Is it normal to just have one Doctor?

[broken_wing]

Hello everyone! 

A very dear friend of mine has recently had surgery for a very large AN (size of a small orange).  He is doing as well as could be expected for the amount of trama that his body has been through.  I have been helping with care for him along with his family as he is unable to do many things on his own.  Yesterday was his 4 week check up with the Neurosurgeon.  One of the questions we all had was who and where he should go for continuing care (neurologist, ophthalmologist, ENT), especially since he had a shunt put in.  We were told that it wasn't necessary and to follow up with a GP for a physical and to come back in 6 months for more follow up.

This just seems slightly odd to everyone.  The neurosurgeon is two hours away from where we live, it seems as though if there were problems or questions, it would be hard to get them answered or dealt with.  Is this normal? Or do most people only rely on their surgeon for care since this requires a specialist?  Any incite would be very helpful.  Since the surguen has not referred him to any additional doctors...he will not go.  They just keep telling him all the post op stuff will clear up in time.

[Cheryl R]

I think this is a problem for ANers.    Regular GP's do not know awhole lot about ANs.    Even some ENT"s do not also.     I had checked last year ahead of my facial neuroma surgery at a regional clinic to see if a certain ENT would take my stitches out and he refused to do this and said he would not provide care until 6 mos post op.      I had an ENT from the same clinic do this after my first surgery but that dr committed suicide so is not around that 2nd time.                 There was another ENT at the clinic but he was the first one I saw  in 2000 and he told me I had Menieres and I was just anxious when asked if could be a tumor.   No way was I ever going back to him.                 I did then have arranged that my GP would do it.    I did  end up with problems so had to go back to my original surgeon 2 1/2 hrs away anyway so never ahd to use the GP.
   You may have to see in your area if there is an ENT somewhere.     My surgeons office is very good about answering questions over the phone.            Each AN situitation is different and may or may not require much followup in the time between surgeon appts so there is no right answer on who to see.         I wish I had a clear cut  answer for you but it can depend on where you live about may be available close by.                Good luck to your friend.
                                                 Cheryl R

[chelsmom]

Helllo Broken_wing,

I'm sorry to hear about your friend but glad to know you are there looking out for him.  My daughter, Chelsea, also had a very large AN and has a shunt.  Whenever the slightest problem with her health happens her primary care doctor and neurologist has us call her neurosugeon.  Although her neurologist is familiar with AN's he has only had a couple cases and these are not that common.  I'm glad they are honest about this and willing to refer her to the one that really knows her situation.   We are also  2 hours drive away but I'm happy to do it as it gives me peace of mind to have her in the best of care.  I hope all goes well with your friend.  This is a very slow recovery that can't be rushed.

All My Best.....Michelle

[NF-2er]

Hi Broken wing;

   At the two large AN treating facilities I've been to, the Otologist is the head of the treatment team and is the contact person for follow up.
   Some GPs haven't a clue what an AN is anyhow and there's little they could do if something came up, except admit to ER.
   Some time ago on another group, a person who had minimally invasive skull base surgery by Dr Shahinian developed problems after arriving home, over 1000 miles away. The person had to be treated on an emergency basis by a neurosurgeon not versed in AN procedure. Recovery time was triple of what it should have been and the person could have initially died upon the leaking CSF and resultant infection and meningitis.
   I hope I'm not straying off topic here but it seems prudent to stay with that treatment team as closely as possible for as much as a year post op.
   That's pretty hard to do when they are far away but if a very large AN was removed and there was the hydrocephalous, it seems well to at least have MRI, etc. sent to them and have telephone contact.
   Just my usual wordy thoughts and feelings...

   Best wishes in your recovery!!

   Russ

[Jim Scott]

Hi, Broken Wing:

Kudos to you for taking care of your friend and your obvious concern for his well being.

In my experience, my primary care physician (an internist) ordered my 'original' MRI scan based on my symptoms and phoned me with the bad news that I had a large acoustic neuroma tumor.  He recommended a neurosurgeon, but after a consult, I did not choose to avail myself of his services, due to his relative inexperience with AN tumors and a rather haughty attitude from his office staff.

The neurosurgeon I did choose was very experienced and compassionate, liked and respected by other doctors, nurses and office staff.  I never saw an ENT.  Following surgery (successful) I underwent radiation (FSR). The neurosurgeon worked with a radiation oncologist - as a team.  Although I saw the radiation oncologist weekly during the FSR treatments (5 weeks), once I finished, he basically signed off on my case, as I was fine.  I've seen the neurosurgeon many times since the surgery 14 months ago.  He has me undergo an MRI svcan and performs simple neurological tests as well as inquiring about my functionality and well being - and listening carefully to my responses.  My primary care physician also wanted to examine me a few months after my surgery.  He performed a very basic exam and asked about any problems I had (none).  He saw me again, at his suggestion, in June - one year post-op - and wants to see me again in another few months, 'just to keep an eye on me', he claims.  I'll see the neurosurgeon in December for another MRI and evaluation.

What I gathered from my experience is that the surgeon does your follow-up and a GP tracks you for any other problems.  This doesn't appear illogical to me.  The neurosurgeon is the expert ('specialist') and can handle most anything that might arise, while a GP can handle other, non-surgical-related problems.  Although a two-hour drive is a bit much, the phone is almost instantaneous.  I can't speak for others or strictly define 'normal' in this situation but it's worked for me.  At 4 weeks out of surgery, your friend has a way to go to complete recovery but with your help, I know he'll get there.   

Jim

[broken_wing]

Thank you all so very much for your answers.  It really does help to know what others are going though..and I am sorry for everyone who has to go through this...and even though my friend is unable to read (due to vision problems from traumatized nerves) he wants to know how others are handling this.

I guess it does make complete sense that only the neurosurgeon would see him, as no one else seems to have a clue about ANs...it just seems like he had this huge thing happen to him and no one really knows what to do now.  They took it out and sent him home and it is a wait and see situation as to how he heals with everyone around him trying to gather information.  It just seems like there should be more aftercare.