ANA Discussion Forum
General Category => Inquiries => Topic started by: photog1 on May 22, 2014, 01:23:55 pm
-
Hello,
I am writing again to the forum in hopes of finding out more about life, post-radiotherapy with the cyber knife. I am not an AN patient, but do have a dear boyfriend far away from me (he lives in the UK), whom I think if having a lot of difficulty since his 2 radiotherapy treatments, the first was in February this year and his second was 4 weeks ago today. We used to be in contact with each other quite a lot, either by e-mail or by phone. Now, I don't hear from him at all. My e-mails go unanswered. I called him 2 weeks ago and he sounded happy to hear from me, but he was not having an easy time with the side effects. He was very fatigued but had started going back to work, on a limited basis. I care about him a lot but I think it could be too much of a burden on him for me to be calling him. He may need all his strength to heal. He is 56 years old. He did say his doctors are unsure if it is safe for him to have any further treatments.
His AN was about 1.7 cm in size at diagnosis in February this year. I am very concerned about how he is doing, mentally and physically. He suffered many of the usual side effects after the first treatment, which was larger than this second treatment.
I need to know, has anyone out there had their first MRI, post-radiotherapy with CK, just 4 months later? How were the results? I read that 6 months is the usual time before the first post-treatment MRI. He said he is having his first MRI next month (June). That's only 4 months since first treatment. Has anyone's AN shown signs of shrinking/dying after only 4 months?
I'm curious to know. I am sorry to have to turn to the discussion forum for answers which I can't seem to get from my friend. He has been so shy with me about his situation. Could this be a guy thing with him, attitude-wise? I've never known anybody with an AN before, never heard of an AN before my boyfriend.
Thank you so much for any comments and answers to my questions and concerns.
Tina
-
Hi Tina,
I'm sorry your friend is not communicating more with you, as you sound very supportive, and god knows anyone dealing with an AN needs as much support as possible. I'm surprised his treatments were so far apart - but maybe they have a different approach in the UK. Usually radiation is either done in a one dose treatment (Gamma Knife) or fractionated in 4-5 sessions (Cyberknife or Linear Accelerator ( which I had) or 30 sessions with Cyberknife or Proton.
Regardless of the choice, the recovery time and process is completely different for everyone, so it's hard to know what to expect. I had a tough time with fatigue for the first 4 months. And the dizziness and wonky headed feeling is so hard to describe, I gave up trying to find analogies and just said "I'm miserable" which everyone can relate to on some level.
For a few months, I needed to use all my energy to just get through work and daily errands with nothing extra to give to relationships with friends. Even returning emails could seem overwhelming. I wasn't depressed, but found I needed to withdraw from social activities because it was too hard to engage in conversation especially if it required processing other people's problems. Since relationships require give and take, I just couldn't be a good friend until I felt better. Sometimes I feel like my friends are getting impatient with how long it's taking me to feel better and why don't the doctors don't have better solutions, etc. So, in a way I feel like I'm letting them down. Maybe that's how your friend feels.
If so, the best thing might be to keep communicating your support in whatever way requires the least amount of responsibility on his end. It sounds like phone calls worked better than email - maybe because they're more spontaneous.
Sending a care package of some favorite items might be well received.
As far as the MRI, there's not much to see in the first year. I had one at 6 months, mostly out of curiosity. It showed swelling of approx 4 mm, which is not unexpected, and only justified my feeling miserable!
But at 6 mos. my energy is much better and I'm back to my regular schedule. Physical Therapy is helping with balance.
Don't give up on your friend...we need more caring people like you in the world!
Ruthie
-
Tina,
You are correct when you state that the first post treatment CyberKnife MRI is taken at 6 months. I suspect the reason your friend's is being done at 4 months is because of all the problems he is having. I was very surprised to read your post because CK sessions are supposed to be painless and CK is supposed to have the least impact on the quality of life. From my online research, your friend's problems are the exception rather than the rule and I feel badly that he is going through this nightmare. Here are some things about CK that I have found out and may help you understand your friend's situation better-
It is normal for tumors to swell after being hit with radiation; swelling may take place from 2 months to over 2 years after CK treatment; side effects from CK may take up to 2 years to appear; it may take 2 or more years before any shrinkage is seen on a MRI and sometimes there is never any shrinkage at all; the main goal of CK is to kill the tumor cells and stop further growth and if shrinkage happens (due to necrosis) then that is an added bonus. Necrosis or cell death causes the tumor to shrink but that takes time, lots of time (as in years), so patience is needed. Just because there is no shrinkage does NOT mean CK failed but continued growth is a sign of failed treatment. That is why ANs must be monitored post CK treatment. It will be extremely unlikely to see any shrinkage after 4 months since the AN will probably still be swelling from the radiation. If anything, most AN patients will see an increase in tumor size within the first year post treatment but if one realizes that it is normal for tumors to swell from radiation treatments, that should allay any fears that the increase in size is pathologic and is common.
Almost all AN patients will still have the same symptoms that existed prior to CK. Some may go away, some may improve, some may become worse, but most will remain.
-
Thanks so much to both you, Ruthie and John. I tried to print up the replies to my post, but don't seem to find an icon to click on to get them printed up. I will try to remember the most important points you both made. I can see both of your points. Since this guy is a good friend of m mine, I have made it my mission to learn all I can about acoustic neuromas and all they can entail, so that I can understand his situation better and offer any help that I can. I have introduced him to the ANA.ORG site and the ANA has sent him a large information packet like they sent to me, too. Last time I spoke to him on the phone I mentioned it to him and he looked forward to receiving it. I hope he received it okay and is reading through the material now.
Going into his first treatment in February, he had a positive attitude. We were talking about his coming here to the U.S. to visit me. It would be the first time we met in person (we met online, of all places, early this year) and have gotten to know each other well enough that we both greatly anticipated our first meeting and being together to see what that would be like. And, see where things go from here.
After his first CK treatment in February, he initially had the fatigue, felt bad he couldn't go to the gym. He is also an engineer, now the director of his own company that manufactures steel products for the construction industry. He lamented over not knowing how much work he would miss. He is the only person directing the company. His work and his company, which he founded, means the world to him. If there were any other side effects, he didn't tell me of them.
About 10 days after that first treatment (larger than the second treatment 4 weeks ago), his spirits picked up, he began to return to return work and was calling me again. We spoke again about our meeting for the firsts time. About a month after that first treatment, the swelling started and it was very difficult for him to tolerate, plus he had difficulty tolerating the steroids he was having to take. We continued to be in touch, however. Then, suddenly, in the space of only 2 days or so, he e-mailed me (April 4th), saying our relationship couldn't continue, that he had nothing he could contribute to it anymore, he said he can't travel anywhere rest of this year and that I shouldn't wait for him. It was like pulling teeth trying to get him to tell me what had happened that compelled him to come to this shocking decision!!! I was horribly devastated!!! The most I could get out of him was that he had made this decision after meeting with his doctor that morning and that he was shattered! Shattered about what??? He wouldn't tell me.
I could only guess and speculate (so much speculating has exhausted me) that the doctor had decided to do surgery to remove the AN (it's in his right ear.) After much e-mailing back and forth that day, my friend and I did decide that we will remain just friends and keep in contact. He didn't really want to lose me, I surmise.
So, we have been just friends since. After that e-mail, I started finding out as much as I could about AN's, online and communicating with the ANA. With all that I have learned about AN's since, I have learned enough to get a better understanding of what he is going through, knowing what all the side effects can be. I would assume he has had some balance issues, although being the avid gardener that he is, he did mow his lawn the day before Easter. And, he has a huge backyard, 64 ft. by 300 ft. I know that because we spoke on the phone that day (I called him.) It was during that conversation that he told me of his upcoming, 2nd CK treatment on April 24th. I could tell he wasn't looking forward to it. He was to have it on March 31st, but somehow it got pushed back to April 24th.
It was the day before that 2nd treatment that I got an e-mail from him and I could tell he was having the head wonkiness big-time (head wonkiness is something new to me), in that he was unable to focus (he had always prided himself on being a focused individual), he was absent-minded, couldn't concentrate, he couldn't appreciate things and felt very tired and unhappy about how he was feeling at that time. He said he wished he could escape.
