Another Schwannoma Newbie here, located in Boston, MA

[ppearl214]

Hi all... in speaking with Marie at ANA, she mentioned the site and I thought I'd say hi...

Was diagnosed with initial MRI in May, 2005 with Schwannoma.  Had repeat MRI last week and confirmed. Also dealing with Chiari I Malformation, so as you can see, I got my hands full.

44 yrs old, size of Schwannoma is 5mm x 8mm left IAC with IAC enlargement.  Have facial numbness and minimal hearing loss occuring, as well as headaches.  Balance issue is debatable as it could be the schwannoma or the Chiari I Malformation (lucky me!)  .... I've lucked out and obtained a great neurosurgical team here in Boston at Brigham & Women's Hospital and will meet with them this Friday to discuss options. 

I have read some of the posts here, including the questions to ask (pre-op) and I can see you all are terrific in providing support.  I am very lucky to have stumbled (sorry for the pun) onto you all and look forward to chatting with you to learn more about what I am dealing with and up against.

God bless to you all and be well.
Phyl

[barbjo]

Hi  !

Wow...you do have you hands full.  I just "trip" on his site myself, seems to be alot of support and information here.  I definately want to know of your journey and definately want to throw my support and wishes your way!  !

[ppearl214]

Hi  !

Wow...you do have you hands full.  I just "trip" on his site myself, seems to be alot of support and information here.  I definately want to know of your journey and definately want to throw my support and wishes your way!  !

thanks barbjo!     I really appreciate that... been a weird feeling trying to share with family and friends, but truly appreciate the boards here and getting to "meet" others in the same shoe.... had no clue the extent of the symptoms, the procedures and especially the outcomes till I read the boards here.  I'm glad there is a community here where we can all relate.

Based on some of the posts I'm reading here, sounds like mine is a bit larger (5mmx8mm) compared to others..... so, unsure which road I should take on something like this... GK?  Wait & see? Op?  If I feel lost, now is it...  thoughts?

[barbjo]

Based on some of the posts I'm reading here, sounds like mine is a bit larger (5mmx8mm) compared to others..... so, unsure which road I should take on something like this... GK?  Wait & see? Op?  If I feel lost, now is it...  thoughts?

Since we have differences in size and location it is hard to give an opinion.  Do you have the ability of time to wait and see?  My surgeon never gave me treatment options.  It was going to be surgery, that must be done within a 2 month window...period.  That was all my husband needed to stay on me about setting up a date for surgery.  I am just learning now my oversight on not researching options, but I think I would of done surgery even knowing what I have learned recently.  I recovered from surgery within 2 months and regained (through therapy) some of my balance within 3 months.  All options are scary...heck this whole thing is scary.  Make a discussion you above all can deal with! 

[ppearl214]

Thanks barbjo!

Since we initially stumbled on this in May, we did the MRI then. Then, met with the neurosurgeons who wanted to make sure it was a schwannoma (Family history of brain tumors, so we needed to make sure)....decided to wait and see after 2-3 mos, then re-MRI... Re-MRI last week and meet with the surgeon this week.. so, thus far, we have waited to see.  I'm not so thrilled about going under the metal knife but family members remind me that is was not meant to be there so just go in and get it. After reading the boards here, there are more options than I originally thought and need to do more research re: radiation therapies and wait and see.  Since my symptoms have manifested but not as bad as they could be, it's the old "go in and get it now" or sit tight attitude.  Of course, family members and friends all have their thoughts on it that I am weighing, but trying to look at this as knowledgeable as possible too.  There are other posts here that do bring up other options that I was not aware of and need to make sure my surgeons are doing these kind of procedures, so now, more questions than ever.

I guess I'm still a little lost and confused about which road to take....and I thank you for sharing any and all thoughts on this...

signed,
Lost and befuddled in Boston

[Raydean]

AN and Chiari 1, now that's a combination!  It was my husband with the AN and my daughter with the Chiari 1.  In researching your options be sure and ask about the positioning during treatment and if it would have any affect on the Chiari 1.  You will be my family thoughts and prayers.  Knowing how rare both of these conditions are it makes things more difficult.  if i can help feel free to e-mail me anytime.

In regards to the chiari how many mm is the cellebellar tonsils.  We're you decompressed?  or wait and watch ? Does your doctor feel there is a relationship between the two?  (AN and chiari)

Best to you
Raydean

[ppearl214]

Hi Raydean and thank you  for  your words and thoughts...  based on the MRI report of this week (I got the  radiologist to give it to me before I even met with the  dr!)... says the  following regarding the AN and the Chiari:

Chiari:
"The inferior margin of the cerebellar tonsils  projects approximately 2-3mm below the  level of the plane of the foarmen magnum, which is a boarderline position of the cerebellar tonsils.  Lower tonsiloar position, less than 5mm may be regarded as anatomic variation, although  some patients may be symptomatic with this degree of tonsilar ectopia"

AN:

There is a tubular mass of  post gadolinium bright T1 signal characteristics in the left  internal auditory canal with moderate enlargement of the left IAC, consistent with intracanalicurlar and pourous acousticus acoustic neuroma.  No masses are seen in the  right IAC.  The left internal auditory canal enhancing mass lesion measures approximately 8mm from the right to  left x 5mm in anteroposterior  diameter with vertical height of 4mm."

