Author Topic: Pre-treatment symptoms  (Read 16018 times)

amye

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Re: Pre-treatment symptoms
« Reply #30 on: April 14, 2009, 12:15:19 pm »
Thanks to everyone for your posts! I certainly feel much less alone with this than I did a week ago when I joined the forum. Since my earlier posts, I have consulted wit Dr. Freidman at House and he is recommending the Middle Fossa surgery because my hearing is still very good. This scares me because it seems to be a riskier surgery in terms of other complications. Any advice/input on this is welcome!

Has anyone had Middle Fossa and retained hearing?

I have also been in contact with Dr. Kondzoilka at U Pitt -- he sent me a letter stating that I am a "great candidate" for radiation, yet I still haven't talked to him. I have lots of questions about my balance issues and GK.

In the mean time, I continue to be plagued with bouts of vertigo, dizziness, and vision problems. The medications that were helping a couple of weeks ago are not as effective now, and so I am seriously considering treatment in the next few weeks (as opposed to my initial plan to wait six months). I'm pretty miserable with these symptoms, and am having trouble taking care of my babies, working, etc. I wish I knew if they would eventually stop!   

Thanks again for all the unput!

Amy

Cheryl R

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Re: Pre-treatment symptoms
« Reply #31 on: April 14, 2009, 12:28:42 pm »
Hi Amy, Actually any of the surgeries can have complications and tumor location is  factor in it.              Cathy who is doglover had her hearing saved with mid fossa last summer.                I am NF2 and was deaf prior to one mid fossa and not sure why he did it.        A year ago this Fri the 17th, I had mid fossa done on the other side and was almost all the way deaf and it brought my hearing back to fairly good.            We both go to Univ. of Iowa and Dr Bruce Gantz.        I know a lady from Erie PA who had hers saved.  She is not on the forum.             There was mention of others recently when someone asked the same.            Some time what problems you may have are also due to how the tumor has damaged that nerve, which with your size should be less than some have had.                  I had temporary facial paralysis with the first mid fossa but none on the other side.    Cathy had none also.                             Good luck on trying to decide what to do as it is a challenge.
                                                                  Cheryl R
         
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

leapyrtwins

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Re: Pre-treatment symptoms
« Reply #32 on: April 14, 2009, 08:45:43 pm »
Cheryl is right.  All the surgical approaches have the potential for side effects.

Mid fossa does give you the best chance of retaining your hearing though and there are many forum members who had mid fossa and kept their hearing.

Retrosigmoid gives you a chance of hearing retention also, but it's results aren't as good as mid fossa.  I'm a perfect example of that.  I had retrosigmoid and ended up SSD.

Jan
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

Tumbleweed

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Re: Pre-treatment symptoms
« Reply #33 on: April 14, 2009, 09:34:57 pm »

I don't think I was aware that Tumbleweed had that much vertigo going on prior to treatment - or I forgot. It is actually quite encouraging to hear that it did settle down in time, either the other side compensating, or the AN finishing what it started, or some of both. I am curious, Tumbleweed, whether the vertigo subsided before treatment? Does it make sense to wait for it to settle down again before you get radiation?

Steve, my vertigo went completely away several years before I got treated. (I was misdiagnosed for over 7 years.) At the time I was diagnosed, I still had 29% of my balance function remaining on the AN side, but no vertigo (just disequilibrium). So the AN didn't quite "finish what it started." Dunno if it's best to wait for vertigo to settle down before getting treated. Some people have disabling vertigo for many months or years, during which time an AN may grow significantly. They tend to grow slowly, of course, but can have growth spurts (like mine did just before treatment). Of course, and as Steve is well aware, radiosurgery can make whatever symptoms you currently have worse, so this is definitely something to consider. Amy, I'd ask your doctor about the risks of having your vertigo get worse with treatment.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

amye

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Re: Pre-treatment symptoms
« Reply #34 on: April 15, 2009, 08:55:38 am »
Good advice, TW. This is why I am leaning toward surgery rather than radiation. I really wish my symptoms would abate for awhile so I could get my baby through his infancy, but things seem to be getting more chronic, which may mean surgery SOON. I'm having a VNG on Friday which will hopefully shed some light and help with decision-making.

TW, how is your balance now?

Thanks to all for your support. This is REALLY HARD!!!

Amy

Tumbleweed

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Re: Pre-treatment symptoms
« Reply #35 on: April 15, 2009, 09:49:07 pm »
My balance is not that great, but I don't have vertigo or oscillopsia anymore. If I stand on one leg and close my eyes, I fall over after about 5-10 seconds. Crossing a log over a rushing stream is impossible, too. But in my everyday life at work, I usually don't notice my disequilibrium; I typically only notice it when I'm walking.

Amy, I'm not sure there is any less risk in having your vertigo get worse with surgery vs with radiation. If the tumor is adhered to your vestibular nerve and must be "scraped" off, the nerve may be damaged as much as it would be by getting a hit of radiation. And the risk of damage to the facial nerve is, from what I understand, considerably greater with middle fossa surgery than with radiation.

