Prayers for DIL

[Soundy]

My DIL (sons ex wife) has had issues for about 2 years with hearing loss, taste dusturbances, balance problems breathing issues and tinnitus. She was told she had asthma, menieres disease and sinus problems.
No scans were done until about 6 weeks ago after she was dizzy  then passed out. A golf ball sized AN was discovered on right side. She is in surgery now. Went in around noon. Pray things go well. She has my 8 year old granddaughter and a 3 year old born with multiple birth defects who is a bright beautiful girl who just happens to have no legs, cleft palate and heart problems. She has had palate repair, 2 heart surgeries, surgery to correct some bowel problems. At one point had a trach  tube and feeding tube. Her deformed feet and legs were amputated and they used them to build stumps. Nothing stops this child.
She was more worried about the girls than herself, especially the youngest. Tried to tell  her she  had to let others care for the kids and take care of herself.
I find it odd that ANs are supposed to be rare and we seem to have an epidemic of them. My husband's grandmother had one in 1994 at age 79, mine was found in 2003 at age 45. A man in area age 42 had diagnosed in 2003 and a former scout of mine had one in 1997 at age 32. My DIL is 35. All of us with in 10 miles of each other. It's scary that there are so many of us so close together.
Anyway , please pray for Pam

[alabamajane]

Prayers Soundy for Pam and her family.
I hope she does well in surgery.
Please let us hear an update.

Jane

[ANSydney]

All the best Soundy for Pam's surgery.

With regards to how rare acoustic neuromas are:
* 1~2 people diagnosed per 100,000 population per year
* ~1 person diagnosed per 1,000 per person. That is, you have a 1 in 1000 chance of being diagnosed during your life.
* ~1 per 100 people in their lifetime, ~90% of which are asymptomatic and are therefore not diagnosed. That is, 1 in 100 people die with an acoustic neuroma, not because of it, most without even realizing. This number is from autopsy studies.

[alabamajane]

Sorry to be off topic but I'm just curious ANSydney,, I've seen you quote these numbers before and I wonder how "they" come by the autopsy figures??

I don't know but I wouldn't think they open the skull on an autopsy nor do MRIs so how do they diagnose them through an autopsy??

Just curious,,

[ANSydney]

Hi Jane,

The article http://thejns.org/doi/full/10.3171/2012.7.FOCUS12186 has the raw data. The main table of interest is reproduced below:



There are numbers ranging from 0% to 2.4%, with 1% looking about it. A more recent paper has put the figure at 0.8% http://www.sciencedirect.com/sdfe/pdf/download/eid/1-s2.0-S0030666516301426/first-page-pdf

So, about 1% is the figure. Most people think it's a much smaller chance.

[Soundy]

Update....
Pam has not had surgery yet. Insurance requested another opinion. New doctor says radiate the tumor. First doctor says position and size would make radiation dangerous due to swelling that occurs before tumor death.
So right now she is in holding pattern as insurance sends her to other doctors until they can get 2 to agree on a plan. Decision will be made towards in of the month.
Continue prayers please

[Patti]

Oh dear.  Prayers for Pam!!!!!!!

[ANSydney]

Soundy, I couldn't work out the size or symptoms of Pam's tumor.

[Soundy]

She had been having hearing problems in right ear, balance issues, taste disturbances, tinnitus and some headaches. This has gone on for about two years. No scan was done until  couple months ago when she was dizzy and passed out. They diagnosed her with menneires disease.

They told her it's the size of a ball that if sliced through center would be as big around as a golf ball.

When I posted original post I had talked to her 2 days before and surgery was still a go. Had not been able to get in touch with her until this week end. They were not taking calls and the one time I drove down, 2 hours away, no one was home. Hopefully something will be settled soon. The waiting and differences in doctor opinions are pushing her to a nervous breakdown.

[ANSydney]

Strange to get dimensions in such a qualitative manner. You would think that treatment providers and radiologists would quote millimeters rather than objects.

If indeed the tumor is the size of a golf ball, it would be 43 mm in diameter. If totally spherical, that would give a volume of 41.6 cm3. Even if it was only along two axis and the third was half as much, it would be a volume of 20.8 cm3. I doubt any radiosurgeon would push for radiation at that size. I suspect the tumor size is much less than indicated. Would be nice to know measurements.

It's sad to hear that different doctors recommend different methods. Are they suggesting a method and asking the patient to find a provider? Or are they saying, don't use someone else, use me?

[Soundy]

Surgery back on. November 30th. Another doctor that does radiation said it is too big. So back to original plan.
As for the way doctors gives sizes, mine gave  mine in mm when first found and said about the size of a BB. Later  he gave mm and said it was roughly the size of a  pellet from a pellet gun. When I had excelerated growth right before surgery he gave me cm measure and said roughly  the size of a golf ball. I think some doctors name a common item to help people visualize the size.

[Soundy]

Pam came through surgery ok. Translab approach.
Thing is when they got in they discovered it was not an AN. Probably worse than had it been an AN.
Langerhans Hitiocytosis. They ran test on tissue removed ad said it originated in bone marrow and can pop up anywhere in body. Bone, skin or organs. This time it showed up disguised as an AN. Not cancerous but they say further growths can develop as cancer.
After first of year she is having a full body MRI scan. She still has some hearing left. They had to leave some tumor so will be watched closely. This is going to be a life long battle

[AL-Tcw]

Prayers.