3 months Ck major exhaustion and dizzy spells

[dominic12345]

Wow!!!  Just got back from my trip to Froedtert Medical in Milwaukee.... and the Doctor there showed me there is no evidence on the MRI that shows a second AN.  It was well worth the 175 mile round trip!

OK... great news!! but why would the Neurologist on my last visit a month ago tell me that I have a second AN that might be causing my balance issues.  For the last month, I was besides myself trying to deal with my current issues and wondering how was I going to go through this again.   

While there, I expressed that I was pretty sure I had lost most of my hearing and was having a weird sensation on the AN side.  I was given a series of tests and my my hearing has not changed and my comprehension has gone up 15%.  I went in thinking that my hearing was totally gone, at least that's what it felt like to me.  I was totally wrong, the feeling I was experiencing, a weird sensation on my AN side, was not my hearing.  On the other hand, my balance is still my biggest challenge.

I'm scheduled in early December for a series of tests to determine what's going on with my balance.  My doctor thought that my balance nerve on AN side was affected abruptly by the radiation and that my brain is struggling to adapt.  Before I opted for radiation, the tests indicated I had lost all the balance input on the AN side... not true as I have discovered by my recent struggles.

This turned out to be a great visit, what a difference it makes to talk to someone who has a great deal of experience in both surgery and radiation treatment of AN's.  I would be glad to provide his name if anyone in Wisconsin area, who has Network Health for insurance, is looking for a knowledgeable first class Doctor.

He recommend that I start vestibular training and to push myself by returning to walking/running every day.  My brain needs to relearn how to balance.

Thanks once again for everyone's kind words!

[dominic12345]

Anyone ever experience tingling and numbness on the side of your face that Ck was preformed on?  I'm starting to get these sensations more frequently. 

Dominic

[PaulW]

Dominic I forget how big your tumour was... If it was near or touching the trigeminal nerve or is now this would not be unusual.. It will probably subside in time... Most things do within 2 years.
Its a bit of a journey. You have talked about a lot of symptoms. Have you had a recent MRI?
It would be nice to rule out hydrocephalus in all of this.. This is a reasonably common complication of radiosurgery,  particularly important if you are still getting big headaches.

[dominic12345]

9 months since my Radiation and the exhaustion has subsided for the last 5 days... Hurrah !!!!  I'm beginning to heal both body and mind.

I made a visit to Froedert in Milwaukee and underwent a series of tests for my balance and visual responses.  Everything went great and my doctor confirmed that I have perfect response on my left side (non an).  The MRI shows the tumor is undergoing a change in the middle and my right side balance will always be a challenge.

I've started walking on the treadmill, which is an interesting challenge since my balance is still horrible.  I placed 4 dots on the outside corners of my treadmill to practice my visual therapy which has helped a lot.  My endurance is a shadow of what it was when I was running 50 miles a week just 10 months ago, but I managed to walk 8 miles in the last 4 days at a whopping 3.5 mph.  I'm planning on running a marathon next September if the good Lord helps me through the recovery.  I'm dedicating it to my brother Andy who I recently lost to Cancer.

Without a doubt, this has been and will continue to be the hardest thing I have ever experienced in my life, I am so thankful for the kind words of encouragement that I have received from this group of caring people.  Without your support, I don't know what I would have done.  When I sought out answers in desperation I found them here...not at the Hospital or my Doctors.

I'm now at a point where it's back up to me and how hard I want to fight for myself, and for that... I am forever grateful!

[mcrue]

Good to see you're improving 9 months after radiation treatment.

[dominic12345]

It's been 6 weeks since my fatigue and major vertigo subsided from Radiation.  I never thought I would ever feel "somewhat normal" again and I continue to improve a bit each day.  I don't think I will be running any marathons soon!

I'm still feeling slight vertigo, but it is much improved and no longer a major factor in my life.  My hearing on my AN side has definitely been affected, not sure how much, I can't hear very well on my AN side.  I'm going to wait another month and get a hearing aide.  I'm working hard every day to regain my strength by running indoors on my treadmill with only slight balance issues.

Even my clients complemented me on how "healthy I looked".  I thanked them for their prayers and offered my gratitude for their support throughout this experience.

I know many of you come to this website looking for answers... just as I did.  My experience was a journey in fatigue, frustration and discovery.  Each day I am thankful for the opportunity to move forward with my life.

On a personal note...I'm equally creative and analytical,  I'm focused and a self driven person that lives live with a great deal of humility.  I learned at a very young age to accept 100% responsible for my actions and the outcomes they produce.  I approached the treatment of my AN with the same challenge.

It is with reluctance that I say... my initial Doctors including my Ear Nose Throat, Radiologist, Neurologist, General Practitioner, Audiologist and Physical Therapist in the Fox Valley knew very little about AN treatment and the after effects. 

I am grateful to the Nursing staff who reassured me before every MRI, Radiation session and test.  Your kindness and caring helped me make it through.  I am grateful to Dr. Steven Harvey and the staff at Froedtert Hospital in Milwaukee where I found answers to questions others had failed to answer for 8 months.

I've learned AN's presents a challenge to both Doctors and Patients, I made it through 3 years of Doctor and Hospital visits, MRI's, CT Scans, and way too many tests and exams to name.  It was the last 9 months of fatigue, vertigo and balance issues  that truly tested my strength and will. 

[dominic12345]

It's been about a year since my CK and I am beginning to realize just how far I am from normal. I'm frustrated and functioning at about 70% of my norm.  I'm completely over the fatigue that haunted me for 11 months and rendered me a shadow of what I was.  Melodramatic.... not a chance,  the most difficult challenge I have ever faced  leaving me unable to walk without holding on to something or someone.  Vertigo 24 hours a day, ice pick headaches.  It took every ounce of strength to work a few days a week from home.  All this unpredicted by the physicians and treatment I chose.