Your doctor will be able to give you the "odds" of damage to various nerves and function with each type of treatment. I would recommend you get at least a second opinion. I got 6 opinions. When they all recommended radiosurgery (some recommended CK, others GK), I knew I was making the right decision by choosing radiation. Having a bunch of professional opinions will give you a clearer picture of your options and the general consensus about the best treatment for you and will get you past the roughest part of this process -- choosing when, where and how to get treated.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

amye

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Re: Pre-treatment symptoms
« Reply #36 on: April 16, 2009, 08:03:32 am »
Thanks for your input, TW.

What is oscillopsia?

Amy

amye

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Re: Pre-treatment symptoms
« Reply #37 on: April 16, 2009, 08:07:25 am »
TW, never mind...I googled it. That is exactly what I have following my vertigo bouts!

Amy

moe

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Re: Pre-treatment symptoms
« Reply #38 on: April 16, 2009, 08:42:56 am »
Hi Amy,
I've been reading the posts, and hope you are feeling better. So much stress surrounding a newborn, your other "baby"- they require A LOT of attention when a new baby enters the home, breastfeeding, AN, etc!
Enough to make my head spin >:(
I understand wanting to breast feed through this all but have you considered stopping after 12 weeks? I've heard 3 months is the minimum recommended time for gum/teeth/immunity benefits.
Has your doc discussed short term steroid treatment to calm things down?
I was lightheaded for years, and just not feeling good. I was trying to figure out what the heck was wrong with me. I even diagnosed myself with Meinier's (?) disease before I had my MRI, but I wasn't having
the vertigo.
Youand your body are under so much stress. I feel for you. All of the symptoms get worse, whatever they are.
Hang in there. Enjoy your newborn lying down, and hopefully you have help with your other "baby".
Maureen

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Tumbleweed

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Re: Pre-treatment symptoms
« Reply #39 on: April 17, 2009, 12:49:48 am »
Hi, Donnalynn:

I don't doubt that in your case middle fossa did offer the best chance of avoiding facial paralysis, if that's what your doctors said. And from what I've read, there is only a slight increase in risk of facial paralysis with the middle fossa approach compared to that with other surgical approaches. But my understanding is that the prevailing opinion is that middle fossa increases risk of damage to the facial nerve because it involves coming into the IAC from above the ear; and since the facial nerve is the topmost of the four nerves (those being the facial, superior vestibular, inferior vestibular and hearing nerves, from top to bottom) running inside the IAC, it is "in the way" when approaching the vestibular nerve, the common site for an AN (AKA vestibular schwannoma). A skilled surgeon can usually avoid nicking the facial nerve, but still, the facial nerve is more in the way of getting the job done with middle fossa approach than with any other approach.

Of course, I'm no doctor. But it's good to know this stuff so that anyone who is considering surgical resection can ask their neurosurgeon about the attendant risks of each approach and why a specific one is being recommended.

Sincerely,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

suboo73

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Re: Pre-treatment symptoms
« Reply #40 on: April 17, 2009, 05:23:52 am »
Hi TW!

Thank you for the lesson in anatomy!  Gee, i always learn something new on the Forum about ANs, where they grow, etc., etc.
When i went for a surgical consult at Hopkins, the doctor there told me he no longer does Middle Fossa, i THINK because of the tendency for additional complications, but i would have to ask again to be sure.  None-the-less, i found this interesting.  I suppose surgeons have their preference on the approach, and that's fine.  This was my first and only surgical consult to date, so i have nothing else to compare to at this point.

Amy - i hope you are finding some answers to your questions on the Forum. 
Aren't these folks fantastic??!!

Keep us posted.
Thoughts and prayers to you and your family.
Sue

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

cindyj

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Re: Pre-treatment symptoms
« Reply #41 on: April 17, 2009, 05:27:14 am »
Amy...how you feeling today?  Hope you get some answers from the docs today!

Talk w/ you later,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

amye

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Re: Pre-treatment symptoms
« Reply #42 on: April 17, 2009, 09:17:28 am »
Hi Everyone;

Just got back from VNG test - found out I'm down to 50% vestibular function on AN side. Guess that's good news in a way...hope it finishes the job so I can get some peace!

Thanks again for all the support,

Amy

heyct

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Re: Pre-treatment symptoms
« Reply #43 on: April 20, 2009, 07:16:00 pm »
Hi Amy,

Welcome to the group. I must've missed your posting because I am NOT Watch & Wait. I totally feel what you're going thru. I have an active 20 month old. I've been totally anguished over how to take care of him while I recuperate (if I have surgery). It has been obcessing my brain & for me is the hardest part of this whole ordeal. At least your baby is still young enough that hopefully your friends and family are still eager to come see, visit & hold him/her. Hopefully your 2 1/2 is kind of growing out of the needy, tantrum stage mine is just starting...altho I'm told it lasts until 18:) I kind of live in the outskirts of town & people don't usually just drop in. I'm even thinking of paying for a nice family portrait because I'm afraid my outside will never be the same.

Hey, what is a VNG test? I never had one. Maybe because I'm in the "do something" stage.
You can check out my postings. I think I had one for Surgery w/a Toddler & Balance questions.

I'm going to post an update as soon as the tyke is fed & put to bed.
Best of luck in your journey,
Carolyn


Diagnosed 2/09
9 x 6mm
Translab Surgery: 5/20/09, Stanford..it was a Hemangioma!
Almost complete removal, will have to do update MRIs.
BAHA Ponto Pro 5/9/11

 


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