3 months Ck major exhaustion and dizzy spells

[dominic12345]

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]

Sounds like some of your problems may not be related to CK.

[CHD63]

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

[Patti]

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 

[Elsy]

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]

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/ 

[dominic12345]

8 years later after treatment of an with radiation….. just found out I have Kidney lesions which are cancer.  And….. 4 spots on both Kidneys which the first surgeon informed me that due to the difficult location of the lesions,  they can’t operate.  I requested a cat scan, ultrasound and a MRI due to my own suspicions…… doctors are once again clueless!

God how I wish I would have “watched and waited”

BYW…. I was told this might be a long term effect of radiation.

Non smoker, drinker, healthy person…..

Please consider the unwanted side effects of radiation!!!

[mwatto]

Dominic I am really sorry to hear your news. I had CK 4 years ago and have had no issues except maybe the odd nerve pain that side which turned out to be TMJ. Do the doctors think this is related to the CK? Have never heard of anything like your experience post treatment on this forum - been on it four years. I do know CK is used for inoperable kidney lesions tho :https://pubmed.ncbi.nlm.nih.gov/24128835/ reading your previous posts...you have had an awful time of it!

[dominic12345]

Thank you….. I’m overwhelmed with the decisions that need to be made. I am humbled and greatful for your compassion.  Without the incredible people on this site that have shared their experiences both on and off line, my journey over the last 8 years would have been unbearable.

I will look into the information you provided and discuss it with the team of doctors that I’m working with.

Thank You!!!!!

[mwatto]

My heart goes out to you Dominic. I had PTSD from just the AN diagnosis and then after radiation (am very academic so my brain is everything to me- play chess a few times a day and I write and sell exams to schools). 6 months after treatment I 'shattered' my shoulder and given no painkillers (just panadol) so gritted teeth through that - took two full years to retrain brain and that side of body. One vax bought heaps of new issues as did covid 6 months ago...
I too am grateful for forums - been on the Long Covid one for two years after a reaction to Pfizer. It just makes such a difference to have empathy and access to decent resources. Funny enough I first joined the Australian AN forum and found it to be the opposite so I left and joined here. 

[dominic12345]

Had an appointment with a team of doctors from Mayo Clinic,  what a incredible experience.  Please consider them for any of your challenging healthcare needs.  My local doctors are clueless and should not be allowed to practice medicine.  A team vs B team is the nicest way I can describe the difference of knowledge, professionalism, and results!

[dominic12345]

10 years ago, I started my AN journey,  it's been a long road of discovery, frustration, and acceptance.  I've changed significantly in both personal and physical ways.  Even though I never planned to retire, I recently sold the company I started 30 years ago to concentrate on my health.  I've back to running every day which brings me a bit of release.  I do it to run "the crazies out of my head".... Running everyday makes me feel whole again.  While running, I often feel everything is normal again, my balance is great, my worries are few and far between.  It's when i'm done that i'm reminded that I have little to no balance, have 90% hearing loss on my AN side and my cooldown walks imitate a drunk trying to pass a sobriety test. 

2 things I know for sure,  MRI machines were designed by people that specialize in torture and life is like a bank account, you make deposits when it's good and withdrawals when not so good.

I've been through dozens of MRI's, multiple radiation treatments and the untold short and long term unwanted after effects, years of steroids, rituximab infusions, surgery, headaches, loss of hearing, vertigo and balance issues and a 10 year history of limited to no answers from an array of doctors, specialists and physical therapists.

Once again, I would like to express my gratitude to everyone here for your shared experiences and your kindness!  Without this resource, my journey would have certainly been much less tolerable. 

Please take the time to contact me if you're newly diagnosed or facing a difficult decision or just frightened by the overwhelming decisions that need to be made, I’ve been there.  Maybe something I've been through will offer you a bit of comfort.