Author Topic: First MRI since radiotherapy with cyber knife  (Read 50447 times)

photog1

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Re: First MRI since radiotherapy with cyber knife
« Reply #90 on: May 16, 2015, 02:17:24 pm »
Thank you.

I wanted to understand all that I could about AN's and all they entail because I cared a lot about my friend and I wanted, and needed to understand what he was going through.  I was concerned about the way his e-mails sounded, or lack of them, once his side effects started post-CK treatment(s).  When he told me about having to go through CK again 2 months after the first treatment (he said he got a smaller dose the 2nd time), he felt like he wanted to escape from the many terrible side effects he had.   He was terribly concerned about how he would properly direct his manufacturing company in Birmingham.  I think some people are much more adversely affected by the treatments than other people are.  He fell into this category.

I tried researching a lot on the Internet, then came upon the "My Acoustic Neuroma" story by the guy named Alejandro.  I saw my friend in this story.  Not long after that, I found this site on the Internet and this discussion group has been the most helpful and informative source of information for me, to learn what I needed to know, to help him.  He was resigned to his situation, thought his life was over and I knew it was not right for him to feel that way.  He had said he didn't think he could contribute anything to the relationship, as though he was washed up for good.  It totally changed his outlook on life.  He later said he had no aspirations other than to recover from his ordeal.  I often told him that it could only get better for him as time went on.  As Paul W. stated last year in his post, 98% of the battle is a positive attitude.  I told my friend this, a lot.  He just needed to have some patience and a lot of faith.  Sadly, I think what he lacked the most was faith.

I had gotten very angry with him a month after I returned from the UK.  We exchanged some very heated e-mails and he finally told me he didn't want to communicate with me anymore.  I later tried apologizing to him for my anger which I now think was based on misunderstandings and things I had not yet been made aware of, by him, regarding his condition.  But, I have received no forgiveness or a kind word from him since.  Very painful for me to go through. There really is nothing I can do for him at this point, so I can only continue to leave this in God's hands.  And, I hope for his sake, he will recover.  I want him to realize someday that I was right when I told him he will recover someday, that it takes different people different amounts of time to recover.  I've told him everyone's journey is different, every tumor is different. He couldn't seem to believe that.

In hindsight, it could be that since he didn't think he had anything to contribute to the relationship, it was because he felt he wasn't able to function as he did before, he could have made up the matter of his not being to travel the rest of last year, making like the doctor told him that.  It seems that he made some pretty dangerous conclusions about his situation, considering he lives all alone in a large house.  After I got back here, he wrote and apologized for not being a better host to me, apologized for the state of his health, and also said that the biggest issue for him was having someone else, outside his own family, living in the house with him.   Since his divorce, I was the first one staying in his house, outside his family.  Like I said, at this point, I can't help him anymore but to just put it all in God's hands, even though I do still have feelings for him.  It was that strong a relationship we built, prior to the start of all his post-CK side effects and how much it changed his mind-set, that I still have the feelings for him, and I do pray for him frequently.  There's nothing else I can do for him, and that's very sad.  But, what can I do?                   

photog1

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Re: First MRI since radiotherapy with cyber knife
« Reply #91 on: May 19, 2015, 09:10:53 am »
One more thing I should have mentioned about my English friend, he was very concerned about his having very high blood pressure at the time he had me there visiting him.  I didn't know that blood pressure can be affected by the effects of radiosurgery.  He said he takes BP medication, but despite that, his BP still rose quite a bit.

PaulW

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Re: First MRI since radiotherapy with cyber knife
« Reply #92 on: May 19, 2015, 04:13:32 pm »
Pretty sure blood pressure is not affected by Radiosurgery for small AN's like your friends.
High Blood pressure after radiosurgery is more likely linked to lack of excercise, change in lifestyle, or the stress of it all.


10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

ANnIdaho

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Re: First MRI since radiotherapy with cyber knife
« Reply #93 on: May 19, 2015, 05:00:55 pm »
My two-cents worth on high BP (whatever the heck that's worth  ;).  I too have a small AN and am currently in W&W.  My blood pressure has definitely gone up over the past month even after doubling my usual dosage of BP meds.  However, I believe it could just be due to stress. Stress of having an AN, stress of deciding what to do. etc. 

Bonnie
3/3/2015 MRI 9.2mm x 5.4mm AN discovered
Removed Middle Fossa 9/22/2015 by Dr. Friedman Keck Medcial Center. Hearing preserved! Doing great.  If you'd like more details as to surgery/recovery feel free to visit my caringbridge.org website @ http://www.caringbridge.org/visit/sayonaraschwammy

photog1

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Re: First MRI since radiotherapy with cyber knife
« Reply #94 on: May 20, 2015, 06:06:18 am »
Almost from the time I arrived there, my friend was a bundle of nerves the whole time I was there.  He was facing the prospect of another, more radical form of treatment for the continued swelling of his tumor, and felt scared and very anxious with anxiety over it.  He had taken the steroids earlier last year, said he hated how they made him feel and he was determined never to take them again.

He distanced himself from me to such extent that I was unable to help him in any way.  I felt like a failure to him, help-wise.  To see his enormous stress from his AN still very swollen, up close for the first time, was a daunting experience for me.  Yet, he was in great physical shape, getting up early most mornings and going to the gym, which he had been doing for a long while before I came.  He did some house chores, even ironing, while I was there.  His son, with his own 2 dogs, had recently been at the house to visit and he told me he had difficulty tolerating the dogs being there, yet he grew up with dogs, loved dogs all his life.  It appeared to me that he had adjusted to his physical challenges associated with his CK side effects, yet he was still greatly affected by it, cognitively and emotionally.  I told him he was doing remarkably well, considering the vestibular challenges he'd had about 3-6 months earlier, but I couldn't actually get through to him.  He was aware his AN swelling could last years and I got the feeling he was trying to come to terms with that.  But it was obvious that he was not able to handle being in a relationship.  I think, before I came he thought he could but once I was there in person, he couldn't handle it.   

The last time I was in touch with him, a few months ago, he was still very much the same way.  He never did have that other form of treatment, as far as I know.  He was not pleasant at all in those communications, makes we wonder if he had been put back on the steroids again, and I know how much he hated that.  I've never stopped telling him that he will get much better.

         

photog1

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Re: First MRI since radiotherapy with cyber knife
« Reply #95 on: February 22, 2016, 01:54:12 pm »
Hello to everybody,

It amazes me to see how many viewings of my postings there are re:  this particular topic, given that I haven't posted any updates in so long.

I'm not in touch with my British friend anymore, but I do frequently wonder how he is doing at this point, and will always wonder.  He turned out to be one of the most mysterious people I have ever met.  I am thinking this now because he is also a very private person.  I don't doubt that he's gone through hell with his AN, before and since his treatments. 

If anybody else is in his situation, I send my prayers and very best wishes to you for a full recovery.  The same prayers go to everybody with an AN, and also to everybody on watch and wait status.
Regards,
Tina