Author Topic: No family in surgery  (Read 16972 times)

Mei Mei

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No family in surgery
« on: May 29, 2011, 07:05:12 pm »
Dear all Forumites,
I just wanted to let you know how important you all are to me.   I had surgery with Dr. Ducic at Georgetown on Thursday and I had to go in a taxi alone.  While I was in recovery, the nurse called my notes upstairs to inpatient and said I was very pleasant and I had "no family".   My heart sunk.  No family.   They didn't offer to come.   I'm taking care of my 96 year old father alone too.  Back in 1988 I went to Georgetown alone and stayed there for 8 days until they sent me home because I broke down crying as I was missing my daughters.  The woman taking care of them didn't bring them to visit me.   For the anastomosis a year later out in Irvine Ca, noone came with me and I stayed in the dorms for 10 days until they let me come home.   I got to the airport and my father and mother who were sitting the children wouldn't come to the airport to pick me up so when I carried my luggage to the everpresent in my life TAXi, my stitches came open and I started to bleed.  I called my neurosurgeon and they arranged for an appt to re do my stitches.   My older daughter came for my AN surgery for 6 days but had to leave for a Bar Assoc. conference in Mexico the next week.   There was no one to take me to take out my stitches.  I had to depend on hired help once again.    Just talking with all of you means so much to me.   Please remember that when you are going to the doctor or surgery with your spouse or family, there are some of us that go alone and there is no choice in the matter.   We have to pay people to take care of us and they still don't know what an AN is and what it is like to go through this.
YOU are all more important than you think.  i wish you were all here with me.
HUGS,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Tod

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Re: No family in surgery
« Reply #1 on: May 29, 2011, 07:18:38 pm »
Ah Mei Mei, you break my heart. I am here for you as part of extended family. Next time, please let me know that you have no one there and I will do my best to come up and be there for you.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Mei Mei

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Re: No family in surgery
« Reply #2 on: May 29, 2011, 08:07:51 pm »
Thank you, Tod.  You are bringing tears to my eye right now as I type.   It is a terrible feeling to go into surgery and the nurses all whispering that you have no family.   It's embarrassing and heartbreaking.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Kaybo

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Re: No family in surgery
« Reply #3 on: May 29, 2011, 08:40:46 pm »
Mei Mei~
Your sharing that just broke my heart...I'm so sorry that you have had to go thru this alone. I know that I need to be reminded that not everyone has the kind of family support that a lot of us have. Here I was feeling sorry for myself after my recent surgery because I didn't have all my friends that I moved away from ...I need to remember to be grateful for what I do have! Thank you for reminding me of that.

Glad we can offer you a bit of comfort here...

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Mei Mei

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Re: No family in surgery
« Reply #4 on: May 29, 2011, 08:56:20 pm »
You're wecome, K.  Again your post brings me to tears and I can't even swallow water.  There's money but no family.  I raised my daughters to be so successful that there is no time in there careers to come to my surgery.   Only us ANers on the Forum know what it is like to go through vocal cord paralysis, brain surgery, deafness and tinnitus.   It's a long road and only we know what it is like.   After a while the family tire of complaining.   I was so embarrassed by the nurse telling the other nurse that I had no family.

Hugs to all of you out there.   I really love you all.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Suu

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Re: No family in surgery
« Reply #5 on: May 30, 2011, 02:25:21 am »
Hello Mei Mei

You have managed to bring tears to my eyes as well.  You will never, ever be alone because we're with you.  We walk beside you daily and we share our lives with you each minute of the day.

Here's a group hug especially for you. 

♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu


4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Cheryl R

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Re: No family in surgery
« Reply #6 on: May 30, 2011, 08:24:33 am »
Mei Mei,    I think the no family with a person in surgery happens more than one thinks it would.   It is not easy for them.      It always bothered me if we had an elderly person in with a broken hip and had to keep family out of state informed of their condition or in some cases have them give permission over the phone for their surgery.              I feel for you with all you have been thru and how hard it has been and how brave you have been.            You are more of a survivor than you probably think of yourself.   
  I hope now past this surgery that things go so much better for you and can enjoy life even more.     
                                       Gentle hugs!     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mei Mei

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Re: No family in surgery
« Reply #7 on: May 30, 2011, 08:49:16 am »
Thank you Suujoy and Cheryl,
I didn't know it was common.   What does this say for America?   I'm feeling better after resting last night.   I hardly use this section of the Forum but really needed to talk last night.  It's nice to know there are people out there that care.   I'm looking forward to meeting you in the Symposium.   Are you going Suujoy?
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Cheryl R

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Re: No family in surgery
« Reply #8 on: May 30, 2011, 10:09:36 am »
Mei Mei. Probably more common in an area with more public transportation than rural areas where one has to have a ride home if having just out patient surgery.  There is a public transportation bus that we had to use alot to take patients back home esp if to a nursing home.  Or if wheel chair bound.           Anyway to it is not fun  to have to feel very alone and want someone with you.  I hope this is it for you.                           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mei Mei

