ANA Discussion Forum
Caregivers => Caregivers => Topic started by: caringfmlymber28 on January 25, 2010, 06:06:21 pm
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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?
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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.
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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
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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
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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
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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 ;D
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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 ;D
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
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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
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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!!!!!
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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
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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!
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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
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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
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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! :D 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
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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. :)
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Wow what a great example of how much good this forum does. Blessings go to all involved.
Susan
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So very glad that you posted and we welcome you to our forum/family! Please visit us often and know that we all share concern for each other! Your daughters are wonderful caring girls and love you and have found the right place for you and any questions we may be able to help with. So don't be a stranger and please let us know your MRI results!!! blessings to you and family,
Jackie from Oregon
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Hi Mare and welcome!
It's good to hear from you. You are definitely not alone!
You've obviously done a wonderful job raising your children. They are truly concerned about you. I'm glad to see you've decided to check out the forum for yourself. There's lots of good information and lots of caring people.
I hope your MRI goes well. Keep us posted!
Lori
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Hi Mare,
So happy to see you and your daughters working close together on this issue.
Know that we are here for you. It is just good to validate all those feelings and issues with people who understand.
Part of the AN "journey"
Keep us posted ok? :)
Maureen
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Mare -
I was going to say that you are definitely not alone, but Lori already beat me to it. I guess great minds think alike ;D
Glad you have an MRI scheduled and I'm hopeful it will be "clean".
Please keep us posted.
Best,
Jan
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thank you all for welcoming me into your "family". God has surely blessed me with 2 wonderful, caring daughters!! And not only has He lead them to this forum but through them he has led me here. I guess part of the reason why I've been "holding out" on getting the MRI, is because of cost. Our insurance has drastically changed with a large dedutable I'll never reach each year. I had been praying on what to do, and God answered me through my girls!!!! So, I'm just leaving the financial situation to Him. I will keep you all informed on the outcome of the MRI. I go this morning for lab work before having the MRI. God bless you all.
Mare
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Hoping all goes well for you with your tests and I know it is horrible with the insurance company costs that holds us back in getting the care we so urgently need.
My prayers are with you and your caring daughters,
Pat
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RESULTS OF MY M.R.I. CAME BACK SHOWING A RESDIUAL TUMOR. GUESS THEY DIDN'T GET IT ALL THE FIRST TIME. SO, NOW THE DR. IS GOING TO WATCH AND WAIT. IF MY HEARING GETS WORSE ( I WEAR A HEARING AID NOW) OR I LOOSE MY HEARING COMPLETELY, HE WILL REMOVE THE TUMOR. MY FAMILY WAS IN SHOCK. THEY THOUGHT THE M.R.I. WOULD HAVE COME BACK CLEAN. I FELT THE PRESSURE OF GIVING BAD NEWS TO THEM AGAIN!! I'M FINE WITH EVERYTHING. I HAVE PEACE OF HEART.
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RESULTS OF MY M.R.I. CAME BACK SHOWING A RESDIUAL TUMOR. GUESS THEY DIDN'T GET IT ALL THE FIRST TIME. SO, NOW THE DR. IS GOING TO WATCH AND WAIT. IF MY HEARING GETS WORSE ( I WEAR A HEARING AID NOW) OR I LOSE MY HEARING COMPLETELY, HE WILL REMOVE THE TUMOR. MY FAMILY WAS IN SHOCK. THEY THOUGHT THE M.R.I. WOULD HAVE COME BACK CLEAN. I FELT THE PRESSURE OF GIVING BAD NEWS TO THEM AGAIN!! I'M FINE WITH EVERYTHING. I HAVE PEACE OF HEART.
Mare ~
I'm very sorry to learn that the MRI indicated the tumor has begun to re-grow, but this is always a risk with AN surgery - or radiation. I'm sure the news was a shock to your family but at least you've started down the right path by having the MRI and knowing the reality of the situation in time to address the re-growth, if that becomes necessary. You'll be in the thoughts and prayers of many people and you are definitely not alone. Your peaceful heart is well justified.
Jim
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I'm so sorry. I'm glad you finally have answers, and that you were brave enough to search out what was going on. I wish the outcome was better, but you will get through this too-and I'm thankful that you have a great family support system to help you.
