First MRI since radiotherapy with cyber knife

[photog1]

I am happy that I heard from my friend this morning.  Indeed, he had been in the hospital this week for treatment for the intense pain in his AN ear.  He was back at work today, too, which is great.  He is still having dizziness, something I hadn't known about before.  I think, too, that he's been very stressed out and depressed.  Going into this in February, he thought it would be a piece of cake, then after first treatment he had the fatigue and other side effects he didn't elaborate on, but said it would be about a month before he felt better.  He was down about that, felt bummed out that he couldn't go to the gym.  He did get back to work about a week to 10 days later and was very happy about that.  Then, in about mid-March, the swelling started and it got very bad.  He had to be put on the steroids.  He took a dive from then on, emotionally and mentally.   It's been mostly an up and down struggle for him since.  And, a roller coaster for me, emotionally.  He said today that he feels a little better.  It's always great to hear him say that.

Currently, I am not a photographer.  I was a professional photographer about 12-23 years ago, specializing in portraiture, and I did some weddings.
Tina       

[photog1]

I'm happy to report that my UK friend has had a good weekend!  He did some work in his large garden and mowed his lawn, despite feeling  dizziness and having balance issues.  I got to speak to him on the phone today and he sounded great.  Hoping that his days get better for him in the coming months, into next year.

His i-Phone is back up and running, but it was already that way before I spoke to him today.  I think he had figured out your suggestion, Keith, on his own.   Your suggestion was correct.  Much appreciated!
Tina

[ampeep]

Good to hear that your friend is doing better!

I'm amazed at the variety of sounds I'm getting from my tinnitus - the other days it sounded like birds chirping.  Does your friend hear weird stuff also?

Always thought it was a big responsibility to take wedding photos.  I had to take photos of my models in architecture school.

[photog1]

I haven't found out if my friend has had tinnitus, never got much of a clear answer about that.  I would imagine he does have it.  I know for sure he is deaf in his AN ear, has been plagued by the dizziness and balance issues since about a month after his first CK treatment. 

I have had tinnitus for over 20 years.  An oralmaxilofacial doctor diagnosed me with TMJ in 1991 and said the tinnitus is the result of it.  I was also put on a liquid diet for 2 weeks.  I had to prepare all my meals in the blender.  I am used to the tinnitus, until I am in a quiet place, then it sounds much louder.  It sounds like a high-pitched whistle and it's in both ears. 

In the spring of 2009, I suddenly developed pulsatile tinnitus.  Went to my neurologist and he ordered an MRI  for me, that August, to rule out a possible aneurysm.  It came back negative for that.  The pulsatile tinnitus continued for years, then just as suddenly, disappeared, as he said it probably would.  It hasn't recurred since.  It has really caught my attention on this site, to read that some AN patients have the pulsatile tinnitus, knowing that I've had it.  It was very bothersome whenever I needed to wear ear plugs at night to block out outside noises.   
Tina

[photog1]

I always keep in mind your advice, Ruthie Mac, of calling my friend in the U.K. more often than e-mailing him.  I haven't heard from him by e-mail this week, nothing since I spoke to him last weekend.  It looks like he is going through a situation that is similar to yours, post-CK, where you didn't e-mail with your friends for a long time.  I will give him another call this weekend. 

I think he has had this feeling that he has to deal with this all by himself, yet when he found out how much I have been learning about his condition, it meant a while lot to him.  He always loves the phone calls from me.  I try to imagine how very difficult it must be to be in his situation, having to run a large company that he owns, with many people on staff, then find out he has this tumor, then the aftermath of the treatment causing him to lose many days of work.  Very scary indeed.   And, incredibly stressful. 

Thank you again for the suggestion of calling him more than e-mailing him.   Keep me posted as to how you are doing.
Tina

[photog1]

I have new concerns about  my UK friend, in that he has told me, twice, that he will call me the next day, then he doesn't call when the expected time comes.  A couple of times, I called him and he was unable to talk at that time, he asked if I could call an hour later.  I couldn't, so then he said can he call me the next morning.  Then, no call from him the next morning.  Has anyone who has had the CK treatment experienced periods of forgetfulness or any short term memory loss?   I wonder if this is  what has happened to him.

Thank you very much.
Tina

[ampeep]

CK is targeted at a very small area (the AN) so it should not affect short/long term  memory as the rest of the brain does not get much radiation.  I haven't had any periods of forgetfulness (aside from getting older).

My guess would be it's because your UK friend is under a lot of stress and having to deal with CK side effects.

Keith

[photog1]

Thanks, Keith.  That's right, the CK doesn't target the brain itself.  So, then I don't understand why there are cognitive issues related to CK treatment.  That has to do with the mind, the brain, I would think.

Perhaps, too, my friend is still having some absent-mindedness.  He did say in an e-mail, just before his 2nd treatment 8 weeks ago, that he couldn't focus, he was absent-minded, confused, his mind felt unsettled and he couldn't concentrate on anything.  I felt very scared for him reading this.  It is especially disconcerting that he is dealing with all this alone, all by himself.

