Am I a Whimp?

[proudmomof3]

I do not like to complain. There are so many of you who have been through so much worse than just a measly little Gamma Knife. But, could I ask a few questions?

I am sooooo dizzy, non-stop. My poor husband went to CVS and bought me a walking stick. Ok, I just turned 40 , have 3 small kids, and have a body right now of a 90 year old. It has been almost 2 weeks past GK and I still can't drive. I called the dr. He is out of the country (suspicious??) LOL

So, I am extremely embarrassed to use this cane, but maybe I should instead of taking a fall. That would not help my situation.

Does anyone know about extreme dizziness after GK? I was dizzy before, but it is MUCH worse. Spinning all day when I'm up. Not a good feeling. Also, I can hardly taste anything. Even toothpaste. Too weird! Didn't have that before either. Yet it isn't stopping me from eating, which would be nice as I could stand to lose a lot of weight.

Sorry if I sound like a whiner. This was not written in my "exit' papers from the surgery center. I wonder why? I know EVERYONE is different, and has different results. That is why I love this forum. Many varied views/opinions. I am just so clueless as to why every day something new happens to my body, just b/c of a dose of radiation?

Thanks for listening (if you got this far!!!!!)

Cheryl

PS - Thanks so much everyone for your responses. I am so glad I found everyone here. No one else seems to "get it". I'm glad I have somewhere to vent. I hope I can one day be helpful to you guys here as well.

[jaylogs]

Hi Cheryl!! No, you are not a wimp!! Never ever think that!  Every person reacts to all these procedures in different ways...take me for example.  I had a "simple" BAHA implant done, yet it turned into a major thing.  Not very common, but it happens.  So we just try to get through these things as best we can, and sometimes (as I have learned) one must cast aside our vanities for the sake of safety and health.  Hang in there, it'll get better and that lil bugger in your head will eventually die a gruesome and well deserved death. Then you will be truly triumphant!   Take care!
Jay

[Jim Scott]

Hi, Cheryl ~

I'm sorry to learn of your post-radiation issues that are negatively impacting your quality of life.  Some of these are relatively common following GK treatment but, as you noted, some AN radiation patients have even more difficult complications (while some have few or none).  I did not undergo the GK procedure so I cannot offer any personal information but I did undergo FSR, which spreads the total amount of radiation given over weeks, resulting, in my case, no post-radiation issues.  I trust some of our GK veterans can offer you some insight to help you understand why you're experiencing the dizziness and taste issues you describe.  Of course, once your elusive doctor returns, he would be your best source of information (or should be).  Meanwhile, we'll do what we can to help you understand and cope with these problems as you continue to recover.

I have to take this opportunity to note that your experience underlines my caveat to newly diagnosed AN patients contemplating radiation over surgery that although radiation is non-invasive and initially has a faster recovery period, it carries it's own inherent risks.  Unfortunately, there is no risk-free treatment for ANs.  However, I truly hope that your complications will soon resolve and your recovery continue unimpeded. 

Jim 

[PaulW]

I had Cyberknife and I also had balance issues straight after treatment.
As well as much louder tinnitus and worse hearing.
I guess the balance, hearing, and facial nerve are right along side the tumour and they get a full dose of the radiation

By the sounds of it your symptoms are more severe than mine.

My symptoms were at there worst around the 2-3 week mark, and things slowly got better from there.
My symptoms did fluctuate, so some days were quite good and other days were not.
The good days increased, and the bad days decreased and so did the severity of the symptoms over time.
At 5 1/2 months I had my first day where I felt "Normal" again, that sensation lasted a few hours.
Now 9 months in I feel normal 95% of the time.

So hang in there it will get much better.




 

[lauralynn]

Hello Cheryl,

No way for one second ever think you are a wimp!  I did not have Gamma knife...had translab followed by Cyberknife.  Like you I'm just 43 and feel like my body is much older.  It's so tired and weak.  I had the Cyberknife in 7/09 and my dr. told me that the radiation continues to work for at least 2 years.  I have chronic fatigue and chronic pain..among other things but we ANers are not wimps!  We are stronger than we realize and we are not quitters either.  It's very recent since you had your Gamma knife so you need to give your body time to adjust to what it just went through.  So there is no need to ever apologize.  If you are having a bad day and just want to come to the forum and vent, feel free.  I do it every now and then.     We are a big family here and are always here for eachother.  We try to help one another as much as we can.  When you are able to talk to your doctor, let him know of all of your concerns.  And always come to your AN family and we will answer your questions as best as we can.  Please keep in touch and let us know how you are doing.  I had to use a walker for a little while but I weaned myself off of it.  Like you I am a mother (of four).  My two youngest live with me...they definately help me to keep going.  I know I have to stay strong for them and try to stay positive as possible.  Tomorrow is Mother's Day so I am wishing you an early Happy Mother's Day.  Enjoy the day with your family.  Don't worry if you don't feel up to doing anything...just enjoy your family.  Keep in touch.

