Pre-treatment pickle

[CassaP]

In late March, after 65 years of decent health, I developed debilitating intermittent positional headaches, wobbliness, a shuffling gait, and felt I'd lost about 30 IQ points. Stairs became scary. An ER CT scan showed "normal pressure hydrocephalus," i.e., backed-up CSF and enlarged ventricles. Idiopathic etiology, was told. But these symptoms had developed during protracted treatment for an antibiotic-resistant UTI, so a reaction could be blamed.

Was scheduled to travel the next day, and went, but had another wee-hours crisis in L.A. (better there than on the Big Island, where I was living) and wound up in another ER. This time, MRI showed a 2.5 cm acoustic neuroma as well as NPH. Seemed to throw the pros for a loop re treatment. On advice of Schwartz at the House Clinic and Cueva at Kaiser San Diego, my wonderful Kaiser Sunset neurosurgeon, Brian Pikul, opted for a VP shunt as prudent step one, though some studies suggested the hydrocephalus might resolve with removal of the AN.  The prevailing sentiment was that the NPH, which causes brain damage, had to be dealt with definitively. That was May 1.
 
The shunt is my friend, though I don't love it. I can think and walk again. Now treatment of the AN is the subject of much internal and external debate. We've recently moved to Portland and have stayed with Kaiser. The AN is pressing on the brain stem and seemingly accounts for my constant wooziness. But no one can say for sure it's not partly due to residual NPH.

Here is why I'm posting:  I need to choose between surgery and fractionated radiotherapy over an estimated 25 sessions. The pros and cons for each are about equal -- I've had about five "second" opinions, and the only firm vote was for FR, from a local neurosurgeon, which gave me pause -- and I'm utterly perplexed.

My age and the strong desire to avoid the risks and hardship of brain surgery suggest FR is the wise course. Also, I can receive the treatment locally and sleep in my own bed.

The best, closest AN surgeons are in Southern Calif., and it seems advisable to seek them out if one opts for surgery. It's a logistical challenge, though I have family in L.A.

HOWEVER, FR won't necessarily reduce the size of the AN, which is "medium to large" and already presses on the brain stem and is likely causing the whirliness, not to mention hearing loss and tinnitus. I'm not sure I want to live out my days feeling mildly inebriated, which is not as pleasant as it sounds, as most of you would know.

I'd also like to know if surgically eliminating or reducing the AN would result in restored flow of CSF and possibly allow for eventual removal of the shunt. It’s been noted that proteins shed by the AN may be causing the hydrocephalus, but will FR stop that shedding? (I've read that hydrocephalus can, in rare cases, RESULT from FR!) Haven't been able to get a definitive answer.  Also saw on a UK ANA site that an AN pressing on the brain stem is precisely what impedes CSF flow!
 
My hyper-rational engineer son suggested FR with a surgery as Plan B if the results disappoint. But he was unaware that surgery on a post-radiation AN is riskier.

In any case, I'd very much appreciate some real guidance of the "if I were in your shoes" variety. I know it's a hard choice, and my case is atypical. But experience-based opinions from forum members will help.

[Glupson]

Hello CassaP,

Sorry to read about your problems. We all experienced, or still experience the same dilemma as you do now.

It is obvious that we cannot give you an advice – it would be irresponsible – but we can talk about our own experience, our choices and what made us make them.

Early this year, I was diagnosed a trigeminal schwanomma, which is very rare, and very similar to an AN. Mine is 19mm, therefore treatable both with a surgery and radiosurgery. My symptoms were perfectly bearable – some light tingle on the left side of my face, no pain, and no other problems. So, it was acceptable for me to keep on living with it, and to think only about a possible growth of the tumour, and how to prevent it. I decided to go for a radiosurgery, and I had my gamma knife treatment on Avril. So far so good, the first MRI is planned on October.

Hope that this helps, and wish you all good in your treatment.

