Author Topic: 3 months Ck major exhaustion and dizzy spells  (Read 18617 times)

Dominic12345

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Re: 3 months Ck major exhaustion and dizzy spells
« Reply #30 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!!!

PaulW

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Re: 3 months Ck major exhaustion and dizzy spells
« Reply #31 on: September 29, 2016, 03:23:00 pm »
Sounds like some of your problems may not be related to CK.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

CHD63

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Re: 3 months Ck major exhaustion and dizzy spells
« Reply #32 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
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Patti

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Re: 3 months Ck major exhaustion and dizzy spells
« Reply #33 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 
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Elsy

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Re: 3 months Ck major exhaustion and dizzy spells
« Reply #34 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

Dominic12345

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Re: 3 months Ck major exhaustion and dizzy spells
« Reply #35 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/ 
« Last Edit: March 06, 2020, 11:24:34 am by Dominic12345 »

 


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