I have waited one year to see my neurologist. I had my CT angiogram two weeks ago and was to see him in two weeks. His receptionist called today to tell me he was cancelling appt. the angiogram showed no change, no bleed , no aneurysm. I guess i should be happy. but I had so many questions to ask him. I want to know so much. I have been researching for one year and now i don’t even get to see him. He is the best around and i guess he is very busy…too busy to see me. Perhaps I can write a letter. I have thought about this avm for every day since i was diagnosed and cannot stop thinking about it every time I take seizure meds. I had so much to ask. I am a little down right now. My son says I should be happy there was no change. I am but I still wanted to talk about CYBERKNIFE treatement. He thinks leave well enough alone for now. He is the doctor.
Any comments on my dilemma
thanks lianne i am going to write him or email him my questions. you are so right. i have waited one year and i am the one paying him for a service.
Margy you call them and say you want aappointment to speak with the doctor. Don’t let him do that to you . That’s wrong , he has to know the appointment means alot to you . I guess you can tell I’m mad ; another year is just to long to wait for answers !!!
she said he is very b usy…probably going south on vacation. i am writing him and if i cannot be rebooked than i will have to have my GP find me another neurosurgeon in Toronto maybe. They have an actual AVM clinical hospital in Toronto …i may go there. I cannot wait one year …this past year has been hard enough.Especially with all the research I have done. I am still scared every single day
Margy- I would definately send an email. Even the very busy doctors can make time to open an email and respond. I have found that to be very successful in communicating with docs. I’m sure his email adrs will be online. You may have to do a little searching to find it. Heck, if you can’t find it, send me his name and I will track it down for you!!!
Hang in there. I would be disappointed too! I bet you have been on pins & needles for the past two weeks just waiting, and then to have it canceled. Total bummer.
Have some cookies, or ice cream and wallow in your pity for just a brief moment…then find that email!
Shalon
Hi Marge,please call and set up an appointment,does not matter how busy they are,He is your doctor and should respect your wishes and see you soon,Call wheny ou get the chance ok,Im happy there is no change ,that part is good news,but get in soon ok,you will feel much better!! caroline
Hey Margy…def try to contact the doctor yourself…let him know that you have a lot of questions and make sure he makes the time to answer them! Don’t give up.
<33Christine
If he doesn’t have the time to answer this long list of questions, get a 2nd opinion. They are paid well & will take the time to answer everything & then some.
We in UK always have to wait a long time and then very rarely ever see the actual nuerologist unless, as I found out eventually, pay to see them privately then it is a few days! It does cost about £150 here in UK but I think it is worth it to get answers quickly.
Kevin
OH this makes me furious.
First of all, whether the AVM has changed or not is irrelevant to your situation and how you feel! You need to know if there is ANYTHING that could possibly be done so that you can possibly work towards being AVM free. And then it is YOUR decision whether you proceed or not with any treatment.
Just because this ONE doctor thinks it should just “be monitored” does not matter. It is one opinion and frankly, I question the judgement of someone who could be so callous as to have his receptionist phone you and CANCEL an appt. that you have been waiting for, for so long. He doesn’t even KNOW if you have had any other symptoms! He can’t make a clinical diagnosis without seeing you, the patient and going thru all the simple tests that they do like arm strength, etc. and asking a list of questions. They do this for my son every time we go!!!
MARGY- FIND A NEW DOCTOR NOW.
I live in Ontario. My son is treated by a wonderful, compassionate and very thorough neurosurgeon- Dr. Julian Spears at St. Mikes’ Hospital in Toronto. He referred us to that AVM clinic at Toronto Western that you mentioned and my son had Gamma Knife there by Dr. Schwartz. Go back to your regular family doctor, take all the information which is available on the AVM Clinic website: http://www.uhn.ca/Clinics_&_Services/clinics/vascular_malformation.asp http://brainavm.uhnres.utoronto.ca/index.html
and demand a referral to get some answers. If you can’t do it by yourself, take someone with you who can help you express your concerns.
You cannot keep living with these questions and fears. AND you need to be monitored by those who have devoted their lives to treating AVM’s.
I to wouls say no no no I will still ahve my appt thankyou!
I am leaving town for a few days but when I return I am going to see my own doctor and explaining things and he had better refer me to Toronto. That is my right. He said before how u go to area u live in but to me this is different. \Toronto is more advanced. Thanks so much to everyone for giving me strength and confidence to stand up for myself and thank you so much Joy from Ontario for the great information on Toronto. Dear friends on this site, you are all wonderful.
