SAW DR # 3 AN NOW HE HAS REFERD ME TO ANOTHER DR UGH WHEN DOES IT END THEY R NOT CALLING ME BACK I KEEP CALLING THEM ALL THEY SAY IS ILL CALL YOU BACK WITH AUTHORIZATION TO MAKE AN APT......I FEEL SO LOST CANT SLEEP CANT EAT FEEL SICK ....IM SO DEPRESSED AN IDK WHAT TO DO NEXT ....ITS LIKE AS IF NO ONE CARES...I KNOW BE POSITVIE BUT WHEN ITS ALL GOES WRONG HOW DO U TURN OFF THE FREAKING OUT CRYING FELLING ITS NOT GOING AWAY AN I JUST FEEL SO LOST ............DONT KNOW WHAT TO DO WHERE TO TURN ....MY HEAD HURTS I FEEL SICK NO SLEEPING MAKES IT ALL WROSE MY THOUGHTS R RACEING ON WHAT TO DO WHAT DO I DO IM SO CONFUSSED UGH PS HATE U AVM YOU HAVE RUINED MY LIFE
IDK HOW TO KEEP CLAM AN STAY THAT WAY IDK HOW TO DEAL :(((((
Hi Tricia,
Understand completely how you feel in not getting answers in the time that you desire them. I would offer two suggestions.
1. Get to a competent counselor to help you work through the (rage, depression, anger, doubt, emotional roller coaster, whatever) that has shown up as a result of your AVM. Your feelings are REAL, but a good counselor should be able to help you identify them and at least try to get them in check. Dealing with an AVM is not a quick fix usually, so having an emotional cheerleader on your team is helpful.
2. You might try skipping all the intermediate medical people and see if you can wrangle an appointment to UCLA or Stanford to their AVM specialists. They deal with the worst of the worst of the AVMs. You want the best team to work on you anyway, so might as well start at the top if you can.
Best wishes,
Ron, KS
Hi Tricia. I think it is time for a primal scream and I will join in with you. On the count of three…1…2…3 AAAAAAAAAAAUUUUUUGH! Feel a little better?
THANX RON ILL LOOK INTO IT AN SEE WHAT I CAN GET DONE WITH SEEING A specialists THANX RON
OMG AAAAAAAAAAAAAAAAAAAUUUUUUUUUUUUUUUUUUUUUUUUUUGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
THANX BAEBARA SOMETIMES I FEEL LIKE IM SCREAMING OUT AN NONE NOTICES
hello Tricia
I had some issues waiting for the same issues and I called the insurance myself and found out I did not even need the autho- So try calling your insurance and I totally agree with Ron and try to get into Stanford they have three great doctors Dr Marks worked on me and I know also there are three doctors for AVMs and fistulas at UCSF
Keep us updated
Angela
Hi Angela,
When we were at Stanford, we were treated by Drs Marks and Steinberg. At the time, they were co-directors of neurosurgery. I liked having the top dogs working on Chari! Funny little asides: When we met with an anethesologist, she warned us that even though the operation was scheduled at 7AM, another surgery might bump her time back. Then she flipped through Chari's records and saw that Steinberg was doing the surgery. She said "Oh, I see Dr Steinberg is doing your surgery. He won't be bumped, so you will start at 7AM..........." Nice.
Best wishes,
Ron
Hi Ron
I too liked having the top dogs at Stanford I am still seeing the director of the Stroke dept who is wonderful and I did not get bumped from my 7am surgery but mine took so long 7 hours. Your advice in the past gave me so much comfort. I am back to work full time I do still have head pain but I am dealing with it. When I went back to work they demoted me and that was hard since they did not give me a chance...I did get a lawyer and he said they are getting away with it by paying me the same. I was in a tight spot because we needed insurance and my husband quit his job to take care of me during my stroke and then I had the fistula due to the stroke blowing up one of my transverse veins. Anyway I feel blessed and my husband starts a new job tomorrow.
Thank you again for sharing it really helped me
Anela
Thks Angela,
It's always nice to hear that one's words might have actually helped someone...That and the great pay is why I hang out here (big grin--as you know NONE of us are paid!).
It is really really hard for an individual to win against a company for discrimination in my opinion. Unless the company just wants to settle to make it go away, they can tie it up in courts for years (while you get nothing). Win or lose, it might make you un-employable. No matter what the court orders say, it's hard to keep a lawsuit quiet, and future employers don't like to hire potential "problem children".
As a 1st level manager in a nationally known company, I once had an employee threaten me physically. It took awhile, but he was soon fired. A few months later, I got a call from someone he had applied to, and he had given MY name as a personal reference. Obviously, he hadn't asked me first......... Now legally, I had to refer this person to the HR dept who would confirm only the person's date of employment with us.
