Author Topic: No family in surgery  (Read 16966 times)

Mei Mei

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Re: No family in surgery
« Reply #15 on: June 01, 2011, 02:29:48 pm »
Thank you, Miranda.   Being an only child I am used to being alone and not asking for help.   I just assumed that having two daughters I wouldn't have a problem  getting help.   So, today I've been looking at the approved list of Long Term Life Insurance approved for Maryland Residents.   I have to be realalistic.

Old age will be hard to manage.   Taking care of my 96 year old father in my home has been a real struggle expecially without the long term care insurance.   It is too late for him to buy it now.
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

Denise S

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Re: No family in surgery
« Reply #16 on: June 11, 2011, 02:06:56 pm »
Mei Mei,

I haven't been on this site since you posted this, but did know about some of it due to post on facebook.    I actually think of you as a VERY STRONG woman due to everything you have been and are going through!  To be able to even go into the surgery knowing there was no one with you makes you very strong and independent!!   I don't think I could emotionally handle it, so I give you TONS of credit!!

I think of you so often and hope that this surgery will be a positive answer to your pain!   I am sending BIG cyber HUGS!!! to you!!   ;)

Take care of yourself!!!

Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Mei Mei

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Re: No family in surgery
« Reply #17 on: June 11, 2011, 03:16:59 pm »
Thank you, Denise.   I just have no choice.   Got to keep moving.

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

Rivergirl

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Re: No family in surgery
« Reply #18 on: June 11, 2011, 07:40:51 pm »
MeiMei, I just had surgery on May 31st and my husband was there and my kids came.  They were all shocked at how tough and long the surgery was and when they saw the sutures and all the tubes they were weak, none of us expected that.  But as sick as I was I thought many times in the hospital how awful it would be to have no one and then I just saw your post.  I am so sorry you had to do that alone, it breaks my heart.  Sending big hugs out to you.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Mei Mei

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Re: No family in surgery
« Reply #19 on: June 11, 2011, 08:10:08 pm »
Thank you Rivergirl.   It was a dream that my daughters and grandkids would be there and help me discharge and get home.
Just a dream.   I am  always envious of other people with family.
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

dragonmama

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Re: No family in surgery
« Reply #20 on: September 18, 2011, 05:31:06 pm »
Mei Mei,

I'm new here and just read your story. Thanks so much for sharing! I would never leave someone to face what you've faced alone. Never!

My father had open heart surgery last November and since he's my mother's caregiver (and she's largely immobile), I went to every doctor appointment with my father (in another city 2.5 hrs drive from my home), went with him to his surgery, visited him in ICU and daily when he was moved to a ward. I moved in with my mom to care for her, and took her to visit my father (1.5 hrs drive each way) every day, and stayed a whole month to care for both of them after my father got out of the hospital. It meant moving my children with me, and leaving my husband behind (he works on contract and if he doesn't work we have no income).

I still felt like I hadn't done enough! I felt like my father should have had someone with him most or all of the time he was in the hospital. And I was angry with my siblings for not taking a few days off work to help out and surprised at all my aunts and uncles and cousins and my parents' friends that only one of them made an effort to visit my dad in the hospital. If even one of my siblings came to help, then they could have been with my dad in the hospital and I could have cared for my mother, and then we could have switched. Instead, I was the only one who tried to do anything and because I was willing to do something, I was left doing it all.  >:(

Over 8 years ago I had a parathyroidectomy. Like you, I took myself to the hospital and waited alone in pre-op. My hubby (who is squeamish and gets freaked out in hospitals), brought our 2 year old to visit me 8 hours after I got out of surgery. Luckily, I got to go home with them. I felt really confident going into that surgery and it was easy for me to be brave and walk into the hospital alone.

Now I'm facing the likelihood of having AN surgery without anyone to lean on for emotional support and I'm not feeling at all confident or brave! I have two children - my youngest has an anxiety disorder. I am really worried about what will happen to her while I'm in surgery and while I'm in the hospital. She gets freaked out if she is separated from me for more than 2 hours. While caring for my dad last year, I had to leave her for 8 hours on two occasions. She was so flipped out by that - she needed 100% of my hubby's and her sister's attention the entire time I was gone and then she was still so emotionally fractured by the experience that she acted out and went through emotional extremes for several days after each time.

