Author Topic: Newbee Young 25 pregnant help please  (Read 4747 times)

mrssummerville

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Newbee Young 25 pregnant help please
« on: April 18, 2013, 03:37:50 pm »
Hi there!
I dont have a lot of information yet as I have yet to see the neurologist but here is my story maybe you can give me some advice. I went to the ER for stroke like symptoms numbing from hand to face and migraine. I was given an MRI and sent home. The OB (im 22 weeks pregnant with my 2nd) told me I have an AN on the left side it is 1.7x.06 cm transaxuial demention. This was just an incidental finding.  Thats all I know. I had my daughter at home last year and would like to have another home birth. Does anyone know if this causes me to have to have a c-section? I feel so confused and scared. I have no symptoms and all I read about is surgery that will cause me to be def in one ear and facial paralysis. Is this the case with all surgeries? I just dont understand how I can go from being a normal young mom to all this just because of the surgery. based on the size do you think I will have any other options? Im assuming this is estrogen growth related as I had fertility treatments before my first daughter and 2 back to back pregnancies. Im sure Im jumping the gun but any info would be helpful I have to wait a month before seeing a neurologist. I would also like to have more children if this has an effect on the answer to other options.

Jim Scott

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Re: Newbee Young 25 pregnant help please
« Reply #1 on: April 19, 2013, 08:29:02 am »
Hi ~

Frankly, the questions you pose should be answered by a medical professional.  However, I can offer this: your tumor size is likely to make non-invasive radiation treatment a distinct possibility.  Although radiation carries it's own risks, it is easier than surgery.  I can also assure you that partial (single-sided) deafness and facial paralysis is not a guaranteed result of AN surgery, although they are a possibility and must be considered when choosing treatment.  Finally, the fact that your AN is relatively small may allow you to 'watch and wait' (observe) until you've delivered your baby and are fully recovered.  Semi-annual MRI scans will be necessary to determine if the tumor is growing or dormant.  Any signs of growth will require a decision - and action.

I suggest that you send for the ANA pamphlets available (see the home page of this website to order) and be pro-active when you consult with the neurologist.  Make a list of pertinent questions (the ones you've posed, here) and try to bring a supportive friend (or your spouse, if possible) to write down things the doctor says that you may miss or forget. Of course, these forums are available 24/7.  Our knowledgeable members are  eager to help answer questions to the best of their ability with the understanding that we are AN patients sharing our experiences and not physicians that can offer personalized 'medical' advice. 

Thanks for joining and I trust you'll get through this just fine (most AN patients do) and deliver a healthy baby into the world.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Kaybo

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Re: Newbee Young 25 pregnant help please
« Reply #2 on: April 19, 2013, 08:47:42 am »
Hi Mrs Summerville~

Welcome to the best place you can be, even though you really don't want to be here! ::)  I, too, am not a Dr but was a bit similar to your circumstances.  I was 25 when they found my tumor but unfortunately the medical term for mine was "HUGE" - I wasn't pregnant at the time but went on to have 3 beautiful daughters AFTER my surgery (which I did have LOTS of complication because of the size of the tumor - thankfully, you don't have that to worry about!). The last birth, the Dr did asked that forceps be put in the room because he didn't want me to have any extra "pushing" stress - I don't know WHAT he was thinking - even he knew I would have it super fast!!  I had my first in 3 hours (start to finish), second in 2 and then the last was only 46 minutes (w/them holding her in until he got back - I TOLD him he better not leave!  LOL!) - NO pushing!  Anyway, that is something you will have to discuss with your Dr but unless it is already pressing on your brainstem, there MIGHT be a chance.  I think the biggest issue here though is that YOU & your baby have the SAFEST delivery possible and if things have to change a little from your plan to accommodate this, you can go with that. I am surprised that you are having to wait a month to see the Dr since your circumstances are a bit different than most.  What area of the country are you in and is this someone who has SPECIFICALLY dealt with MANY Acoustic Neuromas?
I'd be more than happy to chat with you more if I can help you in any way!

