Concern from a caregiver.................

[caringfmlymber28]

My mom had a trans-lab surgery in 2008 to remove her AN (not sure size), and has just recently been making comments about how she thinks it could be back.  I've watched my mom suffer through headaches, get scared because she lost her balance & fell, and now thoughts of thinking her tumor is back. 

I'm having a problem with the fact that she has not made an attempt to contact her Dr. to find out what's going on.  If I was in her shoes, I would be on the horn to my Dr. to see why I'm having these problems, treatment options for what can be treated, and answers to why I feel like my tumor would be back.

I'm hating myself for thinking these thoughts, but I'm worried that she's not going to her Dr., and just complaining & crying to the family so we'll give her attention & pity.  I love my mother to death, and would do anything for her, but making her call her Dr. and set up an appointment is up to her.  I'm afraid that it's starting to go deeper than just the post-op physical problems she's having.  I'm afraid that she needs more mental help than maybe I can give her.  Does anyone have any advice, or has maybe been through something like this with a family member?

[lori67]

Hi Caring and welcome to the forum.

Sounds like you've been under a lot of stress with your mom's AN.  Caregiver is a hard job.

You didn't mention when the surgery was, but depression is quite common afterwards.  My doctor called it "a normal reaction to a completely abnormal situation" - I think that sums it up nicely.  Sometimes people need a little help to get over the hump - either talking to a therapist or taking a mild antidepressant.  There's a lot to deal with after a surgery like this and there's nothing wrong with feeling overwhelmed.  I guess that would go for the patient and the caregiver!

Unfortunately, headaches and balance issues are not unheard of after translab, but it is very unlikely that the tumor is back.  Can you call the doctor and explain the situation - maybe he can offer some suggestions?  I know I've had to call my parent's doctors to make them aware of situations that I thought needed attention.  The doctor pretty much assumes all is well if he doesn't hear otherwise.

Lori

Good luck.  I don't envy the situation you're in, but I'm sure your mom and the rest of your family are grateful for your concern.

[leapyrtwins]

Caring -

lots of doctors have their patients follow a certain MRI schedule post op.  For example, my doc has me going for MRIs annually.

Has your mom had any MRIs since her surgery? 

I agree with Lori that it's unlikely your mom's tumor is back (regrowth is typically only 1-2% post op when the tumor is removed entirely through surgery).  However, it's not impossible - and we are not doctors - so I think I'd try to persuade your mom to call her doctor and schedule an MRI.

Maybe if you tell her how concerned you and the rest of the family are, and stress how much you want to be able to put everyone's mind (including hers) at ease, she'll agree to contact her doctor.

Good luck,

Jan

[sgerrard]

Hi,

As a moderator, I guess I feel inclined to make a pitch for the forum. I think your mother would benefit enormously from discovering that not only is she not alone, but there are lots of nice people here, some with similar post treatment issues, who are more than happy to discuss issues, share tips, and vent frustration as needed. Two of the nicest ones have already responded to you.    If she is not computer savvy, you could still sit her down and show her yourself. As the saying goes, misery loves company.

Medically, she should be in contact with her doctor, and getting appropriate follow up care and MRI scans. If she is suffering from depression, there is help available for that. And if she just needs someone to talk to, people who really understand what she is going through, we are here every day.

Steve

[pjb]

I feel that not only depression but maybe fear of having to go through this a second time might be a major concern that your mom might have.  It has been only 6 months since my surgery but the thought of having to go back to the hospital right now terrifies me and hoping I do not have to go through this again in the near future with a regrowth or another AN is constantly on my mine.  Hope she talks to someone and try to have patience with her I know as a caregiver you to are going through alot yourself.

My prayers are with your mom and your family,

Pat

[Kaybo]

Pat~
I can so empathize with your fear of having to go back to the hospital and go through this again.  I was very young (25) when I had AN surgery and had NEVER been in the hospital before - at that point, not even to have babies! - and I was TERRIFIED of going back.  HOWEVER, I can say from experience - 14 years - that that does fade as time goes on...I hope that I never have to do that again but if for some reason I do, I could now and not be terrified.  Would I be scared? YES!  Do I want a repeat? NOOOOOOO!  But I have a lot to live for and I am going to do WHATEVER I can to see that happen...even if I have to have major surgery again!

K 

[pjb]

Pat~
I can so empathize with your fear of having to go back to the hospital and go through this again.  I was very young (25) when I had AN surgery and had NEVER been in the hospital before - at that point, not even to have babies! - and I was TERRIFIED of going back.  HOWEVER, I can say from experience - 14 years - that that does fade as time goes on...I hope that I never have to do that again but if for some reason I do, I could now and not be terrified.  Would I be scared? YES!  Do I want a repeat? NOOOOOOO!  But I have a lot to live for and I am going to do WHATEVER I can to see that happen...even if I have to have major surgery again!

