Author Topic: 3,1/3,2/3.0 cm after surgeory?  (Read 3166 times)

olive

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3,1/3,2/3.0 cm after surgeory?
« on: February 24, 2020, 12:17:40 am »
I am 43 years old woman from Roumania and my neurinoma was 3,7/3,6/3,2 cm before the surgeory.In the anathomo patologic paper thy wrote that they analized a piece of 1,8/1,5/0,4 cm .Every time i went to control doctor said i am ok and never told my or write somewere how much they cut.next irm at 6 month from the surgeory i descover is still huge.my doctor has the same reaction he said everithing is fine and sent me at home.i made  the surgeory in june 2019 and the irm in december.i want to tell you that he did not tell me nothing about nothing,i trust him and hope at least at the control to tell what happent but he is verry quiet .he let me a holle in my occipital bone and i suppoze he covered with neck muscle after.After this i went to anotherdoctor and he told me that i am verry lucky the tumor did not grow up in this 6 month but another surgeory is a must soon and my conclusion is everybody from the hospital lies.I am curios to now your opinion because i think first doctor plays with my life.sorry for my english!
I forgote to tell you when i went first time to the doctor i only has 20 percent lost hear in left side no ather simptomes and he say is an emmrgency when i ask to have the surgeory after 2 3 month.maybe i do not now how to measure this,maybe they cut more because is a nonconcordance between what they say and what i see,i dont know.If they cut 1,8/1,5/0,4 that means it sould be now 1,9/2,1/2,8.what do you think?
3,7/3,6/3,2 an left side discovered at mri in may 2019
3,1/3,2/3,0 after surgeory,defness in left ear and a big holle in my skul.the cut was 16 cm cross the midle of the head

Patti

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #1 on: February 25, 2020, 09:18:05 am »
wow! i am so sorry to hear about your difficult medical treatment. i have no thoughts on this other than sympathy for the way you have been treated. i will pray for you.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

olive

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #2 on: February 25, 2020, 12:15:35 pm »
thank you for your thoughts,Patti,the truth is i am verry scared for what will be,i read this forum and i see manny people with second or therd surgeory.i dont know if i can live again the pain that i felt,i think soon i will have a big depresion.I feel like nobody understand me,when i speack with my friends and my relatives they look at me and change the subject. i want to find a way to fix this problem for good but in my country is verry dificcult if no have good money.when i found out about the tumor i thought i am gonne die and i ran fast to surgeory,instead of read more about it.i did not know what questions to ask the doctor and his silence gave me trust instead of doubts.being the goodest hospital from Roumania i hoped they know what they do,but i was wrong.
3,7/3,6/3,2 an left side discovered at mri in may 2019
3,1/3,2/3,0 after surgeory,defness in left ear and a big holle in my skul.the cut was 16 cm cross the midle of the head

olive

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #3 on: July 01, 2020, 07:58:40 am »
Hello,everyone!I went again to the second surgeon and he told me that my neurinoma is growing slow and i need another surgeory.This time i will go to that private hospital,the cut will be 3,5 cm and he really try to take out all.If i would go from the first,now i would have my skul entire and my cerebel to.I found out this hospital is the only in Roumania where they treat succesful neurinoma.There is a very young and excellent doctor and i dare to recommend to enyone in this area,even before my surgeory.He operate hounderds of cases with no recidiva or other problems.I raise money online for my surgeory,and i hope in the autumn  i will finish this sad story.Untill then,i hope i will not lose my senses.I am verry scared but i want to be strong for my little girl.
3,7/3,6/3,2 an left side discovered at mri in may 2019
3,1/3,2/3,0 after surgeory,defness in left ear and a big holle in my skul.the cut was 16 cm cross the midle of the head

olive

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #4 on: August 26, 2020, 05:38:37 pm »
Hello,i am verry happy to tell you that i had the second surgery,and the tumor is gone!The surgery was on 20/08/2020,and i arrived at home on 24/08.Amazing,i feel verry good.
3,7/3,6/3,2 an left side discovered at mri in may 2019
3,1/3,2/3,0 after surgeory,defness in left ear and a big holle in my skul.the cut was 16 cm cross the midle of the head

gbly

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #5 on: October 11, 2020, 11:11:51 pm »
Olive,
I just saw your entry, congratulations on the successful surgery.  I am so glad it went well and that you are feeling good as well.  Your positive attitude on your last post definitely helps with the healing (at least I like to think so).
Keep us posted.  Was there any discussion of followup radiation is any part of the cells from the tumor were left?
GB

simo123

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #6 on: October 18, 2020, 09:36:04 am »
Olive, I am very happy your problem has been solved. Now, I find it interesting that I have a similar story: I am a 31 female from Romania, and I had a surgery when I was 23. My tumour also had around 3cm diameter. After the surgery the doctor told me he removed 70% of the tumour but the next scan showed the tumour was slightly smaller than 3cm. His explanation was that the tumour has some kind of hard shell and that he removed most of the tumour from the inside of this shell. I had one Gama Knife session 6 months after the surgery, with a different doctor. Every two years I go for a control MRI scan. He says that things look good (necrosis). My tumour still shows just a slightly smaller size in MRI scans...

olive

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #7 on: November 19, 2020, 04:16:36 am »
Hello everyone!I made the surgeory to Brain Institute in Monza Hospital ,Bucharest.The doctor was Sergiu Stoica and his team.They took out all the tumor,only a small part of the shell that adhere to the facial nerve remained It was not necesary any of radiotherapy,i will go after six month with a MRI to see how it is.I am almost sure that will nerver grow up again.The doctor ask me before the surgeory if i am scared:Offcourse i was,but i answered that i trust him,and the trust and fait is bigger than fear.And i was right,i choose the best surgeon of the area.I am happy to see sombody reading my post,and if you like,feel free to mail me.
3,7/3,6/3,2 an left side discovered at mri in may 2019
3,1/3,2/3,0 after surgeory,defness in left ear and a big holle in my skul.the cut was 16 cm cross the midle of the head

gbly

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #8 on: November 22, 2020, 08:33:05 pm »
Olive,
Congratulations on a successful surgery.  Please keep us posted and how your MRI goes.
GB

SP

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #9 on: December 06, 2020, 07:43:45 pm »
Congratulations Olive! all the best for a healthy recovery.

Be well,

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17-19, 2015 (Drs. Chang & Soltys)

olive

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Re: 3,1/3,2/3.0 cm after surgeory?
« Reply #10 on: June 14, 2021, 11:04:56 pm »
Hello again,my 1year after IRM looks fine.But what was the chance my little girl to have a big tumor at cerebelum?Small....In december last year she lost slowly the equilibrum,she was very angry all the time,no yeat good,,no sleep good,also constipated and go to pee one time pee day.After 6 doctors,pediatric,orthopedic,neurolog and psihiatric(all of them told me that i am crazy,)i went again at Monza Hospital.After IRM,i foud out that my little girl had a big astricitom pylocitic,5,6 cm with hidrocefalia.Offcourse,in one week,i went to hospital and she was operated from the same doctor as me.The surgeory is a succes,and they told me is not a genetic problem,just badluck for us.
3,7/3,6/3,2 an left side discovered at mri in may 2019
3,1/3,2/3,0 after surgeory,defness in left ear and a big holle in my skul.the cut was 16 cm cross the midle of the head