Author Topic: Simple Introduction :)  (Read 1755 times)

HolRora

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Simple Introduction :)
« on: June 15, 2017, 10:36:12 am »
My name is Holly, I am 39 years old, and was diagnosed with a 1.9cm AN on the RT side on 01/17/2017.
I found this site not long after diagnosis and have crept around for some time. Very grateful to have found it and to everyone that contributes each day. Between the personal experiences and valuable information it's amazing! Anyway, back to my silly intro... I was diagnosed with Meinerir's diseases about seven years ago by my primary care physician. Both of us being very conservative about health care we opted to watch my sodium and caffiene intake to control flares. I didn't drive for a few months while taking OTC's. Everything got better and it was completely controllable. I lead a very active healthy lifestyle so anytime I got dizzy I assumed to drank to much coffee. I have always been clumsy, but this got worse, as well as fatigue. In December of last year I got very run down and my right side from face to foot started to tingle and go numb. In January I had my first head MRI which discovered the AN. By February I couldn't walk at all some days. My gait was terribly impaired and I was having trouble swallowing. I coughed all the time after drinking. My PC referred me to ENT and neurosurgery. Both were completely convinced that the tumor couldn't possibly be causing all my symptoms. I have so many it would take me some time to list them all. So from there they both referred me on to other doctors. The neurosurgeon sent me to rheumatologist thinking I had Lupus. The ENT ran several tests on my heart and ordered a swallow study. The rheumatologist ran tons of blood work, took x-rays, and ruled out Lupus as well as several other conditions. The swallow study revealed I had aspiration when swallowing fluids. This lead many to think, with everything already going on that maybe it was MS. She also referred me to Neurology. At this point I have seen over a dozen doctors including three neurologists. I have had more scans and tests then I even thought possible and everything comes back fine with exception of the AN. Last week I had a second head MRI and learned that it is now 3.9 cm. The radiologist/oncologist went through my scans and explained that the tumor may have very well been the cause all along. So now that I have had three doctors tell me this in the last two weeks, and it is getting much larger faster, it's time to do something. I meet with Dr Amin and Dr Bauer in a couple of days to discuss options. The AN is pushing on the cerebellum, pons and brainstem. The radiologist recommends debulking to allow for room to radiate the residual. He is not a surgeon, but given the close proximity to certain areas it seems safer then risking the facial nerve trying for total removal, or other critical structures. Just wanted to say Hello to all and say Thank you for being here!! Much Love and prayers to all!
Diagnosed ANA RT side 1.6cm 1-17-17 MRI
3.0CM 6-5-17 MRI
Looking at surgical options
Slight hearing loss on ANA side, gait problems, facial numbness

MarlaB

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Re: Simple Introduction :)
« Reply #1 on: June 15, 2017, 11:44:17 am »
Just have to confirm...were you diagnosed in 2016? ;-) Welcome to the club!!

Marla B.

ANSydney

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Re: Simple Introduction :)
« Reply #2 on: June 15, 2017, 07:05:39 pm »
Hi Holly. Welcome to the club that nobody wants to be a member of, but everyone is friendly. Your story is unique. I don't think there has been a case of 2.0 cm growth of an AN in 5 months in the history of mankind. I would double check the dimensions, but it looks more than just rapid growth; its very rapid growth.

(Different radiologists use different measurement points, so maybe the size increase is different. The only way to really know is to get your MRIs on disk and actually look at them yourself.)

Of course rapid growth does not give your brain time to adjust to the changes, so symptoms would be worse than a similar sized AN that gradually grew.

I wonder what has caused your rapid growth; is there a cystic component, are you on any medication, has there been a lifestyle change?

I would love to see a MRI picture of your AN from January and now.

HolRora

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Re: Simple Introduction :)
« Reply #3 on: July 13, 2017, 06:10:36 am »
MarlaB: I was diagnosed on 1-17-2017, Thank you so much for kind welcome. I'm very glad to have found this forum.

ANSydney: Thank you also for the warm welcome! Now that I have seen several very good surgeons I have learned that they did in fact mis measure. And yes, there is a cystic component. It has grown, but not nearly as much as the Springfield doctors said. My lifestyle hasn't changed much other then to incorperate my limitations. With brainstem and cerebellum involvement it is causing some terribly difficult symptoms. As for meds, I don't take any at all. I am still trying to figure out how to post picture of my MRI'S. As soon as I can I will post it here. I'd love for your experienced eyes to see it :)
Thank you very much!!!
Diagnosed ANA RT side 1.6cm 1-17-17 MRI
3.0CM 6-5-17 MRI
Looking at surgical options
Slight hearing loss on ANA side, gait problems, facial numbness

ANSydney

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Re: Simple Introduction :)
« Reply #4 on: July 13, 2017, 05:23:19 pm »
Hi Holly. I'm glad you double checked your dimensions.

I wonder why the Springfield doctors gave you wrong figures. What is the real figure now?

To post pictures of your MRI, take a screenshot and then upload it to something like Photobucket. From there you can post a link to it here. An example of such an implementation can be seen at https://www.anausa.org/smf/index.php?topic=23404.msg979773646#msg979773646

Look forward to hearing more about your case.

LakeErie

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Re: Simple Introduction :)
« Reply #5 on: July 14, 2017, 04:08:47 pm »
Holly,  depending on the exact location of your tumor, it could involve your 10th cranial nerve, the Vagus. My tumor did. A branch of the vagus innervates the vocal folds and any impairment of that signal can cause aspiration when drinking due to inadequate closure of the folds. It happened to me. The Vagus branch also innervates the swallowing muscles. After my surgery, I had, and still have, problems swallowing on the AN side as well as aspiration of liquids if I do not drink carefully. Am not diagnosing you, just letting you know that it is possible your symptoms may be related to your tumor. I do not consider my vagus nerve complications to be problematic today, i am in the habit of being careful is all. Good luck
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

 


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