First MRI since radiotherapy with cyber knife

[photog1]

PaulW,

Another thing, can I put my friend in touch with you?  Let me know.
Thanks,
Tina

[photog1]

PaulW, I  messaged you about my AN friend. 
Thanks,
Tina

[photog1]

Hello,
Many thanks to everyone who has read my posts regarding my UK friend with the AN diagnosed last February of this year.  I appreciate so much the responses I have received so far.  My friend is very busy running his own large company with many employees in the UK, so he doesn't have much time to do any researching on the Internet re: his condition.  He also doesn't have a working computer at home.  He has a new I-Phone at home but it has somehow stopped working.  Said it stays frozen on one page.  Anybody familiar with that?

I know he has never had a health issue in the past that has been as scary and uncertain as this diagnosis, so it has had him feeling upside down in so many ways.  Since his February diagnosis, I have felt compelled to do research of AN's.  When I first started middle of that month,  all I could come up with was just information about the condition itself and the various ways of treating it.  Knowing he would undergo the radiation with cyberknife, I wanted to learn what effect it can have on a patient who has had it, since my friend had to be hospitalized for a few days after his first, large single dose in late February.  I wanted to have lots more of an understanding of what he was going through and needed to read actual patients' stories of their experiences.  It wasn't until I found the ANA site, sometime in April after he tried to break things off with me (believing he had nothing to offer to further our relationship and hoped I would find someone else.)  He didn't feel worthy of being with me.  I didn't know at that time that it was actually his after effects and symptoms that were talking to me in his e-mail.  Something in him wanted us to not lose contact all together, though, because he had come to have feelings for me as I have for him.

I found where support groups are located here in southeast Florida and got in touch with one of the group leaders.  I corresponded with her for a while and she helped me learn even more about the AN experience and the ways patients handle their journeys, what the symptoms and side effects are and any long-term effects, and especially, what the new normal is. 

I think this is what my guy friend has yet to come to terms with -- the new normal, what his new normal will be.  I don't think that's been determined yet, though.  He is still reeling from his second, smaller dose of radiation with cyberknife on April 24th.  The doctors don't know yet if any further doses would be safe for him to have.  Right now, he is still feeling the fatigue at day's end and his balance needs to get better.  I have told him of vestibular exercises.  What's bothering him the most now is the, apparently, sudden hearing loss in his AN ear (right side ear) since last September (2013).   I think of the hearing loss as like a garden hose with the water running through it.  If enough weight is put on it, the water flow will come to a stop or a trickle.  So, the AN, I think no matter what size it is, puts enough pressure on the nerve (or adjacent nerves as well), to cut off one's ability to hear.  With the AN gone, by surgery or shrinkage via radiation and no further growth, the pressure is relieved on the nerve and hopefully, hearing could slowly come back if there has not been too much damage to it with all that pressure on it.  But, years could pass before this could happen in the case of radiation with either cyber knife or gamma knife or other forms of radiation, which I am not yet familiar with yet.  This is something I haven't yet discussed with my friend.  It is my great hope, and his I'm sure, that somehow, the tumor will die off and shrink, therefore taking off all that pressure on the affected nerves, helping to restore his hearing. 

I would think that hearing would be totally gone in the case where the nerve has been severed.  But, can that happen with radiation?  Does anyone know anything about this?  Can radiation cause the affected nerve to become severed? 

I have suggested to my friend about the 2 types of hearing aids that PaulW mentioned, cros or BAHA.  My friend will be calling me tomorrow morning from work and I will mention to him again about these 2 types of hearing aids.   He's desperate to have at least some of his hearing back.     

My friend also wants to know more about vestibular exercises and what they are.  What should I tell him?

Any feedback or suggestions would be most welcome and very appreciated.  Thanks so much.  It is great to be a part of this wonderful group of caring people and I wish everybody well in their journeys and I hope that their journeys come to a very happy and satisfying end.

All good thoughts to everyone,
Tina         

[ampeep]

First, about the iPhone, suggest pressing the on/off switch & hold down until it asks if you want to turn it off.  Press yes & then let it shut off.   Wait maybe 10 seconds, & switch it on again.  Should be working ok then.

