My 22 yr old daughter had radiation treatment in Stanford CA at the beginning of the year. she had the usual radiation sickness symptomps, but now she has weird symptoms that the doctors can't explain.
She has nausea, migraines, strange cravings, stomach pains, heightened sense of smell.
the doctors did 5 pregancy tests, since her symptoms mimick pregancy symptoms. she is not pregnant.
also her involuntary twitches(arms/legs) have gotten worse.
any help, any suggestions, would be appreciated
Tiny, your daughter's AVM was in the spine, right? Have her doctors also screened her brain for AVMs? It seems to me that an MRI or CT of her brain would be indicated.
Thank you Eileen,
i know she was on steroids for a short time, they made her sick,so she could have some swelling now.
I wish too i could take the AVM instead of her. She was late diagnosed at almost 15.
We live in Philadelphia and nobody would touch her here. Stanford is great but like you said getting in touch with doctors there is almost impossible. Her Radiation Oncologist is as Hospital of the University of Pennsylvania, also a great place but they are the middle man in all of this.
i am glad your breast cancer is cured, i lost my cousin to stage 4 invasive breast cancer and she had 5 young kids.
The radiation treatment is so crazy, since the symptoms can vary so much.I am a laboratory supervisor, but i am learning so much about radiation that i did not know.
thanks for your kind wishes
Thanks Dancermom for the reply
yes, it is in her spine.
We recently had the brain MRI/CT scan of her brain, since we thought it was affected or that she had a clot the traveled to her brain, but those studies were negative.
i just can't stand when the doctors tell us, they have no clue what causes these symptoms or why.
I understand that there needs to be a lot more research for AVM's and the way they are treated, but it is very frustrating.
The doctors will most likely put my daughter on temporary dissability since she is missing too much work, from being so sick and she used up her FMLA when she flew to California for treatments.
I love this site, since there are so many people with much more experience and knowledge about AVM.
Tiny,
I am definitely not a doctor and mine was a brain AVM, but my recovery involved a lot of nausea… I got used to asking for the trash can… lol. I too have a 22 yr old daughter, and she was a junior in high school when I had the craniotomy but I can’t even imagine what you are going through. I wish you the very best with this, but all I can say is that even the good doctors don’t always know everything. That’s why awareness is so vital for both the patient and docs. In the meantime, try to be patient, hear out the docs (when you can get to them) and go with your gut. Remember they are there for you, not the other way around. Hang in there lady ;)
Hi Suzy E
first thanks for the birthday wish on wednesday, that was really nice.
Patience is definitly a lesson we have learned through all of this,
I heard that the radiation is very different from one person to the next.
i have been in the medical field (lab supervisor for Hematology and Blood Bank) for 25 years, and it is hard when you see sick people every day. But when its your child you just want to cure them...
my daughters best friend are toilets and trash cans right now, and she has such a positive outlook thru it all.
i admire all the survivors on this site, for all the things you all go thru, and for all of you guys to be so supportive to us relatives and to each other is really a blessing.
I am very glad i found this site, sometimes it just helps to talk about it.
i think her doctors are frustrated too, since they just want to help...i can definitly understand them
Hi Eileen,
i think the accupuncture idea is great.
i can't believe i didn't think of that.
i do a lot of alternative medicine and herbal healing myself.
i will tell my daughter to look into it, since i believe in accupuncture.
thanks again
Hi!
I haven't seen anyone else on here from my area until now! I had treatment in Pittsburgh at UPMC. I had a heightened sense of smell for a few months after and my neuro explained it could be seizure activity. I also had stomach pains which turned out to be an allergy to gluten. I live right outside of Phila. It took me about 2 months to feel back to normal after my GK