When I called him 2 weeks ago, he seemed glad to hear from me, but sounded like all the life had drained out of him. He was able to stay on he phone with me for as long as an hour, which is good. A couple of days later, he wrote to thank me for calling him and it was good talking to me. He also thanked me tor my efforts in learning about his medical situation and understanding it. He truly appreciates it. HE actually said he hopes one day he can be of help and support to me, as I have been to him. So, at least he is looking in a forward direction saying this.
Ruthie, thanks for the suggestion that I call him instead of e-mailing. I will call him again this weekend and find out how he is doing at this point.
Yes, it does surprise me that he has had 2 treatments so far apart from each other. He has had to go through all this hell, one after the other. I know that the CK treatments are usually given over the course of only a few days. I told him this and he seemed to know that, too. He told me more about how he is doing in this most recent phone conversation than I have been able to find out from him in e-mails. So, I will continue calling him. I know he needs the support, he doesn't get any of it from family. His father passed away 30 years ago and that was very devastating for him. He is divorced with 2 adult kids, his ex took a lot from him, financially, in the divorce, 8 years ago. He started again from scratch and built up his assets to where they were prior to the divorce. He is a very hard and dedicated worker. His son works in his company, but I don't yet know in what capacity. So, I can imagine how freaked out he could get if he can't be at work running his company. I know how much that means to him. So, I have tried to give him all the space he needs to heal and slowly get back to better health. I know it takes time and a lot of patience. Maybe he has not had much patience. I have a lot of it. I'm wondering now if what his doctor told him, prior to that April 4th e-mail, was how long it could take for the tumor to die off and he be back to good health. Maybe he had been thinking it would be only a matter of a month or two. I know it could take at least a year, 2 years or more, however long it takes. I told him no two patients are alike in their experiences with this nasty little thing. I think he understands this.
He lives alone in his own house, has no domestic help. He takes care of everything himself, even cooks for himself. I don't know how he could do this with all the side effects from his treatments. He said he has lost all his hearing in his AN ear. I don't know if that is due to the nerve being completely severed. Can CK radiotherapy cause the hearing nerve to completely sever? I would bet he had some hearing loss prior to his diagnosis in early February. I understand that is one of the first symptoms of an AN.
So, that's as things are for now. I will be interested in speaking to him again this weekend to get an update. He knows that he has my total support. Just wish I could be the one to go there to be with him, but I know that would be too much for him right now. I told him that someday, he will look back on all this and realize he is stronger because he made it through this nightmare. I'm doing all that I can to help him have only positive thoughts and a positive attitude.
I'm thinking probably nothing will show up in the way of improvement from his MRI next month. To me, that's too early. I hope he won't get terribly discouraged if there are no positive changes.
I'm sorry that I've gone on for so long here, but I'll keep you posted. Thanks so much again for your input and I wish you both the best in your healing processes, as well!
Tina
-
I read your post with great interest..
At first when I read about two treatments 1 month apart.... my first thoughts were "what the F" That doesn't sound right.
I have been very interested in the debate between Single Session Radiosurgery versus Fractionated Stereotactic Radiotherapy and the science behind it. Two sessions one month apart may actually be the best of both worlds..
FSR exposes patients to many times the radiation of single session radiosurgery. It is theorised that this exposes the patient to a small risk of non related cancer. This is in addition to the chances of malignant transformation.
Having two sessions one month apart may in fact be the perfect compromise between Radiosurgery and FSR for AN's
Having spoken to a number of radiation oncologists in the past I see the logic of two sessions one month apart.
As for your friends symptoms... have a read of this website.
www.myacoustic.org
Most of us have problems on our journey.
I can certainly relate to your friends symptoms and behaviour.
The first 6 months in particular can be tough.
While I did go back to work straight away I found month 5 the most difficult.
At the time I was the owner of a business with about 35 staff.
While I was functional I was not driving the business, or providing the same leadership that I had before the AN.
I got tired easily and distracted
I thought I was all good at 12 months, but I was even better at 24m and 36m
There is light at the end of the tunnel, but the journey is typically 2 years or more.
Don't expect anything from the MRI, the tumour will probably be bigger.. It may have a darker centre, but that doesn't mean much either, because often the 12m one shows an even bigger tumour with no dark centre...
Its all normal, don't panic when it happens.
The most important thing is that the tumour shrinks after the 2 year MRI.
The 2 Year MRI typically marks the end of the swelling period for the majority of AN's
Steroids do make some people feel awful, including depression when you stop taking them.
I would take the doctors advise, but certainly consult with them to take a minimal dose and try and get off them as soon as practical again strictly following doctors orders. Stopping long term steroid medication against medical advice, suddenly can be very dangerous.
I found Ginger travel sickness tablets to be of use to reduce dizziness and that foggy head.
Getting up and getting active also made me feel worse initially but better the next day.
I hope that helps
Taking steroids as an optional extra is probably a bad idea.
-
^-^Wow, Paul W, I read your response with great interest, as well!!! First, I recognized the website you gave me, in that I have read the incredible story of your AN journey after the single session of CK radiotherapy that you had at Stanford in 2007, and the story spanned 5 years. You must have had a large dose of it, having only 1 session. It is a fascinating story which I believe all AN patients, who have had the same treatment, should read! I printed up your story, highlighted many areas of interest and used it as a general guide when I last spoke to my friend on the phone 2 weeks ago, mainly, trying to instill in him the positive attitude he needs to help him get through his ordeal and have a good outcome. I still read through it from time to time. I see you were able to travel a great distance a couple of times throughout your recovery, gives me hope that my friend can still travel here for us to meet and see each other. I live in southeast Florida, by the way.
His 2 CK radiotherapy treatments were actually 2 months apart, so whichever side effects he had gotten over in between are back, all over again, following the 2nd treatment April 24th. One month ago today. So, your thinking that the treatments that far apart, even a month apart, is the better way to go? That is fascinating.
I know you had great help getting treatment at Stanford. I have heard from my dentist, who knows someone who had the surgery a few decades ago and has facial paralysis and deafness in the AN ear, that Stanford is the best place in the U.S. for AN treatment. His friend was not treated at Stanford.
By the time I heard this information, though, my friend had already had his 1st treatment (February 20th this year). It was a larger dose of CK radiotherapy than the dose he got in April.
My friend, by the way, lives in Birmingham, England. Born and raised and educated there.
I don't think there will be any changes showing up in his upcoming June MRI, so soon after the 2 treatments. I just hope he doesn't have to end up having surgery to remove the AN, because when he first told me about his diagnosis and the treatment options, I could tell he definitely didn't want to go through the surgery. So, he was aware then of those risks.
I do have a feeling, too, that he is becoming more accepting of the true reality of his situation and the timeline ahead for recovery (how long it could take for recovery.) Time does heal wounds and shattered expectations.
I'll be interested in speaking to him again on the phone tomorrow and get an update from him. I'm ready for the real possibility that there won't be much change from 2 weeks ago. It is different for him this time around because after the first treatment in February, he was back e-mailing me fairly regularly about 5 days later and resumed calling me about 2 weeks later. Oh yes, he had to be hospitalized a couple of days after the first treatment in February, before he could be released to go home. At home all by himself, he called his doctor daily to report to him how he was doing. I think when the AN started swelling the first time, from then on, that is when his situation became something out of his control and it had freaked him out since. I could tell that from the wording of his e-emails. Now, since the 2nd treatment, he seems more calm and accepting of his limitations, but I think he believes he'll be that way forever. That is when I told him of the ANA organization and asked them to send him the same great information packet they sent to me. I hope he is reading through the materials and getting a more firm hold on his situation and not feeling so hopeless. ANA can give AN patients so much hope!
Thanks again for your response! It is great to meet you! I may have more questions for you as time goes on, but I clicked on your link "e-mail me", but nothing came up.
Thanks so much,
Tina
-
Hi Tina,
The website
www.myacoustic.org
That isn't me....
However some of the problems we had, and the timelines are similar and talking with others who have had radiation whether that be gamma knife, cyberknife, novalis etc the theme of what happens after radiation is not uncommon.
