3 months Ck major exhaustion and dizzy spells

[dominic12345]

3 months since my Ck and I fell like crap,  no problems with hearing, minor swelling and discomfort, bothersome headaches behind my ear, major exhaustion and dizzy spells.  I used to run 50 miles a week.  I now have a hard time cutting the lawn.  I did not expect how greatly I would be affected by the overall feeling... like I've been unplugged  and running at 5% of normal.  It's hard to explain just how horrible I feel all day long. 

I am praying this gets better... cause this has so dramatically changed my life, it's downright scary.

Is this normal?  Any answers from other who have experienced this is greatly appreciated.

[MG]

Sorry to hear this Dominic. Maybe it is from the swelling of your AN. I have heard that you feel very tired after CK/GK but should regain your strenth back in time. Hopefully it is a sign that the tumor is slowly dying.
Hope you start to feel better soon.

MG

[PaulW]

Unfortunately radiation does take its toll on your vestibular system if any of it was left prior to radiation.

Check out this website which helps explain what your are probably going through

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

It does get better.... A lot better. It's at least a two year journey and the first 6 months are the worst.

5 years out for me and I don't regret my decision.

Also check out www.myacoustic.org

[leapyrtwins]

I chose surgery to treat my AN, but I don't think the exhaustion and dizzy spells you are experiencing are unusual for radiation.

When I was contemplating CK, my doc told me that I could have side-effects as long as 18-24 months after radiation, so based on that I'm betting your "symptoms" will get better over time.

Hang in there - and keep us posted.

Best,

Jan

[Petrone]

Dominic,
 
I had GK in April 2013 and by June/July that same year I was absolutely miserable.  Dizzy all the time, "ice-pick" headaches behind the AN ear, poor balance, etc.  I remember worrying that I would never get back to feeling normal again.  Simple things like taking a shower were challenging. 

The good news - after 2-3 months of misery, all of my post-GK symptoms gradually subsided.  6-9 months after GK, I was symptom-free. My last 2 annual MRIs showed shrinkage and visible discoloration.  My only lingering issue is tinnitus, which I choose to ignore.  No other issues.  Started a new job last year at age 52. Life is good.

Try Alieve and ice for the headaches.  See your doctor if conditions worsen, but don't give up hope!  Your symptoms just may be signs that the GK radiation has inflamed and disrupted your AN, which is the objective of GK. 

Hang in there!  PM if I can help with any questions. 

Peace,
Petrone

   

[dominic12345]

Looking for answers from my doctors and getting nothing!!!

How long does it take to start feeling better?  As stated before, I'm 6 months CK and it's been 3 solid months of misery for me.  Ice pick headaches, dizzy all the time, exhausted 24 hours a day,  Vertigo day and night that brings me to tears with no relief from anything I've tried.  I have to hold on to the walls in my house to walk anywhere, I've become a non functioning person.

I've worked 1 day in the last 3 months and before this, I missed 1 week in 30 years of employment working 60 hours a week.  I can't walk a 1/4 of a mile on the treadmill without extreme dizzy spells.  As I mentioned before, I was in excellent health and a runner putting in 35-50 miles a week and had not even had a cold in 12 years.  I've always been responsible for taking care of my health.

I have been to the doctor on several occasions in the last 2 months and had consultations with both my ENT and the Radiation Oncologist who is head of the department... They keep insisting that nothing they did should have affected me in any way like I'm experiencing. I had 5 small doses over 5 days on a small tumor on my right side.

I asked them if they every read anything on the ANA website and both told me they had not.

Can someone please direct me to a Doctor anywhere in the Midwest that I can make an appointment.  I'm a fighter and will fight like hell to get better, but I'm loosing hope a little more each day. 

Lastly,  I chose this option rather than surgery because I was told I would not have any side effects and it would not interrupt  my work schedule. 

[PaulW]

Ice pick headaches could be a concern.... Have you had an MRI since the headaches began?
On rare occasions the radiation damages the tumour and it gives off proteins which can cause a reaction in some people causing hydrocephalus.. You need to get this checked out, it can be reasonably serious.
They can put in a shunt which is a simple procedure to stop the headaches.
I would get this looked at first...

As for the vertigo if it is disabling they can inject Gentamicin into the ear and kill off the balance organ in that ear... It's a permanant procedure. It's not a perfect solution, but if the vertigo is truly disabling you could ask about it.

Things do get a lot better.. And 6 months is often the start of a much better future..
I seriously wonder if your problems are related to hydrocephalus a rare complication to radiosurgery. It could be affecting lots of things

[CattAN]

Nine days post CK, yesterday evening I experience a headache and dizzy spell.  I had to lie down.  Luckily, I was at home still.  I am worried about this happening at work or driving home on the Freeway.  Aren't these symptoms supposed to start later?  Or do they get worse later?

