ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: Dominic12345 on August 08, 2015, 08:15:38 pm

Title: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on August 08, 2015, 08:15:38 pm
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.
Title: Re: 3 months CN major exhaustion and dizzy spells
Post by: MG on August 23, 2015, 06:17:50 am
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
Title: Re: 3 months CN major exhaustion and dizzy spells
Post by: PaulW on August 24, 2015, 03:56:22 am
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
Title: Re: 3 months CN major exhaustion and dizzy spells
Post by: leapyrtwins on August 24, 2015, 02:38:31 pm
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
Title: Re: 3 months CN major exhaustion and dizzy spells
Post by: Petrone on August 24, 2015, 09:54:24 pm

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

   
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on September 07, 2015, 06:41:56 pm
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. 

Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: PaulW on September 07, 2015, 08:35:26 pm
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
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: CattAN on September 11, 2015, 12:06:36 pm
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?
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: CassaP on September 11, 2015, 12:09:03 pm
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.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: PaulW on September 11, 2015, 03:13:55 pm
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.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on September 23, 2015, 05:35:54 pm
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!!!!


 
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: PaulW on September 23, 2015, 08:48:21 pm
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.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Echo on September 24, 2015, 07:49:07 pm
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



Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on October 13, 2015, 02:26:37 pm
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
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: CHD63 on October 13, 2015, 03:59:55 pm
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
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on October 31, 2015, 06:03:44 pm
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!
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on November 07, 2015, 09:02:30 am
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
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: PaulW on November 07, 2015, 04:12:36 pm
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.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on December 09, 2015, 07:56:40 pm
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!



Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: mcrue on January 14, 2016, 08:38:20 am
Good to see you're improving 9 months after radiation treatment.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on January 23, 2016, 08:52:36 pm
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. 
Title: 12 month update
Post by: Dominic12345 on April 01, 2016, 07:17:25 am
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!
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Patti on April 01, 2016, 11:24:17 am
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! 
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: PaulW on April 01, 2016, 02:38:40 pm
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
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: mcrue on April 02, 2016, 11:11:36 am
What team of doctors did you go to?
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on April 03, 2016, 07:31:56 am
Message me and I'll share the physicians and locations gladly.

Dominic
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: KaiJiaH on April 04, 2016, 03:02:05 am
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.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on April 04, 2016, 05:06:07 pm
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.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: KaiJiaH on April 04, 2016, 06:00:10 pm
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
 
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on July 27, 2016, 06:48:36 pm
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!
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on September 28, 2016, 11:00:16 am
Anyone ever have a low blood platelet count 2 years after radiation.  My recent checkup showed a very low count.  I've hit a wall in my recovery with my vertigo returning in full force.  I'm just exhausted with the day to day challenges of simple things like walking a straight line.  I had a couple of good months and now back to a wonkey head and exhaustion.

Thanks in advance for anyone's help!!!
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: PaulW on September 29, 2016, 03:23:00 pm
Sounds like some of your problems may not be related to CK.
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: CHD63 on October 08, 2016, 05:51:28 am
Hi Dominic12345 .....

When AN patients refer to the "new normal" for many of us that is the reality.  For me, when things are going well I tend to think my AN symptoms are disappearing.  But then, I either have an unrelated medical condition appear, I am getting less sleep, or have a stressful situation and the symptoms all return with a vengeance.  For example, my husband and I just made a major location move and the stress was over the top.  All of my symptoms returned ten-fold.  I really have had to fight the "Is my tumor growing again?" thoughts and remember that it is all most likely from the stress.

I am not in any way saying that your situation is like mine and I would certainly monitor all symptoms and any new medical issues.  Then, I would seek additional medical help if they do not let up or get worse.

Many thoughts and prayers.

Clarice
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Patti on October 08, 2016, 08:59:50 am
Clarice-That happened to me this summer! I was under so much stress with various issues.  One of them was selling my mom's house in Florida and moving her back to upstate NY in an independent living facility so she can be near me. The details tortured my brain.  I felt so sick and had so many AN issues coming at me.  I swore I was dying.  The day she moved up here my AN issues stopped for the most part.  I did, however have an MRI on thursday that I am waiting for the results on.  Patti 
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Elsy on October 23, 2016, 04:10:58 am
Just had my 3 month post GK MRI and was happy that necrosis was seen ! But..there is also sizable swelling around my tumor with some compression of my right cerebellum  :-\
Developed tinnitus a bit more again.
Trying to ride things out with resorting to steroids if possible.

Guess these are just bumps in the road that we all have to cross on our way to full recovery.

Hang in there, fellow postie toasties!
Elsy
Title: Re: 3 months Ck major exhaustion and dizzy spells
Post by: Dominic12345 on March 05, 2020, 03:33:57 pm
Just had my 6 year review with Dr. Steven Harvey in Milwaukee.... He's the only Physician that has earned my trust in the last 6 years.  MY tumor has not grown, balance still a challenge, hearing still 20% of normal, but nothing else has changed!!

Last 3 years been a challenge. Low palette counts, excessive bleeding, racked with pain, sore joints, thought I was headed down a steep slope.  I could not run or walk very well and struggled to survive every day.  Ended up in the emergency department in late June because I was feeling numbness in my right lip/nose, right index finger and right big toe.  I was released with nothing found.  Next day back to the Emergency department in my home town with same symptoms... turns out I was having a mild stroke and here is where things get interesting.  An Emergency room physician asked me if I had ever had my Calcium Blood score checked, I did not even know what that is, well it turns out I had 750 times the normal amount of Calcium in my blood and it was making me very sick.  A couple days later, Doctors removed a golf ball size tumor along with 1 of my 4 Parathyroid glands in a 5 hour operation.  Every one of my Doctors had missed this incredible important sign for the last 3 years my counts were very high.  Needless to say I was pissed.  MY Blood Pressure and Cholesterol have always been low because I never smoked or drank and I was a marathon runner for all the years before I was diagnosed with my AN. When I confronted them... I was told "sorry I missed that".  For the second time in the last 10 years the Doctors were incompetent and it cost me 3 years of my life.... it was the cause of my minor stroke.  I have since learned that Radiation to the head neck can cause a Parathyroid tumor.

Please have your blood Calcium score checked, if you area slightly high, talk to a qualified ENT and have the bad Parathyroid removed... it's a normal 20 minute operation.

For 3 years, my doctors attributed my pain, moodiness, and great discomfort to my AN, they WERE ALL WRONG!! 

Now the great news.  After a 30 day recovery... I feel amazing, I started running in late January and I'm hitting 25-30 miles a week.  Absolutely zero pain, soreness... it's all gone, I am a new person...just ask my wife.

I still cringe every time a new poster says their Doctor will perform CK or Cyberknife and they can return to work that same day.  That's absolute bullcrap and don't believe a word of it.  There is a 18-24 month recovery from Radiation from everyone I have spoken with over the past 6 years... Please go back and read the incredible stories of those of us that have chosen that option to treat or AN's.  With out their support, I would not have made it through the first 3 years after CK.

Lastly, I added this link information on Hyperparathyroidism, have your blood score checked and believe me when I say … It saved my life!!  https://www.parathyroid.com/