The people that seem to have the least side effects from radiation are the ones that are completely deaf and their balance is already gone.
I would be interested in knowing where he had Cyberknife, was it at the Harley st Clinic in London.
What were the doses he received ?
I think it is easy to blame cyberknife and swelling for the problems..
Have a read of this website in particular these two pages
http://vestibular.org/understanding-vestibular-disorder
http://vestibular.org/understanding-vestibular-disorder/symptoms#cognitive
I already had some of these problems before CK.
After CK they just got worse....
A lot of what your friend is experiencing in my opinion is problems with his vestibular system.
It maybe well worth getting him to see a vestibular therapist.
We had a vestibular therapist come and talk with our AN group
So many light bulbs went off in the room, when she discussed symptoms and experiences.
She recommended regular walking over uneven ground to help retrain the brain.
Walking along the beach was one suggestion, although a little hard in Birmingham.
She also taught vestibular exercises, however she felt that walking everyday helped people more and was easier to comply with.
I had problems with typing and speech BEFORE Cyberknife
Words just didn't come out right.
Typing was also hard it would take me hours to write a simple email as words and letters were frequently jumbled.
As for travel, that should not be a problem.
He will feel the same sitting in a chair at home or sitting on a plane
I actually live in Australia, and was treated in Munich Germany.
I travelled to Germany because in July 2010 Australia didn't have a Cyberknife or Gamma knife.
I flew home 36 hours after the CK treatment. a little more dizzy and deaf than before treatment but otherwise OK.
I drove 400 miles in a day for work, 3 weeks after treatment... I wont say it was easy, but I felt I did it safely
Flew a total of 6000km 1 month after CK as well, no problem. other than the ones I already had.
At 5 months I felt pretty crappy so I decided to jump in the car and drove 1200 miles over three days across the outback.
7 months after CK I flew to China, and Taiwan for work and play... The travel was fine, but had to push myself to do many things.
Coming down the great wall of china was very slow, I just had no balance, felt like I was totally drunk, but I hadn't touched a drop. My brain had to do so much work on the way up, coming down it sort of shut off..
I think it is fair to say that I could do anything I wanted to after CK, but it was not always easy.
Keeping a positive attitude is 90% of the battle..
Things do get better, much better.
At 5 months after driving the 1200 miles I had my first day where I felt normal. That feeling lasted about an hour.
But slowly the normalness increased and the living in the cloud sensation disappeared.
The first 6 months are often the most difficult.
Every person that I have ever met that has had radiation and had symptoms has always had them improve very significantly within two years... But it does take that long
I really enjoy snow skiing with the family and went skiing just before I was treated.
Basically I had trouble skiing due to poor balance it just wasn't pleasurable any more.
Went skiing again 12 months later and again did not enjoy it, I could do it.. but my poor balance made it hard.
At 2 years I could ski again and enjoyed it again. My balance problems had improved very significantly.
I am nearly at the 4 year mark now,
I don't think about my tumour much at all, life goes on just like it did before my AN
My hearing remains, and I can do everything again.
Your friend right now is probably thinking this will never end... It will.
The hump month is month 6.... things nearly always improve after that.
-
Please keep in mind that it takes time for radiaton to show results
The overall success rates of radiation is around 98%
Many tumours that swell even for more than 3 years eventually shrink.
Its important that radiation is given the time and every opportunity to work before a surgery is planned.
Some surgeons have been known to operate too soon without letting the radiation take its course.
The chances of needing an operation especially at this early stage are very low
-
:-[ I apologize, Paul W, I mistook you for the author of the myacoustic.org site. That was quite a story he wrote, though, about his experience, which actually lasted longer than yours. So, you are pretty much back to normal after 4 years? That is great if you are. I failed to read the small print info. at the bottom of your post. The author's diagnosis occurred in 2007 and had his CK radiotherapy treatment only once. His first 6 months were very similar to yours.
I have a rare medical condition myself, of which there is no known cause, and I have to take oral chemotherapy for it, which has made me anemic and feeling varying degrees of fatigue. So, I can relate to the AN people regarding that side effect. I have been on this very strong medication for over 2 years. My blood has to be checked every 2 months for any renal and hepatic changes. I also work full-time in a very stressful environment and my job responsibilities have increased due to downsizing at the place where I work. I have a condition called parapsoriasis. It is mainly confined to my lower legs. There is no cure for it, it can only be managed with medication and the medication itself could eventually cause me to get something called T-cell lymphoma. So, for me, it is also a one-day-at-a-time thing.
Again, sorry for the misunderstanding and thank you so much for the valuable information you shared with me.
Tina
-
:) :) Thanks for the additional, valuable information you just wrote to me. I was in the midst of writing my previous post when it came in. Our posts crossed.
To answer your question, I don't know for sure where my friend had his CK treatment, but I would guess it was at Queen Elizabeth Hospital in Birmingham. I haven't asked him yet the name of the hospital, but I found it when I was Internet searching about the CK treatment and came upon a site showing CK locations. I was glad to find there is even one in my former hometown in the state of northern Indiana! The town where I was born (Ft. Wayne, Indiana). At Parkview Memorial Hospital, and it's the only facility in northern Indiana that has the CK treatment.
Tina
-
Well, I tried to reach my UK friend this afternoon but there was no answer. It was at about 4:00 PM, my time. 9:00 PM, his time. Maybe he had just gone to bed for the night. Hoping to reach him again sometime tomorrow or Tuesday. I really hope that he is okay. If he is still plagued with a lot of fatigue, then I would presume 9:00 isn't too early to turn in for the night. Maybe he will be going in to work early tomorrow.
Hoping for the best for him, as always.
Tina
-
???
I still wasn't able to reach my UK friend at home yesterday, either, by phone. I tried calling several times, always got his voice mail. Still no e-mail from him, either, in response to my voice message I left him when I called on Sunday.
I don't know what to think. Trying not to think the worst!
Thanks,
Tina
-
:) I gave it one more try this afternoon and I reached my UK friend at home!!! He is doing as well as possible, managing day by day, but of course, still has some mental confusion and great fatigue by day's end, especially after a day of being at work, managing his company. He is mostly bothered by the complete deafness in his right (AN) ear. He said he does have a buildup of earwax in that ear and thinks that might help a bit if it could get all cleared out. He is not adept at doing it my himself, he's tried but it only pushes it farther into his inner ear. His doctor knows of this. I suggested he have his ear doctor to that. He has had the deafness in that ear since last September (5 months before his diagnosis.) His doctor said he doesn't think his hearing will come back in that ear.
He also has balance issues. I asked him if he has heard of vestibular exercises. He said no. This was a surprise! It also shocked me that there is little to no communication between him and his doctor, on his own part. I tried to stress to him the importance of open communication between him and his doctor, that he needs to tell his doctor as much as he is telling me! He hardly talks to his doctor at all! It's been almost 5 weeks since his second CK treatment. When is it time to start vestibular exercises? I tried to explain to him how beneficial they can be for him. Can he start them even while still having fatigue?
He is back at work, some days he is there all day. It is on those days that he feels the most fatigue at day's end, of course.
So, I was so glad to have reached him today and that he is okay. He was at the office yesterday, that is why I was unable to reach him at home. I never call him at his office. He still believes he will be the way he is now, for the rest of his life. I told him I am trying to help him because I like him very much and I deeply care about him.
Oh yes, to Paul W --- he did have his CK treatment at Queen Elizabeth Hospital in Birmingham (UK.) He said it is a teaching hospital.
Life feels good. Just trying to get my guy friend to think that, too. But, as I told him, he will feel much better before too long. I will keep telling him this!
Thanks!
Tina
-
If your friend is deaf in one ear, and it is bugging him, he should look at getting a cros hearing aid or Baha. Both types of hearing aids help significantly with communication.
One thing I leaned recently is that getting a cros hearing aid, even if you are completely deaf on one side gives you some ability to pick up the direction of sound.. At first I thought this was impossible..
But the sound coming from the hearing aid is slightly different...allowing you to get back some direction of where sound is coming from...
There are a number of studies showing a significant improvement in quality of life when a hearing aid is fitted to a person who has lost their hearing on one side.