One of these days, these doctors are going to  speak laymen  English!

So, as you can see, I got them both and really trying to hang tough and remain mentally strong.   As I just received both diagnosis and  am a little lost right now in what to do, granted there  is no cyst with the  Chiari,  my symptoms of  headaches (oy, the blinding headaches are overwhelming... feels like my right ear wants to explode from the inside out!), weakness and pain in my legs (using a cane a bit more often), facial numbness, etc... 1/2 the time, I can't  tell  which diagnosis is  doing what.

I work  full time  in a sales office, selling computer chips... I live alone (2nd floor of   an apt in a house), have a dog (she literally "drags" me when I walk her) but try to remain as vibrant and travel  and come and go and drive, etc, as I can.

So,  as you can see, I'm feeling a bit  lost and unsure as to how to approach both... I know I have to take  things one at a time and I figure dealing with the NA comes first... and learning to deal with the Chiari 2nd....

My best wishes to you, your husband,  your daughter.... they are now in my thoughts and prayers as well... and thank you for the offer  of your inbox... I may  just take you up on it.

Phyl

AN and Chiari 1, now that's a combination!  It was my husband with the AN and my daughter with the Chiari 1.  In researching your options be sure and ask about the positioning during treatment and if it would have any affect on the Chiari 1.  You will be my family thoughts and prayers.  Knowing how rare both of these conditions are it makes things more difficult.  if i can help feel free to e-mail me anytime.

In regards to the chiari how many mm is the cellebellar tonsils.  We're you decompressed?  or wait and watch ? Does your doctor feel there is a relationship between the two?  (AN and chiari)

Best to you
Raydean

[Raydean]

I'm not a doctor, but regarding the Chiari diagnoses.  I think that he's saying your borderline.  Many doctors think anything under 5 mm may or may not be chiari  (even at 9 mm, some of my daughter's doctor's feel she's borderline.)  Cellerbellar tonsils are the portion on the brain that are are being push down, in your case  2 to 3 mm  Your doctor will explain symptoms to watch for that would indicate the need for immediate treatment. Addition MRI could be done of the spinal column to evaluate spinal fluid flow. Otherwise it's a wait and watch, treating symptoms with medications. There is a surgery  that can be done, but usually not at this early stage.  Our game plan is to wait and watch, usually sometime in a person 30's the brain will naturally shrink alittle, which may self correct the problem. My daughter also has severe headaches, (way beyond migraine) arm, leg numbness. Facial numbness and at times slight speech difficulties and balance problems.  These symptoms are attributed to the Chiari.  She's been advised to forego high risk activites that would result in a fall, such as roller skating.  My daughter sees a neurosurgeon for the Chiari and works with a person that specializes in headaches management.  As you have mentioned the Chiari does interfere with her quality of life, especially the headaches.

You mention right side ear pain, and the report mentions left side AN so it's my non doctor guess that it's the chiari symptoms.  There are doctors that specialize in chiari that you should be referred to.  Regarding the AN your options would include wait and watch, radiation and microsurgery.  Be sure and have your AN doctor consult with your chiari doctor.

Again anything we can help with please feel free to e-mail.  It must be pretty overwhelming to receive both diagnoses.  The good thing is with both conditions you have time to research and plan your treatment route for both.  Don't let any doctor with either condition rush you.  Explore your options. 

all the best to you
Raydean

[ppearl214]

Raydean, thank  you so very much for  sharing  your insight regarding my situation....  as you can see, since dealing with both diagnosis, it's very difficult   to see  which is causing what symptoms.....I have one neurosurgery  team at Brigham & Woman's in Boston (Dr.Peter Black  and Dr. Eliz Claus)....they are on the  forefront  of brain tumors and  use of  MRI (their most recent research, which  can be   found online), so I am currently  working  with them on this intial  diagnosis and what direction I should take.    I need to research their background in AN and  Chiari to see how they  can  help or should I be researching others out (ie: House Clinic, etc).....

All too new for  me and I don't  believe I  am in an emergent situation.... if anyone is going to be touching and playing around with  this puny brain I have, I want  to make  sure I got the  best to  do  the work!

There's a terrific  post here about what pre-op questions to ask and I think I'm  going to use it.... covers all and  want  to make  sure Drs Black  and Claus meet the necessary criteria.....

Continued thoughts and prayers to you all... and don't know how to say a proper  thank you for  sharing this info with me... and reaching out a helpful hand... truly appreciated.

Phyl