Dr. says Chick's dizziness may last forever

[S. Jane]

My Dad, Chick, regrets having the PCI so much. He is often tired (though was just taken off anti depressants and anti anxiety meds and has improved) and is very dizzy. Complains that inside his head is not clear. Has to stop moving when he climbs the stairs to get his balance. Can't bend over to pick up something without losing his balance. At first the doctor said this would clear up in 2 months. We have reached that, and if anything it is worse. Now the doctor says it could last for six months, and privately told my Mother that if it did, it would last for the rest of his life.

I have not read of any one else having this major reaction to PCI! I even went through the archives to see if anyone did! Seeing my Dad so discouraged and depressed has been difficult. I know I've read so many positive reasons to get PCI, but this side effect is dibiliatating and the quality of my Dad's life has diminished so much so that he will refuse future treatment if/when the cancer returns.

And final update, there was something sited on his lungs and the doctor is treating him for pneumonia, but will do another CAT scan late August to see if it is the cancer returning.

This disease is horrible and no one deserves the pain and suffering that goes along with it.

Love,

Jane

[renee_ky]

Jane- I am so sorry to hear that your Dad, and your family has to suffer this. You are right, it is horrible and noone deserves it. I will pray and pray that this condition is temporary.

Renee

[awpoint]

Yes. My husband has had horrible side effects or what ever you want to call them from the PCI. It has been just over a year since PCI ended and finally he is getting better. It seems the only thing mentioned as a problem is memory loss. I wish we had known how bad the physical side effects were. Don't give up on your Dad. It may take a long time. Do get all the physical therapy you can, that is very important.

After PCI my husband was in a wheel chair, unable to take care of basic needs, then a walker,-- now walking, showering and even driving on his own.

We saw a neurologist finally--he said "he will get better but it will take a while." I really wasn't sure he would get better--but he did!!!

Anne

[kimblanchard]

Jane,

So sorry your Dad has had such a hard time. I was just thinking of you both and wondering how things were. Anne raises a good point, try seeing a neurologist. You may get some answers in that direction. Physical therapy may help him relearn his balance. There is a therapy known as Vestibular Therapy which deals with the balance system. I know there are experts in Boston that deal just with dizziness. I think you know why he got the side effect, but now maybe someone can help him overcome it.

My mother is currently trying to make the decision of PCI vs no PCI. She meets with the radiologist in early Sept. Her onc is remaining neutral on the subject but has been candid about side effects that could mean her loss of independence (which she cherishes). I think she is leaning toward not having it, but it is not an easy decision. Her doctor used the age of 65 as the point at which people tends not to do as well after receiving PCI, after that age, or there about, he said you have to look a lot harder at long term permanent side effects. But as always some people sail thru and others may be severely affected.

Sorry for this set back. Please PM me if I can help you find some therapy in MA for Dad. My mom had a bad bout of dizziness so severe last year that landed her in the hospital and rehab for weeks so I did my share of research. We saw all the big gun ear doctors, neurologists, and therapists and finally got the right team together to help her. Again, sorry for Dad's problems, I am praying with time he will get relief from this side effect.

Nancy

[mhutch1366]

I have never had brain involvement, PCI or WBR, and I still had problems with vertigo. I was very cautious on stairs, almost fell off the exercise bike (!), wouldn't step one step up a step stool to change a lightbulb or reach something on a kitchen shelf.

It might have something to do with my ears and hearing loss from cisplatin, I don't know.

After four years I am somewhat confident that if I ABSOLUTELY HAD TO, I could ride a bike without falling over before the end of the driveway.

Life after is never what it used to be, regardless of what combination of treatments and therapies one has. Instead there is a new normal, with lots of wierd things that may or may not go away. I have cobwebby things in my eye fluid that I know will not go away, and the problems with numbness in my left arm/ fingers will never go away, but some things like the hyperreactive airway got gradually better, as did the vertigo, and the ability to fight off colds. I noticed changes on the level of a year or two or three, not weeks, not months.

I hate to see a lifesaving protocol overlooked because it may leave some tracks in the sand, some changes.....

Just had to toss that into the pot.

XOXOXOXOXOXOX

MaryAnn

Prayers always.

[Rachel]

I had a late reaction to WBR that included dizzyness. I thought it would last forever along with the Fatigue but it is going away slowly. Hang in there. Don't give up yet. Just be carefull.

Rachel

[berisa]

My dad didn't have your mentioned symptoms but he cannot fall into sleep. Hearing was temporarily affected with strange sound in ears.

Did the radiologist make the radiation too strong to damage something in the brain? I'm sorry that I don't have the answer. I mean the real answer. But I do hope that these are just temporary and would not last long.