Unfortunately I am afraid to say anything negative to a doctor for fear they will treat me wrong or not treat me at all. They are in a league of their own and answer to no one. Believe me I know I worked for one. And he did what he wanted when he wanted. And never wrong. You are to look up to them and really not question them
Margy, I get that it is very difficult to stand up for yourself. Much easier to do for someone else and that is why I think you should take someone with you. All you are doing is 'leaving no stone unturned" when it comes to how you can get some answers. I think if you say that you did some research and found the AVM clinic and would like to go there, your doctor can’t disagree with you! It IS your right!
And always remember, What do you think that doctor would do if it was HIM or HIS LOVED ONE? I think you know the answer. No, it will NOT be easy but you just have to do it.
I was never afraid to ask questions at St. Mikes or Toronto Western. They never made us feel uncomfortable. They seemed to know it was a huge decision that we were making. I think you will find the same.
Margy, I agree with Joy, if you doctor does not respond to your e-mail to your satisfaction, definitely find another doctor! I felt that way about my neurosurgeon. Once I told his secretary that I’d had it with being ignored, he called me himself! lol
Margy, I agree with Joy, if you doctor does not respond to your e-mail to your satisfaction, definitely find another doctor! I felt that way about my neurosurgeon. Once I told his secretary that I’d had it with being ignored, he called me himself! lol
Dear Margy,
Sorry to hear about your predicament. I’m not quite sure how the Canadian medical system works, but we currently have a Canadian oncologist working in Ireland trying to rearrange our oncology services, and a central part of his strategy seems to be to free up clinic appointments by putting stable patients like yourself on the long finger, thus freeing up more time for new patients, complicated patients etc etc.
This is obviously of no comfort to you, and I do feel that you should make contact with his clinic again. I think that if you have questions for him, it is reasonable for you to see him , if only to allay your fears. May I suggest at this stage that you have a written list of your most pressing questions; there is nothing worse ( for both the patient and the doctor ), than when someone comes in and draws a sudden blank, leaves the room 5 minutes later with only 1 of 20 questions answered and then leaves dissatisfied. This happened to me as an AVM patient ( and was really annoying), and seems to happen to me in my job on a daily basis.
I’m sure that your GP may be able to answer some of your questions; others, he may pass the buck on, if only in an attempt not to misinform you. Some of your questions( and I’m sure your biggest one will be " what do we do now ?"), your neurologist will try to answer, but , unfortunately for us as a group, our collective affliction ( i.e AVMs) remains very much at the periphery of medical science and knowledge. We must remember that most of us ( me included) would have been dead from our AVMs, had we lived with them 50 years ago. A lot about the management of AVMs is conjecture; we just don’t know what is the right thing to do.
I hope that everything works out for you anyways. Just talk to your neurologist’s receptionist, I’m sure that they will be happy to see you again before next year. I think that your request is reasonable, and I’ve agreed to see people with an awful lot less to worry about, believe me. I’m sure your neurologist won’t mind.
Which brings me to my final point. Why is there so so much antimedical bias on this site? In fact, no need to answer that one; I think I know already.I’d be in the wrong job if I didn’t. Still, sometimes people wonder why their doctor doesn’t care, give a damn etc, etc. They read these sites too , you know, and whilst at times they can be uplifting, at other times, they make doctors realise why medicine is no longer a vocation, it’s just a job.
Yours,
C
Hey Margy thats rubbish that he cancelled, send those questions off se how u get on. He’s your doctor not god, your paying good money for this
How awful they’re making you wait for so long! I’d go nuts if I had to wait for such a long time and then get no information!
Fair enough, doctors are busy people… but yours sounds like he’s just lazy!
All the above tips are great, I have nothing else to suggest… I hope things will turn in your favour soon and you’ll get all the answers you need. Hang on in there! Don’t give up!
Hi Margy, my name is Bev & I am from Ontario as well. My nuerosurgeon is Dr Gentili out of TO Western Hospital…I would be very upset if his office every cancelled an appt. on me because there was no change…I understand your sons point of view that yes u should be relieved etc. but part of seeing the Doctor is also the feeling of assurance we receive from hearing straight from them!! I hope to chat with u sometime I just joined the group today…I had my surgery in April to remove what they thought was a Cavernous Malformation from the Cerrebellum area of my brain, turns out the pathology report has confirmed after examination of what they removed it is an AVM & I have another in the left temporal so yes I understand ur worry & fears…I am waiting to hear when I go for an angiogram …take care Margy and find comfort in knowing we r not alone…reach out anytime u feel that worry too overwhelming!! Light & Love sent ur way!