I had GK in early Feb 2014 & five weeks ago, got headaches, got so dizzy I missed a week of work, got really loud tinnitus, lost all of my AN side hearing and got a metallic taste in my mouth. Had a MRI done, which showed the AN had swelled, which explained the increased side effects.

Fortunately, the headaches went away, the dizziness is not as bad, & I can hear a little bit on my AN side.   

You could search Youtube & there's a bunch of vestibular exercises that your friend could do.  Some of those made me feel nauseous, but overall they seem to help.

Main thing is to hang in there and don't get discouraged -- things should get better as time goes by.

Keith

[photog1]

Thanks for the suggestion about getting the i-Phone back up and running.  I'll surely let him know of that. 

I called my friend yesterday morning, and he seemed not quite right (stressed in some way), asked if I could call back later.  Agreed.  Called again later and he seemed more stressed, I could hear his TV on in the background, it was on very loud.  His right, AN, ear is completely deaf.  He said he couldn't talk, said he would call or e-mail me this morning.

No call from him this morning.  That was okay.  He did e-mail me, apologized for not being able to speak with me yesterday.  He later said he was having trouble with his head, had placed an emergency call to his doctor at the hospital.  I didn't hear from him again today.  Feeling worried.

Last week, he told me he wishes I could come to the U.K. to visit him.  It would be our first time meeting in person.  I told him I'd love to come, but he needs more time to heal.  It's been only 5 1/2 weeks since his last CK treatment.  Today, I asked him if he's really serious about my coming there and he said,  "Yes, I'm very serious."  He hopes I can come before long.  The soonest I could come would be about first of September, I have to put in for time off from work first and get it approved.  I work in a small office.  I have never been to the U.K., or even Europe before!  I told him I'd need his help (some financial help, too, I would think), in planning a trip there, but I don't think he is in any shape to do this yet, health-wise.

Oh, but, what I would give to be able to meet him at last, though. 

I'm just hoping it went okay for him at his doctor's today.  I'm feeling very worried.  He has told me that he's been having a lot of pain in his AN ear.  He also has the wonkiness in his head, and some vestibular issues, to some extent.

Thanks again, everyone, for all your help and kindness.  What do you think?  Is September too soon to attempt a trip to the U.K.? 

Thanks for all your help and kindness,
Tina

[keithmac]

I've just started following your thread and don't want to butt in save to say that when, and if, your friend visits from the UK (where I live and from which I travel to AZ each winter) he needs to be careful with travel insurance.

[photog1]

Thanks, Keithmac.  Is that because of his health?  Before I could invite him here later this year, he has invited me to come to Birmingham, U.K. to visit him, as soon as I can.  I have another trip already planned end of this month, to visit  my sister and family up at the lake in Michigan.  The earliest I could go to the U.K. is early September, but I don't think he will be healed enough yet to have me there.  I don't even know what particular documents I would need for traveling there.  I wouldn't be staying any longer than a week or so.

[photog1]

Thanks again, ampeep, for sharing your post-GK treatment experience.  Sounds like you were doing fine until about late April, nearly 3 months after treatment, before any side effects started occurring.  My friend had mostly the fatigue, some coughing and shortness of breath right after his February CK treatment, but it went away, then the swelling of his AN started sometime in mid-March or so.  He was put on steroids for that.  That's when his head wonkiness also began and, I think, his balance issues. 

I don't know if he still has any swelling from that first CK treatment.  He has had mostly fatigue and continued total loss of hearing in his AN ear since the 2nd CK treatment in late April.  Now, with his having to make an emergency visit to his doctor yesterday, I have a feeling he is experiencing a whole new round of side effects, nearly 6 weeks after his 2nd treatment.  This has to be very tough for anybody, to have to go through the same amount of trouble 2 different times due to treatments 2 months apart.  I have not heard from him today.  I'm feeling very concerned.

Regarding the incredible journey of Francesco in his myacoustic.org story, I think my friend's experience is very similar to Francesco's, except that Francesco's hearing was always unaffected by his CK treatment and his post-treatment period.  He was very fortunate not to lose his hearing.