Assure your friend that he will feel a lot better. He will notice the difference over the next few months.
As for vestibular therapy.. Definitely worth doing something... Even regular walking is good... The vestibular exercises are great for some... Others find them too tedious
-
Thank you, PaulW for the hearing aid information. He is wearing a hearing aid, said it isn't helping at all. I will definitely tell him of the 2 types you mentioned. His knowing that he will feel better for it has got to help him get into a better frame of mind.
If he is still having the fatigue, is it too soon to start the vestibular exercises?
I would like to invite him to come here (Miami) for some R&R when his fatigue and other bothersome side effects dissipate. Hopefully, that could be by late this fall or around the Christmas and New Year's holidays later this year. Keeping my fingers crossed. He asked me, yesterday, how the weather is here these days.
Thanks so much for your help!
Tina
-
PaulW,
Another thing, can I put my friend in touch with you? Let me know.
Thanks,
Tina
-
PaulW, I messaged you about my AN friend.
Thanks,
Tina
-
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
-
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
-
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
-
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.
-
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.
-
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
-
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.
-
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.
-
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
-
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
-
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.
-
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
-
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
-
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
-
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
-
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.
-
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
-
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
-
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
-
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
-
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.
-
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.
-
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
-
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
-
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.
-
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
-
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
-
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
-
Well, since I haven't gotten any responses lately about the strange surgical procedure, it must be a very rare operation. This is the first I have heard of it. My friend hasn't said anything more about it, told me yesterday he is managing okay, taking things a day at a time. That, I think, is a little victory for him. It must have been a good day for him and maybe he won't need the operation. He is getting by without taking any more steroids, no medication as far as I know.
My friend has invited me to come visit him in the U.K. in September and I plan to go! He and I are very excited about meeting each other for the first time. I'm hoping the fact that I'm coming there soon will help him feel better and that he will have much better days ahead from here on. Next month should be time for his 6-month MRI, if they count from his first CK treatment of last February.
Hoping for the best for him.
Tina
-
I'm very curious to know, has anyone recovered well from CK radiation without taking the steroid medication more often than one session? My UK friend took the steroids for about a month last March-April, then had his second CK treatment in late April. He has since been suffering through nearly constant swelling of his tumor, yet he is not taking the steroids to help the swelling. What I'm trying to ask is, has anyone's tumor swelling gone down on its own and how long did it take? Didn't the long-term swelling cause any damage to other nerves close to the tumor? I really need to know, because I'm very concerned about him. Thanks so much!
Tina
-
My UK friend will have his 6-month MRI tomorrow, at last! Anxious to hear the results when he gets them. Hoping and praying it will be good news for him.
Tina
-
Hi Tina,
The first MRI at 6 months can certainly create a lot of anxiety, so be prepared for the likely results...
First of all small tumours in particular often show no sign of death (Necrosis). This is normal.
Seeing necrosis has no bearing on the eventual success of the treatment or not.
Secondly Tumours often swell.... So there is a very good chance the tumour will be bigger than when treated....
This is also completely normal....
So if the tumour is bigger and looks the same, don't panic, its all completely normal.
Keep the faith that 98% of all people treated with Cyberknife for non NF2 AN's need no further treatment at 5 Years.
If the tumour is small the odds are even better.
This is a long process and the 3 and 5 year MRI's probably better indicators of where its going.
-
Thank you so much for that information, Paul, which is so helpful to know. I've seen in a lot of patients' cases that it is more likely that no changes will be visible yet at the 6-month MRI -- that the only thing will be that the tumor is still swollen. I've continued to tell my friend what you had said earlier -- that 90% of the battle is a positive attitude. I think knowing that has helped him to some extent, yet he has also lapsed into bouts of despair, depression and feeling of hopelessness. He has been going through all this by himself all along, no family support and I don't know how much his friends know so they can offer support. I have continued to give him a lot of support from my end. He does feel excited over my coming to visit him 5 1/2 weeks from today, so that is keeping him in a positive frame of mind. He said he will be able to pick me up from the airport but won't be up yet to driving me around to show me the beautiful outskirts of his hometown of Birmingham, UK. Apparently, his driving is still limited due to the dizziness and vertigo, so I know his tumor is still swollen. To what extent right now, I don't know. At least we will have plenty of time to talk and get to know each other in person, at last.
He had his MRI with contrast. Do you know about how long it takes for the results to come back? I've already told him not to despair if there are no changes in the tumor, except continued swelling. I just hope he will believe me when I tell him the swelling and everything else is all normal. But, of course, I am hoping and praying for some good, encouraging news, for his sake. The stress of continuing to direct his own, large manufacturing company is overwhelming enough for him.
This visit to my friend in the UK will be the first time we will be able to meet, in person. So, this is a monumental time for both of us. It's also my first trip to Europe.
Thanks very much, again. You are a great help!!!
Tina
-
Hi Tina,
I had my last MRI on July 10 and the results were back on July 11. Swedish Medical Center in Seattle, Wa.
Hope this helps,
Rod
-
Thanks, Rodneyd. My friend said contrast would be used for his MRI. He said the contrast makes him nauseated. Does contrast affect how long it takes for the results to come in? How were the results of your MRI last month?
-
I forgot to mention my friend told me that he was also having a blood test done last week when he had his MRI checkup. Has anyone had to also have blood drawn when having their MRI checkup? Maybe this was being done for an unrelated medical issue. I don't know. I'm feeling concerned because I haven't heard from him since before his MRI. He did say that the contrast with the MRI makes him sick to his stomach.
Thanks,
Tina
-
I finally heard from my UK friend with his 6-month MRI results. As expected, his tumor is still swollen, and not yet showing signs of dying off. Can't get info. from him as to what size his tumor is right now. I was surprised that he said his doctors were surprised it's still swollen and not starting to die off yet, given how much time has passed since the CK treatment. And, he doesn't sound all that concerned about it. I can only think that maybe he still has some head wonkiness and some cognitive issues. Could that be the case? Or, maybe he's in denial?
Paul, I think it is interesting that you mentioned the smaller tumors are harder to deal with, or are slower to die off. I wonder why that is the case. My friend's was 1.7 cm at diagnosis last February. Thanks again for that latest post from you. Your posts are always very informative.
Thanks,
Tina
-
Tumours can swell for up to two years.. Sometimes more.
When the tumour receives radiation it can affect the blood vessels and the flow of blood through the tumour. The contrast dye which is in your blood lights up
If there is poor blood flow there will be a dark spot.
Poor blood flow may help the tumour die... But not necessarily.
Small tumours often show no change in consistency, chances of a successful treatment with radiation favours smaller tumours.
The main mechanism for tumour death is thought to be damage to the tumour cells DNA, and not blood flow.
-
Thank you, Paul, for that interesting information. Maybe that is why my friend had the blood test at the time of his MRI. I hope he doesn't need to go through any more CK treatments from here on. It looks like a watch-and-wait situation regarding the swelling now, and how long it will last. I think he has gotten used to it. He is so excited and happy about meeting and seeing me for the first time in another month, he doesn't seem bothered by the swelling at all. I'm happy to see that he is in such good spirits. He needs that. Many times I have reminded him of your advice that "90% of the battle is a positive attitude." The best advice anyone could receive! Thanks again very much!
Tina
-
Some people get a reaction to the gadolinium dye. In severe cases it causes the kidneys to fail.
People at risk are those with existing kidney disease. The blood test was probably to test kidney function. They won't give the dye to people who fail the blood test
-
Wouldn't a blood test be carried out well before the scan? Mine was.
-
Paul, that dye you mentioned, I'm assuming it's the contrast dye used for the MRI? My friend said it makes him sick to his stomach. So, he's had the contrast before.
It makes sense to me that the blood test would be taken before the MRI. The results come in in a day or so. Maybe the same day.
Thanks,
Tina
-
I'm happily anticipating the opportunity to meet my UK friend, soon. He has been feeling much better and I feel encouraged for him.
