Feeling frustrated and getting no help from doctors

[lauralynn]

Hello everyone, I haven't been on here in a long time.  I'm hoping someone can give me some advice on what type of doctor to follow up w/ post AN surgery.  I'm coming up on my 4 year anniversary of my translab surgery (for a 4 cm AN) and I seem to be going downhill in my recovery.  I have had increased facial pain/facial weakness and increased fatigue and the feeling of exhaustion all of the time.  I am much weaker overall and none of my doctors are helping me.  My neurologist told me to take a vacation, my neurosurgeon's office (who orders my yearly MRI) won't return my multiple messages that I have left and my primary tells me to eat the right foods and exercise.  None of these doctors are helping me w/ my issues that have gotten so much worse over the last year.  Has anyone else gone downhill in their recovery...years later?  I had an MRI almost a month ago and I still am waiting for the results.  I can't even describe how horrible I feel everyday and how exhausted I always am.  I thought 4 years later I'd be doing so much better, not worse.  All I know is that if I didn't have God in my life I'd really be a mess.  I will be thankful for any comments or suggestions.  I pray for all you ANer's everyday.  God Bless

[arizonajack]

I had my GK in January with Dr Porter (neurosurgeon), Dr Brachman (radiation oncologist) and Dr Peter Weisskoph (neuro-tologist).

I was impressed with all three but Dr Weisskoph seems to be more people oriented. He's answered emails and he attended the last Phoenix ANA support group meeting.

Consider making an appointment with him to discuss your issues. He's mostly at the Phx office but he's got other offices around the valley.

http://www.aocphysicians.com/locations.html

See if you can make it to the ANA support group meeting 3/26. You might get some other ideas and Dr Weisskoph might be there.


http://www.anausa.org/smf/index.php?topic=18457.0

[lauralynn]

Thx very much Arizona Jack for your reply.  I am very thankful that you told me about the meeting on the 26th.  I'm definitely going to attend and I'm going to see if I can have some friends come with me too.  Do I need to RSVP?  Dr. Syms was my other surgeon and I do like him but I stopped going to his office because I had some issues w/ his staff.  I know in the past he was very nice, helpful and he would always return my calls.  He actually is the one that told me about this site.  I am going to see if I can make an appt. with him.  Thanks again for all the info!

[arizonajack]

Thx very much Arizona Jack for your reply.  I am very thankful that you told me about the meeting on the 26th.  I'm definitely going to attend and I'm going to see if I can have some friends come with me too.  Do I need to RSVP? 

You shouldn't have to RSVP. Last meeting had about 10 people and plenty of extra seats.

Although if you do bring extra people it would probably be a good idea to let Mike know.

Check your PM for his email address.

[millie]

I am glad you found some support, LauraLynn...I too had translab...somewhere on this site is a website for a paper that discusses fatigue due to head surgery like we had.   It was very very enlightening.  Maybe if you enter the words "brain"  and "fatigue" or tiredness in the google area the site for the pamphlet will come up.
Hope you feel better soon...

[mikechinnock]

It sounds like you are not happy. You did not say that the AN was completely removed, or not. I think many things can cause the symptoms that you describe. Since you are getting regular MRI scans done I would tend to think your doctors are on top of it. Do you currently follow a good, healthy diet and exercise regularly ? If you do then you can tell the doctor that recommended that that you already do. Further tests, other than focused on an AN might be in order. It does sound to me that if your neurosurgeon has an established protocol for you, and it sounds to me like he does, then you might be best served by dealing with your primary care physician. Good luck and keep seeking a solution.

[Kathleen_Mc]

you have the "right" to see the doctor who ordered the MRI for the results, this is the neurosurgeon I believe you said.....call his office and get pushy if you have to, say exactly that you have had an MRI and want an appointment to see him to review same and that this is your "right". I would think if this doesn't help ask your primary care Dr. to read you the results of the MRI, my GP just hands the report to me for me to read myself.
It is very frustrating not being able to find out "why" you have declined, if you don't feel your GP is looking at the situation properly speak up to him and if this doesn't work can you get another opinion?
Kathleen

[lauralynn]

Thank you Kathleen for your response.  I did meet w/ my Primary yesterday.  She is looking for a new neurologist for me, she ordered blood work and for once I didn't break down crying during my appt.  She is the only doctor I have that has compassion.  I will keep calling my neurosurgeon's office and request an appt. to go over the MRI.  My primary and I discussed natural remedies since that is what I have been trying rather than all the narcotics that my other doctors keep wanting me to take.  I know I need to be pro active, it's just hard when you feel so lousy.  I am thrilled that Arizona Jack told me about the support group meeting for next week.  I'm definitely going to that.  I will keep you posted on things.  Thank you so much again for your response. 

[lauralynn]

Thank you Millie for the info.  I will look for that on the site.  I am very glad that Arizona Jack told me about the support group, I'm looking forward to that.  I hope you are doing well in your recovery.

[lauralynn]

@Mike...Thanks Mike for your reply.  Yes I probably do sound unhappy.  That is the frustrating part, I'm usually a happy person and anyone around me wouldn't know how I'm really feeling unless  I told them.  Lately though my pain, fatigue and weakness has increased significantly.  I still do have a small portion of the AN.  I had radiation done in 2009.  I did meet w/ my Primary yesterday.  She is looking for a new neurologist for me so I can talk to them about the weakness I'm having.  She was helpful and she is ordering blood work.  We did discuss diet and exercise, I do follow a good diet and I do exercise regularly.  I will follow up w/ her in a couple weeks to discuss the blood work.  I know I will be getting help and I know things will get better, God has a good plan and purpose for this.