K  

Thank you for your empathy for my fear the problem with me is that I had so many surgeries starting at 27 and almost died from that one up to now being a woman in her late 50's of course the brain surgery is the worse so far but my future holds many more surgeries for minor removals of various lipomas some in delicate areas some can avoid surgery. But I do have to be thankful that all of these are benign but just have to watch one can become malignant which is rare but can happen. So I am a veteran of numerous surgeries and I do not know why this time my reaction is so different usually I am a positive person and can deal with whatever life throws at me and I am surprised at myself why I feel so strongly about further surgeries. I guess I am just in a little depression okay alot and have to decide I need time to heal or to seek some advice about my depression...  

Best Wishes,

Pat

[Doc]

I get chills just thinking about the possibility of a return engagement with my Tumor.  Be strong for you and your Mom...the journey is much easier with good, caring company!

Take Care!
  
Doc

[caringfmlymber28]

Thank you so much to everyone on this forum for your responses!  God Bless all of you!!

To answer a couple of questions.............her surgery was in September of 2008, and her first MRI since surgery will be this March. 

When I found this board, I knew I could ask any questions, and not be judged of what I was feeling.  So thank you all for that!!!

I have also been in contact with a lady that I found on the ANA website about a support group meeting in April of this year, that is close to my home, and I'm in talks with my sister to see what she thinks about taking my mom to it. 

See, I have been researching and doing everything "behind my mom's back" because I'm not sure how to approach the subject with her.  Sometimes, I think me and my family aren't enough for her to talk to.  That's why I hope to be able to approach her with as much information as I can, from people that have been, or are going through the same things/feelings she is. 

So to all of you..............a big THANK YOU!!!!!

[leapyrtwins]

Caring -

I think the support group meeting is an excellent idea.

As much as a caring family can help an AN patient, I can tell you from personal experience that there's nothing like connecting with others who have "been there, done that".

Steve's point about the Discussion Forum is also a great one.

Jan

[ndk1979]

I am the sister of "caringfmlymber28" and am happy to report that we had an "intervention" with my mom and she has agreed to call her doctor tomorrow for a follow-up appointment to discuss her headaches and other concerns she has! Thankfully, our family has the kind of relationship were we can be brutally honest with eachother, and we were able to tell my mom how we felt and let her know that we were concerned because we love her SO much! She realized (with the help of everyone's posts) that she doesn't have to suffer with her headaches and other issues. And, she also agreed to attend the support group meeting in April!!! We are just so thankful for everyone's advice and thoughts on this site! 

[Jim Scott]

I am the sister of "caringfmlymber28" and am happy to report that we had an "intervention" with my mom and she has agreed to call her doctor tomorrow for a follow-up appointment to discuss her headaches and other concerns she has! Thankfully, our family has the kind of relationship were we can be brutally honest with each other, and we were able to tell my mom how we felt and let her know that we were concerned because we love her SO much!  She realized (with the help of everyone's posts) that she doesn't have to suffer with her headaches and other issues.  And, she also agreed to attend the support group meeting in April!!! We are just so thankful for everyone's advice and thoughts on this site!

Great news!  Thanks for updating us and, of course, we hope your mom will benefit from the actions she'll be taking. We'll look for her to register and post, some day soon.   

Jim

[leapyrtwins]

ndk -

glad your mom agreed to call her doctor for a followup appt.

I hope she'll like the support group meeting in April.  They are very beneficial.

Thanks for updating us,

Jan

[lori67]

Ndk -

That is good news!  I guess she just needed some reassurance that she wasn't the only feeling this way.  They say misery loves company!     We certainly don't want her miserable, but it is nice to know she'll be in the company of people who know exactly what she's going through.

Good luck at the doctor's appointment.  I hope he can reassure her also and find a way to get rid of the headaches.

Lori

[mare4ever1]

HI ALL!
I AM THE MOTHER OF CARINGFMLYMBER28 AND NDK1979. I JUST WANT TO THANK EVERYONE FOR THEIR ADVICE THEY GAVE TO MY GIRLS. THEY HAD AN INTERVENTION WITH ME THIS PAST WEEKEND AND EXPRESSED THEIR CONERNS. I NOW HAVE AN M.R.I. SCHEDULED FOR THIS FRIDAY AND WILL BE SCHEDULING A FOLLOW-UP APPT. WITH MY ENT DR. I DO FEEL LIKE A WEIGHT HAS BEEN LIFTED OFF MY SHOULDERS AS I HAVE MADE THIS FIRST STEP. ONCE AGAIN THANK YOU FOR THE INFO I HAVE READ FROM ALL OF YOU. WHAT A BLESSING TO KNOW I'M NOT ALONE.