Author Topic: Am I imagining my symptoms getting worse?  (Read 2005 times)

rebeccadill32

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Am I imagining my symptoms getting worse?
« on: February 14, 2017, 02:24:40 pm »
I was diagnosed with my AN in September 2016.  I battled with my PCP for months thinking that I had allergies due to the full feeling that I was having but finally went to an ENT that ran allergy tests, confirmed I had minimal loss of hearing in my right ear and sent me for an MRI and that is when I found that I had a 2.4x1.6x1.5 cm AN.  It really threw my world for a tailspin.  I received a number of medical opinions from some top notch doctors (Dr. Friedman at USC, House Clinic, Dr. Chang at Stanford) and in the end went with Dr. Tamargo at Johns Hopkins who recommended I go with the watch and wait because I still had very good hearing considering the size of my AN and I was not battling with the vertigo.  I really am lucky with my symptoms.  I have the fullness and "seashell" effect in my right ear and pain in my ear/jaw occasionally but other than that I only occasionally have wonkiness.  I suffer from chronic migraines that I have had since the birth of my son in 2011 and I take daily migraine medication for that so breakthrough headaches come and go and they are on my right side so I attribute them to my AN. 

My question, I recently had a pretty bad upper respiratory/sinus infection and my "seashell" effect in my ears have gotten much worse.  I feel like my hearing is not substantially worse but slightly worse.  My headaches are not migraine level but they're on my right side a lot more.  My wonky feeling is much stronger and there a lot more often.  I am fatigued ALL THE TIME.  Could this just be a residual effect from the sinus infection or could my AN symptoms be getting worse.  I am trying not to think about it and I go back to see Dr. Tamargo for my 6 month ultrasound in April so I know I don't have long before that but I start to have the dizzy/wonky feeling and think that maybe my sugar has dropped and maybe I need to eat something to help so I do and that doesn't help me at all.  Has anyone else dealt with this?
Diagnosed 9/20/16 with 1.8 x 2.5 AN
Mild hearing loss, tinnitus, dizziness, facial pain
Follow-up MRI 3/14/17 w/ no growth; 10/9/17 pressing on trigeminal nerve causing pain
Treating w/ Dr. Tamargo @ Hopkins
Surgery scheduled with Tamargo/Chien January 9, 2018

ANSydney

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Re: Am I imagining my symptoms getting worse?
« Reply #1 on: February 14, 2017, 03:50:28 pm »
rebecca, you bring up a good point. Don't attribute all new symptoms to the AN. I would ask a GP how long it takes for all the symptoms of your upper respiratory/sinus infection to go away.

I like Dr Tamargo in that he looked at the big picture and recommended watch and wait.

rebeccadill32

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Re: Am I imagining my symptoms getting worse?
« Reply #2 on: February 14, 2017, 07:15:57 pm »
Thank you.  Yes, I was very pleased with Dr. Tamargo. I was certain I was going to need surgery and when I met with him he made so much sense when he explained his reasoning behind me waiting it just made sense. Where the other doctors were so quick to jump to surgery or radiation he found it smarter to wait and preserve my hearing for as long as I can and pointed out that some of these AN stop growing. He was very informative.
Diagnosed 9/20/16 with 1.8 x 2.5 AN
Mild hearing loss, tinnitus, dizziness, facial pain
Follow-up MRI 3/14/17 w/ no growth; 10/9/17 pressing on trigeminal nerve causing pain
Treating w/ Dr. Tamargo @ Hopkins
Surgery scheduled with Tamargo/Chien January 9, 2018

ANSydney

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Re: Am I imagining my symptoms getting worse?
« Reply #3 on: February 15, 2017, 05:15:15 pm »
Great path to take.






Abetpds

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Re: Am I imagining my symptoms getting worse?
« Reply #4 on: April 22, 2017, 06:42:05 am »
Wow Rebecca,
Similar situation to mine. I was all scheduled for surgery too until my local doctor told me to W&W since I was experiencing no symptoms other than hearing loss which I would not get back after surgery.  Made a lot of sense to me. Doing another MRi in 3 mos and than follow up in 6  if no symptoms develop.
Keep us informed of your situation.
Good Luck

rodneyd

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Re: Am I imagining my symptoms getting worse?
« Reply #5 on: September 28, 2017, 10:46:26 am »
Hi Rebecca,

I have had some sinus infections that literally made me unable to walk 50 feet to the mailbox I felt so tired.  So it might not be anything related to your AN.

Good luck!

Rod
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

bassman458

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Re: Am I imagining my symptoms getting worse?
« Reply #6 on: September 28, 2017, 12:35:28 pm »
My AN was discovered a few years ago during an MRI to try to find the source of unexplained headaches. I was scheduled for radiation treatment but the neurosurgeon cancelled it the day before when he looked at the size -- mine is relatively small and not growing much based on subsequent MRIs. The current size is 9.2 x 4.2 x 4.2 mm.

When it was discovered, I was also having tinnitus, some hearing loss, some dizziness and vertigo, and also dry eyes. However, more recently I feel like there are some new things popping up: some changes in fine motor skills, touch typing is not as accurate, spelling is not as good, some days my mind seems "foggy", more fatigue, a few months ago I started having sensitivity to hot/cold foods on the right side (the AN side), and now my mouth is dry most of the time.

As a side note, I had a complete physical earlier this year and all the blood tests and other test results were "normal".

Are any of these related to the AN or should I be concerned about something else?

Thanks.


« Last Edit: September 28, 2017, 02:24:04 pm by bassman458 »

ANSydney

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Re: Am I imagining my symptoms getting worse?
« Reply #7 on: September 28, 2017, 05:32:40 pm »
I wonder what triggered your radiosurgeon to cancel the procedure.

For a sub 1 cm tumor your additional symptoms sound odd. Communicating hydrocephalus comes to mind. Sensitivity to hot/cold food could be a dental problem. For touch typing not being as accurate, are both hands a problem or is it one hand?

When was your last MRI?

bassman458

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Re: Am I imagining my symptoms getting worse?
« Reply #8 on: September 29, 2017, 10:48:21 am »
My last MRI was mid-December 2016. The next one is scheduled for this December.

He cancelled the procedure because he could not guarantee no further loss of hearing or impairment of vision. I'm a technical writer and musician, and I need both senses to function properly. He said there was little risk in waiting to see if it gets bigger, as long as we monitor closely with MRIs.

ANSydney

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Re: Am I imagining my symptoms getting worse?
« Reply #9 on: October 02, 2017, 04:49:03 pm »
It's refreshing to see a treatment provider to fully look at the situation and not intervene unless necessary. I look forward to your December report on the MRI results. Let's hope the tumor has stopped growing (or at least only slowly).

ANSydney

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Re: Am I imagining my symptoms getting worse?
« Reply #10 on: October 10, 2017, 12:18:38 am »
So bassman, your tumor has gone from 0.8 x 0.4 x 0.3 cm (Sep 2015) to 0.92 x 0.42 x 0.42 cm (Sep 2017). Any growth is no more than 0.12 cm (1.2 mm), which is small growth and under the error of measurement. I'm looking forward to your December MRI even more now.

 


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