My Cyber Knife Adventure

[notaclone13]

Hi Gary,

That's interesting about the MRI and research project.  So glad you are participating and will give us all the scoop on what they are doing and looking at. I spoke to a scientist friend this week who does research on acoustic neuromas. I asked him if he had heard about mifepristone as a potential drug therapy for acoustic neuromas but he was not familiar with Dr. Stankovic's paper.  Hope they get the money to do the clinical trial soon.  My friend believes that growth of these tumors may be due to more than one faulty pathway.  He did mention that they are considered very low grade tumors and thus non-malignant and usually non agressive. Let's hope that is the case for all of ours.

[gary.s]

On Friday, May 18, I had a one month post Cyber Knife MRI done in order to establish a baseline for my AN. Yesterday, I met with the radiologist to discuss the results of the test. Although I was not overly excited about another MRI with contrast, I have been curious to see what is going on in my brain after CK. He showed me the MRI images, and the tumor looks exactly the same in size as it did before radiation. There is no brain swelling, and areas such as the brain stem that could potentially suffer collateral damage from radiation, appear totally normal. Needless to say, I am grateful and relieved.

We also discussed my various symptoms which are essentially the same as they were prior to CK. He was interested if my hearing was better, and I told him that it is still non-functional. Better or worse, it is hard to tell. The doctor was very happy with the way things are going, and he kept telling me that the CK procedure is definitive with 95% of the patients. He said I should go live my life, enjoy the summer and to stop worrying. So that is what I will do.

Gary

[notaclone13]

That's great news Gary.  I am so happy to hear you are doing well and hopefully can put all this behind you (except for occasional MRIs of course.)  Did he mention when you should get your next MRI?  I am thinking from here on you can opt to skip the contrast.  Did you ask if that would be OK? 

[Abetpds]

Hi I've been reading all the posts and am so happy for your success with Ck  Unfortunately at 3cm, and tumor pressing on the brain stem, Gk or CK is out of the question for me.  I am 70 and wish I did not have to cut my head open --but I've decided to do it since tumor has grown. Surgery with Friedman/Schwartz on 6/26  in San Diego.  Take care.

[gary.s]

I will take another MRI in six months from now, and I assume it will be with contrast. I think the contrast is necessary, but I can inquire. Whenever I have asked about contrast, the doctors tell me it is essential to see the tumor. I have seen the MRI's with and without, and there is a real difference with the contrast. Since I will want the best images to know how things are going, I won't
disagree with what the doctors want. And yes, Notaclone13, I can put it behind me, until I take my next MRI.

I am sorry to hear that you will require surgery Abetpds. The doctors at San Diego are some of the best, so you are in good hands. There really is nothing we can do when that tumor starts growing. I was in the same place, watch and wait for over one year with nothing happening. Then it started growing real fast and I just had to make a decision to take care of it. The best of luck to you during surgery and in the future.

[gary.s]

It has now been six weeks since my Cyber Knife treatment, and it seems like a faded dream. All of my old symptoms such as non-functional hearing in my AN ear, facial numbness and a lack of taste still exist and have not changed. The only new symptom is a tingling sensation on areas of my scalp where the radiation zapped me. It feels like a sunburn and the skin is very sensitive. I am wearing a hat whenever I go outside, so hopefully that will help.

My hearing loss is a real bummer. Identifying where a sound is coming from is difficult, since I am almost totally deaf on the right side due to my AN. At times I have to turn around 360 degrees to locate a bird chirping or a car driving by. If someone is talking to me on my right side, I only hear a mumbling sound and cannot differentiate any of the words. Foreign accents are a real hassle, they seem to fatigue me real fast. Of course loud restaurants have become something I cannot tolerate, especially if loud noises occur like clanking dishes. I am not really complaining, just trying to deal with my new normal and make the necessary adjustments so I can be a functional AN person.

Gary

[SP]

hi Gary,
it's for sure a journey of adjustments. I am bummed about my significant hearing loss too...esp since my hearing was perfect on the an side before CK. I have had a hearing aid fitted and that helps especially in noisy cafes and resteraunts. its still early days,I think it's pretty normal to feel a bit down about some of the effects of this AN and the CK treatment... it takes some time to adjust and find ways to manage the new normal. some things will get better over time...some will just be.

I wish you a successful recovery

Stella

[gary.s]

Thanks for your words of encouragement Stella. Now that I am done with CK treatment and not worried about that anymore, I guess my focus is on dealing with symptoms. The most outstanding symptom for me is the single sided deafness. I am learning to cope with it and adjust to the changes it presents.

I am sorry that you suffered hearing loss after CK. I had very little hearing on the AN side prior to CK, so I did not expect anything different after CK. I will see my neurotology doctor next month to discuss my hearing issues. He was part of my CK team, and I am sure he will recommend a hearing aid for my good ear.

I hope you are doing well Stella, and thanks for wishing me a successful recovery. Be well,

Gary

[Gtmochi]

Hi Gary,

Though I am not SSD on my AN side, the mild hearing loss I have had has been an adjustment, and I anticipate there will be more of it.  It's so crappy (I can't think of a better word! Because that's what it is!) that is what happens to most of us with ANs! I hope that your Neruotology doctor does help, and that in time things become less of a trial hearing-wise.