[CassaP]

PaulW may well be right about hydrocephalus, and you do need to be checked pronto. A CT scan should suffice.
For me, hydrocephalus symptoms led to diagnosis of my 2.3x2.1 cm AN, for which fractionated radiotherapy treatment begins next week. I had intense, hot, prickly "positional" headaches -- e.g., intense throbbing after getting out of the car -- loss of equilibrium, shuffling gait, and a frightening decline in cognitive function, esp short-term memory. Wound up in the ER one night in April and a CT scan showed the hydro. But it took another ER visit and an MRI to reveal the AN, which, they say, may or may not have been behind the hydro, due to protein-shedding. Apparently it's a tough call.
Another possibility: your AN has swollen in response to your treatment, pressing on the brain stem such that CSF flow is impeded. The UK acoustic neuroma assn. notes this as a risk.
My VP shunt has helped tremendously, though I'm still somewhat woozy, probably due to vestibular effects of the AN.
In any case, good call PaulW, and do hope Dominic will post after consulting docs re possible hydrocephalus. Ditto CattAN.

[PaulW]

CT Scans give you a fair bit of radiation, and have been associated with a small but significant increased risk of cancer. My personal preference would be an MRI due to the better image quality for soft tissue, and the lower life time cancer risk..

Headaches following radiosurgery is common a few days afterwards.
I had a their weirdest headache within a few hours after CK... My doctor did warn me that it could happen...
For me I am pretty sure my headache was caused by my facial nerve being upset by the radiation.. My headache went away after a few hours....
Things can happen pretty much immediately after radiation... They then normally get better, then at around 5-6 months things get worse again.. For most people post radiation symptoms are just typical AN symptoms, However they are often at the more troubling end of the scale for the first 6-7 months.

[dominic12345]

Thanks once again for the opportunity to hear from those who have responded, your kind words and thoughtful sharing of stories has helped me greatly through this ordeal.

I visited my retired Doctor in immediate care who had been my Doc for 35 years out of desperation 2 weeks ago looking for anyone who could help me.  He reviewed my entire case and started me on a over the counter Meclizine 25 MG 3 times a day for Vertigo.  In addition, he recommended I start taking Ginger as it has helped his wife greatly with her Vertigo.  Both have helped and the severe Vertigo is manageable.

I had an appointment with the Neurologist and she immediately ordered an MRI due to the fact I could not pass a simple hand eye coordination test.  She also put me on 60MG of Prednisone for the next month which has eliminated my "ice pick" headaches. I'm still feeling the effects of a wonky head 24-7, can't work, drive or walk a straight line.   

On my first visit to physical therapy today,  the therapist evaluated my balance issues and determined that my visual neurology is pretty messed up and that my eyes won't pass protocol.  So she recommended I start first with a Optometrist that is certified in Neurological retraining issues and this should be my first step in dealing with my balance... who by the way is not covered by my insurance and costs thousands of dollars.

It's been an interesting, frustrating and depressing journey that started out with a simple minor problem of a slight hearing and balance loss.  If I've learned one thing in the last 9 months, the treatment of Acoustic Neuroma Tumors is a journey of self discovery with little to no information or feedback (other than this site and you wonderful people) on the treatment or the after effects.  I've discovered that I don't like our health care system very much at all.  The lack of coordination among physicians and the overall well being of patients is a lot less that I expected.   I still don't have any answers to most of my questions. 

As previously noted, I went from a very healthy active person, running 50 miles a week, working 60 hours a week and loving every minute of my life filled with challenges.  I've always been 100% responsible for the actions I take and the results I get, I blame no one but myself.  I should have chosen "watch and wait" but instead I took action based on sketchy information from a less that informed source of "Professional Doctors"  sorry, I had to get that dig in there!!!!

I will continue to challenge my Doctors to find the answers about my AN.  Every appointment is met with the same stare and the words uttered, "not sure what is going on" which I find unacceptable and unprofessional.  I even had a ENT Doctor tell me that"when they cook your brain, it does funny stuff, but I really don't know anything about your case".  Where in the world do you radiate a guys head and give him no information on what to expect during the following year, or worse yet, leave every question unanswered on every symptom and reaction I experiencing.  This has got to go down as the worst interaction with humankind I have ever encountered.

God grant me the serenity to accept the things I can not change, The courage to change the things I can, and the wisdom to know the difference.

Please Please Please... do your homework before taking any action and make sure the Doctors you are dealing with are the absolute best people to deal with, question EVERYTHING!!!!

To Paul.. I just went back and re read your entire blog, I laughed and cried at the same time knowing that you have experienced the same things I am going through now.  Words cannot express my gratitude to you for taking the time to put in writing your experiences and the comfort they bring.  Thanks!!!!


