Author Topic: In a Crisis  (Read 13955 times)

milhaus

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Re: In a Crisis
« Reply #15 on: April 28, 2015, 02:05:49 pm »
Milhaus (Andrew)

I just read your post and had to comment on how much better you sound.  You really fought the good fight my friend.  It is wonderful to see how you now can pass along encouragement to someone else.  This is truly a wonderful place...especially when you can see someone uplifted by the support found here.  The ultimate recognitition of the success of this forum may never truly be known.  Just a word, or a cyber hug and some prayers can touch so many who never post.  The knowledge of people who have "walked the walk" and shared the hardships, means so much to all of us who travel this path.  With gratitude to all who have helped me and from whom I continue to draw encouragement, I extend very best wishes.  Andrew, keep on keeping on....good to hear from you.

NYL

NYLady:

I thought I might post a reply to your last post back in this thread so as not to distract from someone else's needs. I appreciate your comment, and I hope you are doing well also. I am feeling better. I am in physical therapy right now and trying to exercise everyday to combat my dizziness. Originally I just thought I was dizzy but that my balance wasn't too bad but I have discovered since going to PT that my balance is actually pretty bad...worse than I knew. This has really doubly motivated me to work harder at recovery. I am on medication which is helping with the depression. I also had another MRI which showed only the smallest traces of tumor remaining. My surgeons say I won't need another MRI for four years. It feels good not to have another surgery or more treatment hanging over my head.

I really don't feel like some shining success story, but at the same time I really wanted to offer that poster all the encouragement I could because I felt like I can really understand the position she is in. When I was filled with self doubt, totally stressed out, hopeless and lost, the thought that I had an acoustic neuroma had never occurred to me. Of course I had come across it in my research on causes of vertigo but I dismissed it as a possibility because it was so rare and a previous CAT scan had missed it (I didn't know a CAT scan wasn't an effective way to find an AN). I could have really used some encouragement during those times.

I am feeling a lot more positive about the future however. I have begun studying for the GRE, identified a program I want to attend, and am working on my health everyday. Physically and mentally I do feel better. I really do believe perseverance is key, and I won't give up. No matter how hard things hurt in the present, time can heal all wounds. Thank you to everyone who has offered me encouragement.

Andrew
« Last Edit: April 28, 2015, 02:07:43 pm by milhaus »
3.8 cm left side AN diagnosed June 2013

Drs. Thedinger and Milligan at St. Lukes Neurosurgery (Kansas City)

Translab July 2013
Translab round 2 March 2014

NYLady

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Re: In a Crisis
« Reply #16 on: April 28, 2015, 02:37:46 pm »
Oh Andrew!  Of course you are a success story.  Did you not say you are more positive about the future?  Continue to work hard, stay positive and GOOD THINGS will happen.  I will also be starting some VRT shortly and will think of how hard you are working at the same time.  I think we will both see some wonderful improvements.  You have motivation...and that is healthy.  You are willing to do the work and that hard work will also help with depression.  Nothing is worse than feeling you cannot do anything to change your circumstances...so many of us have felt that way at times.  Just keep going....Look forward to hearing about your continued progress. 

Best,
NYL

milhaus

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Re: In a Crisis
« Reply #17 on: September 18, 2015, 01:49:02 am »
A bit of an update, and some interesting new health findings. My tenuous optimism and improvements from before didn't last too long. I am still pretty much exactly where I was before, although my dizziness is a lot better. I still struggle with extreme fatigue, depression, concentration problems, and the like.

So I went to the doctor again begging for help. After running a load of tests, it turns out I have very low testosterone. I am only 25. Average levels for someone my age are over 600 ng/dl, and mine just two days ago was 180 and a few days before about 225 which qualifies me for hypogonadism. Further blood testing seems to indicate that the problem is with my hypothalamus or pituitary gland. It could be another tumor, or some type of damage. I am being referred to an endocrinologist.

This could certainly explain all of the symptoms I am having, and although it doesn't immediately seem like an AN issue, it might be related and my doctor said as much. My tumor was a pretty big one, and its positioning and growth had it really pushing towards the center of my brain pushing my brain stem completely to the side. The hypothalamus is somewhat close. Could the tumor have compressed it, or could it have been damaged during ~26 hours of brain surgery, or even afterward when my head was swollen to the size of a hot air balloon?

I don't know yet, but hopefully I will have answers soon. Has anyone ever heard of anything like this happening from translab before? They may be totally unrelated, however my lifelong string of health problems seems easier to swallow if they are related.  It will be at least a month before I can see an endo, and maybe sometime after that I can get on hormone replacement therapy and feel better.

Thanks for the support,

Andrew
3.8 cm left side AN diagnosed June 2013

Drs. Thedinger and Milligan at St. Lukes Neurosurgery (Kansas City)

Translab July 2013
Translab round 2 March 2014

Mimispree

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Re: In a Crisis
« Reply #18 on: November 14, 2015, 04:44:09 am »
How are you doing?  I often think about you and I wonder how you're doing?

Be well,
Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

milhaus

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Re: In a Crisis
« Reply #19 on: December 16, 2015, 11:00:01 pm »
I am starting to do better. I appreciate your concern Michelle, and apologize for taking so long to answer. It has been so long since anyone posted on this thread I stopped checking it. I quit my job and moved back to my hometown. I got a new job that is much better for my health situation working as a pharmacy technician for a local family who I have known for a long time. My parents bought a house for my wife and I to live in and I am saving money to eventually finish my education, or whatever I decide to do.

I am trying hard to just accept that it is OK that I haven't been to grad school yet. I am trying hard to accept my limitations and just allow myself to be OK with the idea that I may never accomplish all I had set out to do. I am trying to find a way to just be happy and just enjoy the rest of my life. It is hard because everyday I am faced with just how terrible I feel physicall, but at least here I have a lot more support. Life in my small hometown, close to family, is far less stressful than in the city. I just finally got my BAHA 5 programmed yesterday as well.

In conclusion, I am in a much better place than I was before.
3.8 cm left side AN diagnosed June 2013

Drs. Thedinger and Milligan at St. Lukes Neurosurgery (Kansas City)

Translab July 2013
Translab round 2 March 2014

 


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