Stella's encouragement is so lovely! It heartened me too. So thank you for that!

Hope you are both doing well and wish you both a healthful journey!

Jessica

[gary.s]

Hi Jessica,

I think it is inevitable that we will all suffer some kind of hearing loss. The doctors on my team stated that 50% of AN patients will have some hearing loss within five years, and that another 50% of those remaining will have hearing loss at the ten year mark and so on. The outlook is not good for most of us.

I am trying desperately to favor my good ear by wearing ear protection when using power tools, including the vacuum cleaner. After years of loud rock and roll, in addition to many other hearing abuses like chainsaws, it is time to be proactive and take care of my remaining hearing. I agree with you, it is crappy, but we learn to adjust and go on with our lives. I hope you are doing well Jessica, I am at seven weeks post CK and you are at six. Take care,


Gary

[juliawilson]

Gary, I had CyberKnife surgery in March, 2017, at Stanford. My AN was originally flagged because of steep hearing loss in my right ear. So, after treatment, I was concerned how much and how rapidly I would lose hearing. Eight months afterward I had a hearing test and was relieved to see that I had not lost much at all. The audiologist emphasized that I still had functional hearing in that ear and would benefit from a hearing aid. I got mine earlier this year, and it has made a big difference. I feel much more confident with it plugged in--I know where sound is coming from. As you know, that's a big deal! While it helps in conversation, a hearing aid does not do much for clarity. So, what was 'wah-wah' without the hearing aid, is now 'WAH-WAH.' Still, I would urge you and others to consider whether an HA would help. I wish you the best in your continuing journey.

[Gtmochi]

Hi Gary,

I think you are right about losing hearing in some way - when I asked my doctors about it they shared numbers I 100% don't remember (ha!) but the net-net was, there is a good chance of some (if not all) hearing loss...at some point.  Sigh. Your info was super helpful and more concrete! Thank you.  I have been protecting my good ear too! It's a good idea .

As for how 6 weeks post CK are looking for me...pretty ok! I mean. I am hedging my bets by saying that ;-).  I am superstitious - so saying I'm good makes me nervous I'll  jinx myself. But the truth is that I feel as well as I did before CK, and even in December and January (right before diagnosis). I had so few symptoms at that time - I was blissfully unaware of my dumb old AN, and so was not overly concerned about the weird TMJ feelings I was having - I blamed them on a messed-up night guard! For me, it was tinnitus followed shortly thereafter by a full ear that got me to go see an ENT - and then we discovered a slight hearing loss and the cruddy AN. For now, like you, treatment feels like it is ancient history. I am doing my best to move forward and to pretend all is well and sort of ignore any physical symptoms that aren't any worse than what I have already experienced.

I really like JuliaWilson's advice  (hello,  fellow Stanford patient!)- maybe at the 6 month MRI looking into HAs is a good idea! I know your AN ear is moot, but if you are worried about your other ear, maybe it will be a help .

I hope you are doing great and continue to have a smooth recovery and good health!

Jessica

[gary.s]

Thanks for posting Juliawilson. It really helps to find out how other folks are dealing with similar issues, especially after CyberKnife. I find that it is becoming more and more necessary to enhance my hearing in some fashion, and hopefully hearing aid/s can help. It sounds from your comments that they are helping you. So once I see the hearing doctor in late July, we can determine what kind of hearing aid would work for me. Thanks for your advice, and the best to you also.

I am doing okay Jessica. Back to hiking, riding a bike, and of course riding horses again. No real balance issues, headaches are minimal and doing my best also to move forward. All is good and things really are just kinda normal, well AN normal anyways. I am glad to hear that you are doing okay. Be well.

Gary

[SP]

Hi Gary,

Thanks for your kind understanding. Hearing loss was somewhat anticipated as Dr Chang explained it, still tricky to deal with considering.... but like all these pre and post CK symptoms, "it is what it is" and I'm grateful that the technology was there for me.

Jessica- you're welcome!!, and i am heartened that you and Gary (and many others) share so openly on this forum, it really helps to have people that understand me too.

moving forward successfully with our version of normal 

Stella

[gary.s]

I am now two months post Cyber Knife and feeling pretty good. I decided to test myself, so this past week I took a road trip to Sedona, AZ with my wife. Sedona is about 225 miles from where we live, and I wanted to see if I could focus and concentrate when driving that distance. I drove for three hours on some very curving roads with several S curves. I did not get dizzy, or feel a lack of concentration at all. The driving was the same way it has always been, enjoyable and focused.

Now when it came to hiking, I did not do as well. Sedona has very high mountains with some steep hiking trails. If I kept my eyes on the trail, I was fine. If I looked up at the steep cliffs, or down the deep washes when I was in motion, the dizziness hit me. If I stopped moving, I had no problem looking up at the mountain tops. We have hiked in Sedona for many years, and this is the first time I felt dizzy. I figure it is the result of the CK and what is happening to my zapped tumor. So this is something to work on, being in motion and looking up towards the sky. Maybe with practice I can get rid of the dizzy feeling. Regardless, it was a wonderful trip.

Gary