Anyone have a long wait for the Referral appt with the Neurologist?

I'm not sure exactly what to do right now-I'm frustrated and confused- I called the office of the neurologist that I will be seeing to confirm they have received my referral, relieved they had, the receptionist informs me that they are so backlogged that they are booking appointments from referrals they received in January.....I asked what are the chances of me getting in shortly to further my testing's on the recent brain aneurysm that has been found by my GP- she told me that unless it is an immediate life l threatening emergency I would have to wait a few months- my GP's last words to me were, he doesn't think anything could be done if it ruptures, so as reassuring as that was, (NOT!!) I m so frustrated, my husband is trying to be so strong for me, but he is just a mess, knowing we are 2.5 hours from the closet city and will have to travel at least another 15 hours (driving time)to see a neurosurgeon who can perform any surgery in an emergency situation and if referred, it will probably require me to wait another few months for that appt, how did you all cope through the " No Control Over Your Own Life" and not being stressed out and your mind not being a million miles away from everything? I'm trying so hard to stay positive and energetic but the headaches and jaw and eye pain exhaust me!

I don't personally have an aneurysm (that I know of yet! Still have to get an MRI) but my Dad has been recently diagnosed. And yes, he is over the waiting and waiting, just like you. He has migraines that make him unable to do anything at all until the painkillers kick in, dizziness that has him stumbling all over the place, tiredness that is draining him and a list of other complaints that the surgeons are telling him might not even be coming from the aneurysm!! (He also has a blocked carotid artery but the vascular surgeon says his symptoms aren't coming from that either!) So anyway, he also lives 5 hours from the city where he will get the surgery done eventually and he has been up and back to the city countless times getting tests of all sorts done but so far, no actual action. For a while there, we couldn't even get hold of our neurosurgeon to get him to tell us what was going on! The surgeons and doctors see these things more than us so I feel they forget that for us, it's really scary to be diagnosed with a brain aneurysm! We just have to wait and wait and wait until we hear from the surgeons and while we wait, Dad is unable to do much of anything and he's frustrated with it all.

To help myself with my worry, and what may help you, is to read the stories on here that are full of successful tales. I was amazed when I started reading all the stories here of people that were diagnosed and successfully operated on. And then there are people who have unoperable aneurysms and they just live with them. These people here are so strong and I hope their stories help you. And at least they have found your aneurysm before it's ruptured - the more you read on this site, the more you will realise how good that is!! Best of luck.

As a survivor of 3 bleeds, I would strongly advise a second opinion. If necessary, get another doctor who is a specialist in neurologist or neurosurgery.

I know all about the waiting game. After I was diagnosed with a giant aneurysm in my head, the neurosurgeon said I should wait until Christmas was over with (a month away). During that time a member of parliament had a rupture and died in the House of Commons. So it was a month of being on the edge of Eternity. I made good use of the time, however, and underwent conversion classes to join the Catholic Church. Three days before my surgery I was Baptized, Confrimed, and received Anointing of the Sick, all at one time. This was in 1998-99. Good luck to you, on your journey.

David Andrus, Hamilton, Ontario, Canada

If you show up at any emergency room with symptoms with a family medical history of aneurysms it will speed things up. They will have to do an MRI

After I had my rupture, they found two more annies and one was a similar size to the one which ruptured and a month after I got out of hospital I was advised to have it coiled as well but the doc was going away for an extended holiday period and I would have to wait about 6 months for him to return. I guess I just decided it was in the lap of the gods and I just tried not to think about it since it would have driven me crazy to keep thinking about it. The time passed fairly quickly and before I knew it I was booked in for the surgery. I guess I just didnt want to spend that time stressing out and being anxious, and I knew it was bad for my blood pressure which I was meant to keep under control anyway, it was almost like a conscious decision I made for myself to not dwell on it since I didnt want to dwell on it, and I didnt see any point in dwelling on it.

Tosha - I’m going to give it to you straight: you must not wait months for treatment, as a ruptured aneurysm is a very different story from un-ruptured, as any of us who survived one can tell you. Will your medical insurance cover you in the US? If so, there are great hospitals here that can treat you in a timely manner. I will list some: Columbia Presbyterian and NYU (NYC); Johns Hopkins (Baltimore); Mass General (Boston). There are others but these are some of the best ones.

Go to your emergency department and tell them all the symptoms that you have, surely they have to do further investing on you.good luck.