[PaulW]

What your friend is complaining about is surprisingly common.
Its not limited just to CK.
Radiation often leads to changes in the cochlea, and the balance nerve.

http://vestibular.org/understanding-vestibular-disorder/symptoms

My Personal experience is that the cognitive problems relate to problems with balance which makes your brain work so much harder.

[photog1]

Thanks, Paul for the clarification regarding the cochlea.  That is one area I haven't done much research about yet.  I clicked on the link you sent and found the cognitive problems associated with the CK treatment.  It listed everything my friend is experiencing, to a T.   Someone else earlier in my postings also mentioned the cochlea, that his cochlea may be located very close to the AN, much closer than normal.  And, that's how it could be affected more. 

Since he owns and directs the large manufacturing company of his, I can well imagine the extra challenges he is facing and it may well be due to his cochlea.     

I'm glad he is back to mowing the large lawn in his backyard/garden.  It measures 64 ft. by 300 ft., so that is a very big job.  That is also great exercise for him with his balance issues.

Anxious to give him a call this weekend and get caught up on the latest with him. 

Has anyone else had cognitive issues associated with the cochlea?  How long did it last and how much were you affected by it? 
Thanks so much,
Tina

[photog1]

Hello,
Has anyone, who has had the CK radiotherapy, had the cognitive issue of short-term memory loss or being easily distracted?  About how long did those issues last and did you fully recover from them?  My UK friend has been able to resume socializing with his friends (which is great!), but I'm seeing signs that he is still having the short-term memory loss and is easily distracted.

Thank you for your responses.
Tina       

[PaulW]

I had short term memory problems mainly typing and word recall and concentration
That happened before CK... After 6 months I felt a lot better..
After 12 months I thought I was pretty much back to normal..
I did struggle if I did a 60 hour week. It drained me.
I thought I was growing old.
It probably took me 3 years to really feel excellent and have the energy to do what I used to do all week and not just for a few days and have a rest.

[photog1]

Thank you, Paul, for your response to my last post.  It has been baffling, wondering when my friend will ever have his first MRI after his 2 separate CK treatments so far apart from each other.  Six months after the first CK last February or 6 months after the April CK session?  It's as though he has also had to go through the same round of side effects after each treatment.  I wonder how often it is done this way.

I have passed on a lot of your previous suggestions of help to him and I think it has helped pull him out of the funk he was stuck in for a long time after his 2nd, April treatment.   Going into this in February, I think he thought it would all be a piece of cake for him, have the treatment, the tumor shrinks in a short time and all is well after that.  If only it could be that way for him, given the daunting responsibility of managing his own manufacturing company.  I am sure there are a lot of people working there, would  like to find out how many.

Thanks again, Paul.  Your advice has been right on the mark,especially about 90% of the battle being a positive attitude.
Tina 

[photog1]

I am just back from vacation, was in touch with my UK friend while I was away.  He has continued to have tremendous bouts of dizziness and loss of balance.  One day he feels okay, the next day he is falling all over the place.  It blew me away to hear the news from him that his doctors want to cut a hole in his skull, no removal of the tumor, just put a hole in his skull!  What is going on here??? 

He is seeking a 2nd opinion about this matter.  He is totally freaked out by this latest development in his journey of treatment, and so am I.    Does anyone out there know why the doctors would perform this particular form of "surgery?"  It later occurred to me that perhaps the tumor is so large at this  point that they cut the hole to relieve pressure caused by it.  Could that be what is going on here?  How would they know what size the tumor is without doing an MRI?  He hasn't had one yet.  My friend was unable to be more specific with me about this, over the phone. 

Thanks so much for input anyone may have about this scary matter.
Tina

[photog1]

I'm concerned that my UK boyfriend hasn't told me anything more about the surgical procedure his doctors want to perform regarding his AN.  Not to remove it, though.  He does still have a lot of swelling, causing him tremendous vertigo and dizziness.  He is not taking steroids, said he couldn't tolerate them when he last took them after his first CK treatment last February.  I'm thinking the swelling this time must be due to his 2nd CK treatment in late April. 

When I saw my ENT yesterday, I asked him about my boyfriend's AN, the swelling and the mysterious surgical procedure.  He said it would be to relieve the pressure.  He also said steroids are the best treatment for the swelling.  I have passed this information on to my boyfriend. 

I wish my boyfriend wouldn't continue to think that he will be like this for the rest of his life.  I've talked myself blue in the face, frequently assuring him that all this will pass in due time.  That no two patients are alike, no two AN's are alike.  He's not a forum person, and has little to no time to do any research of AN's and the recovery process from treatment, so I have taken it upon myself to help him by letting him know that he's going to be okay, be patient and that 90% of the battle is a positive attitude. 

I think he's just so stressed from still managing his manufacturing company.  That alone is an awesome responsibility and he is so driven, he somehow is still working in his same capacity.  It must take an awful lot out of him.  I really do hope and pray that he will get better before long and not continue to think so negatively about his recovery.  Has anyone out there recovered from the AN swelling without taking any steroids?  Did it take a very long time? 

I'd appreciate any feedback from anyone out there.  Thanks so much.
Tina