Tina
-
I continue to feel encouraged and happy for my U.K. friend, who is still doing rather well, yet does have periods of feeling tired and slowed down. Still, he is making it to the gym and getting good workouts done and he puts in long hours at his company. This is especially important, that he is "at the helm of his ship" and managing it well. Looking forward to seeing him next week when I travel to the UK to visit him, at long last! His AN is still swollen, but given the way he has been feeling these past couple of months, he is doing much better than I had thought he would be by this point, 5-7 months post-CK.
Anxious to see, in person, how he is doing and managing things. He did say his driving is still limited. It will be a big effort on his part to come to the airport to meet me, as it is a very far distance from his office and his home.
Have any post-CK patients felt at this level only 5-7 months post-treatment? And, it has stayed that way? I keep thinking maybe he is doing well because of the anticipation of my coming, then once the time together is over, the bubble could burst and he will be hit hard by the CK side effects again. I keep these thoughts to myself, of course. I know the side effects are known to come and go and can hit hard at times. But, don't they become less intense as time goes on?
Many thanks!
Tina
-
I'm happy for you that you are finally getting to meet your friend in person...you have been so dedicated to the friendship during his hard time. We should all be so lucky to have someone like you on our side. He is probably nervous about being at his best...and I can just share that at 10 months post radiation for me, I'm still not sure day to day how I'll feel. Sometimes I feel almost back to normal...then some days I still feel wiped out and just want to lay on the couch and watch television. The stress at work can make a big difference. So my advice is to be aware of the roller coaster energy levels and try not to plan to do too much. Go along with whatever he's the most comfortable with. Maybe you can help with some of the driving or help with meals, or do some sightseeing on your own, and just have a good time!
Looking forward to hearing about your trip...
Ruthie
-
Thanks, Ruth, for your reply to my last post. It is true, that he is nervous about being at his best. This would be true for anybody with an AN and being in this particular situation. It is a delicate one to be in. From him, I've learned to understand and respect the situation from his viewpoint. I do sometimes wonder if I'm making the trip too soon, but he himself asked me (back in early July) if I could come and I don't think he has regretted it. And, this was even before his 6-month MRI! I will make sure that he takes it easy, we already plan to just stay in town and rest and get to know each other in his environment, which will be more comfortable for him. We plan to fix meals together. His driving is limited, so we will have dinner out just once. Don't know if I can help with the driving, I have never been to Europe and it will feel so strange riding on the other side of the road! I won't be there long enough to do any sightseeing myself, but will be content to just hang out with him and relax and get to know him, and more about his AN. I can understand his work causes him tremendous stress, compounding the healing process all the more. I didn't think he would ever be able to have me over there as his guest, so this will be special for both of us.
Thanks again, it was really nice to hear from you.
Tina
-
It's not going well with my friend here in the UK. He has so many very complicated issues re: his side effects from the CK, continued swelling and needs a new procedure on the 30th, but is now plagued with a bad chest cold which he has to get over before the 30th. I feel I am in his way being here, yet he wanted me to come. I don't think it was a good idea for me to come, yet we had such a wonderful meeting at the airport when I arrived here only 2 days ago. Will be glad to go back home, and yet will also face some very bleak days and months ahead of me. I am in love with this guy and he told me he can't be the same way towards me. He is also plagued with very high blood pressure and OCD, issues I never was aware of, or I wouldn't have come, he is going through multitude of complicated personal and health issues, I feel I am in his way. He has the help and support of a lot of friends here in his hometown, which I was never aware of, so I don't understand why he wanted me to come!!! Why?????? Why?????? What a terrible disappointment and heartbreak to face after traveling so far and spending so much money to come here, yet he wanted me to come!!! He hardly responds to any support I am trying to offer. I am staying out of his way as much as possible. Can't wait to go back home, but he will be in my thoughts and prayers. So sorry I don't have a better update.
Tina
-
Tina,
I'm so sorry to hear your trip is not going well. I have been in similar situations, and as hard as it is, sometimes the reality of a situation is an important awareness to move on to the next chapter, whatever it is, for the both of you.
You have been a devoted friend and you should feel good about that. I'm sure you have helped him, but he is probably not in a position to appreciate it.
When I was 40 and recently divorced, I flew to South Korea (from Boston) to rendezvous with my high school sweetheart who had been a Navy Seal and stayed in the Navy as a career. It was a disaster. He was fat and lazy - had a secret Russian girlfriend. It was a total disaster. But I decided to do some sightseeing while I was there, and now I can say I've been to South Korea and can laugh about it with my friends.
I don't mean to make light of heartbreak...it's really hard...but if there's any way you can turn this trip around into some kind of adventure, I'm sure you'll have the support of all your friends...including all of us on the forum... your devotion to caring for someone with an AN is inspiring.
Keep shining your light...we need it!!
Ruth
-
Thanks, Ruth for your kind response. It is so appreciated.
It has been more than shocking for me to have such a heavy dose of reality hit me from behind. I had thought my guy was doing much better with his continued AN swelling. He hadn't told me of any complications in many weeks, almost 2 months. He was all set and greatly looking forward to my visit, which we both had anticipated for months. He told me that he has a brain tumor. I know AN's aren't actually brain tumors, or am I wrong about this? It was evident, rather early on, that he couldn't show any appreciation for my being there. Maybe the reality of my coming became more than he bargained for and when actually face-to-face with him, he couldn't handle it, feels very inadequate.
I have a terribly heavy heart back home from my first trip to the U.K. Yesterday morning, I did receive an e-mail from my guy (no, my UK friend, I think), hoping I had a good journey back home. Then, he apologized left and right for the way he acted during my time with him, thanked me for taking the time to come visit him, apologized for his health issues. He said that the most challenging issue for him was having someone in his house with him. He has lived alone in the large family home since his divorce 8 years ago. I was the first overnight guest in his house since his divorce, so I know now he couldn't deal with entertaining me. He also said that I have a true friend in him if I wish to maintain this relationship. I wonder what his definition of relationship is, because a relationship is deeper than a friendship.
If only he had told me of the blood pressure issue, that his chest cold wasn't better and if only he had told me of the upcoming procedure on the 30th, I would NOT have made the trip. I would have cancelled it or postponed it for another time. He doesn't know exactly what will go on during this procedure for the AN swelling, he said his doctors won't tell him, because they don't want to scare him. What in the world???
Thank you for your understanding. I really do need a lot of support regarding this and couldn't think of a better place to vent. My concentration level is not what it was before and I feel very emotionally battered and scarred. Now, I feel like I can't focus and enjoy anything.
Thanks,
Tina
-
With the dust still settling since my visit with the UK guy, I am still trying to come to grips about whether his actions towards me, his inability to realize the impact on me and his lack of appreciation for my being there, is mostly related to the swelling of his AN that still persists. It has him talking much more differently than before his treatments began in February. Plus, he had 2 separate treatments, 2 months apart. Most of all, I think the reality of my being there was something he found he was unable to cope with. After I got home, he said my being there in his house was his greatest challenge. I was the first person to stay at his house since his divorce 8 years ago. He has not yet gone through the "mystery" procedure that is supposed to help him with the swelling. He does not want to take steroids again.
My greatest challenge is going to try to recover emotionally and financially from making this trip so far away. It has been a huge loss for me in both those areas.
So, to everyone out there who suffered and is still suffering from cognitive and emotional issues due to swelling from their CK radiotherapies, my heart goes out to you all and I wish you all the very best in the challenges of your recoveries. You are all in my prayers.
I haven't been sure if I can send any more posts to the forum about this person, but I just wanted to say these few things.
Thank you. Wishing you all God speed.
Tina
-
It is been very tough going since my visit with my UK friend only a few weeks ago. It feels like it's been months since then. Knowing even less about him and how he is holding up feels like I know less about him, than ever before. It's as though he transformed into a different person the day after my arrival. He never let on to me (from the time I made my trip arrangements in July) that he was not feeling well. He was very much looking forward to my coming and our meeting for the first time. He was always counting down the weeks and the days, even the hours near the end.
The only crimp in my trip plans came from him when he told me, a week before my coming, that he was coming down with a cold, but he expected to be over it by the time I'd arrive on 9/18. Once there, he still had what he said was a chest cold, although he didn't sound like it, had no loss of his voice, he didn't even sound nasal. He just said because of his lowered resistance from the CK radiation, he got the cold and it takes him a while to recover from it. I am also surprised that he'd told me, in advance, that he feels the cold more easily (so do I, due to a couple of medications I take for thyroid and psoriasis conditions), and that he would put the heat on his house for us to keep warm.