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Re: No family in surgery
« Reply #9 on: May 30, 2011, 10:22:32 am »
I hope so too.   Dr. Ducic's last words to me before I went under was let's hope we do not have to take out the mesh.   Dr. Fred Schwartz said if I still have headaches after this he would put in a dough like substance under the entire incision area.   I think ever since I woke up, I've been feeling much better,  just a slight stiff neck from the tugging at the C1 and 2.   Otherwise I feel normal again.
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Jim Scott

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Re: No family in surgery
« Reply #10 on: May 30, 2011, 01:53:46 pm »
Hi, Mei Mei ~

Your post describing your feelings of abandonment and loneliness was as startling as it was poignant.   Startling because even though I've been self-sufficient just about all my life, I've had my loving wife as my anchor and helpmeet for most of my adult life (41 years of marriage) and it was a bit of a wake-up call to realize that there are good folks like you that don't have that kind of support during times of stress, such as surgery.  When I went in for my AN surgery I had my wife, son, sister-in-law and brother-in-law with me and I was visited (and prayed for) by my minister and 4 church Elders just prior to being taken to the OR.  My wife slept in the nurses lounge for 2 nights until she was satisfied that I was O.K.  Although I'm sure I would have recovered at about the same pace during my first few days post-op, it was highly reassuring to wake up from one of my many naps and see my wife quietly sitting in a recliner next to my hospital bed.  It's definitely heartrending to learn that you haven't had this kind of support.  I wish there were a way I could remedy the situation as it obviously is stressful and a bit depressing for you - which is perfectly understandable. I find it a source of some optimism that these ANA discussion forums have been so beneficial and supportive for you.  That, of course, is one of the primary purposes for the forums and it's good to see that they are more helpful than we may have realized.  Like everyone else who has posted, I'm sorry that your family is too-often absent from your bedside when you have to undergo medical procedures.  I trust that the good people posting their sincere expressions of support to you here will continue to bring you some solace.   For what it may be worth to you; I'm one of those people.  You'll be in my thoughts and prayers for quite some time, Mei Mei.  Try to remain hopeful and strong. 

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: No family in surgery
« Reply #11 on: May 30, 2011, 04:59:01 pm »
Thanks, Jim for the words of support.  I truly feel them.  I also remembered your story of your surgery and how many people came along to support you and I was envious.   Scott who I encouraged to go out to HEI and cancel with Hopkins brought along several friends out to LA from Virginia as he didn't have family to go with him.  Everybody thinks that I have family and that they will be there, but they don't know how afraid of surgery my father is.   They didn't come to my Laminectomy in 1988 and when I asked them to pick me up at the airport after 10 days in Irvine for the anastomosis for the vocal cord paralysis, he didn't come and I tore my incision open from lifting the suitcase into the taxi.   A few years later in 92 I had a laparoscopy and the nurse saw how nervous my father was and called my older daughter Mariam out of her high school classes because she said she couldn't discharge me to him.   Poor Mariam had to take us both home and she was too young for this responsibility.  She came in 2006 for another surgery and again in 2010 for the AN surgery.   I think my family is tired of hearing about my problems and don't want to hear about my needs.  This AN stuff and degenerative disc disease gets old.    My husband even complained about my neck problems at the divorce depositions.   It was the surgeon who asked how did I ever cope with that mess inside of my neck for so long.  I felt validated by that comment.

So we people with chronic diseases have to be careful talking about our problems because people just get tired of listening and expect you to get better.   When we're not getting better everybody gets frustrated.   It's a delicate balance we have to maintain in seeking support.    Thanks to you and all the other Forumites for being there.   I know you're there and it is very comforting.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Suu

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Re: No family in surgery
« Reply #12 on: May 30, 2011, 09:10:37 pm »
Thank you Suujoy and Cheryl,
I didn't know it was common.   What does this say for America?   I'm feeling better after resting last night.   I hardly use this section of the Forum but really needed to talk last night.  It's nice to know there are people out there that care.   I'm looking forward to meeting you in the Symposium.   Are you going Suujoy?
Mei Mei

Sorry but I live too far away in Australia to go to the symposium. 
I'm glad you're feeling better.

Maybe someone who lives near you can go with you?

Love and hugs mate,

♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Mei Mei

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Re: No family in surgery
« Reply #13 on: May 31, 2011, 05:57:03 pm »
Too bad you are so far away.    I am looking forward to meeting all the Forumites I've been connecting with so lovingly sINCE NOV. 2009.  They are wonderful people with the bad luck to have this tumor.

Hugs to you!

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

mandy721

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Re: No family in surgery
« Reply #14 on: May 31, 2011, 09:50:08 pm »
Mei Mei,

My  heart goes out to you for having manage on your own.   I want to wrap my arms around you and give you a big hug.   You deserve a medal of valor for making it through all of the procedures and complications you have experienced.   If we lived closer, I would be there to help. When Ken had his surgery, it was me and our daughter, who had just graduated from college.  It was overwhelming at times, but we made it through.  No one should go through this alone.

Miranda
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

 


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