NPC, Neck Cramps, Dysphagia, Botox Nightmare, Aspiration Pneumonia

jestawoman

Hello everyone... I've not been here in quite some time, but want to share an experience in the hopes that the information might be helpful...and in fact SAVE a life...
My brother Troy, age 43, with recurrent Nasopharyngeal Cancer going on 6 years now, has had alot of problems. He is down to 150 lbs. on his 6'2 frame. On April 5, 2010 he was administered his 3rd round of Botox shots to treat Troy's severe neck spasms on the side he had a radical neck dissection 3 years ago, and hoping to help ease the 24/7 headache he lives with. The dose was upped to 100 units and administered in the usual places in his neck region. This time however he was also given a dose on each side of his forehead and under the outer corners of each eye. After a few days, Troy thought maybe he was feeling just a little relief, and then suddenly everything went down hill. He became unable to turn his head to one side as much and swallowing became more difficult. His speech sounded quite different, he developed terrible bad breath (Pharyngeal poches filled with trapped, misdirected food and drink.)and a constant cough. Next thing you know, he is unable to eat or drink anything at all, even water came immediately pouring out his nose. We drove the 60 miles to the Neurologist who had administered the Botox and were told "Gee, so sorry", and it will take probably two weeks for the Botox to wear off. The next day I called and reported that his symptoms had intensified and they called us back to Portland for a Barium Swallow X-Ray. The X-Ray showed Troy was indeed aspirating into his lungs. We were sent home and told not to let him eat or drink anything and that he needed a feeding tube. Sorry this is so long.... This is April 15th. We returned home just in time for me to take our Mother in for her daily radiation treatment, only to return and find Troy in bed smothered with heavy blankets, shivering with a fever of 102. I raced him to the emergency room. He was diagnosed with Aspiration Pneumonia, his swallowing musculature paralyzed completely by the Botox! He was admitted, given IV antibiotics and regular shots of Morphine for headache and neck pain. There were many problems in the hospital. Troy kept getting his surgery to install a feeding tube postponed because it was now the weekend and they said other people were sicker. So...Troy's two children age 15 and 18 were there to visit, the nurse came in with a shot of morphine she said was added "a little extra" to help Troy relax from the stress over the feeding tube situation. He had not had ANYTHING to eat or drink for 6 days.
Next thing you know Troy STOPS breathing and goes CODE BLUE! After what seemed an eternity of crazy activity and Troy's two children going hysterical with me crying, all of us thinking he was gone, he was brought back to life and transferred to intensive care. Right away he was put on a ventilator and taken to finally get a feeding tube installed. That procedure was difficult at best and took two hours. They were unable to install a pick line. He was left on the ventilator for several days and kept in an induced coma. I will never regret staying with him at the hospital from the moment I delivered him to the ER room for many reasons pertaining to Troy's many issues. I DO NOT reccommend anyone leave a family member that sick alone for any amount of time!
Troy was hospitalised for 10 days before being quite unprofessionally discharged. I get the feeling quite regularly that for Doctor's, Troys case is just too old, too complicated by so many complications and symptoms. He has been actually told on more than one occassion that "he needs to understand and accept that this is all his cancer, that it is a terminal disease"! DUH!!!!!!!!!!!!!As soon as his Oncologist returns from his 5 week absence Troy is scheduled for "Salvage Chemotherapy."
However, It would seem unanimous that the Botox is responsible for Troy's current illness. We have been told by several sources in the hospital that it will be an estimated two to three month wait for the Botox to wear off - if indeed it will. When I asked if Botox had any cumulative side effects I was told "Yes, some." No one ever told us that before.
Personally, I believe it's possible that scar tissue from radiation and surgeries might already have been causing some degree of Dysphagia - but the Botox is what has damned near killed my brother. My brother wishes I had stopped them from reviving him when he coded....
Be your own Advocates and May God Bless All Of You!
I think I'll go back to my original screen name. It is Warrior Woman!

Hal61

Thank you
Hello Jestawoman, thank you for your post. I'm sure it wasn't an easy occasion to detail and you did a great job. I'm very sorry your brother is going through a series of frightening reactions to what sounds to be questionable handling of his situation. To me these sorts of informational "alert" posts are invaluable. This is just the sort of thing you might not get important detail on from a busy hospitall and its staff, and when the problems and reactions come thick and fast, there isn't always time to hit the Internet and do basic research. I'm copying and printing your post for a file I keep for cautionary or suspect treatment. Thanks again, and I'm hoping your brother's condition stabilizes quickly.

best,
Hal61

sweetblood22

Hal61 said:

Thank you
Hello Jestawoman, thank you for your post. I'm sure it wasn't an easy occasion to detail and you did a great job. I'm very sorry your brother is going through a series of frightening reactions to what sounds to be questionable handling of his situation. To me these sorts of informational "alert" posts are invaluable. This is just the sort of thing you might not get important detail on from a busy hospitall and its staff, and when the problems and reactions come thick and fast, there isn't always time to hit the Internet and do basic research. I'm copying and printing your post for a file I keep for cautionary or suspect treatment. Thanks again, and I'm hoping your brother's condition stabilizes quickly.

best,
Hal61

wow
thank you for posting. i am sorry that your brother has had to endure so much. hoping that botox wears off quickly. i wish him and your family well.

Christmas

Thanks for info
Thank you for your excellent advice. My father was hospitalized twice last year (not for cancer). I won't bore anyone with the story, but don't leave anyone alone in a hospital. I wish your brother a speedy recovery and better days ahead. And you're a hero for taking such good care of him.

Scambuster

Damage by Doctors
HI Warrior Woman,

I am so sorry your brother and your family are enduring this catastrophe. While our good Doctors are supposed to help us, they are often in fact the cause of many of our problems. I resorted to natural therapists many years ago and now use both conventional and natural medicines in the blend I WANT.

My Onco man (Chemo Ali) gives not one ounce of credence to anything but conventional treatments and his Chemo. My other 2 doctors (ENT and Dr rads) have the same views but are less arrogant about it.

It is a fact that Chemo is actually not as effective as we think and often not effective at all in our treatments and suggested in many readings and studies to be 20% effective only. As we are all faced with dreaded decisions, we often don't have much of a choice and 20% is better than 0% but the side effects can be very costly as we all know.

if you are able to find natural therapists, it may be worth a try. Your brother has been through the mill and has suffered serious effects from his treatment, so you can not expect they will have a magic wand but they may help. My brother treated a lady who was irradiated 25 earlier for stomach cancer who had suffered terrible issues (lack of bowel control and constant diarrhea ++++ ... yes 25 years). He didn't cure her, but her condition improved 60-90% through natural therapy (he is a Naturopath/Homeopath/Kinesiologist). The dear lady worshipped him, he turned her miserable life around in a matter of weeks. This lady, throughout her entire life never complained about her situation. I know because she was one of my best friends mom.

I saw a team of naturopaths an acupuncturist, touch healers and also went to a colonics clinic before during and after my treatment, and I can swear that these complimentary treatments got me through. I had a terrible time in hospital both post surgery and when I couldn't cope with the treatment and was admitted for the last 4 weeks and understand how easily your brothers situation can happen. I got pneumonia while getting the PEG, had a dud PICC line which almost killed me, was X Ray to near oblivion, and you know the story, and much much worse than I. While they don't mean to hurt you, they (Drs) often do - through arrogance, neglect and incompetence, a nasty combination.

I am both angered and so sorry to hear of what has happened to your family.

I hope your brother finds a way out of his predicament.

Regds
Scambuster