I am happy for you that your side effects are already getting better, and that some of your hearing is coming back!  Awesome!  Please keep me posted on how you continue to do.
Tina

[keithmac]

Thanks, Keithmac.  Is that because of his health?  Before I could invite him here later this year, he has invited me to come to Birmingham, U.K. to visit him, as soon as I can.  I have another trip already planned end of this month, to visit  my sister and family up at the lake in Michigan.  The earliest I could go to the U.K. is early September, but I don't think he will be healed enough yet to have me there.  I don't even know what particular documents I would need for traveling there.  I wouldn't be staying any longer than a week or so.

As a Brit. I don't know what Americans have to do when visiting the UK - the other way round I'm very familiar with! 

For your friend to be fully covered by travel insurance when he visits you he needs to make sure that his pre-existing condition is accepted by his insurer.  In my own case - on W&W - I declared my recently-diagnosed AN and answered questions about my status.

 The premium went up, of course, but it then became a risk accepted and covered by the insurer for the length of my visit.  If your friend didn't do something similar he might not be covered if he became sick in any way that the insurer thought relevant to his pre-existing, but not declared, condition. 

[photog1]

Thanks for that interesting information about travel insurance.  It's good to know that.

I think this is what he may have been thinking of when he told me, early in April, that he won't be able to travel the rest of this year. 

I'm putting my travel plans to the U.K. on hold until he gets much better from what looks to be his second round of side effects, due to the second CK treatment.     

[ampeep]

Tina,

Your Brit friend is lucky to have someone looking out for him like you!  Makes sense to see how your friend is feeling before making plans to visit him.

I played 18 holes of golf yesterday- first time since the side effects.   

Keith

 

[photog1]

Wow, ampeep!  Way to go, doing 18 holes of golfing and you are still having some side effects.  Well, it is true every patient is different and different people have different reactions and recovery times from their surgeries or radiation treatments.  I think you are one of the lucky ones.

I still haven't heard from my friend yet.  When I do it will be when he is back at work because that is the only place where he has internet access.  I haven't even had a chance yet to tell him your suggestion about getting the i-Phone going again.  I'm going to try to reach him by phone again this weekend and see what happens.  The intense pain in his AN ear must be due to swelling of the tumor, I would think.  I hope he can be back at work before the end of this week.  I'm sure he thinks that, too.

By the way, where did you have your GK treatment? 
Thanks,
Tina

[ampeep]

At times I was still a little unsteady & had to make sure I didn't fall down!  (now that would've been embarrassing)   

I had mine done at the Gamma Knife Center of the Pacific in Honolulu, HI.  Was glad I didn't need to fly elsewhere to get the treatment.

[photog1]

That's still pretty good for only 4 months post-treatment, Keith.

Where you had your treatment, either they have a good track record for your particular treatment or you have a good tolerance level.  I'm sure that golf game must have given you a good boost of confidence. 

What concerns me so much about my friend's reaction to his treatment is he has lost interest in so many things, doesn't enjoy much of anything anymore.  He wasn't like that prior to the first treatment in February.  At least he has been getting himself up and to work, but hasn't been able to be there all the time.  He was very concerned about that when he got his diagnosis.  He was worried about how much work he would miss.  At least he is sharing more with me what's going on with him.  At the start, it was like pulling teeth to find out anything from him, even what the diagnosis was.     

Wishing you continued improvement.
Tina 

[ampeep]

Tina,

In April of  last year, I was walking in my yard & heard a 'pop' in my left knee.  Couldn't walk so needed crutches for a month; slowly got better & finally went to see an orthopedic surgeon.  Got arthroscopic knee surgery followed by 2 months of physical therapy.

During that time I got diagnosed w/ my AN!  When I started playing golf again, my bad habits were gone & surprisingly played better than before I got hurt! 

According to the GK team - my neurosurgeon and radiation oncologist said they've treated about 50 ANs & only one person needed steroids and that fatigue is normally not a side effect.

I'm not a psychologist, but it seems like your friend is really stressed out and depressed at this time.  Hopefully, as his symptoms abate, he'll feel better and be more open w/ you.

Thanks for your thoughts!  BTW, are you a photographer?

Keith