AN and high blood pressure. Please please read

[AndewG]

My wife was diagnosed with AN in 2011, she had cyberknife in Jan 2012. In December 2012 she developed hydracephalus (build up of Cerebral Spinal Fluid) Our neurosurgeon advised a VP shunt . It took her 7 months of not being able to get out of a chair and taking 20 minutes to help her to a the car, to finally give in and tell her to get the operation and shunt. My wife was deathly afraid to go under the anastesia. Looking back, I cant believe that they agreed for her to do vestibular therapy with a therapist since this wasnt going to drain her fluid. The Neuro should really have told us that death can occur because if too much fluid pushed on her brain stem. i noticed that her feet were moving better in 2 days after the vp shunt and she was walking within a week. Still not 100% but about 90% better. If you have radiation gamma/cyber, please monitor your blood pressure and DEMAND that you know what the CSF levels look like. I say DEMAND in caps because well lets just leave it at that . I dont wish to scare anyone but my wifes AN case didnt end well. Her case is the rarest of the rarest and the knowledge that i have and the experience of this journey i hope can help someone else. I really hope that my wifes records can go to the ANA and researchers worldwide.

[Crazycat]

I had the works: hydrocephalus and a 5cm AN. I had the shunt installed one month before the tumor resection; two weeks in the hospital for the shunt (which had to be done over the next day because it had become dislodged) and 3 weeks in for the main surgery (15.5 hours) under a surgical microscope—and they had to leave about half of it in!

I went into the surgery (this was 12 years ago) in great shape,  trail running 5 miles a day through the woods and weight training, lean and mean. I came out of the ordeal with high blood pressure and high triglycerides that I have been managing through medication, diet and exercise since then.

The shunt is still in. I have constant double vision, equilibrium issues and am totally deaf on the left-side with shrill, unabating tinnitus. Other than that, I guess I'm doing okay.

I have an MRI every year. So far, so good. Great doctors at MGH in Boston! Rated best hospital on the planet.

If you're interested you can read through a transcript of my surgical report I posted 10 years ago here:

http://www.anausa.org/smf/index.php?topic=5342.msg48050#msg48050

[vicenza2010]

I am not a native English speaking so I hope you will forgive me for my mistakes.
I was dx of a right small neuroma  (23 x 16   x 11 mm   ) in  2010.
The same year I tried the cyberknife option.
The year after on September 2011 I had an hydrocephalus and a VP shunt was implanted.
The neurosurgeon explained to me that my neuroma was secreting proteins which made my liquor impossible to be reabsorbed.
He called it an aresorptive hydrocephalus and indeed it is a very rare one.
A year after, nevertheless the cyberknife, my neuroma was still growing (21x18x21 mm) and I had a retro sigmoid surgery in  2013 to remove it.
The valve for helping my brain to drain the liquor was set in the year 2011 on 170 but after the surgery, they had to move the setting to a higher value 200, very near to a normal one because after the surgery the liquor was acting in a different way.
That was my experience.
Feel free to contact me anytime via forum or PM.

[lilith]

Dear All,

Can I ask a question, due to ignorance, how can we know the CSF levels look like? Thanks for any kind of orientation.

Best,

Lilith

[Crazycat]

I think it is something that is determined from an MRI scan. After all, that was how I was diagnosed with hydrocephalus, along with the tumor. I had the shunt surgery one month before the tumor resection. I remember even though I was still sick my equilibrium and walking markedly improved once the shunt was in. I'm not even sure if the shunt I have still works!

I have a cousin who had hydrocephalus as an infant (she's at least 50 today) that had a shunt installed. She still has it even though it stopped working decades ago. Once those things are in they stay in because damage can be done removing them.

My growth was 5 cm (50 mm) X 5 cm (golf ball) so it was blocking a ventricle, backing-up the fluid.

[Citiview]

When I was a teen my cousin had a malignant brain tumor.
This is why in some of my posts I encourage a carpe diem kind of attitude about going on vacations and enjoying everything to its fullest etc.

[Crazycat]

Cityview,

"This is why in some of my posts I encourage a carpe diem kind of attitude about going on vacations and enjoying everything to its fullest etc."


    I know what you mean. After what I went through I've been doing just that for the past 12 years!