Does your surgeon ask about your side effects?

[Pembo]

I had a check-up with my surgeon on Tuesday. He looked at my Baha site and said I look great. I then asked him why I get headaches in the front sinus if my surgery was on the back of my head. He got all concerned and thought something else might be wrong. I said no I've had them since my surgery 2 years ago, they aren't bad, they only occur when the weather changes and that on the ANA discussion forums it is a common topic.  He of course wants another MRI which I'll do in May.

Then I told him about my facial therapy sessions and he wanted to know more. I said I think you have notes sent from the therapist. (The therapist told me he sends notes after every session and I could see his letterhead on the first page of my file in the doc's hand). I told him what the therapist does and how well it is working and to please recommend therapy to his patients. Then I left.

 
But I realized on the drive home he does not know about anything else that is still going on....my eye that doesn't blink and I use Restasis and have a punctual plug, that I have dry lips all the time, no sensation blah, blah, blah

Does your doc ask about all these things?  Should I have mentioned all of them? Honestly I don't think he cares, he's just proud of his work and that my whole tumor is gone and I'm not dizzy.

[ppearl214]

Hi Pembo,

Great question.  In my case, what I try to do, is compile a list of issues before I go into the dr's office.  I, then, pull out my list in front of him, cross things off as we discuss them and that helps me to remember what I need to discuss with them.  Sometimes they ask, sometimes they don't, so, for me to bring a list helps me to make sure we discuss things that may be easily forgotten.

Many docs are great when it comes up to the point of treatment.. and some lack the post-treatment interest in making sure we are truly fine. In my case, I let it be known that post-treat is more important than the treatment itself... since I/we have to live with all that occurs post-treat and I make dang sure they are aware of it.

Just my thoughts...... Be well Pembo!

Phyl

[krbonner]

In my case, I let it be known that post-treat is more important than the treatment itself... since I/we have to live with all that occurs post-treat and I make dang sure they are aware of it.

What a great way to think about it, Phyl!  Maybe that will get me off my bottomside and get a call in to Barker to discuss the continuing numbness in my hand...

Katie

[ppearl214]

*ahem*

Katie.....oh, Katie... this is your conscience speaking... Katie... call Barker... you must call Barker.......
*walks off giggling*

(hang in there hun... it's time they fix your hand!)
xoxoxo

[Jim Scott]

Pembo:

I'm 6 months post-op (retrosigmoid).  I had a scheduled follow-up appointment with my neurosurgeon last week.  My last visit had taken place in September.  My neurosurgeon - a pleasant man and a very skilled surgeon - asked me if I had any problems - or questions for him.  He performed a cursory neuro evaluation and asked if I had any headaches and had I resumed all my normal activities.  My responses were, respectively: "no" and "yes".  I had only a few questions.  I asked if there were any chance of my hearing improving on the 'AN side' and he said: "probably not, as the nerve was severely damaged by the tumor".  I appreciated his honesty.  I mentioned that I have occasional, intermittent stabbing pains on the side where I had my surgery.  The doctor said this was part of the healing process.  That made sense to me (and was what I had assumed).  We chatted a bit more but that was pretty much the extent of my surgery-related conversation with him.       

My surgeon made it clear that should a problem arise, I should not hesitate to call him - day or night.  I would do so but, so far, the need has not arisen and I trust that it won't.   I see him again in 4 months - with a follow-up MRI.  So far, so good. 


Jim[/color]

[Gennysmom]

Pembo,

I think you should bring them up...my doctor wants to know everything I'm experiencing....facial, cognitive, balance, etc....but he won't ask me "are you experiencing __________", I think, because he doesn't want me to have "intern's disease" or any kind of hypochondria...doesn't want to give suggestions as to what I might be feeling because then I'll feel it.  But he is monitoring closely everything different that I tell him....he will come back around and ask me how those things are going. 

[Pembo]

My doc really doesn't seem to care. I have mentioned things in the past but as long as it's not dizziness or the extreme fatigue I had before surgery, he acts as if his job is complete. He wants to see me every six months and for $25 I get to hear him tell the resident how my tumor was the biggest they had seen in awhile and how I'm fine now. I like the guy but he's frustrating.   I don't think post-op issues are of any concern to him.

At the 6 mo post op visit, dh asked if he thought I needed to see a psych and he didn't even ask why dh was asking that, he just said no.

