Author Topic: Cognitive/Emotional Recovery  (Read 8178 times)

Mei Mei

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Cognitive/Emotional Recovery
« on: January 26, 2014, 07:08:23 pm »
Hello All,
I haven't been posting for a long time as recovery has been problematic and still is.
My days end around 3 pm when I come home from appts and dog walks.   I lie on the sofa and change Ice packs wrapped around my neck every half hour till 11 pm when I hit the sack.

What has gotten better and I only realized it this month is that I am typing email and posts fluently and without typos and wonky head comments.   I thought that would never end but I am happy to report after 4 years this month that this is not an issue.   I passed another birthday on Friday able to talk and walk.   Short term memory is still a problem as are word searches.   I'm still medicating a few hours before I sleep and don't go out once I take the meds.    I made a mistake one time last Summer while on a trip and went out for dinner resulting in a bad car accident that I shall regret forever.  I'm back on track cognitively but the physical impact of the Titanium mesh allergy is preventing the recovery.

Choice is to suffer and endure the poor quality of life or give it a try with Dr. Schwartz to remove the mesh of 4 years.   He was the only one not sending me back to Hopkins and the only one understanding the issues of this impact on my life. 

There has been literally no family support.  In fact now they won't let me stay in their home because of my forgetfulness.   THey think I am going to burn their house down.   I can no longer take my grandchildren out in my car and go on trips with them to babysit while they are in conferences.

Should I throw the towel in that some of us feel like doing or persist until I have some peaceful quality of life?    :o
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

Kathleen_Mc

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Re: Cognitive/Emotional Recovery
« Reply #1 on: January 27, 2014, 02:38:52 am »
Mei Mei: PERSIST, that is what we all must do, things will get better someway someday
Sorry you are having such a difficult time of it and that your family cannot find it within themselves to be supportive
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

kcarloy

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Re: Cognitive/Emotional Recovery
« Reply #2 on: January 27, 2014, 09:31:34 am »
Dr Schwartz is awesome!

Mei Mei

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Re: Cognitive/Emotional Recovery
« Reply #3 on: January 28, 2014, 11:08:09 pm »
He is.   Do you know him or are you going  by my reported experience?

What makes me feel good now is that when I type online here and in my email, I am not making typos which I was doing two years ago this time.
I was doing things I never did before such as typing the wrong homonym, e.g.  Two for Too...
It was so frustrating and really bizarre to observe in myself.   I stayed off the site and was thrilled when I realized a few weeks ago that well, you know this wasn't happening anymore!    Yes, we do get better and Virginia, there is a Santa Claus!
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

MDemisay

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Re: Cognitive/Emotional Recovery
« Reply #4 on: January 29, 2014, 03:15:36 pm »
Mei Mei,

So glad your mood is improved and you seem to be coping better and accepting life as it is. Certain people family members in particular often remember how we were compared to how we are now, and for the life of me they just can't cope with who we are now. For now you seem to be coping with the changes that you have had to live with on a daily basis.

Not everybody is comfortable dealing with change as we here on the forum are. Face it nobody likes change! Even we find sudden change difficult to deal with. Talking about it is one thing. Group work is another, separate therapy with individuals is another.

There seem to be so many issues with you and the way you relate to your family, have you tried leaving notes around the house? Opening up a dialogue with certain family members may be easy or hard to do after so much time but it has to start somewhere. In the past, I have observed a family who I thought were close to each other but when their matriarch died tragically in a fire they all reacted differently. Each of the 3 children have their own way of reacting to grief.

My best friend has acted as the anchor to the family thankfully, and has been supported by his good friends. Each of his two elder sisters at first reacted strangely the eldest wanting nothing to do with my lifelong friend (we have been friends now for 43 years) for some time after the matriarch's death, the 3 children could hardly speak to each other, now my friend is once more speaking to the younger of his sister's.

There unfortunately is nothing you can do at this point but wait and be patient and if you believe in God, pray. Perhaps, when you are out in the park walking your dog, you may chance upon them or even suggest it yourself. Parks are big open spaces where you can walk away from a conversation when you find it uncomfortable. I remind you you can't do that (as easily) in somebody's home.