 

[PaulW]

Hi Dominic...
Not my blog..... Belongs to Francesco
But yes I found it very helpful..
My problems appeared to have been less than Francesco's but the timing of events and symptoms very similar

As for the radiation to the brain. People that receive radiation for other tumours often have very few or no side effects..
The problem with AN's is that it affects nerves and the cochlear, The swelling often decreases blood flow to the cochlear, and the nerve.
These changes cause the dizziness and eye problems as you lose your VOR Vestibular Occular Reflex..
The tumour itself also gives off proteins that are ototoxic, which affects the cochlear. The nerve is also compressed or the tumour can invade the nerve further.. As the tumour dies, it affects blood flow to the nerve causing more issues....

The problems experienced are rarely related to the brain itself.. The funky effects of a dying tumour on your balance/Hearing Nerve are largely to blame.

[Echo]

Hi Domenic,

I had Gamma Knife 2 years ago and found the first year post treatment to be pretty challenging.  Exhaustion was one of the first things I noticed and it was pretty intense.  I got in the habit of taking a time out every day at lunch for 15 or 20 minutes to put my feet up, close my eyes and rest.  I also made a point of getting to bed early and letting my body rest and recover.  Roughly 3 months post treatment I noticed my balance becoming worse and I developed ocular motor issues.  I couldn't walk a straight line to save my soul.  Visually, everything around me was bouncing up and down or sideways when I walked - especially noticeable at night with all the lights. Looking for items on grocery shelves made me nauseous.  I figured most of these issues were caused by swelling and I did not want to take steroids unless absolutely necessary.  I was fortunate that while these symptoms were most annoying, I was still able to work every day and continue to drive.  I did have to stop driving at night for a few months because the darkness disoriented me, but daytime driving was not a problem.   Within roughly 9 months all these symptoms disappeared!!  Exhaustion can still catch up to me if I don't take care of myself, but it's not as severe as it used to be.

I have had great support within the medical community here in Toronto.  I was sent to a Physiotherapist who specializes in Vestiblar Rehab.  If you can access this type of therapist, you should be able to get help with both balance and vision exercises - and hopefully for a much more reasonable cost.  I was also sent to see a Neuro Opthalmologist who has been keeping watch on my cornea and optic nerve.  I have had some issues with my eye being dry and as long as I use lubricant in the eye 4 times a day, all is good. 

There is light at the end of the tunnel.  GK or Cyber Knife are not quick fixes.  Some folks sail through with no complications while others run into some challenges.  We all react different to treatment.  My neurosurgeon told me to expect a few ups and downs over the first 2 years and then things should smooth out.  I've got those 2 years behind me now and truly feel like I'm moving forward again.

I wish you all the best!
Cathie

[dominic12345]

Had an MRI done last Friday and a follow up with my Neurologist today to review the scans..... they found another AN on my left side (currently dealing with one on right) and I'm kinda in shock right now.  It was not there 6 months ago.

Here's a question for all of you... how many of you have developed/discovered a second AN after Radiation on the other side?

Has anyone been to Mayo Clinic for their AN, I'm headed there soon after I go to Green Bay because of insurance requirements.

Anyone ever had there balance nerve disabled (not sure how it's done)  It was mentioned as an option/possibility.  Either way, how long would you wait to have this done or is there a benefit to waiting until your balance returns?

I got a few answers from the Neurologist today about my left side AN and was told that the radiation is working, I was kind of in shock so I did not get the chance to ask her what that actually meant.  My balance is gone and I'm unable to stand or walk without assistance.  I'm exhausted and have not worked in the last 6 months, my hearing phases in and out but is mostly there (50%) with no tinnitus.

I'm headed to Green Bay to meet with another ENT before I head off to Mayo Clinic.  I'm hoping to work with someone there who has experience dealing with AN's

How do go about treating a second AN on the opposite side knowing what I am going through.  I really need professional guidance so I make the correct decisions.

Thanks for all of you that have taken the time to write, e-mail and post, this group knows more collectedly than any Doctor I have been to so far and I value your stories and experiences.   Any additional information is greatly appreciated, I hope to some day be able to contribute.

Dominic

[CHD63]

Hi Dominic12345 .....

Well, that is a bummer of a report to have another AN!  But, it may answer some of your questions on the extreme symptoms you have been having.

As for balance nerve disabilities:  not because of two ANs (although my original AN grew back after my first surgery), but because of extreme radiation exposure as a child one vestibular nerve function was knocked out and then my AN knocked out the other one.  Therefore, I have no vestibular function from either side.  Following my first surgery, I could not walk without a walker or hanging on to someone for weeks.  I had many months of vestibular therapy by a trained vestibular therapist and have learned to walk on my own using only my somatosensory responses (knowing where my feet are) and hooking my vision onto something that is not moving whenever I walk.  Obviously, I do not do well in the dark so I keep nightlights and/or flashlights available at night.

Although you have not been officially diagnosed as having NF2, you might find some good advice in the NF2 section of this forum.  Since you now fall into that rare among rare situations, you might do well to send your MRIs to physicians experienced with patients having multiple ANs.  It never hurts to have second or third opinions in cases such as yours.

Dr. Link at Mayo Clinic has had much experience with ANs.

Many thoughts and prayers.  Keep us posted .....

Clarice