ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: petgroomer on December 09, 2009, 10:00:24 am
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I just read the report from my MRI and the doctor states in it:
"Patient experiencing ear pain, muffled feeling in her ear and coarse voice. I would say this is NOT associated to her schwannoma."
He goes on to say that my schwannoma is 5.6 cm X 4 cm and that I am having no symptoms from this tumour.
IS HE KIDDING ME???? Unless I had this forum to read, I would have thought I was going crazy with some of my symptoms.
Anyway, we ARE our own doctors. >:(
On a lighter note,,, Santa is coming soon!!!! wooo hooooooo Maybe he'll bring me a new vagus nerve!
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It's the least he could do. Santa, that is.
Did you call your doctor? Better yet, mark it up with a long list of symptoms and fax it back to him. Cross out all his errors. Can't imagine how that happened.
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Unbelievable it sounds, I know.
I am now going to see a doctor in the states if all goes well with OHIP out of country coverage. I am on my last step.
Stanford actually gave me a date 3 weeks from now for surgery and stuff but I'm like,, WHHOOOAAAAA, gotta hear from OHIP first!
The prelim visits AND the 4 - 5 day CK surgery estimate is $200,000 plus I have my hotel and air and food ontop of that (would have drinks ontop of that too but not sure they want me drinking inbetween sessions.. lol)
Have to wait to see what all will be covered. :)
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Rhonda ~
Your doctor's notations on your MRI report are definitely frustrating. No symptoms? Although many of the folks posting here (like me) were fortunate to find doctors that were cognizant of AN symptoms and surgeons who were well-experienced in treating ANs, the ignorance of some physicians when it comes to cranial tumors, anyway, is astounding - and occasionally near-tragic. It appears as if you've encountered a member of the latter group. Well, I hope that you're able to receive governmental approval (via insurance coverage) for your treatment at Stanford. You've earned a break.
Jim
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Rhonda,
Fingers (toes, arms, legs, eyes, etc.) ALL crossed for good luck so you get approval and may seek treatment at Stanford.
As Jim said, you have indeed earned a break.
Prayers all around.
Sue
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Here's the best. lol
My own family doctor, has told me I have to fill out the form for Stanford and then give it to him to sign. As he does not know what I'm wanting to get done.
I tried to explain to him what CK surgery is. I even took him 4 pages of info ect... and he STILL thinks it's red light laser surgery!!!!!!! ARRRGGGHHHHHHHHHHHHHHH
Obviously he has not read the info.
(all I can do is shake my head and.... have another glass of wine while I'm in the watch and destroy status... lol)
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When I told my primary care physician that I had had my acoustic neuroma resection surgery, she said, "Oh, did your hearing get better?" I had to explain that No, it got worse. Actually, they cut the nerve. Hmmm.
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Rhonda
Montreal has CK...Ottawa got the ok for a machine and is now just waiting for funding. My neuro said it should be up and running in 6 months...dont know where you are, but good luck in trying to get OHIP to pay as we have the service here in Canada. I'm waiting for my next MRI to decide on CK...If not in Ottawa by then, then I"ll go to Montreal...Actually, I think its in Sherbrooke Quebec
JO
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Here's the best. lol
My own family doctor, has told me I have to fill out the form for Stanford and then give it to him to sign. As he does not know what I'm wanting to get done.
I tried to explain to him what CK surgery is. I even took him 4 pages of info ect... and he STILL thinks it's red light laser surgery!!!!!!! ARRRGGGHHHHHHHHHHHHHHH
Obviously he has not read the info.
(all I can do is shake my head and.... have another glass of wine while I'm in the watch and destroy status... lol)
Oh my, that is a scary story :o
Mark
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I have been in contact with Quebec 4 times,, to no avail in finding answers.
I am aware of the machines coming to Ottawa and Hamilton, however, I STILL am crossing my fingers they cover me in the states.
My schwannoma is almost 6 cm X 4 cm, has grown up into my jugular foramen and has displaced my jugular and carotid arteries. I HOPE they feel it is too big for them to work on. The amount of years experience Dr. Chang has, has me wishing I will be accepted for out of country.
That is my only hope!!!
I appreciate the fact they have the one machine here in Canada, however, I am reluctant as they have only had it a year and I highly doubt they have worked on a vagal (10th cranial nerve) schwannoma. There are only 150 documented cases of vagal schwannomas.
Dr. Chang has only performed CK on approx. 13 of them (vagal's). Being he specializes in CK on schwannomas, it's not a large amount. I am assuming other places have less. Of course when I call Quebec and ask them, they won't find anyone who can speak english, AND when I did finally have someone call me back, they would not give me any info on the CK machine. I obviously don't speak french either so it was just as frusterating for them too.
CROSSING MY FINGERS!!!!
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Rhonda,
I think you can make a pretty good case that your tumor is indeed very hard to treat. After all you have already had all these neurosurgeons saying that they can't do anything about it. One of them should be able to write a letter to OHIP explaining how unique your situation is. And I don't think they can deny a claim based on a machine that could eventually be installed in Ontario. Your tumor is already very large, and one would argue against waiting for longer.
In your place I would insist, I would get as many letters as possible and I would make a big fuss. You can win this.
As for the MRI report that frustrated you so much, you should keep in mind that radiologists can only describe what they see, but they are not in any way qualified to make assessments on symptoms etc. In my report the radiologist was mentioning tic douloureux (aka trigeminal neuralgia), that I never had. They can only speculate based on the image that they see.
Marianna
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Well done Rhonda! Keep on pushing. Let me know if I can help. I don't know how, but you never know!
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Hi Rhonda,
I agree with Marianna, if the treatment cannot be done here in Canada your current Specialists can definitely write a letter to explain the reasons why it should be done outside of the country and provide existing MRIs so that they have objective findings to support the information on the letter.
Vivian