So I had my 6month follow-up appointment and my brain mri today from my gamma knife. I couldn't make it past the mri because of the noise sensitivity I developed after my grand mal seizure and subsequent seizures. But I my appointment afterwards I couldn't wait for because of all of my symptoms and all of the docs I was shuffled around about said to ask "my neurosurgeon when you see him". So I finally see him and I start to tell him how unhappy and how my life has changed in the past 6 months since my procedure and that I probably would have opted to not have the procedure done if I had to go back in time. He WALKED OUT of the appointment!!! He said, "Ok we're all done here," took his assistants and left. I said, "You're just going to leave?" He said, "Yes." I couldn't believe my eyes. I waited 6 months to see him, I had SO many questions, all of my specialists said to ask him these questions and I brought up all these symptoms and never got a chance to ask him why! He walked out because he didn't like the feedback on his precious gamma knife surgery???? I have never been so insulted in my life. I am done dealing with these doctors, no more follow-ups, no more mri's, scans, angiograms, nothing. %^&* them all. I bet if I had nothing but nice things to say, I'd still be sitting there in his office.
please try to find a better doctor, avoiding the situation will not help you. I went off medication a year and a half ago, my high blood pressure contributed to my AVM rupture. staying with doctors or clinic will help you live a full life.
I'm sorry, Zilly :(
It's like he's refusing to learn anything or to deal with you as a person. Don't give up on all doctors, though -- perhaps someone here can suggest one for you who is willing to listen.
This isn't the same but I had a 6 week follow-up for my crani. It's a 2-3 hour drive for me. I was 6 months pregnant at the time but would sit for the drive because it was important. I got a call the morning of the appointment. The office was sorry but had failed to put the papers through to medicaid for approval and it wouldn't get through in time for the appointment. I needed to reschedule.
I was 7 months almost 8 months pregnant for my next follow-up. I, like you, had so many questions this time. We made the drive, cost us $60 in gas and stuff that we couldn't afford. Literally, we just got to the hospital. My husband dropped me off in front and I was sitting there in my wheelchair (I'm hemiparetic and was then way too fat to walk) all bloated and in pain because my fat ass sitting for so long really hurt my hip and back. While I waited for my wonderfully slow walking husband to return so we could go in for the appointment. I get a call.... B---- left a message. I don't know how it went straight to voicemail. She said she was sorry but there was an emergency, the neurosurgeon had to leave and had already rescheduled for Monday!!!!! I cried right then and there, all pathetic-like in my dipping wheelchair with my crappy phone barely in my hand. I couldn't make the drive straight home. We had to stop twice because I was in so much pain. I never had my follow-up, that was a year ago. I only think my avm is gone. I have no idea where it was or how big it was. I have no idea how my flap was reattached I have no idea about anything. Why did he say I was no longer at risks for seizures? I had a major one 4 months after the crani and am now stuck on anti convulsant meds...I hate taking pills, now I take 6 a day because of this. I'm always nauseous, always dizzy. Still with the motion sickness and vertigo. My neurologist said my file is too big for him to read it all so he gave "all[my] boxes" to some guy that works in an office somewhere and manages my case from a distance. I feel your pain, girl. My neurologist just gives me presciptions and sends me home. He listens but doesnt really do more than that.
Doctors suck....they obviously don't like it when someone reinstates the fact that they are not as all-knowing and wonderful and important as they think.
That is wrong on so many levels, not to mention unprofessional. Can I ask what hospital? Dont give up hope! Find another Doctor who is more understanding of your situation. I hope you find a great Doctor and the Answers you deserve. Surgeons are known for their arrogance but that is ridiculous. I would also report the Doctor to the hospital.
When the Doctors don’t know what else to do, they prescribe antidepressants. Unfreakingbeleivable. Trust your gut feelings. I never had an appointment with my surgeon. I had a bleed and a stroke, so granted I was out of it. I had all my follow-up appointments with my neurologist. The surgeon just performed the angiogram, the surgery to correct the AVM, and the follow-up angiogram. I didn’t hesitate to call the neurologist and no matter how many times I called, she always called me back. I also called the surgeon and spoke to his assistant. I imagine he would have called me back but his assistant was always able to answer my questions. I didn’t stop there. I would call the head of the interns and ask him questions. He was able to look in my chart and tell me the size of my AVF and other questions I asked. I was looking for this one intern that was so helpful to me but I never found her because the interns change over on July 1.
My husband went to so many Doctors when he was sick. Nobody could find anything wrong with him but he looked and felt sick. I believe in holistic medicine so as a last resort, I had him go to a chiropractor who was able to take all of his existing blood test from the other Doctors and analyze them(I say as a last resort because I had to drag him there). He diagnosed a gluten allergy right away. He has been on a gluten-free diet ever since. One time he accidentally had something with gluten in it and all his symtoms came back so he confirmed the Chiropractors diagnoses. The point is that when the Doctors couldnt find anything wrong with him, they wanted to put him on anti-depressants. It’s a good thing that he refused to take them because he not absorbing any nutrients(that’s why he looked sick). The chiropractor saved his life. Now he is a believer in alternative medicine.
Zilly74,
I've had a neurologist or 2 almost walk out as I was preparing to ask another question, but not a neurosurgeon.
There are some excellent & compassionate drs. out there, so please don't give up & keep up your search for a dr who is right for you.
Take care.
I am sorry to hear about this.. it is frustrating, i know.. but yes, do what u have to do to seek for different doctor who can help you... i'll be praying for you!!!!