[Battyp]

Pembo I feel your pain!  I was seeing and ENT, Surgeon, GP, Endo and eye doc after my surgery.  No one was on the same page and it was very frustrating. not to mention I'd have questions and forget when I got back to see the doctor. One of the things I did was I sat down before my appt and wrote down all my symtpoms.  As Raydean had suggested to me I started with the top of my head and went to the tips of my toes.  I faxed a copy to his office the day before my appt and took another copy and handed it to him directly.  That way all my doctors got on the same page and I wasn't forgetting to tell one doctor something that I told another one.  It has helped tremendously with coordinating my follow ups.  Of course I was pretty bad off in comparrison to Jim!  I think for some docs mentality it's if you dont' mention it it must not be a concern. 

Katie I had a lot of hand numbness for about 4 to 6 mos after surgery.  Was told it was a normal part of the healing process. Will be interesting to see what you are told. 

[matti]

I have left my doctor office one too many times with forgotten questions, so I also make up a list. Because of short term memory issues,  I keep a small notebook and when symptoms or odd things strike, I write them down. My doctor's are pretty good about going over my lists with me.

cheryl

[jerseygirl]

GL,

Don't believe the neurosurgeons about "at 1 year post-op this is the best you are going to get". I had my surgery 18 years ago, and I can tell you from experience that for any of us left with deficits, those improve but very slowly. At 2 year post-op you would not believe the difference from 1 year post-op. 5 year is even better, 8 year is better still. At 10 year time this is probably your "new normal". There is definitely hope! I wish I did not believe this statement then! Instead of dwelling on my poor balance, I should have done regular, daily exercise to help the balance and fatigue. My functioning would have been way better. Human body has the tendency to heal itself and with time to feel "whole" again even after the most invasive surgery, it just takes years. Meanwhile, what we can do is give our bodies the best support possible: regular exercise, good food (no junk) and good sleep. I found it made a huge difference in my daily functioning.

                    Eve

[WHWT]

Thanks, Eve!  I really did think this was the best I would be.  I'm glad to hear improvements can still occur in the coming years.  I've accepted this as the new normal, so anything better will be a welcomed surprise!
How are you doing?  You seem to  have a great outlook and good habits.
Happy, Healthy New Year!

[jerseygirl]

Gl,

I have a recurrence and want surgery again, so I am currently deciding on the team and approach. I ask a lot of questions during the doctor appointments. The only question I don't ask is "How long will my recovery be?". At this point I believe I can answer it better than any neurosurgeon. I plan to have surgery in summer so as not to disrupt the schoolyear for my kids. Happy and healthy New Year to you, too.

       Eve

[Battyp]

After having just come from my follow up appointment 16 mos out.  I was told that the biggest part of improvement would occur the first  year and I'd still see improvement in my second year.  I know I'm doing a lot better this december than last which was about 4 mos post op.  Hoping by the end of next year to be able to get back to work after getting retrained as going back to teaching in a classroom isn't an option due to the speech problems I was left with. 

Matti I write my questions down and never fails I walk out the door and think of one I forgot  LOL

[jfl]

Hi, I know what you mean about how it feels like the surgeons don't quite know what's going on w/ side effects- I find that happens quite a lot - they do the job, and all is well so why  would the patient have all these side effects. But every surgery is different and every person is as well. I personally gave up w/ the surgeon b/ c he didn't have any real answers. He is an awesome surgeon and I would trust him if I had to go under the knife again (I truly hope that doesn't happen though) I found myself working w/ my neurologist who seemed to be more helpful and had more ideas of how to deal w/ the pain I have. More alternative therapies. I also have no moisure in my eye due to surgery and tried restasis as well. Didn't work for me. I have to use eye ointment several times daily. But I can tell you that the blinking has come back....it's a very slow progress but it does get stronger. It will be 4 yrs 1/22, and although I still deal w/ chronic paid in my head (no clue why) I can see my facial paraylis gets better and my eye does blink better. Gets droopy when I'm really tired or stressed, but I can see the difference and that makes me feel a little better.

Good luck!

Jill

[redgrl]

GL,
I have had alot of memory troubles myself. Been reading about alot of others having the same. No knows unless they have gone through what we have. Keep the faith. It gets better.