Brain Aneurysm Support Community

Follow up care after surgery

Hi everyone! I joined here in July but many family matters have been keeping me busy. But I finally have some time to ask you all some questions. Sorry this is so long, I felt some background was needed.

When my husband, Dave, had his aneurysm in Sept 2013, we did not have insurance, so we did not have a family doctor. We did qualify for and receive Medicaid while he was in the hospital, but since he was an inpatient he did not get assigned to a doctor.

When he was released from the rehab center, he still did not have a personal doctor, the center doctor released him and that was it. I realize now that we may have made a grave mistake by not pursuing more medical care after rehab.

He was so determined to just get back to his normal life and put this behind him. Dave hates going to Dr.s and any kind of "fussing" (i.e. taking medications, following healthy diets or routines, exercises, lab tests, etc.)

At first everything seemed fine, but as time has gone by more and more subtle problems have come to light. He fell into a perfect job for him when he went back to work. It was very undemanding and he had very limited contact with people so his problems were not apparent to anyone from work, which is why (in my opinion) he was able to remain employed.

Unfortunately, this company closed it's doors unexpectedly in May of this year, and as he has been looking for work it has become obvious that it is unlikely he will ever be able to hold a job again much less go thru a interview process successfully.

We have now qualified again for medicaid, (since we have no income) and we are ready to pursue medical care, and work toward disability.

We finally come to the first of my questions; What kind of care should we be seeking? Should I just take him to a primary care Doctor? We actually did that last year but we seemed to pull a doctor that was very new and not very personable, (it's a teaching hospital you know) and though he did write a prescription for Chantix to help my husband quit smoking not much came of this appt. and Dave wouldn't go back.

So, should I take my chance again with a rotation doctor, or should I look for someone more specialized or should I just go straight to a neurologist? My experience with neurologists is that while they were fantastic with dealing with the aneurysm, ongoing care is not their thing.

I am hoping the doctors can give me something like a plan of action for dealing with or treating the problems Dave has developed.

Any recommendations or suggestions anyone can offer with be truly appreciated, thank you all for you time and attention.

Punkinbabydoll...welcome....belatedly....You may know/learn that the first category above gets the most responses...

As for your hubby, did he have open surgery or some other; e.g the minimally invasive coiling/ stents/other? Did those doctors provide any follow-up / check-ups for him?

What you select, attempt to select, will so relate to whatever insurance requirements/restrictions you have on your policies...

If you get few to no other responses...you may want to start over in an intro in the first cateroy at the top...

Wishing you best...

Call the surgeon who did the original surgery as soon as you can. Normally there is a six month follow up for at least two years. This is when they do the angiograms and take a look see if the coiling is still good and if the aneurysm has been obliterated. My last one showed my brain as doing all the healing it can in terms of the rupture. This doesn’t mean I get to stop exercising my brain, it’s like a muscle, use it or lose it.

Hospitals around here are going to hospitalists, the PCP in the hospital. Did yours have one? What about the hospital Social Worker that was assigned to the Neuro ICU? Have you contacted that person? The surgeon should have a triage nurse that you can call. Write all the questions done you need to be answered and then start with the Surgeon, then the SW.

I ruptured Nov 2013 and my Neurosurgeon - Dr Stacey Quintero- Wolfe is fantastic. She is also at a teaching hospital. She teaches Neuro Surgery and Anesthesiology, she is one bright firecracker!

I get confused who’s supposed to do what next. I wish the hospital or the Surgeons would give us a brochure on what to do next, like a map of who is supposed to do what, how often we are supposed to be seen, etc. even an Internet link would be helpful…thinking of this, have you checked the BAF website for one? If it’s not there, send them an email and make a suggestion. It’s a maze and we do need some guidance… I see my PCP in a couple of weeks and will ask her. Dr. Q-W did tell us we would have a six month follow up for two years and I’m already scheduled for another in a few months, but no more angiograms! Just the tube for testing.

Good luck and keep us posted!

Hi there,

I agree with your statement "My experience with neurologists is that while they were fantastic with dealing with the aneurysm, ongoing care is not their thing." Again, it's case by case, but go with your gut on this one.

I have a friend who sees a neurologist for her daughter's epilepsy, and she was kind enough to ask him if he could recommend a neuro who specializes in post-aneurysm/stroke care. He referred me to an amazing neurologist. This neurologist is not in my metro-area, I have to drive 2 hours to see her, but it's worth it. Ask around, even if an aneurysm is not afflicting someone, if they like their neurologist, ask them to ask their doctor about someone who specializes in post-aneurysm/stroke care.

However, time is not on your side, and PCP's are used to dealing with disability paperwork. Start with a PCP, and go from there to get that ball rolling. You might have to go through a few doctors before you find one who will work well for your husband.

God speed to you, hang in there. You're in one of the hardest spots right now; no one prepares you for this period where you have to put the puzzle back together, and many pieces are missing.

Where are you located? Perhaps someone on this forum can make a doctor recommendation to you.

-Markelle