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Mother's Race Against Death to Get Degree (Read 17026 times)
Seachelles
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Mother's Race Against Death to Get Degree
May 30th, 2008 at 1:01am
 
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Michelle
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Re: Mother's Race Against Death to Get Degree
Reply #1 - May 30th, 2008 at 8:30am
 
I too got this MM google alert the other day and all I could do was cry. I tried to post my sympathy to her family, but just couldnít. I believe this was Nic, a MM family member here weíve spoken with many times who couldnít get treatment because no one in New Zealand new anything about MM. I donít want to take anything away from this precious article and what sheís accomplished, Iím so proud of her, but I just believe itís totally unacceptable!!!! It breaks my heart!! She didnít have to die.

She loved this website and even did research. She was tickled she could participate in the study and had so much hope, but she just couldnít get treatment. Iíll just never understand.

Iím so sorry! My prayers are with the family.

Mar
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Lore
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Re: Mother's Race Against Death to Get Degree
Reply #2 - May 30th, 2008 at 8:17pm
 
Mar,

First let me say ditto to your post. I'm with you on this one. This is tragic, sad and unacceptable.

This is Nic from our MM family.  She posted in July 2007 asking about ethnicities and moyamoya.  She was interested in the Texas study.

Nic posted in January 2007 to say her diagnosis of MM had been confirmed and she mentioned she was Chinese but her family had lived in New Zealand for over 140 years.  She also mentioned New Zealand is small and the doctors there weren't familiar with moyamoya.

I noticed a post on the Guest Book in September of 2007 from Liz Cleaver from New Zealand who mentioned there is a doctor in New Zealand familiar with MM.  However, I saw another post in May of 2007 from Trudy Lawton in New Zealand who mentioned no doctor in New Zealand is familiar with MM.  Trudy apparently lives in a remote area of New Zealand.  This tells me it depends on where you live as to whether a doctor is familiar with MM just like in the USA.  As we are aware, some doctors in the USA have never heard of MM as mentioned by many who have signed the Guest Book and many personal experiences mentioned on the Message Board. That's so unfortunate.

This is why it is so important to spread the word and educate about MM the disease and the treatment options so we don't have to read about our MM family members suffering and dying needlessly.

I'm glad to know that Nic found us but it is sad and breaks my heart to know she didn't get the treatment she so desperatly needed and deserved. She was young, had a family and had a lot to offer. This article speaks volumes to the person Nic was and I too am proud of her accomplishments. She certainly perservered through tremendous obstacles.

My sincere condolences and my heart go out to Nic's family.


Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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tuknits
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Re: Mother's Race Against Death to Get Degree
Reply #3 - Jun 10th, 2008 at 11:44am
 
I too read this article from a news alert I received.  I sat at my computer and cried.  I did not know Nic, but my heart was broken for this tragic loss.  This should never, never happen.  My heart goes out to her family.
-Tracey
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The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart. - Helen Keller&&
 
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trudy
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Re: Mother's Race Against Death to Get Degree
Reply #4 - Jul 27th, 2008 at 5:52am
 
This is Trudy Lawton from New Zealand.and this is my first time in the chat room. I actually read this in the Dominion Post and I too cried. Because like Nicola the nearest hospital with Neuro Surgeons to where I live was Wellington. I posted my story In May 2007 on this website.
I was emailed by MAR (from the States) and by Liz Cleaver here in New Zealand. Liz has a daughter with MMD. Liz gave me the name of an incredible Neurosurgeon, Mr Andrew Law in Auckland who is familiar with MMD. I have been to Auckland met with him, had a MRA performed and he will continue to monitor my MM from here on. We discussed the future and surgical options.
It is only through this website that I learned of Mr Law in Auckland. And only through this wonderful website that in a small country of only 4 million people  I no longer feel so alone, I am one of a large family.
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Mar
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Re: Mother's Race Against Death to Get Degree
Reply #5 - Jul 27th, 2008 at 6:31am
 
Hi Trudy!Smiley

Again, welcome to our MM family!

I do remember you and the terrible ordeal you experienced back then, God love ya. Youíve been in my thoughts and prayers ever since. I remember being so upset that the neuroís there were not treating your MM, and that scared me to death. I certainly hope this new doctor you found gives this disease the attention it deserves and treats your MMD surgically, and doesnít just monitor this silent killer of a disease, like they did Nic, because there's such a danger in that. Without surgical treatment, thereís the huge risk of you experiencing more of the nightmare you experienced in the past, if not worse. I certainly will continue to keep you and your hubby in my thoughts and prayers.