;D
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!

mrssummerville

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Re: Newbee Young 25 pregnant help please
« Reply #3 on: April 19, 2013, 09:12:06 am »
Thanks guys,

I live in New Mexico and can not find anyone or any info on-line about someone in my area that has treated a lot of AN's. I also have Tricare (military insurance) that makes it a little more difficult. I didn't think I would be a candidate for radiation because of my age but I'm kind of hoping I'm wrong. My wish is to not do anything until this baby is born and I plan on another home birth but understand that they might be a little weary of that. I also plan to breastfeed her for a year and don't know how that plays into all of this, much less surgery. We would also like to have more children so I'm not sure how that plays into all my options. I have sent out for the free packet and have also posted in the Dr's forum hoping to find a Dr in the area.

mk

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Re: Newbee Young 25 pregnant help please
« Reply #4 on: April 19, 2013, 10:18:38 am »
Hi,

sorry that you have to deal with all this. This is really unfortunate, considering also that you are pregnant and you should be ideally focusing on your pregnancy and your other young child. The positive thing is that your AN is still very small, and you are asymptomatic. This most certainly means that you don't need to rush into anything.

Of course we are not medical professionals, but we do share our experiences. So here is my experience: I had both my children before I knew about my AN. But for sure it was there during both pregnancies, because it was large when I was diagnosed, right after the birth of my son and based on the projected growth rates, it must have been quite large even when I had my daughter. I had both children delivered vaginally, breastfed both of them, and the pregnancies were entirely normal (no hint at all of what was about to follow ...). So for sure it can be done.
About the home birth, this is obviously something that you should discuss with your health care professional. Personally I would err on the safe side, to make sure that medical help is readily available if needed given the situation.

Regarding estrogen treatment etc., there is no real proof about anything. I didn't have any estrogen treatments etc., yet developed an AN. I have quite a few friends who had fertility treatments, but no AN.

Finally, as Jim said, SSD and facial paralysis are not guaranteed outcomes. I am SSD, but I don't have facial paralysis after GK and surgery. Given that your AN is so small, you most likely have the option of all treatment methods, some of which include hearing preservation approaches (such as middle fossa surgery, and radiation).

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Kaybo

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Re: Newbee Young 25 pregnant help please
« Reply #5 on: April 19, 2013, 01:30:43 pm »
I am from and lived 11 years as an adult in Amarillo...I know there are some Dr's there who do AN's but not very often - I would want to go to someone more knowledgeable.  Maybe Lubbock...but I would head to House in LA or Houston...just my 2 cents!

K   ;D
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!

LakeErie

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Re: Newbee Young 25 pregnant help please
« Reply #6 on: April 19, 2013, 04:27:45 pm »
Near you in Phoenix is Barrow Neurosurgery which is a high volume AN treatment center.  From the website:

OVERVIEW
Barrow Neurological Institute® at St. Joseph’s Hospital and Medical Center is an internationally
renowned medical center that offers care for people from throughout the world with brain and spine
diseases, disorders and injuries. Robert Spetzler, MD, one of the world’s leading neurosurgeons, is
the director of the Institute which performs more neurosurgeries than anywhere in the United States.
U.S. News & World Report routinely lists St. Joseph’s as one of the best hospitals in the nation for
neurological and neurosurgical care.
CENTERS, CLINICS AND SPECIALTY AREAS
Neurosurgery
• Barrow Center for Neuromodulation
• Acoustic Neuroma Center
• Craniofacial Center
• Functional and Stereotactic Neurosurgery
• Meningioma Center
• Normal Pressure Hydrocephalus Clinic
• Pituitary/Neuroendocrine Center
• Radiosurgery Center (Gamma Knife® &
CyberKnife®)
• Skull Base Center
• Spine Center
• Vascular Center (Cerebrovascular &
Endovascular Neurosurgery)
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017