Hurry up and wait?

Went to my reg doctor on Tuesday for a follow up after being released from the hospital. Seemed pointless as she didn’t say or do anything. As of that day I still hadn’t heard from surgeon. Yesterday I FINALLY have a consult appt set for Sept 23rd. Is it normal to wait so long? By then it will be almost a month since this whole ordeal started.

Yes, sometimes there’s a wait. My husband’s case took about a month from diagnosis to operation, and longer if you count the initial referral from the family doctor to the neurosurgeon. Even a day of waiting is nerve-wracking, I know!

If you feel like your surgeon isn’t giving you enough info or that you’re being told your case is urgent and THEN being made to wait, you might want to do a little googling for a doc who you can trust more, to give you a second opinion and maybe take over your care.

But if your tests and your symptoms show that your AVM is stable, your case will naturally be lower on the priority list, since emergency cases get the first spots.

If you haven’t yet, think about searching this site for questions to ask the surgeon during your consult. You want to be prepared with good questions so you know exactly what the plan is and why one procedure is being recommended over another. It’s also a good idea to bring someone with you, since it’s REALLY hard to retain information you hear when you’re stressed. The other person (and a notebook) can help you remember everything afterward.

Wishing you the best!
-J

Yes, the waiting feels like an ‘eternity’ & gets frustrating to say the least!
I echo JH in the option of another opinion. It’s extremely important to feel confident in whomever you go to for care & treatment.
I live in S. Oregon & highly trust the experts @ Stanford http://neurosurgery.stanford.edu/patient_care/cerebrovascular.html.
UCSF is also an excellent facility to consider http://neurosurgery.ucsf.edu/index.php/cerebrovascular_disorders.html.
Best wishes,
Patti

Wait time depends on both severity of the case AND how much you push to be seen.
My timeline:
On day 5 of a migraine coming & going (and Excedrin + Maxalt+ Fioricet offering no relief at all on day 5),I went to the ER, was given a shot & sent home. That was April 12
April 13–went to family doctor, and my husband insisted on a CT scan
April 13–CT
April 14–my husband calls me as the school day ends to get a sub for the next day
April 15–MRI; family doc’s office is closed on Friday afternoons, but he calls from home after receiving the MRI report & tells me to go pick up a disc with my scans & head to the ER & asks if I have a neurologist. Doc @ ER consults over the phone w/ my Father-in-law’s neurologist & they send me home @ midnight.
April 16–family doc calls to check on me & starts researching neurosurgeons in the Houston area. He refers us to Dr. Kim.
April 16/17–my husband looks at the scans on the disc, chooses a couple he thinks are the “best” & emails them to Dr. Kim’s assistant.
April 18–Lawrence & Forencia (Dr. Kim’s assistant) swap phone calls until I have an appt–for the next day.
April 19–initial consult w/ Dr. Kim. He wants me to have an angiogram, but those are done on Thursdays & I need bloodwork done first, so we schedule it for April 28
April 27–Dr. Chen’s assistant (Dr. Chen will perform the angio) calls to say they just had emergency arrive by ambulance & Dr. Chen will have a 12 hour surgery, & asks me to reschedule for April 29
April 29–angiogram
May 10–appt w/ Dr. Kim to discuss treatment. He wants to do Gamma Knife 1st week of June. My last day for the school year is June 3, so we schedule GK for June 8.
June 8–GK–& they tell me that day they are concerned about an aneurysm & want me to go back for a GK follow up & discuss the aneurysm.
Sometime in June–go back to Dr. Kim’s office to discuss aneurysm. He is worried about it rupturing & wants to do a crani. He wants it to be at least 4 weeks before I go back to work. Teachers are to go back mid-August, but 4 weeks ahead of that is during his vacation, so he schedules my crani for the day before he leaves for vacation
July 6–crani for the aneurysm…and a 2nd one that was hiding in the scans is visible when they open up my head & this one was bad; they clip both
July 20–followup for crani & suture removal
Dec. 28-I am scheduled for a 2nd GK, thankfully they are able to do it during my Christmas break so I don’t have to use sick days. :slight_smile:

Hi Maria,

With my case, it looks as if the wait time is becoming the norm. I was released from the hospital on 7/20/11. I haven’t seen a DR since then (and they did not want to see me) until my next MRI and follow-up appt on 9/15/11. This is after me calling the nurse every other week to explain that the symptoms were not getting better, some worse, some better, etc. In my case, the explanation I received was the DR wanted the brain to heal a bit, absorb some of the blood, and do a repeat MRI to see what we’re dealing with, and what kind of symptoms I would have 2 months down the road. It has been a very frustrating and anxious wait, and I haven’t been happy about it at all (smile). The only way they wanted to see me before my appt is if I had a sudden on-set of changes/complications. I ended up in tears on the phone with this particular nurse, out of frustration, as I felt they just did not understand how I’m feeling. I had even put everything in the works for a 2nd opinion, but then they finally set an appt for me.

My prayers and thoughts are with you. As much as it has bothered me to be bothersome to the DR’s office, I have had to play the part of a squeaky wheel.

I pray your appt goes well!

Crystal