Please keep us posted.

Mar
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LA
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Re: Mother's Race Against Death to Get Degree
Reply #6 - Jul 27th, 2008 at 12:25pm
 
My heart goes out to Nics family.
Her son looks like such a sweet/strong man.
She seemed like  a strong woman -- so determined to get her degree..

I WISH THERE HAD BEEN MEDICAL OPTIONS FOR HER

I'm crying for her family, for her strength, and for her possibly needless death.

Welcome, Trudy.
Glad you're finding and using this resource.
This IS a great family of mm'ers.
Sorry you had to join but am glad your aboard.

I hear New Zealand is a lovely country.

Linda A.
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Linda (LA)
 
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Lore
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Re: Mother's Race Against Death to Get Degree
Reply #7 - Jul 27th, 2008 at 8:13pm
 
Hi Trudy and welcome to the MM family.

I read your post from 2007 and I too was very concerned for your well being. It's good to hear from you and I'm glad to hear you have found a surgeon in New Zealand familiar with MM.

You are not alone and we are here to support you through your journey so please ask any questions.

Again, welcome and please keep us posted on your progress.

Lore

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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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trudy
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Re: Mother's Race Against Death to Get Degree
Reply #8 - Jul 28th, 2008 at 9:05pm
 
Trudy here once again,

Thank you all for your thoughts and prayers. MAR thanks for your reply to my email last night with Garys contact. My husband,Grant, has emailed Teresa this morning and has received a reply already. When he gets home from work will be gathering up my films copying notes and getting it off to Stanford. †
Your comments that we cannot let what happened to Nic happen again really brought home to us the reality of this Disease.

Cheers Guys/Gals
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« Last Edit: Jul 28th, 2008 at 9:07pm by trudy »  
 
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lotsofkids
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Re: Mother's Race Against Death to Get Degree
Reply #9 - Aug 13th, 2008 at 12:35am
 
My heart and prayers go out to Nic's family. They are suffering the ultimate price. Such a tremendous loss of a mother, wife, daughter and I'm sure....a dear friend to many.

It will always be a sad day to hear someone lost his or her battle with MM and even made more tragic when it seems they were not only a victim of this disease.....but a victim of the ignorance and lack of knowledge within the Medical Community that they sought so desperately help and answers from.

The silver lining here is that Trudy.....will be more aggressive and hopefully push for her own surgical intervention.....as surgery IS the best option we have for this disease.
Many docs here in the states....also advise a wait and see approach.....as they just don't understand the gravity of this disease and are hesitant to suggest a radical surgery such as brain bypass if it can be avoided. I believe they have good intentions....albeit the WRONG advise due to the primitive amounts of knowledge in this arena.

Diane  Cry
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Hmmm....seems I'm kinda "special" LOL
 
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trudy
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Re: Mother's Race Against Death to Get Degree
Reply #10 - Oct 11th, 2008 at 9:15pm
 
Trudy from New Zealand here, with a progress report.

We have explored the possibility of travelling to the US to have surgery by Gary Steinberg, however the cost is beyond our means...so we made contact with Andrew Law her in New Zealand once again.

At the end of September Grant and I went to Auckland and met with Mr Law for a second appointment with him. A repeat MRI/A was performed  Mr Law noted change. He stated "we need to take a serious look at surgery over the next 6 - 12 months.......".

I am so grateful to Mar and to Liz Cleaver for having made contact with me. In particular Liz, with Andrew Laws contact details....it does go to show that you do not have to accept the opinion of one, two however many Neurosurgeons, keep pushing untill you get a satisfactory answer. MoyaMoya is serious and needs to be treated that way.

Mr Law is reviewing my films with colleagues at a Neuro radiology conference an will update us after that.

I would not know there made been change MMD had I not have had another MRI/A performed, and in such short time.

It's scary stuff but we are onto it

Trudy Smiley Smiley
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lotsofkids
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Re: Mother's Race Against Death to Get Degree
Reply #11 - Oct 22nd, 2008 at 6:49pm
 
Trudy.....I am so glad to hear you are seeking treatment for your MM....there is a silver lining to this tragic story.

