feel a difference. ^-^
« Last Edit: June 25, 2018, 06:09:17 pm by dinorahv »

designwise

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Re: Texas Teacher Newly Diagnosed @ 25
« Reply #1 on: July 02, 2018, 05:18:33 pm »
Hello Dinah,

My name is Denise and I am pretty new to this forum. I was diagnosed in May 2018 and my middle fossa surgery is scheduled for July 31 at the House Clinic. Same doctors as yours. I just did the phone consult and I felt confident choosing Dr Slattery et al. My vestibular schwanomma/AN is on the left and is 1.5cm x 1.3cm. Some hearing loss, but not too bad. I'm hopeful to get it out and maintain all I have :) I will be staying at the Seton Hall place after I am done at St. Vincents. Good luck and stay positive. I believe we are making the right choice for our situations.

Blw

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Re: Texas Teacher Newly Diagnosed @ 25
« Reply #2 on: July 15, 2018, 08:37:26 pm »
I'm in San Antonio as well, had a similar path as you, but chose radiation at U. Va. If you don't have a good ENT in San Antonio, go to the Ear Medical Clinic. My Dr. is Charles Syms. MD/PhD, and the center has ever possible hearing test you could want (and a few more that you don't).

golfguy49

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Re: Texas Teacher Newly Diagnosed @ 25
« Reply #3 on: July 16, 2018, 06:07:22 am »
I also consulted with Dr. Slattery after my diagnosis in late March/early April.  I am in the Chicago area.  I was leaning toward surgery because I was having balance issues, but the balance issues have been much better since early May and I have taken on a Watch and Wait approach, with another MRI planned for late August.  Dr. Slattery is very cautious to make sure it is an AN and to monitor any possible growth.  I also want to make absolutely sure there is also no AN on the other side before I choose surgery.  So at my AN's size, I felt it was something I did not want to rush into unless my balance issues deteriorate, which they in fact got quite a bit better (for now).  I have ringing tinnitus 100% of the time in that left ear, and that is perhaps the worst thing for me - as I understand, surgery will not improve the tinnitus. It's hard to explain to people who do not have tinnitus how aggravating and distracting it can be at times - concentration and quiet work are very, very difficult to maintain.  Dr. Slattery made some great points to advocate watching my AN for at least one more MRI before choosing surgery, so that's what I am doing.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  Currently evaluating surgery options vs. W/W.  Located in Chicago area.

October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.

October 2019: 14 x 5 x 5mm.  Surgery scheduled for early Dec.

james e

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Re: Texas Teacher Newly Diagnosed @ 25
« Reply #4 on: July 30, 2018, 11:07:20 am »
A little late to the party. Call Dr Vrabec at Methodist Hospital in Houston. He is the go to AN doc in Texas. Super experienced in this field. You can get your MRI sent to him.

 


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