Well, he put heat on only in his large solarium off the kitchen, a propane tank in a rolling cart for me to keep warm in there during the day while he went to work, or (on the weekend) when he went out for hours at a time to visit this doctor and that doctor for his cold and blood pressure, plus he visited friends, so to say, and was gone for many hours, leaving me to languish alone by myself in his huge house, locked up inside there with no way to get out. All doors were locked from the inside out and he had the only remote to disarm his elaborate alarm system and that couldn't be done until he'd get back home! Even all the doors to the bedrooms (except my little room he moved me to the 2nd night and the bathroom) were closed and locked, including even his room where I was the first night. There are cameras up by the ceilings in certain places in the halls and in the public rooms downstairs, and even a camera inside his bedroom! I couldn't go in there, like I could at first, to use the hairdryer he had for me to use at the vanity area in the bedroom. So, from my 3rd morning on, he dragged out a long extension cord for me to have to use between my little room and the bathroom and use that dryer in the bathroom.
I surely wish I knew what was going on in this guy's mind the time I was there with him. We never did anything together over the weekend like he'd said we would do. He had specifically wanted me to be there over the weekend so that he would have time for going out and doing t things together, plus he'd take some time off from work on Monday to spend with me. This never happened, except for that one dinner out with him on Sunday evening.
He still has his tumor swelling and side effects due to it. He is desperate to get back to good health, seems he is not at all patient about the time it's taking. I wish he could just have some faith and believe that everything will turn out okay for him with the swelling, but he's gotten himself all up in a big tizzy, to where even his blood pressure has shot up dangerously high. My heart goes out to him and I 've found myself in a position where I can't help him at all, whereas I thought I was helping him this past spring and throughout the summer. He told me he appreciated my help and concern. He told me he appreciated that I cared about him.
I'm having a lot of trouble dealing with all this and trying to put this puzzle together. Could this all be just head wonkiness for him? I hope so, because then he will recover from that in the next months, or many months, maybe 1-2 years, and be back to his old self, the guy I knew to be himself last winter before his CK treatments.
Does any guy here have some understanding about my friend, from a male perspective? Would appreciate any comments and help anyone out there could offer me. By the way, my friend still has not gone through the certain surgical procedure to help with the incessant swelling. Being with him, though, as active as he was (even going to the gym almost e very morning and working out for an hour), it was hard to believe that he has an acoustic neuroma at all!
Many thanks! Hoping for some responses,
Tina
-
Hi Tina,
From what you have said on the forum, I know you are in love with him, or at least feeling like he desperately needs your support. You had high expectations of your trip, and he did nothing to dissuade them. But from his behavior (especially locking you into the house and leaving you there alone for hours) it is my male perspective that this guy is not for you. That is not normal behavior by any stretch of the imagination (M or F) but he may have been sending you a less than subliminal message that he really doesn't care for you. His hours away from you while you were there is another indication of his lack of concern about you and your relationship with him.
It is possible that he felt no chemistry with you (this can't be determined over the internet or on the phone). His excuse about having a cold and AN swelling may just be a convenient way for him to avoid you. His lying about other physical conditions such as high blood pressure and OCD was inexcusable when it was so financially draining on you to make the trip.
The cameras in strategic locations throughout his house is creepy, especially the one in his bedroom. To me, there is only one reason for this camera and it doesn't have anything to do with security, if you get my drift.
Why didn't he take you with him when he went to his doctors visits? Why didn't he take you with him to visit friends? Why didn't he take off from work on Monday as he had promised? This sounds like he has something to hide (a gf perhaps?). To leave you alone while he went off is really insulting behavior and totally inexcusable.
As painful as this is, my thought is that you should cut all ties with him and move on with a productive life here in the US.
Sorry for being a wet blanket, but his behavior towards you, not his words, are the most important gage of his intentions. And I think they were really unacceptable, and from what you wrote, I think that deep down, you feel that way as well.
Rod
-
Thank you, Rodneyd, for your detailed response to my last post. I agree with everything you said. This guy has all sorts of serious, personal issues which I believe he will never deal with and get addressed. I don't think he believes he has a problem at all.
I was a little impressed, though, with his sharing with me early this week, that he now knows how bad it was for me being cooped up in his house all those hours over the whole weekend, and he doesn't feel proud at all over how bad it was for me alone in his house, whereas we were supposed to go out and do things together. He chose to work all day on the Monday I was there (my last full day there) instead of taking some of the time off for us to spend together, as he had told me we'd do. Instead, I was cooped up in there all day, as well, until he got home about 6:15 that evening. I had gone mad in that place that day, after a while I was screaming bloody murder, but no one was there to even hear me. I was confined to the large solarium(sunroom), a glass-enclosed room off the kitchen, to keep warm and in there he had a propane tank inside a wheeled cart to put out heat for me to keep warm. He never put the heat on in his house to keep us both warm during my time there. He had told me, prior to my coming, that he would have the heat on because due to his CK radiation, he feels the cold more easily, as I do because of Methotrexate oral chemotherapy I have to take for the parapsoriasis condition I have on my legs. He has been aware of my condition for a long while. I didn't keep anything about me from him, I was always open and honest with him.
Despite his saying (that fateful night when I got banished to the guest room (no camera in there), that he had the "mystery" procedure coming up on Sept. 30th for the AN swelling, and his stress over trying to get over the chest cold he had developed just prior to my coming, he still has not had this procedure done! That all is still up in the air and I wonder if he really was scheduled for that procedure for the 30th. And, I wonder if he will ever have it done, or is this something he made up on his own? Guess I will never know. Well, the camera that is up on the wall near the ceiling in his room, certainly would show that he doesn't have anything to crow about that first night I was with him in his room. It actually shows an encounter that looks more like my being raped! And, I still have bruises on my legs that show it. Since last week, I have developed hip pain on my right side. Never have had this pain before in my life and although I have osteopenia, it is not enough to concern my doctor. My bones are still in good shape. There are cameras set up in the downstairs rooms and hallways on both floors, so it's not only his room that has one in there.
I had a huge fight with him this week, a flurry of e-mails we exchanged where I confronted him about this and that, desperately trying to get answers to things he told me there, but gave no explanation. Finally, I got a confession from him about why he had moved me out of his room after the first night with him, and that being that he still has not been able to move on since his divorce of 8 years ago, that he can't let go of the memories he has of the blissful 25-year marriage he had. He is of Indian descent, married an Indian woman 3 years younger than he back in 1980 and he was madly in love with her and felt guilty having me in the room they shared together. He said I am the first woman who has been in the house with him since his divorce, except for his son and daughter who are grown and on their own. He also said he is not looking to get involved in any more romances, but if he does end up settling down someday, it would be with an Indian woman younger than he, "in his age group, as he said." This made me feel very old (I'm 62 and he just turned 57) and I told him how this made me feel. He apologized, said that in his culture, men settle down with women 3-8 years younger than they are. He said he embraces his Indian culture and always was, so he has decided we are not compatible, said we both have vastly different outlooks. I hadn't done or said anything that would lead him to come to this conclusion! Plus, way back in the beginning o our relationship, I brought up the matter of our age difference and he told me it didn't matter to him. I also told him this week that if our relationship had become much stronger, I would have planned to learn all about his culture, learn the language (which he speaks in addition to English) and even relocate to the UK to be with him He scoffed at this!
In our e-mails this week, I kept asking him WHY did he invite me to come visit him if he still has his ex-wife and blissful marriage on his mind so much. Man, she left him 8 years ago, had strayed from him with another guy, her personality had changed and he didn't know her anymore, didn't trust her anymore! He didn't contest the divorce because he'd lost all his trust in her. I have the e-mail from him (of last March 4th) in which he explained everything about his marriage, what the ex did and what the contentious divorce was like, that it went on for a year and she got almost all his wealth in the end. He was left with almost nothing and had to start again and rebuild his life, financially, learn to live in the huge family home by himself, manage the place all himself. I don't know how he does it now, especially with the AN and CK side effects that persist. And, here he is now, can't get her out of his mind. By the way, he is British-born, raised and educated there and has lived all his life in the UK.