Take care glad you are feeling better!

Mike


1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

kcarloy

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Re: Cognitive/Emotional Recovery
« Reply #5 on: February 01, 2014, 10:36:11 pm »
Dr Schwartz at House Ear did my surgery. Not sure if we have the same Dr Schwartz:)

Tod

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Re: Cognitive/Emotional Recovery
« Reply #6 on: February 02, 2014, 08:04:26 pm »
Hang in there, Mei Mei. You know I am pulling 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.

BAHA implant 1/25/11.

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

Mei Mei

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Re: Cognitive/Emotional Recovery
« Reply #7 on: November 19, 2014, 05:02:51 pm »
Thanks, all.   I wanted to update you since February as there have been a  lot of changes since then.   On April 1, the Titanium mesh I was allergic to was removed and replaced with a much smaller Methemethecriolate as I am notn allergic to that and the defect is now much smaller.  The incision healed nicely but after August it changed and on my end of August check up the incision was bleeding and oozing pus. and so on Friday Aug 29, I had an emergency surgery to remove it.  After 4 days the lab results showed MRSA infection in the meninges and skull bone.   I was really lucky.   I'm now more exhausted than the prior 4 brain surgeries and have a hard time making it through the day.

Thanksgiving is coming and I want you all to know how thankful I am to you here especially Tod, Cindy, Cheryl and Jim and many others.    I am still in much pain but not having the implant is a relief.   Life will never be the same but I cherish the friends I've met along the way.
Happy Thanksgiving!
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

ayse81

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Re: Cognitive/Emotional Recovery
« Reply #8 on: November 20, 2014, 08:55:06 pm »
Mei Mei,

I am so sorry to hear about the way that your family is treating you.  I was shocked when I read that.  I hope that I don't offend you.  Maybe I am just in one of those moods but I feel that you or an advocate for you should tell your family that is not supporting you how you feel.  I am going to restrain myself and stop typing.
3.1 cm tumor
.first 15 hour surgery 3/4/2014
.surgery for mrsa/headclamp site,3weeks later
.second 15 hour surgery 4/17/2014, 95 percent removed
.7-12 nerve graft surgery, 3 weeks later
.left side facial paralysis, left side deafness

jaylogs

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Re: Cognitive/Emotional Recovery
« Reply #9 on: November 21, 2014, 02:03:51 pm »
Hey Mei Mei...If anyone new to this forum sees all the posts you have done over the year documenting everything that has happened to you I think they would be very nervous about getting into all this.  BUT, they should also see that through it all you still have that sense of hope and determination to get better despite all these setbacks.  Yes, I think we can easily say that yours is probably one of the worst case scenarios of what can go wrong but as I said  you have really kept going and I so admire you for that!  Take care of  yourself dear lady and pray that you will soon see easier times! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Mei Mei

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Re: Cognitive/Emotional Recovery
« Reply #10 on: November 28, 2014, 08:01:14 pm »
Hi again all.
Thank you for the words of support.  I hope it is the worse case scenario and now this is the light at the end of the tunnel of medical problems.   I guess I post not to scare people but to warn them to tread carefully and knowledgeably.  I really do care about all of you and don't want anything to go wrong.

Someone on my Facebook page from ANA recently posted a query how many marriages broke up after the AN.  I guess my last of daughter support would be like a divorce except they are family and a mother must never desert her children no matter what.
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

Mei Mei

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Re: Cognitive/Emotional Recovery
« Reply #11 on: November 28, 2014, 10:19:33 pm »
I guess it is what it is.  Surviving 5 brain surgeries and two cervical is easier than doing it all without family support and nurturing.   It is painful but as they say you have to do what you  have to do and put one foot in front of the other.
Count your blessing that you have a stable family when you are not well.   Otherwise prepare with alternatives.
Hugs to 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

Mei Mei

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Re: Cognitive/Emotional Recovery
« Reply #12 on: January 16, 2015, 04:39:34 pm »
Well, guess what happened this week?    I passed my 5 year anniversary on Jan 12th and I totally forgot about it.   In the passed as others have done we post that today is which anniversary but this year, I totally forgot.   Does that mean I'm moving on?  Letting go?

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