At one year,  I'm back to running at a reduced pace on my treadmill every other day,  running or walking outdoors is still a big challenge.  Really....Every day is a challenge,  I'm working a few days each week from home, not able to work with the intensity that is the core of who I am and all I have achieved in my life.  I get up every day with the intention that today is the day I return to "normal ".... But sadly,  I am faced with coping with the choices I made and the unintended results.  I've continued to reduce almost all my activities and outside involvements.  Until I'm able to do the simplest things like walk without staggering or tripping on my own two feet or feeling wonkey all the time.  It's a humiliating experience to try and be as outgoing as I was one year ago.

My hearing has remained the same +\- with no changes.

My balance and vertigo [wonkey head], even greatly reduced, continue to haunt me every day and are unpredictable.  Both leave me at times unable to plan anything beyond the next few hours of my day. 

My health, once a enjoyable aspect of my daily routine, has become a daily challenge to eat right, exercise and get enough rest.

After one year.....My mind, body and spirit have been through a major realignment with the unexpected challenges of CK.  Each day presents new challenges as I watch life roll on around me leaving me on the sidelines to watch.  I wait in anticipation/desperation for the chance to "get back in the game of life"

My experience has definitely been unique and unpredictable, 100% opposite of what I was told and the information I was provided to make a treatment decision.  The CK treatment has changed my life over the last year dramatically,  only time will tell if I made the "right" decision in the long run.  In the short run.... words cannot express how difficult it has been to face the challenges verse expectations over the last year.

Do your homework, get multiple opinions, listen to the angels on this board find a team with experience!

[Patti]

I've been following this link and I just want to say how sorry I am for you that you have had these problems and I will say a prayer for you!  Hopefully this will all be better soon.  I read that it can go on for 2 years!  I haven't had any big issues since my CK treatment in November 2015.  Just some head and face pains.  I wonder if there's more to come! But I think because of my initial surgery and loss of hearing and balance (and much more), that I don't really have anything else to lose!  Keep up the posts! 

[PaulW]

Hey Domenic, sorry to hear about the ongoing issues. Pretty sure they are related to a broken vestibular system and not damage to the brain itself.
People that are already deaf or have zero vestibular function often breeze through the procedure. If you do have hearing and a balance system, things are more challenging.
I went to the doctors three years before my diagnosis because of tiredness they found nothing. I now realise it was my balance causing me to get tired. Surgeons cut the vestibular nerve in many surgeries to stop the balance problems post surgery. For me the tiredness started well before my diagnosis and took 2 years post radiation to feel really good again.
I too have a very high intensity job and I found the first 12 months very challenging

[mcrue]

What team of doctors did you go to?

[dominic12345]

Message me and I'll share the physicians and locations gladly.

Dominic

[KaiJiaH]

Hi Dominic,

May I ask the size of your AN and where did you receive the CK treatment? Did you have to travel or take flight before and after the treatment?

thank you and hope you feel better.

[dominic12345]

I was treated in Appleton, WI.  Did not have to travel.  My AN is located on my right side and was 6 millimeters, or about the size of a pencil eraser.  I was diagnosed in February 2013,  I lost the hearing in my right ear suddenly while on a long run training for a marathon.  My hearing returned after 2 days, but was slightly diminished.  A follow up MRI showed the AN.

I had no previous noticeable symptoms.  I waited an watched for 24 months and 3 MRI's. I continued to live a normal life.  Upon advise of my ENT, radiologist,  I had the CK when my hearing continued to decline.  5 doses over a 5 day period lasting an hour each day.

After consulting doctors in Madison and Appleton,  I initially rejected both radiation and surgery to seek additional information.  2 weeks after I informed my doctors of my decision,  I received a call from the head of the radiology department of the hospital in which he said I had a 90% chance of hearing preservation.  I was told by both of my doctors there would be no side effects.  This was the most important thing to me because of my work and activity level.

And shortly after, I started with the after effects.  By day 4 of my radiation,  I started to experience pressure and fluid like sensations on my AN side,  I immediately inquired about the symptoms and was told it was normal and should go away in a few days.  For the next 3 months,  I steadily declined to the point as previously noted.  I sought help from several doctors in desperation and got no answers.  I was told that whatever they did was not causing these effects... Even though I needed assistance to walk in for the appointment.  My world was turned upside down.

[KaiJiaH]

Thank you Dominic,

I am new here and planning my CK treatment in Germany (I live in Sydney Australia). I need to exam my decision – maybe I am just getting anxious. When I was first diagnosed back at beginning at 2014, the size was only 10mm. a year later, when MRI shows it is at about 13mm. The neurosurgeon who monitors me told me that the AN is in a better size to be treated. At beginning, he really against any treatment. I think he considered the size and also my symptoms too.

I heard that balance can improve over time. The solution PaulW mentioned is something I also hear from my ENT.

Hope you feel better soon.

All the best
KJ
 

[dominic12345]

Feeling back to almost normal,  it's been 2 months since any feeling of exhaustion and vertigo.  I'm learning to cope with my balance issues and partial loss of hearing.  Some days, I don't even think of my an or what I've been through over the last 3 years.  I'm back to running every day which reminds me I have a long way to go to get back to 50 miles a week.  One day at a time works for me now.  Life is good and I'm back to work every day.  I start my day with a prayer, a thank you and out the door for a run,  1/4 mile longer than yesterday.  Push...push...push...now that feels normal!