ANA Discussion Forum
General Category => AN Issues => Topic started by: InnerGrace on May 02, 2016, 11:22:00 am
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I just got a hold of the doctors office that my ENT referred me to and that's the soonest they can get me in????? What the....??? Is this normal? I know these are slow growing but I can't help but think this thing is going to grow twice the size before then and honestly....I don't think my nerves can wait that long to get in......
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Often times it's hard to see one of the better doctors. I literally got on a plane and walked into John Hopkins with my MRI showing a 4.5 cm tumor. They took me and I saw the main AN surgeons.
However, I had a very large tumor so they knew I needed surgery promptly.
What is the size of your tumor? Normally, not always, these are slow growing so waiting is not normally an issue.
Where are you located?
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Are you having radiation? Surgery? Or just waiting to see a specialist?
Sorry, I don't know where you are in the process or any of your circumstances. So pardon me if the rest of my post doesn't go with your situation.
It is hard to wait once you have made the decision to have treatment. You can use the time to set up your household for your return. If I were to redo my experience I would buy lots of different frozen meals. I had taste disturbance issues.
Teach your Husband/wife/children to do the chores that you normally do.
Find a vestibular therapist.
You may have a litany of problems afterwards (hopefully not). Try to figure out the products you might buy or the specialists you might see for these problems.
In my case, I needed an immediate eye appointment. It was difficult for me to use the computer and look up a doctor that was in-network, etc. It would have been easier to travel down that road ahead of time.
That's how you can spend your time waiting. I know it's not easy. Just take it easy on yourself. You will get through it!
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When I tried to schedule my initial consult here in Dallas area, one office gave an appointment date one month out; when I pushed back and said it's an AN, the receptionist seemed to check with someone else, and they "worked me in" the next day.
So just call back, let them know you need to see them sooner than a month from now.
And you may want to make copies of your MRI CD and send packets to House and/or Keck in LA for their perspective.
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I'm sorry for my outburst... lol. I'm just stressed. Just to update as I am newly diagnosed so this is just to get in to see a specialist, researcher.... I honestly just want answers to try and give me some sort of reassurance so I can relax some... I am in a small town in Pa...but being referred to Dr Hirsh at UPMC in Pittsburgh... Size of tumor is 2.4 cm.
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Thank you, Sheba. I did voice my concern with her and told her that I didn't feel as if I could wait that long. I think I will call my ENT tomorrow and see if they will call and set things up a little quicker for me. I was prepared to go in this week.
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I understand.
Sheba gave the great advice of calling back and telling them your story. I always started my story with...." I have a brain tumor". Gets people's attention. Then you fill in the details so they can help you get your appointment sooner.
Good luck to you.
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I will second Sheba's advice. If you really can't get in until that late - you should send out our MRI to experienced doctors who do free phone consults. I know traveling is not ideal for some people - but it can never hurt to get more opinions on your specific tumor (size, shape, location, symptoms, risks, treatment recommendations). As you learn more about your individual situation, it will probably calm you down and help you feel a little more "in-control" of your AN journey. I live in the DC area, so Hopkins is in my backyard, but decided to fly out to California for surgery, and am honestly so incredibly happy that I did! Good luck!
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Hey there!
When I was first diagnosed, I felt an urgent rush to start seeing doctors right away. I was almost panicked about it. I'm from Canada and while we have incredible doctors and healthcare facilities, waiting to see a doctor is one of the down falls of universal healthcare. Here, specialists will often triage referrals so that the most urgent cases are seen as soon as possible and the less urgent ones wait. I would guess that if they gave you an appointment almost two months away, the doctor probably doesn't think it's absolutely urgent that you come in. I would definitely call the office, tell them your story and ask if the doctor would take a look at your scans as you think you may need to see the doctor sooner than your appointment.
When it comes to making sure you have the good access, sometimes the squeaky wheel gets the grease. You don' t want to be so squeaky that your file gets put at the bottom of the pile, but advocate for yourself in a positive and noticeable way. I found that faxing letters into the Docs offices was really effective. I found that office staff in a doctor's office sometimes acts as a gatekeeper and it limits your access to the doctor. I found that if you fax a letter to a doctor, they will read it and you will by-pass the gatekeepers. Polite and persuasive gets a doctor's attention. Also, the letter is documentary record of your concerns and that's important.
I'm having surgery on the 26th and my surgery will be just under two month from my diagnosis. That's astonishingly quick for all of this to happen in Canada so quick. However, I faxed letters to doctors asking them to look at my scans as I was concerned about the degree of compression on the brainstem and the risk of possible hydrocephalus. My letters were noticed and the doctors told their office staff to expedite my visit. Good luck!
David
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Thank you, David....last Thursday I emailed the neurolgy department at UPMC and they called me first thing Friday morning. I went to Pittsburgh last Tuesday...met both of my docs and they are currently working on scheduling me a surgery date...possibly May 30th.