I can't help think that a lot of this from him is indicative of perhaps, severe cognitive behavior on his part, due to the continued swelling of his AN and he is at the point where he believes it will be like this for the rest of his life. He actually told me he has a brain tumor! I know enough about AN's now to be aware that an AN is not actually a brain tumor, but he apparently has become what he believes. He believes he will die from this tumor. If that is the case, then he is going to have to paddle his own canoe from her on, because any attempts on my part to tell him otherwise, and to help him with encouragement, would fall on deaf ears.
It's a dreadful situation, one I couldn't have imagined would ever play out this way! I don't know how he manages to get up extra early in the mornings, go to the gym and work out for at least an hour, then put in a full day at work as a director of his own manufacturing company! I think since he had a second round of CK radiation last April, he would be having another MRI (3 months after the one in August) this month. I guess it will probably show the same results as the one done in August.
This whole thing has left me feeling so drained, my life turned upside down, can't get myself to work on time most days and I have difficulty concentrating, getting things done for myself. I live alone, too, have been since my husband died in 1993.
Thanks again so much for your comments and concerns. I so appreciate it.
Tina
-
Hi Tina,
Glad that you thought my response was helpful. It has clearly been a very difficult ordeal for you, and one that has caused you much anxiety and stress.
As I said in my previous email, ACTIONS speak louder than words. He was exceedingly controlling and his behavior was totally unacceptable. No amount of words now can make up for what he did to you then. And I don't believe it was because of his divorce 8 years prior. He has had ample time to deal with those issues. And how do you know you are the only woman he has had in his house since then? What is the camera in his bedroom for if you are the first one? What he is telling you doesn't pass the "smell test".
If you don't mind one more thought, it might be for the best if you broke off contact with him entirely. I do not believe he will ever change, no matter what he tells you. The distance between you should make it somewhat easier to do this. Please don't let his illness become an excuse for his behavior, in my view, it was unacceptable, no matter what.
Good luck in your future endeavors, whatever they may be. Let us know how this all turns out.
Rod
-
Thanks Rodneyed, for your latest response. I have to confess, I don't know what "smell test" means.
My friend lives in a very wealthy part of town, said the houses on his street are the most expensive in the city. He said he had to have the security system in his house installed because it is required of everyone in the area to have it done, as there were 6 armed robberies in his neighborhood recently. I got to take a walk around the block my last evening there and saw homes that were much larger and more expensive-looking than his large, 4-bedroom house. It has 2 large remote-controlled gates out front, and high fencing all around. Also, a very large garden in the back, what is known to us as a backyard.
I think he is paranoid. I told him he has made himself a prisoner in his own home, with the security system the way it is. He agreed with me. Even a beeper-type sound goes off as one passes from room to room.
-
Hi Tina,
FYI, the "smell test" means that I don't think what he is telling you is the truth and it smells like something rotten.
Don't get me wrong, having the cameras around is not the worst thing that was involved with your trip. However, treating you the way he treated you was horrific and, if it were me, I would have nothing more to do with him. But I am not a woman and it is not me, so obviously, it is entirely up to you what you do with this situation.
Remember, ACTIONS speak louder than words and in my opinion his ACTIONS were unconscionable.
Good luck!
Rod
-
Hi Tina,
Sorry to butt in, but I totally agree with Rod -- you would be much better off if you forget about your friend.
There are so many things about the way he acts that just don't sound right. it appears that you're driving yourself crazy trying to rationalize his actions,which don't seem to make any sense.
Take care,
Keith
-
Thanks, Rod and Keith, so much appreciated. I'm glad to get a male perspective on all this. It's just what I need to help steer me in the direction of what you are suggesting I do. And, I have been trying to rationalize his actions, especially since he said his CK effects changed his outlook so much. In e-mails with him back last early spring, his e-mails sounded very much that way. When he wrote me in early April and said he couldn't continue the relationship and wanted me to look elsewhere for love and happiness, I never could get him to tell me what happened to cause him to say this. It was so shocking as he had, just days earlier, told me he would be coming here to visit me.
When I decided to find out all I could about his condition and all it entails, then I made calls to him to give him support and encouragement after learning about AN's, that was about 6-7weeks after his shocking e-mail. He appreciated my doing that, said he hoped he could do something nice for me someday. It brought him back to me. And, eventually led to his inviting me to come visit him there, as he can't get medical clearance yet from his doctor to travel. His driving is still limited due to the continued swelling and it causing him the dizziness and vertigo. I have tried to sort all that out.
Tina
-
Hi Tina,
You still seem confused as to whether you want to continue your one-sided relationship with your UK friend. Since I am an engineer, I like to list concerns for consideration. Please consider the following as you struggle with your decision.
1. I don't think I have ever intimated that you were in any way wrong in your actions to support a "friend" who is suffering from a debilitating condition. You seem like a warm, caring, person, who only wants to help.
2. But, your "friend" seems to have been sending you mixed messages all along. Sometimes he ignores you, sometimes he tells you he can't be your friend and sometimes he thanks you and tells you how important you are. But, in general, from what you have said, I think he has been pretty clear that you will not be a part of his life.
3. He allowed you, at great financial hardship, to come and visit him.
4. He sexually used you on the first night (as you indicated, your "intimate" relationship was more like a rape, and you had the bruises on your legs to prove it).
5. Then you were summarily moved out into the solarium, where you were provided minimal heat and kept locked up like a virtual prisoner.
6. He forced you to stay in another bedroom for the duration of your visit.
7. He left you alone for hours on both Saturday and Sunday while he visited his doctor and his friends and kept you locked in his house like a prisoner while he did so.
8. He broke his promise to take Monday off to be with you.
9. Now he is trying to justify his (In My Opinion) outrageous and totally unacceptable behavior towards you.
10. I don't, for even one second, buy his story about having the video camera in his bedroom for security purposes. He might have some outside the home for security, but not in his bedroom.
Actions speak louder than words and I would be very leery of anything he tells you.
I truly hope you can see what Keith and I have been telling you and that you break off this one-sided relationship and move on with your life.
Good luck, Tina, and God bless you as you move forward.
Rod
-
Thank you, Rod, for all that you wrote. I totally agree with what you said, too. What a coincidence that the UK guy is also en engineer, runs a manufacturing company that makes construction products. The guy isn't writing to me anymore and neither am I. It's very tough, though, to try and go on from what certainly sounded like a promising relationship. It has defined this entire year for me.
I lost a very close boyfriend 5 years ago to heart disease. He passed away suddenly after our having a 4+---year relationship that we both wanted to have end up in marriage. I got over this man after I met the UK guy and got to know him and feel more comfortable with him. I don't believe the UK guy telling me he can't move on since his divorce from the love of his life 8 years ago. Especially since I (accidentally) found out he is back on the same dating site on which we both met!!! And, he had also told me, that fateful night I was banished to the guest room, he is not looking for any relationships in the future, due to his believing he doesn't have it in him to sustain one.
I pray every day to have the strength to go on and get through each day as best I can. I am going through a massive loss all over again for the 3rd time (first was when my husband died in '93).
Feeling awfully tired and have been having too many heart palpitations since the big fight with this snake last week. I have a heart murmur.
Can't thank you enough for all that you've taken the time to write to me here. The same goes to Keith, too.
I do feel very embarrassed over all that has been said here, with it being on a public forum. Terrible.
Tina
-
I don't see what any of this has to do with AN's at this point. Actually, that point was reached a long time ago, if it ever had anything to do with AN's.
-
I agree with that.
Thank you.
Tina
-
Wait, this HAS been about an AN!!! A 56-year-old man being diagnosed with a 1.7 cm AN early this year and was treated with Cyber Knife on 2 different occasions, 2 months apart. He has had the full dose of CK, so he can't have any more.
On many occasions, I have wondered if he has been afflicted with symptoms of serious cognitive behavior due to those treatments! He has not been the person I first knew, since those 2 treatment sessions 2 months apart. His AN is still swollen since before his 6-month MRI in August and he is unable to tolerate the symptoms. His driving is still limited. Knowing him in person now, I have seen he is a very sensitive person whose tolerance level of this affliction is not what he wishes it would be.