(hugs)
Adrienne
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to mare and her loving family..... I've been following along in a quiet fashion (highly unusual for me!) but I wanted to watch how things went before I chimed in. I am so sorry to hear that the docs may have left a small piece of the AN during your surgery, but I think you have caught on around here.... that regardless of what direction things may go from here on out, we are here to cheer you on.
Peace of heart is perfect! And as your sig line notes.... G_d only hands out what he (or she!) believes we can handle. I know you all can handle this.... cuz.... you have all of us to help along the way. In my mind... "strength in numbers" prevails... and you certainly have many "numbers" here cheering you on.
so, with that said, hang in there. I know the family will handle this as strong as mare...... and with us by your sides.
Phyl
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When you walk through a storm, keep your head up high and don't be afraid of the dark.
No, you'll never walk alone.
We've got your back, sweetie. :)
Sue in Vancouver USA
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THANK'S TO EVERYONE'S SUPPORT AND ENCOURAGEMENT. YOU ALL BROUGHT TEARS TO MY EYES :) MY DAUGHTER JUST CALLED TO SEE HOW I WAS. SHE CONFESSED SHE BROKE DOWN AFTER HAVING IT ALL SINK IN. I HAVEN'T CRIED YET. I KNOW I HAVE PEACE OF HEART, BUT I ALSO KNOW THE HUMAN SIDE OF ME,IT WILL GET THE BEST OF ME. IT'S NICE TO KNOW I HAVE TWO "FAMILIES" I CAN GET SUPPORT FROM. I ALSO DON'T FEEL ALONE AFTER I WAS READING IN THE EMOTIONAL TOPIC ROOM. THOUGHT I WAS CRAZY WITH THE WAY I'VE FELT SINCE SURGERY, TIRED, SHORT TEMPERED, ETC... I REALLY FELT A SIGH OF RELIEF KNOWING I'M NOT ALONE. THANK YOU AGAIN. MAY GOD BLESS EVERYONE OF YOU!!
MARE
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Mom,
I'm so proud of you and how you are handling this news about the tumor being there again! I know I told you that the other day, but I wanted to share how I feel to everyone here as well! Mom is the strongest person I know. I don't think that if I were in her shoes I would have such a peace of heart like she does! I am trying to be strong like her, but I just don't want to see her go through all of this again. It's so great to know that she can "go through" this experience with all of these wonderful people here! It's so much more of a support that she may have gotten from us the first time she had surgery! I wish she would have known about this site and all of you strong-willed, beautiful people here! I'm just thankful that she can have that kind of support from you all now, when she needs it the most! Mom has always told us that God doesn't give you more than you can handle and that there is a reason for everything. I believe that this situation has made me a bit stronger (not as much as mom) and appreciate all of your support and concerns here! I feel like we don't have to go through this alone, like we did the first time! God bless all of you here, survivors and caregivers....your well wishes and advice are really something that is touching to all of us! And to Mom, I love you so much! I am so proud of you! We will get through this again...!
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Mom,
I'm so proud of you and how you are handling this news about the tumor being there again! I know I told you that the other day, but I wanted to share how I feel to everyone here as well! Mom is the strongest person I know. I don't think that if I were in her shoes I would have such a peace of heart like she does! I am trying to be strong like her, but I just don't want to see her go through all of this again. It's so great to know that she can "go through" this experience with all of these wonderful people here! It's so much more of a support that she may have gotten from us the first time she had surgery! I wish she would have known about this site and all of you strong-willed, beautiful people here! I'm just thankful that she can have that kind of support from you all now, when she needs it the most! Mom has always told us that God doesn't give you more than you can handle and that there is a reason for everything. I believe that this situation has made me a bit stronger (not as much as mom) and appreciate all of your support and concerns here! I feel like we don't have to go through this alone, like we did the first time! God bless all of you here, survivors and caregivers....your well wishes and advice are really something that is touching to all of us! And to Mom, I love you so much! I am so proud of you! We will get through this again...!
Ditto Sister!! Love you Mom!!!
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Wow! Sorry to hear that your family is going through this again,but so glad that you have one another and a strong faith as well. This forum is definitely a Godsend to many people! Use it with all of your worries and concerns, and I promise you that you'll find a number of people that are experiencing, or have experienced similar situations. Best to all of you! It's going to be okay!