She does have a good relationship with her father, but he is not the one she turns to when she's having an anxiety attack or a meltdown caused by anxiety. I'm the one who helps her with those, who calms her down and get's her back to functional. Really, my hubby is a lovely, nurturing person, but he doesn't have the skills for dealing with huge over-the-top emotional meltdowns like she has.

I know it is going to he HUGE for him just to visit me in the hospital and even HUGER for him to be the one both children lean on. Frankly, I can't imagine leaning on him myself at the same time - I think it would be too much. I've been in that spot of being the ONLY ONE for everyone, during my father's surgery, and I know it nearly broke me. And I believe I am the stronger (emotionally) of the two of us. Just caring for our 6 year old for that week I'm in the hospital is going to be more stress than most people can deal with.

I have been trying to think of people who can provide support to my hubby and me and it's really hard to figure out, since my surgery will have to be in a city 3 hours drive from home. I know my sister will come and visit me in the hospital - but she works and has kids and I don't expect her to be able to visit for long or frequently.

It's really scary to think of doing this alone. Mei Mei - just hearing that you DID do this alone has given my heart a boost of courage! I feel a lot better knowing that I won't be the first person to go for such major surgery alone. And looking at my support resources - which looked pretty thin to me before - and comparing them to yours, I can see that I am not as poor as I thought I was. Thank you for putting some of this in perspective for me.  :)

Gael
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

leapyrtwins

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Re: No family in surgery
« Reply #21 on: September 18, 2011, 05:46:12 pm »
Gael -

I haven't read any of your other posts, so maybe I'm asking the obvious, but have you considered radiation to treat your AN?

Based on the size of your tumor, as it's noted in your signature line, it appears to be within the range for radiation.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

dragonmama

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Re: No family in surgery
« Reply #22 on: September 18, 2011, 05:51:29 pm »
For some reason, radiation sounds scarier than surgery to me. If my doctor recommends it and can reassure my lurking fears then I would be open to it.
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

mk

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Re: No family in surgery
« Reply #23 on: September 18, 2011, 07:20:48 pm »
Gael,

I am just reading this. Make sure that you mention your concerns about kids - support system to the doctors that you are seeing and that you are the main caregiver for a special needs child. They might be inclined to recommend watch and wait for you, until things become a bit easier. I have many other thoughts on this, but I will share them later (it is getting too late ...)

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

dragonmama

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Re: No family in surgery
« Reply #24 on: September 19, 2011, 06:27:27 am »
Just reading last minute before the trek to Toronto. Thanks for this Mariana - I don't keep it a secret but I wouldn't have made a point of telling them... now I will.

I'm not sure it will make much difference - I had the metabolic disorder, parathyroidectomy and 3 kidney stone lithotripsies while breastfeeding my first daughter and made a point of telling all the doctors I saw about that. Some of them took it into account, but some were outright rude and told me I should wean my daughter and focus on my own health.

I had to be very proactive and do my own research. I actually carried a copy of Dr Hales Medicines and Mother's Milk with me to every appointment (Hale has a PhD in pharamacology and reads and summarizes all the research and gives ratings of the risks of each medication on the breastfed infant. He also explains what the research has shown about how medicines enter and exit breastmilk - turns out to be the same as your plasma). One of the anesthetists I had for a lithotripsy loved the book - he read parts of it during my treatment and showed me the book he brought with him, which was on the same topic but a different author. That was my most positive experience. Most of the rest were lukewarm. A lot of doctors have trouble looking at a patient as part of an organic system (like a family).
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

mk

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Re: No family in surgery
« Reply #25 on: September 19, 2011, 04:36:32 pm »
For some reason, radiation sounds scarier than surgery to me. If my doctor recommends it and can reassure my lurking fears then I would be open to it.

The doctors you are seeing this week only do surgery and they won't recommend radiation. You need to talk to someone who does both. Dr. Cusimano is the  best in Toronto, he operates at St. Michael's and does GK at TWH.
There is a very good doctor in Ottawa, who does CK, his name is Dr. Sinclair. A couple of forum members had treatment there, and had a very positive experience. I am sure he would give an honest opinion.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

 


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