I can only hope and pray, for his sake, that the swelling starts to go down in the near future.
I wanted to do what I could to help him in some way, because I cared about him. So, I took it upon myself to learn all I could about AN's and all they entail. Through my posts, I have learned a wealth of information through this discussion forum. It was suggested to me last spring, by the ANA, to join the forum, for this purpose.
Thanks to all who have helped me by posting a lot of valuable information on my thread. This has been an unforgettable and positive experience for me and the guy in the UK has thanked me, as well, for my help and support. It's too bad, but it is his loss that I will be unable to help him anymore.
Tina
-
Hi Tina,
I agree with ANGuy that the situation with you and your "friend" has transcended this discussion forum in that it is no longer about his AN, but more about your relationship and expectations.
It might be worthwhile to continue our discussion on a different forum. If you like, please PM me here and we will see what works best.
Rod
-
I didn't think I would send any more posts on my thread, but aside from my ex-friend who has still been dogged with side effects and swelling from his 2 CK treatments 2 months apart (and not taking it very well), he did say something to me during my visit ----- that he has a brain tumor.
I wondered why he would think he has an actual brain tumor. I never asked him about this. But, have thought about it since my return from the UK.
I'm doing okay now, by the way. Thanks, Rod, for your input and help, although I wish you could have pm'd me with that very strong advice and comments, given the confidentiality of the matter.
Isn't an acoustic neuroma a tumor that is located on a nerve leading to the brain? That has been my understanding all along. What I'm trying to find out is, can an acoustic neuroma also be an actual brain tumor? That would mean it would have to be on the brain itself, as far as I can tell.
Has anyone's acoustic neuroma also become a brain tumor and if so, what has your journey been like???
I never knew what an acoustic neuroma is until I met that guy. Even though I'm not in contact with him anymore (I had a big fight with him), my desire to learn more about acoustic neuromas hasn't left me.
Many thanks,
Tina
-
Hello,
It's been a while since I last posted to this site. I have continued to keep up with the many posts on here, I'm still interested in keeping up to date on AN's and how they affect people who have them.
I wish I could report something new and positive about my old friend in Great Britain, who was diagnosed with his AN in December 2013. We don't communicate anymore, but it has pained me a lot, knowing how much he's been emotionally and mentally affected by his AN. I believe he has some memory loss from his tumor, as well. To be affected this way must be the most challenging issue any AN patient has to deal with. I know it's been exceptionally difficult for this guy, given his particular line of work.
I know now that the way my visit with him went, last fall, was due only to his tumor and the many issues he had not yet been able to deal with.
My prayers continue for this poor guy. He had a big, positive impact on my life. A nice relationship that started between us a year ago was shattered by this tumor and the way he has been affected by his 2 separate CK treatments, 2 months apart. His first CK treatment began almost a year ago now. His tumor started out at 1.7 cm in size. As far as I know, the tumor is still swollen. When I visited him, he told me he refused to take the steroids again. He believes he will die from this thing. I feel terrible, and depressed, over my failed attempts to comfort and reassure him that there is a lot to hope for ahead of him. I learned that from this site, and I thank those here who shared so much of the positive information I was happy to pass on to him, to help better his days. He is only 57 years old, still a young man.
Thanks again to you all. I send my best wishes to everyone still experiencing their AN challenges and I wish you well.
Tina
-
Hi Tina:
I'm touched by your email about your "old great friend in Great Britain." It's true that these tumors touch everyone around us not just the "owner." Keep sending your hopeful message because it will seep-in the cracks of his unhappiness and it will help him.
You're a lovely valentine to all of us today. Kiss yourself for us!
Love,
Michelle
-
Thank you for your heartfelt response, Michelle. It really lifted my spirits. And, you're the patient. It sounds like you have been going through a lot yourself since your surgery only 6 1/2 months ago. But, it seems that you are doing well. A sense of humor can do wonders. That, plus a positive attitude.
I only wish my former friend could have the same attitude as yours. I always kept Paul W's advice in mind, that 90% of the battle is a positive attitude. I often told my friend this advice. I think that by the time we visited for the first time, he had lost a lot of confidence in himself and his sense of humor. To witness this in person was quite different for me than what I could envision from his e-mails and phone conversations prior to my going over there. It was downright shocking.
While there, I noticed whenever he used his i-Phone to take calls or make calls, I could see something extending from below the phone. I don't know if it was an extra hearing aid of some sort, but it shows up in pictures I took of him using the phone. Also, he said he refused to take the steroids anymore. He had taken them for about a month last spring. I asked him, last August, what size his tumor was after he had his 6-month MRI and he wouldn't tell me. I can't imagine why.
How is your facial paralysis by now? My former friend didn't want to have the surgery, fearing facial paralysis. I sometimes wonder if his doctor(s) who did the CK treatments are very experienced at this because before his treatment began last February, he thought it all would be just a piece of cake and the tumor would shrink, no problem, and he'd be done with it all. He wasn't prepared for what lay ahead of him in the way of possible side effects after treatment, but I remember he was scared before his treatments began. I guess, who wouldn't be? He did say he may be absent from work for a while. He has the kind of work that doesn't make it possible for him to miss work for long (owner and manager of a manufacturing company). Also, he's a mechanical engineer.
So, I can imagine how stressful it has been for him, all this time, to still have the tumor swelling. It appears he wasn't prepared for how long this could take. It would help him a great deal if he had the positive attitude that you have. And, laughter is the best medicine.
So, he does need lots of prayers and I pray for him every day. That's the best I can do for him.
Take care and I hope your healing is going well. God's blessings to you.
All my best wishes,
Tina
-
Michelle (Mimispree),
I sent you a personal message. Hope you received it.
photog1
(Tina)
-
I haven't posted here in a while, but continue to be touched by the number of viewings of my posts regarding my old English friend who, as far as I know, still suffers from swelling of his AN, more than a year after his second round of CK treatments. It is a most unusual story about his ordeal, going from a confident director of a family-owned company to a man who has become very unsure of himself and has lost a lot of his self confidence. He is a very emotional person to begin with. He greatly appreciated my learning all about AN's and what they entail, through reading the many postings on this discussion forum. All was okay for several months after that, then my traveling to the UK to visit him changed things for the worse in ways I can't put into words. We haven't been in touch in months, so I don't know his current status. He doesn't want contact with me anymore. Can't understand or explain why. He's a very complicated and complex person. I can only pray for him to have a good recovery and, in time, be back to his old self, if that is possible. For his sake, I hope it is possible.
It has been an extremely difficult ordeal for me, as well. It has sapped a lot of energy from me and I am trying to channel my interests in other ways.
I wish the best for you all. God Bless You.
-
Hi Tina,
Was wondering how you were doing since this past Feb; good that you're attempting to channel your energy in other ways.
Take care
-
Thank you, ampeep. I don't know exactly how to say this, but although I don't have an AN myself, I've found how much a person, who is close to an AN patient, can be adversely affected by that person, because of the tumor. His tumor has affected me as much as it has affected him. As I've seen it written here, no one asks to have this tumor. I can't imagine what it must be like to be afflicted with that, also how difficult it must be for someone who is alone and still needs to go to work, plus manage things alone at home. He did those things rather well, from what I saw during my visit last fall, but he just couldn't travel places, drive his car much except in town. He wished, desperately, that he could take a vacation from work, and probably also escape from his affliction.
I'll always wonder why his doctors told him, in early April last year, that he could not travel for the rest of last year. He was to travel here for us to meet in person for the first time, he was looking forward to it, then he got that news from the doctors. He wrote to me, told me he was shattered. That is why I was the one who traveled to the UK, instead.
-
photog1,
For someone who doesn't have AN, you must know a whole lot more than most people about this condition! It's weird that his doctors told him he couldn't travel. I've been on many trips pre- and post- GK that have involved plane rides of 10+ hours.
I think that you've done all that you can for your friend; you should do what's best for you. This thread has been interesting in terms of how people deal with AN.
-
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?
-
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.
-
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.
-
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
-
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.
-
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