I agree with Paul. I would certainly get another opinion. My case was that after a month of migraines and seeing several GP's, because of the physician assistant at one office I saw a neurologist who sent me to get an MRI. In the middle of the test, they stopped the procedure and I had to go to the Emergency of a hospital near me and my surgery was early the next morning. I found out that my aneurysm was leaking and the doctor who was at the MRI agency said that I would not have lasted long. By the way, my surgery was very successful. Find another neurologist. Don't know where you live, you must have a directory of neurologists or a neurology association you could contact or ask someone, perhaps at a hospital you would use or at a university where research is done, to recommend one you could call. The hospital I was in is a teaching hospital working with a university. If nothing else, getting positive info from the doctor would certainly help calm you down. Don't just sit back and wait.

Monika Hermann, New Jersey, USA

Tosha go somewhere else the complication from a rupture could be very bad . I have a great place to go ku medical center

Things seem to move along more quickly if you go to the ER and tell them your symptoms. I did that and was transported to a hospital that specializes in neuro conditions. Ten days later I got a coil and stent.

Dawna, Who was your surgeon at KU Med? Dr. Ebersole was mine.

Dawna D. Nelson said:

Tosha go somewhere else the complication from a rupture could be very bad . I have a great place to go ku medical center

I think Tosha is from Canada so if people have suggestions for her there…I don’t which is why I suggested US hospitals but she may not be covered for those.

Tosha, either get another neurologist or neurosurgeon or go to the ER. Are you in a lot of pain? If you are you need to go to the ER and if you are not and you can afford the time, get another neurosurgeon. I was
In a similar situation. Mostly calm down say a prayer and listen to soothing music while you wait. I will keep you in my prayers believe it prayer does wonders in my case it was a miracle! The power of prayer is amazing and I not a religious person but The Lord had mercy with me I was in the ICU for 22 days and my family did not know if I was going to live or die I will keep you in my prayers!

is finding another neurologist an option? Meanwhile pray, try to stay in the moment and not let your mind wander from you. Those of us with un ruptured brain aneurysms must focus on every opportunity to enjoy life and when our anxiety takes over we may be missing on an opportunity for Joy. I realize how over simplified my statements are, but at the same time I do remember my new diagnosis 9 years ago and the anxiety which followed. focusing on others and on living a healthy life has helped me control the anxiety. while you waiting for a specialist please try to practice staying in the moment, thanking god and others for every gift bestowed you, however small.

Hi Tosha,

It is never easy coping with things like this, my psychologist says to take deep breaths, it does help. When my aneurysm was found, it was so big my Neurologist said to go straight to the hospital and find a

Neuro-vascular surgeon. I did and had it clipped 4 days later.

How big the aneurysm determine the course of action, what is the size of yours. You can look up on the computer, there is a grading scale with course of action to be taken. Small, sit and watch every few years, a little bigger, watch every year, even bigger, coil, a large one clip and really large, like mine, clip immediately.

I hope this helps,

James

Hi Tosha, I had coiling done real fast on a 13 mm unruptured aneurysm on Nov. 28, 2014. Everything was done within a few weeks in Moncton New Brunswick.

I found out I had an aneurysm in August of 09 my surgery was November 16th of 09

They got in just in time they said it b was ready to blow.

Tosha,

Yes, do not wait. If you haven't had them yet, you need an MRA (magnetic resonance angiography) and brain angiogram. Can your GP order these for you? That would get you moving in a good direction. Then you would have test results to use to put pressure on a neurologist or neurosurgeon who wants to make you wait. Many neurosurgeons in the US will look at your films and that can be persuasive on getting an appointment. Not sure if it works that way in Canada. Get several neurology referrals and take the one that will see you soonest.

Also use the fact that you must travel for testing and surgery: emphasize that you fave few/no options if your symptoms progress, so you need treatment now, when you're stable and treatment will be elective (not emergency). Where and what size is your aneurysm?

Part of your GP's job is to see you get the treatment you need - he should go to bat for you with the specialists. It shouldn't be 'here's your referral, good luck.' All MDs have friends they can call on/lean on on behalf of their patients.

And see what your coverage is for treatment in the US. I know Canadians come here for medical stuff. Most docs will squeeze you into their schedule if they have your testing, know you come from out of town, etc.

Putting pressure on your docs and the overall system does work. And you'll feel empowered, because you are!