God Bless,

Laura Lynn

[mk]

Hi Cheryl,,

I am so sorry you are struggling. My personal observation on this forum is that people who have a strong reaction to radiation initially end up having very good outcomes. This initial reaction may mean that your tumor is responding to treatment.
I didn't have any side effects after my GK, but then it didn't work either. Many people who had strong side effects saw gratifying shrinkage afterwards.
That being said, it is important to get these symptoms under control. They are probably due to some initial inflammation. Did you take steroids? If nausea is a problem, there are antinausea medications that can help ease your symptoms. In the longer term, I know that quite a few people found relief with vestibular exercises.
It is important not to be hard on yourself. Remember it is still called GK "radiosurgery". Take it easy, rest a lot and if possible ask for some help at home with the kids. Your body needs some healing and rest.

Marianna

[james e]

The balance problems are pretty normal following treatment. Following surgery, when the vestibular nerve has been severed, everyone wakes up vomiting in the recovery room...and the nurses are prepared for it. Even though the vestibular nerve has been compromised by the tumor, it is still sending messages to the brain, but sometimes you still get wonky. As soon as it is severed, there is NO message from that side, and you brain reacts rather strongly, causing you get super wonky.

Your vestibular system has been compromised by the GK probably, and your brain is getting new messages that do match up with your good vestibular system, your eyes, and your muscles. I could not drive for a long time. I really thought about what was going on, and I realized that I was using my eyes to balance myself. My eyes were used to just LOOKING at things, but now I was using them for balance. It is hard for me to explain, but I was seeing things say at 95% and balancing at 5%, but now I was seeing things at 5% and balancing at 95%. At a stop sign, I would look for cars left and right, get super wonky, forget what I was just looking at, and start looking for a horizontal surface to get myself balanced. Very confusing until I discovered what was going on.

Try walking with your eyes closed, and you will quickly realize how important your eyes are for your balancing. I took PT for about 2 months, and my brain began to get retrained  about the conflicting messages. I am 14 months post surgery, and I am still wonky, still stumble sometimes, but I have learned to live with it, still do my PT exercises, and my life could not be any better. I know your life is the not what you want it to be, but get into PT, and you will turn your life around...you really will!

By the way, your facial nerve was also compromised by the GK, and that is why your taste buds are not working correctly. Recovery is a long term process. My life has really changed since my surgery. It is kind of like falling off a horse...you just have to get right back in the saddle.

All of us here understand what you are going through. VENTING is a very important part of your recovery, and all of us here have broad, understanding shoulders. I have never met anyone one here in person, but I feel like a lot of people here are friends of mine, and they listen to my venting and I listen to theirs.

Last bit of advice, get into PT. You will really discover what is going on in your brain, and how to deal with it. You will recover faster, and get back to being a great mom and wife!

James

[leapyrtwins]

Don't know all the specifics of radiation and the "gifts" it brings, but just wanted to say that

1) you are not a wimp - or a whiner; and
2) it's perfectly acceptable to vent on the Forum

Hope things get better very, very soon.

Best,

Jan

[mattsmum]

hi - sorry to hear about your difficulties.
i had linac radiosurgery july 2010, and was also unfortunately surprised by the effects it has had on me. i have had big troubles with my balance (amongst other things), although my pattern was a little different from yours. i was much wobblier immediately after the treatment for a few days then went back to previous. i then had a worsening progressively over some months. it has now stopped worsening (being having vestibular rehab) and the spinning is much less. i am only able to drive short easy journeys in daylight at present. my post treatment mris have shown swelling and central necrosis so hopefully it has worked.
hang in there - do keep trying to get hold of your doctor - they may want you to hhave steroids.
best wishes,

vikki

[Rivergirl]

You are not a whimp! But a very brave person for going through what you did and braving through the side effects......and a cane is a smarter choice than falling, be careful.  I hope you feel better soon.

[CarolineO]

Wow.  You don't sound like a whimp to me.  Your body is in recovery and yet you
are still a mom having to deal with all the "mother things".  Medications make each
person react differently.  You are doing great and having to deal with many emotional
and physical things at the same time.

Don't be too hard on yourself.  Vent.  Ask people to help you.  Have someone come over
and take charge for a few extra hours of rest when you need it. 

I hope you are doing better and will be praying for you.

~~ Caroline - mother of a daughter who no longer has an A.N.