But when he asked me, I was so taken back, I broke out laughing! "You're kidding me, right? He gave you my name as a personal reference?" I did the legal thing then and referred him to HR, but I'm sure the caller got the message loud and clear.
Best wishes,
Ron, KS
YES WE DO AN THANX NINI NEEDED TO HEAR KEEP ON YA KNOW
Hi Tricia,
I would listen to Ron on this (in reference to his first comment). 3 years ago I went for counceling to help me deal with my health degrading and the dr. run-around I was getting. She (my dr.) helped me a lot. It was well worth going. I'm goin to suggest that you consider it. We all need some help every now and then...:)
I'm going to second or third what the others have said. You need to find an AVM specialist and see that dr. Don't give up. When my problems fist started (many years ago), I was misdiagnosed by three drs. Then I took matters in my own hands and I called Pittsburg Presbyterian Hospital. They have an entire team of drs. who specailize in avms. I eventually had it treated.
Sometimes we need to be our own advocates. Many drs. forget that they are working for us. Not the other way around. :)
Ben
Tricia - Please speak with a counselor to talk about how you are feeling. Maybe this is just a temporary emotion, but for your sake and your adorable daughter, you need to take care of yourself emotionally. Also, I know you have a very specialized health care plan, so maybe you can call them and make sure they understand about an AVM and your need a real specialist. If you need help setting any of this up, ask a friend or family member to help you. Hugs!!
Sometimes the treatment is worse than the disease.
Perhaps you need to take a short vacation from your treatment and regroup. Being mentally taxed will only exacerbate your AVM symptoms and will also cause you to stop taking care of your overall health.
Enlist support from family and other survivors if possible. Talk to a therapist. The best thing you can do is stop focusing on the AVM and take care of your spiritual, mental and physical well being.
I put "treatment" on hold and brought my children to Maui. I know we will have to deal with the remaining AVMs and HHT at some point, but right now we are relaxed and enjoying life. After years of fighting with insurance companies, dealing with doctors that don't follow up or make bad treatment calls, I was so burned out I was too sick to function. The little one had been through over 20 MRI's, gamma knife, 4 angiograms and countless other procedures. The other kids had also been through multiple MRI's, gamma knife, and facing more. They were depressed, fearful, miserable. I know it's a controversial decision but I don't regret it at all.
I hope your family is having a wonderful time in Maui, Christine. I very much understand your decision.
yes i have a apt with a psychologists tomarrow an thanx i tink i do need to tell them something to hurry this thing up
ur so right
i wish i chould take a break dont have the $ to go on a vacation wish i chould just run away
Tricia,
I see you live in Lake Elsinore. I used to live in orange county and my mom lives in Lake Perris. There are lots of inexpensive, free and fun things to do in SOCAL. You also have a beautiful daughter. You need to stay mentally fit for her. When you feel thoughts of despair creeping in grab the baby and do something fun with her. Go for a hike or a long walk. Exercise really helps to calm the mind, heal the body and the spirit. It's as close as I can get to meditation, lol.
Another thing you can try is putting your frustration on paper. Somewhat like venting on this board but you can really let loose. It's easy for me to say don't focus on the AVM but I know there are times when that isn't possible. For those times I either have a good, violent cry or I write. After purging I feel better. I think time has helped me to realize that it's going to be ok, I am human, I can only do what I can do and that by staying positive and relaxed, I can accomplish more.
I came to Maui a poor single mom with 3 kids, 2 with active AVMs, and no job. God has provided for us, kept my kids alive, happy and healthy.
For me, in order to change my mental state I needed to change my location. Some people don't need anything so drastic. Find the joy in your life and hold tight to it :)
Then it will become easier to deal with the inevitable frustration of the AVM, doctors, insurance co etc...
Dancermom- Thanks ;) it's nice to know there are moms who understand.
Hi Ron
I know some people are very strange I had a few myself at work but never asked me for a reference. That is so bold! I dont want to sue I just want to work. I could of stayed out for years and maybe even for the rest of my life. I got approved for social security because my long term disability insurance made me apply. Anyway I hope it does not have to go that route and I know I will have a tough time finding another job in this market. Luckily this guy has not been my boss for a long time. I would go back to school and maybe go into a different area, Yes I know no one is paid and its wonderful all you moderators are here on the site. I was so scared and freaked out and felt lost. This site and you and your wife's story gave me hope and confidence I was making the right decision. I feel the same if I can help one person and I have met so many wonderful people on the site.
God Bless
Angela