Who do you see for other symptoms?

[bern]

I feel like my radiologist shot a massive dose of radiation into my small head and sent me home.  I have so many weird symptoms and pain. When I call, they send me to an ENT or eye doctor, etc  I have decided to let my family doctor treat me for things that develop. He is also keeping notes on my symptoms.  When i call - they tell me - it is not the gamma knife procedure. I say "I know, it is my tumor"  I need help with symptoms such as ear pain, deafness, ringing, and fullness.  No one understands.  Who do you see for things that arise that are new.

[suboo73]

Bernadette,  I want you to know that i am thinking of you tonight, and hope you are feeling better soon. 
[Since i am in Watch and Wait, i have not experienced any treatments (yet.)]

I am so sorry you have such bad experiences going from doctor to doctor and not getting the answers you need.  Until my dx with an AN, i felt like i could go to a doctor by myself, ask questions, and get reasonable answers.  I have been for a second opinion regarding my AN and took my husband with me to the appointment.  It seemed very helpful to me to have an another person there to ask questions and listen to the answers from the doctor.  I should have realized this would be a good idea - I was one of several family members who assisted my younger sister thru 3 hip replacement surgeries and I often went to doctors appointments with her - good or bad. 

A friend of works as a private caregiver and often goes with her clients to doctors appointments, as the patient advocate.  Do you think this might be helpful for you?

I know you will be soon be hearing from others who have experience with AN treatments.

In the meantime, my thoughts, prayers, and best wishes are with you.

Sue
 

[Sue]

Hi Bern,

This is one of the problems with having treatments by specialists in their field. They do their job, and as far as they are concerned they are done.  So people who suffer from headaches have to find a headache specialist, or if you have balance problems you might need vestibular therapist - that type of thing.  The thing is that when  you have radiation, like I did, then the radiation stirs up things and there isn't a lot that can be done, I am guessing, except to wait for things to heal a bit. But that's why this Forum is so great.  You can come here and ask a question to find out if what you are going through is normal or unusual or if anybody else has the same thing or what doctor to see for this and that and the other.  And it's wonderful that your family doc will monitor your symptoms and direct you to wherever you might need.  Other than telling your neurologist/radiation oncologist/ whoever was your primary doctor for your treatment, that  you aren't very happy with their follow-up medical care, I don't know what you can do, other than what you are doing.   

Hmmm, it's late - hope this wasn't too convoluted! 

Sue in Vancouver USA

[Jim Scott]

Bern:

I have to agree with Sue (in Vancouver, USA) that specialists are not often too helpful in dealing with post-treatment (or post-surgical) problems.  They are specialists and focus on the radiation or surgical aspects of your case, do what they specialize in (and are paid to perform) then, as in your case, basically abandon the patient with post-operative or post-radiation complications as 'not their problem'. This stinks but it remains the reality, happily with some notable exceptions.   As Sue stated, there really isn't much you can about that but complain  - and ask for a referral. 

That your PCP is being helpful and supportive is encouraging and I trust this will work out satisfactorily for you.

Jim

[bern]

thank you all for responding.  I just feel like no one understands. My colleagues and family see it and the doctors don't.  I just wish i could find a place that treats mind, body and soul.

[lori67]

Bern,

Maybe you can let the PCP take care of the body and we can help you with the soul and the mind!     Or at least we can try.

I have decided that my PCP will be the one overseeing my care - I just feel like he knows me better and if I need to see a specialist for something, he can use his pull to get me in faster than I could on my own.     In my opinion, too many cooks spoil the broth, so I stick with one cook (doctor) who knows what all the others (specialists) are doing.  If he can't fix whatever problem I happen to have, he'll know who can.  I do see a lot of specialists (too many!!), but they all report back to my PCP.

Hope you find someone who can treat all of you!   I think most of us understand!!
Lori