Jill
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First I have to say MARE, you are not alone here and SO GLAD you came to this site. People use it for venting, etc. Do what you need, but as for me it does help me realize I am NOT alone. It is so hard for some friends and family to understand. Some on this site say the AN journey is a 'gift that keeps on giving'. In away, I assume it means it can play an impact in many ways before and after surgery.
I had read things on here about people developing depression, or some down sides post surgery. So, when I started having some issues and feeling so confused and like I was complaining to family and no one gets it......I did seek some counseling about 2 1/2 months post op. I find it MUCH helpful. Someone different to 'bounce things off'. I am wishing you guys the best!!
Do have a question maybe someone can answer here: what is residual mean? Was your tumor actually only 3 1/2MM or CM?
Take care!!
Denise
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DENISE,
OOPS, TYPO. MY TUMOR WAS 3 1/2 CM. I THINK A RESIDUAL TUMOR IS A LEFTOVER TUMOR. I DIN'T EVEN THINK TO ASK. IN FACT I FEEL STUPID, CAUSE THE NEXT DAY OR TWO I THOUGHT OF THINGS I SHOULD HAVE ASKED THE DR. I WON'T SEE HIM AGAIN UNTIL NEXT JAN. MY DAUGHTERS ARE FINALLY REALIZING HOW I'VE FELT AFTER SURGERY. THEY FINALLY "GET IT." I DON'T THINK MY HUSBAND IS QUITE THERE YET. I'M SO THAKNFUL MY DAUGHTER FOUND THIS SIGHT FOR ME AND FOR THEM AS WELL. THANKS FOR THE SUPPORT EVERYONE.
MARE
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DENISE,
OOPS, TYPO. MY TUMOR WAS 3 1/2 CM. I THINK A RESIDUAL TUMOR IS A LEFTOVER TUMOR. I DIN'T EVEN THINK TO ASK. IN FACT I FEEL STUPID, CAUSE THE NEXT DAY OR TWO I THOUGHT OF THINGS I SHOULD HAVE ASKED THE DR. I WON'T SEE HIM AGAIN UNTIL NEXT JAN. MY DAUGHTERS ARE FINALLY REALIZING HOW I'VE FELT AFTER SURGERY. THEY FINALLY "GET IT." I DON'T THINK MY HUSBAND IS QUITE THERE YET. I'M SO THAKNFUL MY DAUGHTER FOUND THIS SIGHT FOR ME AND FOR THEM AS WELL. THANKS FOR THE SUPPORT EVERYONE.
MARE
Phew, I sure was hoping that there wasn't redisual (found out that does mean left overs) from a 3 1/2 millimeter AN ;) I was thinking: that is so small, how could there be residual?
As for the questions, I think we all do that. Give them a call. Most offices are good about at least letting you talk with the nurse and she can get answers or like mine, even the doctor has called me back (I live 3 1/2 hours away & NOT gonna drive for a few questions).
So glad your daughters came to this site. Have to say, I almost wish all ANers families & friends could learn more from this site. It is a hard situation sometimes because once the tumor is out and the scar starts to heal (or radiation treatment is done), some people think its over.......well, I've found out and read a lot......NOT!!
Glad some of your family has got to see more and hopefully you will benefit greatly too from the support and understanding in this AN forum.
Hugs....Denise
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THANK YOU DENISE FOR ENCOURAGING ME TO CALL MY DR. I DID AND TALKED TO HIS NURSE. SHE ANSWERED MY QUESTIONS AND I FEEL SO MUCH BETTER. I DO HAVE A LEFTOVER 3 1/2 MM. TUMOR FROM MY 3 1/2 CM. TUMOR. THEY ARE GOING TO WATCH IT CLOSELY WITH M.R.I.'S. MY ? WAS WHY THEY DIDN'T SEE IT AFTER THE FOLLOW-UP M.R.I. I HAD DONE 5MOS. AFTER THE SURGERY. GUESS IT WAS THERE THEN, THINKING IT COULD BE SCAR TISSUE, WHICH IF THING'S DON'T CHANGE OVER TIME THAT'S PROBABLY WHAT IT COULD BE, SCAR TISSUE. SO WE'LL WAIT AND SEE. WAITING.....IT'S SO HARD SOMETIMES :-\
BUT I KNOW I'M IN GOOD HANDS AND GOOD COMPANY :)
HUGS, MARE