Thanks everyone. For my laundry list of symptoms that I have "real concerns" about, I've been to 2 neurologists, an epilepsy specialist (who I love but can only treat my seizures), my family doctor, the hospital, and entire staff of specialists who ran tests of everything you can think of after my grand mal seizures, the eye clinics - (who have ruled out any issues that my visual disturbances have anything to do with my eyes and everything to do with my avm and changes within my brain), who all said to ask my neurosurgeon on my 6-month follow-up and mri of the brain. As far as chiropractors, I have been through all of that - in fact, they are who led me up to the avm. A lifetime of neck and back issues are what led us to the avm. We found my avm at 37 years of age when my PCP pushed for the mri w/contrast looking for the cause of my neck and back issues. We're still trying to push for the mri w/contrast of my spine for a 3rd opinion on a benign hemangioma. So, to conclude, HE asked me to be there for this appointment, they made it for me, I showed up, and that is how I was treated. I think I should have an assistant assigned to me and have a follow-up phone call made to me with all the time I need to ask questions and have them answered in a polite manner. And have the proper treatment assigned to me as well.
Hi Zilly,
Sorry your were treated this way by your neurosurgeon. I had a neurologist pretty much twist my arm to do a VEEG, which is a video EEG that is done for 24 hours in a hospital becasue she thought I had epilepsy.
When the resoults came back, she said that it must be psychological. When I proested, she asked me if I wanted her to say I had epilepsy even though I didn't. I told her no. Then she said she was through with me and said she didn't deal with people who didn't deal in reality.
But then she told the nurses that I could drive home because I might have a seizure. I live an hour and a half away from the hospital. The nurse said she understood and told me they had to tell me that and I culd do anything I wanted after I walked out of the hospital. To top it off, I wasn;'t allowed to was the gel out of my hair that they used to stick the electrodes on because I might have a seizure in the shower, even though I didn't have epilepsy.
The next day I went to my primary care physician who presecrbed Zanaflex and ordered an EMG. Sine I've taken the Zanaflex, I've rarely had tremors, and the EMG found that I had some nerve damage in the sacral part of my spine.
I hope you can find a doctor who can help you as my primary care physician helped me.
Take care,
Debbie
From what I understand, you saw a surgeon. Surgeons are like car mechanics. They fix the car. You said that the procedure had worked so from his point of view your case is a success. You are alive.
Like the other guys said, get a referral to someone else, a neurologist. There is a possibility that this guy just didn't have the answers.
Thanks flower, but at this point, none of them have any answers. I've been from the bottom to the top to the bottom and back up again. I give up.
FIND ANOTHER NEURO...from what youre saying here this guy seems like he has a total lack of sympathy for patients and if so should never see an operating room again...i would lodge a formal complaint and highly recommend you get a new neuro who can help you.
Even in the worst case scenario you were driving him mad he still shouldnt just walk out like that.
Hope it works out for you & God bless.
Sorry for your experience Zilly. As you have found out the hard way, doctors are never taught bedside manner 101, just medicine (especially surgeons). However, YOU are the patient and your health is the only thing that matters. Like Dancermom and Patti and so many others have said, don’t give up. I know it’s hard (probably an understatement there) but there are good, caring doctors out there that are in it for the right reason. Report this guy if it makes you feel better but don’t spend too much energy on it. It’ll all come back on him eventually… Spend your energy on finding another doctor, this site can probably help with that. I know it’s frustrating and doctors seem to have the monopoly but there’s only one you and you deserve better.
I agree with everyone that says "Find another neurosurgen"! There are many great doctors that care about their patients....Let us know when you find a better, more caring neurosurgen! Stay Strong and Stay Positive, Zilly74!
Hi Zilly! I couldn't the words I was reading here and is completely "unacceptable" behavior with your doctor and new doctor. Please do not let this one doctor, whose license should be revoked after treating a patient like this, keep you from seeking out another doctor who would be more than willing to answer and discuss any question that you have.
So sorry you have had such a poor experience with a doctor who should be alot more understnding with his patients!!!
/Michele
I finally had spoken to the Executive Administrator of the Department of Neurological Surgery of Presby Hospital. He had taken my case to "the board" and the have "decided to cut ties" with my "case" and referred me over to someone else at another hospital. All because I didn't have nice things to say about gamma knife surgery. Well, you know what? GOOD. I have actually seen the neurosurgeon more than a few times - he has done my angiograms. And although he could not answer all of my questions, at least he took the time to listen to me and would never, ever walk out of my appointments. He even come back and said he was sorry for hurting me during one of my angiograms. He CARES.
So God-complex doctor failed to mention during telling me how my blood-flow improved through my partial mri he got on my 6-month follow-up that I HAD SWELLING ON MY BRAIN. Yes, this was determined today when I had my appointment with the neorologist (that I was most happy to see again) when God-Complex doctor's Supervisor sent me to see after God-Complex doctor's Supervisor's board decided to cut ties with me. Yes, my new doctor looked at that mri from God-complex doctor from back in July and noticed severe swelling (which is the 4th time since my surgery. But all God-complex doctor could do is gloat about how well his blood flow improved. Didn't want to hear anything else. It's October and it's now being tended to. I'm SO filing a complaint with the AMA.
Dont' know what to say. I'm happy that you're getting the care you need, but I'm sorry for everything you went through. In addition to filing a complaint with the AMA. you also should file one with the agency in you state that licenses doctors.
Take care,
Debbie