Author Topic: about my mom...  (Read 2549 times)

LN

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about my mom...
« on: September 10, 2008, 05:34:20 pm »
Hi all...
I'm back...my last post was in April concerning my 83 year old mother with an AN of 3X4mm.  I stopped posting cause my mom started physical therapy for balance issues which helped her a lot.  Well..it's about 5 months later and everything is breaking down.  Three weeks ago my mom was doing okay, maintaining, going about her usual routine, when her balance and dizziness came back in full force.  She had stopped going to physical therapy but was continuing it on her own at home.  She is now at a point where she literally can not function.  Her symptoms are dizziness, nauseated and an overall sick feeling.  We went to her doctor who suggested, again, her options, which is gentamicin injections or surgery.  On top of all this, on Friday my mother is having knee surgery, which she has put off doing all these months.  Now she is in a lot of pain and must have this surgery.   To recap from earlier post, my mom is an active, young looking 83 year old but this tiny AN has zapped her strength and zest for life.  I am beside myself at the moment.  My mother can not address her symptoms until she has recovered from her knee surgery.  I am hoping she doesn't get worse from the surgery.

Thanks for listening
LN

robynabc

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Re: about my mom...
« Reply #1 on: September 10, 2008, 06:01:33 pm »
Hi,

I am no doctor but you may want to check with a neurosurgeon before doing the knee surgery.  And have both doctors decide which is more important.  I don't remember how large your mothers tumor is but I pretty much know that if it gets large the brain tumor is certainly more urgent than the knee surgery.  If it were me and my mother,  I would ask the two doctors to discuss it.  And do you know that you have a reputable neurosurgeon?  The knee is not life threatening but the tumor could be.  Not for sure but could be.


Sending Sunshine.

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

lori67

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Re: about my mom...
« Reply #2 on: September 10, 2008, 06:43:12 pm »
Hi LN.

Your poor mom.  I know you probably said this the last time you posted, but is there a reason radiation is not an option for her? 

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Julie A

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Re: about my mom...
« Reply #3 on: September 10, 2008, 07:02:32 pm »
Hi LN,

Like your mom, my AN is small and I had knee surgery on July 1st.  I had a partial knee replacement and I have had no ill effects related to my AN.  I am doing well and am thankful to the surgery for I am now more stable.  I am back doing all of my workout routine.  I wanted to deal with my knees in the event that my MRI in August showed growth of my tumor and I would require surgery.  Fortunately, my AN has had minimal growth so I remain in the watch and wait.  I agree that the AN if it is large is a greater risk but I know the pain from your knees is quite disabling.  I wish you the best with your mother.

Julie

Jim Scott

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Re: about my mom...
« Reply #4 on: September 13, 2008, 09:49:20 am »
LN:

I'm sorry to learn of your mother's setback and, with her impending knee surgery, the predicament this situation poses for you both. 

Unfortunately, your mother's recovery period from her knee surgery will likely be longer than a younger persons and the AN symptoms will probably not improve during that time.  Echoing Lori67, I have to ask why radiation has not been mentioned as a possible option to address your mother's AN?   It is non-invasive and seems like a viable option, unless your mother's AN is located in a position where radiation is not feasible.  With radiation, she would be spared the physical rigors of surgery and it can be performed in one day, often as an outpatient or with just one night in the hospital.  If radiation treatment is possible it has to be considered.  If her doctor won't do so, I strongly suggest you seek a second opinion and don't allow one doctor to keep you and your mother in this untenable situation.

I trust this will be resolved quickly and I pray for you and your mother as you deal with this unpleasant circumstance.   

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.

Omaschwannoma

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Re: about my mom...
« Reply #5 on: September 13, 2008, 10:53:37 am »
LN,

Funny I missed out totally on this post and very sorry I did as I had a labyrinthectomy performed in February of 08 as I was having much difficulty with oscillopsia (bouncing vision) for three years after my first surgery in 2005 for 1.5 cm AN.  I couldn't get one doctor in my home town to get the diagnosis right and it wasn't until I saw Dr. Antonelli (my originial surgeon) at the Philly Symposium that I spoke to him regarding all the trouble I'm having, using a cane nowbecause I was unable to keep my balance, and sent him all reports from "specialists" that saw me post his surgery.  Another MRI was ordered and he recommended labyrinthectomy. 

I stayed awake for the procedure, not long, hour or so, they did a nerve block so didn't feel a thing and they went in through the ear canal as my hearing in that ear was dead anyway.  I went back to PT and today I'm doing great.  I'm very happy I chose to have the surgery, it comes with risks, but at the time I was crashing, having seizure-type symptoms, and started asking myself if this is how I have to live for the rest of my life, I'm not interested. 

I attended an ANA meeting where a doctor was present talking about having to do gentamycin injections to solve the problem a few too many people are having with balance.  Seems surgical patients and radiation patients complain of having much difficulty with balance.  The injections are done in a controlled manner so as not to destroy the hearing nerve, but it does destroy the vestibular/balance nerve and it's this nerve that causes us the problems. 

In my case they found inflammation and hemhorrage in the inner ear and cochlea.  Dr. Antonelli took everything out, and I have my ear bones!   I'm looking for a locket to put them in so I can keep them with me.  Hope this helps.  PM me and I'll pass on my phone number so we can talk if you want. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear