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CJ62

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new
« on: February 17, 2009, 02:56:26 am »
I'm new to this group. I am in a few other goups(NF 2,Meningiomas)I guess I don't know where to really go, I do have AN, one in each ear and VS(can't spell  it:), plus I have a host of other problems. I have 22 meningiomas,with 2 on my spine. I have had 2 operations , one in '03 and '05, and am one of the watch and wait people. I did loose my huband in 2002 from believe or not a Glioblastoma. Is it a coincidence we both had brain tumours? I am on disability, I do walk with a cane. Sometimes I feel guilty about this? Is this normal? I could probably do a sit down job as long as I don't move. I used to be a baker until all this happened. Anyway enough from me. Will "watch and wait' to hear from you.
                         CJ62
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Carol Juul

suboo73

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Re: new
« Reply #1 on: February 17, 2009, 04:21:15 am »
Hi Carol - welcome! (But sorry you are part of the AN club.) 
There are many WONDERFUL people here - i visit daily and amy grateful for all the information i have learned and all the support i have received. 
Sounds like you have some real challenges - i don't much about meningiomas, so i didn't know you could have 22!  WOW.
I am in Watch & Wait, also - but wouldn't have come here except for my older sister (aka Bigsister) was diagnosed about 8 months before me and told me about her symptoms.  So i had an MRI and there it was.

I so sorry on the loss of your husband - that must have been a trying time for you.
I don't think you should feel guilty about anything - sometimes i get very frustrated about my hearing issues, especially making people repeat everything.  Then i realize that they just don't know my situation, so it is not their fault. [and i don't feel like telling everyone.]

How big are your ANs and what is VS?
I am sure others will chime in that have experience with NF 2.

Please take care and know that my thoughts and prayers are with you.
Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

ppearl214

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Re: new
« Reply #2 on: February 17, 2009, 06:49:03 am »
Hi Carol and welcome.... as Sue notes, sorry that you join us but you have truly joined a terrific group here and for what is going on with you, we may be of help.

(Sue... VS is Vestibular Schwannoma, another name for AN) :)

I am sorry to hear about your husband... we do have a couple here (she logs on as "Sheryl") who are also enduring a "couples" issue.  Sheryl, I believe, has a facial schwannoma and her husband has meningioma (first time, surgery, then radiation on regrowth).  I also met a couple in England over the past Christmas holidays... she had her AN surgically removed over a year ago... he was just diagnosed with an AN.  I know the odds are low on that, but love carries them through it.

There are some here that endure NF2 and some info/knowledge/experiences noted to help you with your questions.  You sound like a very strong woman, enduring all that you have but forging forward to find the "normal" for you.  I look forward to your further participation here as I'm sure your knowledge and experiences will be truly appreciated by others here.

Again, welcome.
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

lacey7

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Re: new
« Reply #3 on: February 17, 2009, 07:28:18 pm »
Hi Carol,
I'm so sorry for all you have been thru.  I'm so glad you found this site, tho.  There are so many wonderful people here.  Stay awhile, and you will see!
I lost a child when he was 16 years old.......so I also know tragedy.....and heart break.
I hope you have a strong faith.....because that was the only thing that really brought me thru things that we have to face in the world.
God Bless you, and I hope to talk to you again. 
Lacey
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Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Kaybo

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Re: new
« Reply #4 on: February 17, 2009, 08:03:30 pm »
Carol~
Just wanted to say "Welcome" to our happy, little group!  You won't find better, more caring people anywhere - feel free to join us when we are serious and when we are crazy...it helps to keep us from going CRAZY sometimes!!
 ;D
K
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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!

leapyrtwins

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Re: new
« Reply #5 on: February 18, 2009, 07:38:27 am »
Hi, Carol and welcome to the Forum  ;D

Although I'm not NF2, I just wanted to assure you that you'll get lots of support from all of us here. 

As Phyl mentioned, there are several NF2 patients on the Forum - Tony, Raven, Jeff, and Cheryl R come to mind.

Jan

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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

Cheryl R

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Re: new
« Reply #6 on: February 18, 2009, 09:39:41 am »
Hi Carol,      I am sending you a personal message as my NF2 gets boring after being written here several times.       Good you have joined the forum,                 Cheryl R
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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

CJ62

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Re: new
« Reply #7 on: February 18, 2009, 10:20:32 pm »
Hi all,
     You know this might sound stupid, but I don't even know the size of the AN's, as I told Cheryl, not big enough for surgery :).I told Cheryl, I emailed her personally, I don't keep real good track of stuff, I know I should, but when I get my MRI's I go to my doctor right afterward and take Ativan, probably to many :D but I can't remember everyting he tells me but I listen for the word "surgery" and I know I should take someone in with me but it would have to be my parents and I would rather not have them with me and if I took someone else they would feel insulted, anyway it's just watch and wait, so far so good. I'm not too good at finding replies and stuff or where they are so it takes me awhile to find replies, trust me I look, it ,ight take me awhile to respond, but I will. Take care
              Carol
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Carol Juul

suboo73

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Re: new
« Reply #8 on: February 19, 2009, 05:29:36 am »
Carol,  I have to say that your last comment was NOT stupid!  Keeping track of all these medical issues is a full-time job.  I still don't have all the reports, and didn't keep hearing tests from the past - am i bad. (Sure wish i had that information now.)  You can always try to have the reports mailed to you later.  I have started having EVERYTHING mailed to my family doctor - and we still haven't sat down with him to discuss my AN yet! (i have an appt. in April after next MRI).  But he will have the info. all in one place.  And i should be able to get a copy if i want one.

Anyway, i hope you will think about taking someone to your appointments with you - others hear details you might not.  But i also know this is a hard decision if you feel it will upset your parents.  A friend of mine has worked as a home healthcare 'helper' (she is not a nurse yet) and she has gone with some of her 'clients' who had no one else to help.  She said she goes with the client and has the patient introduce her as Mrs. so and so.  (She dresses very business like and carries a briefcase.)  Then she helps take notes throughout the visit, ask questions, etc.  My friend said this is particularly effect if the doctor is one of those types that thinks 'you won't understand the technical stuff' and does not explain things thoroughly. (Not to say your doctor is like that.)  --- I take my husband with me - but sometimes i think a 'neutral' 3rd party would be even better.

I hope you will continue posting on the forum.  Such WONDERFUL folks here, and no question is a dumb question!
So now i will ask you a question - how do they treat 22 mennigiomas? (I can't spell, sorry!)

My thoughts and prayers are with you!

Sue

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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

leapyrtwins

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Re: new
« Reply #9 on: February 19, 2009, 11:18:23 am »
Quote from: suboo73 on February 19, 2009, 05:29:36 am

I hope you will continue posting on the forum.  Such WONDERFUL folks here, and no question is a dumb question!

Carol -

I agree with Sue and hope to "see" you around this forum for a very long time.

I have no head for medical stuff either - I'm a bean counter by trade - so you are definitely in good company  :)

Jan
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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
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