[LakeErie]

I had a large AN and was told it had to be removed within 6 weeks as the mass effect had shifted my 4th ventricle and I wanted to avoid a shunt.
I had the surgery and it took about a year for my brain to reposition itself after there was no mass effect, but it does now look more normal on an MRI, so it does take time for our brains to adjust for the better.
I have always posted on this forum that I believe this adjustment to removal of the mass effect is a part of the complications some people experience after surgery, as I did.
I was age 65 at the time of my surgery and came through it fine other than the complications, meaning that had my tumor been smaller and not involved my 10th cranial nerve, I would have recovered much faster.
I can't speak to your other issues as I was never a candidate for radiosurgery due to tumor size. Good luck

[muffincat]

CassaP,  Im just on my way to the forum to put forward my questions and see your  post, as I focus  on the screen.
All I can do is wish you luck
 Ive just had a meeting with the surgeons, and being in a different country, having a slightly its not following normal symptoms,  I had suspicions that for me any  GF etc would not be the best. That was endorsed by the surgeon [and what I expected] In this case for ME, its that  maybe a histology  spec should be collected. that the GF or other RT tx would not remove my problems or the tumour, and Id be no further ahead in a couple of months/years time.
And as you are well aware none of us are the same, and we all have not only the tumour, the symptoms, but the surgeon the  facility and then the predicted and NON-predicted outcome to  throw into the soup pot to come up with the best for us
 

[CassaP]

Muffincat, LakeErie and Glupson:
Immensely appreciate your responses. I think part of why we write is simply to hear from others who've experienced what we're going through, not necessarily expecting answers.

[Echo]

Hello CassaP,

I was 57 when diagnosed, and 58 when I had Gamma Knife.  My an was 1.8cm when diagnosed and one year later it was 2.4cm, so I had to make a decision.  I opted for Gamma Knife for various reasons, my age, the fact that I'm single and still working, and I personally felt the risks of surgery were far to great for me to face.  I have had previous surgeries with bad reactions to the anesthetic.   It's a tough decision to make, but look at the big picture and weigh all your options.

There are many mixed opinions on surgery after Gamma Knife being more difficult or not. I've been told it makes no difference, or that it can be more challenging depending on how the AN has reacted to the radiation. Personally I did not make my decision based on whether a second treatment would be required when I hadn't even had the first.  I based my decision on what risks I was willing to face now and what ones I would prefer to face later if necessary.

The only concern I would raise is the size of your AN and whether it is actually touching or pressing into your brainstem.  If it is just touching as mine was, then swelling (if it does) post treatment may cause an increase in your symptoms temporarily. If it's already pressing into the brainstem and swells post treatment you may have different issues or require steroids to reduce the swelling.  This is where it gets difficult, because we all react differently.  My neurosurgeon told me not all AN's swell, and some swell more than others.  I know my swelled up from the 2.4cm at treatment, due to the increase in my symptoms, but I have no idea how much it swelled and I did not take steroids.  I toughed it out and things improved over several months.  At my one year MRI, my AN was back down to 1.8cm.  I no longer feel that wonky whirliness you referred to on a daily basis.  I seem to react more to barometric changes and if I'm overtired, then I can have an off day, but nothing like what I was having pre treatment or during the first year post treatment.  Other post treatment symptoms come and go and overall, I'm quite pleased with the outcome so far.  My two year MRI is coming up in a few weeks, so fingers crossed there will me more good news.

Follow your gut feeling.  Make a list if it helps of the pro's and con's of each treatment you are facing and you will reach a point where your decision will be made.  Once that happens, there is a huge sense of relief. 

Wishing you well.
Cathie

[CassaP]

Cathie... Your story was very helpful. I'm leaning toward the fractionated radiotherapy over surgery at this time. Hoping you'll post the results up your upcoming MRI. I'm having another in a couple weeks. I sense this thing may have grown since April, but we'll see. It's all pretty yikes, but I'm grateful not to be dealing w a malignancy.

[sandyinwisconsin]

Dear CassaP,

I did have 26 treatments, and I'm 45.  If I were 65, I would not hesitate to have radiation. 
Like you I considered surgery, but my radiation turned out better than I expected.

Please let me know if I can help.

Sandy