Keep us posted and best health to you : )

Diane
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Hmmm....seems I'm kinda "special" LOL
 
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Liz
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Re: Mother's Race Against Death to Get Degree
Reply #12 - Nov 18th, 2008 at 9:00pm
 
Hi this is Liz from New Zealand. Reading all these letters has made me sad for Nic. I had no idea she did not have contact with Andrew Law Neurosurgeon here in NZ. It has made me keep closer contact with people here in my own country. There is another lady here that has contacted me and I have been gently persuading her see Andrew but she has been put onto another guy. I have told her to get transfered to Andrew as he is our best and has been involved with your USA Dr Steinburg at stamford. Gee I still feel gutted to know about Nic. Yes she did not have to die through lack of knowledge in our health system. God bless you all for your support to all concerned Liz
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trudy
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Re: Mother's Race Against Death to Get Degree
Reply #13 - Jan 25th, 2009 at 7:25pm
 
Trudy from New Zealand here with an update,

On the 18th February I am having EDAS surgery performed by Andrew Law in Auckland New Zealand. It is an enormous relief that my MMD is being taken seriously....as many of you out there told me it should.

Following EDAS, burr hole surgery at some stage...

Kindest regards to all.

Trudy
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Re: Mother's Race Against Death to Get Degree
Reply #14 - Apr 7th, 2009 at 8:21am
 
Hi there .. hope all went well. My wife recovering very well. She had her surgery 7 yrs ago. There is always hope

Dean V
Hamilton NZ
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trudy
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Re: Mother's Race Against Death to Get Degree
Reply #15 - May 8th, 2009 at 9:12pm
 
Hi Dean,
Isn't this website great? It is only through the contact by a family member of a kiwi with MMD, that I learnt of Andrew Law in Akd. Presumably your wife had Andrew as her Surgeon.
I had the first of my two surgeries on Feb 18 Right EDAS and burr holes. I am having my second surgery June 10 Left EDAS and Burr holes
Sadly I have learnt of another woman who lost the battle recently, from Palmerston North. I am from Feilding down in the Manawatu and like Nic and now Paula, fall under Wellington for Neuro specialists - who seem not to be treating this Disease with the urgency it needs. It is only through my determination not to let this disease beat me (yet) that my husband and I ventured further afield and went to Auckland to meet with Mr Law.
All has gone well, and we are really excited about my up and coming surgery, will keep you posted if you wish
Regards Trudy
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« Last Edit: May 8th, 2009 at 9:25pm by trudy »  
 
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Mar
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Re: Mother's Race Against Death to Get Degree
Reply #16 - May 9th, 2009 at 1:23pm
 
Hi Trudy,

Thank you for the update. Iím so glad to hear your first surgery is over with and that youíre scheduled for the second. I hope all went well. Iíve thought of you often. My prayers have been with you. I love your determination!!! Being aggressive and fighting to get the proper care you need and deserve is what saves lives with this disease. You go girl!! I pray all goes well through your next surgery, so you can live a long, healthy, normal life. Weíll certainly be right there with you in spirit the whole time. †Smiley

Please keep us posted!

Mar
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Re: Mother's Race Against Death to Get Degree
Reply #17 - Sep 12th, 2009 at 7:45am
 
Has Trude done her second operation? Hope her everything going on well, still waiting for her update information. Tongue
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neurocytoma
 
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Re: Mother's Race Against Death to Get Degree
Reply #18 - Sep 21st, 2009 at 10:25pm
 
It's just gone three months since my second EDAS and Burr Hole surgery.
I had a Stealth MRI/A performed prior to surgery. Which my surgeon used to guide him through the procedure. All went well, and my recovery has coming along nicely.
Following surgery Mr Law said there is no reason for me not to live a long life now...which lifted a huge weight from our shoulders.
It is as though I've got my brain back, and with it my life. My husband and I recently went to a Rock concert in Auckland and had an absolute ball. I could never have coped with this prior to my surgeries, nor would I have contemplated going.....Life is good.

Thank you all for your support throughout,

Trudy and Grant Lawton
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Re: Mother's Race Against Death to Get Degree
Reply #19 - Nov 10th, 2009 at 3:14am
 
Thanks Trudy for let us know your recent information, I am also one of Mr. Law's patient, but different as you, what I've got is call tumor, already totally been cut off by Mr.Law, so I am another one to be recovered, let's enjoy our life.
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Re: Mother's Race Against Death to Get Degree
Reply #20 - Dec 21st, 2009 at 11:53pm
 
Merry Christmas and Happy New Year for many many years to everybody. Roll Eyes Roll Eyes
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Re: Mother's Race Against Death to Get Degree
Reply #21 - Dec 28th, 2009 at 4:08am
 
Thanking everybody for their support, and wishing everyone a Very Happy 2010.

Kindest Regards
Trudy and Grant Lawton
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