What are the restrictions?

[rcaldw]

I know that after surgery I wouldn't be able to lift anything over 10 pounds for 8 weeks and there could be no contact sports.  Are there any restrictions (especially I'm asking about the sports) with radiosurgery?

[Mark]

rcaldw,

I am not aware of any physical restrictions after radiosurgery. Some folks may have some nausea or feel tired immediately after treatment which would limit what they feel like doing. In my case, I took it easy the first couple days after treatment but was back on my run, bike, swim exercise routine that weekend.

Mark

[rcaldw]

Thank you Mark, that was what I was looking for.  I'm at a tough spot right now.  The Dr. I'm seeing in Houston does, both, surgery and radiosurgery.  They haven't tried to push me one way or the other.  My AN is actually touching/pressing on the brain stem right now, so I asked if there could be problems with radiation if it swells.  There could be.  I've weighed a ton of information, heard from Stanford, Fukishima at Duke, as well as the Dr's I'm seeing in Houston.  Bottom line is I'm just not sure what to do.  I don't want to have surgery if I don't have to, on the other hand, I don't want to complicate surgery later by having radiosurgery if it doesn't work.  I guess my initial thought was, why not try the radiation?  If it doesn't work I can always have the surgery.  But then they say it makes surgery harder later.  I'm going to try and make a decision by Wed of this coming week.

[Larry]

RCaldw

Hi, i had my AN surgically removed 3 years ago using Middle Fossa technique and even though the surgeons told me they got it all out and pre op they said that it is very unlikely for it to grow back, it has grown back. i will be having radiosurgery on it sometime soon. Having it surgically removed, means that the hearing loss you currently have will never return. From what i have read, radiosurgery does not seem to impede on hearing loss.

Larry

[Mark]

RCaldw,

My AN was the same size as yours at 2 cm and was slightly pressing on the cerebellum. I would guess mine looked very similar to yours and I had absolutely no problem with swelling post treatment. From one of your first posts the machine being referenced by the facility is probably brain lab manufacturered by Novalis. It is a very good machine and can certainly preform the treatment well but it is not quite as accurate as GK or CK.

In terms of surgery after radiation, there are a variety of articles out there as to whether it is easier , harder or the same. HEI recently put out their findings that presented poorer outcomes for those who had surgery after radiosurgery. So you can certainly consider that information although I can't tell you what level of peer review of their study methodolgy was done. Generally, I'm skeptical of any information HEI puts out on radiosurgery since I believe they have a pretty obvious bias against it.

I wrestled with the same issue in making my decision, but at the end of the day it came  down to radiosurgery being 97-98% effective and how much energy do you want to spend worrying about being in the 2-3% that would face that problem.

You have to do what you're comfortable with, but that's my 2 cents

Mark

[jcinma]

Larry,
I was in the same situation, had surgery 1996, lost hearing but post-op stated total removal.  Had 2nd surgery in Feb. to debulk and followed up with FSR.  I have my first MRI next month.  I had no physical limitations after the FSR, only after the surgery.
Jane

[CC]

rcaldw

My AN, which MRI showed as being 1.8cm turned out to be 2.8cm when the docs at Stanford did the imaging with a CT contrast!  Like yours and Mark's, mine was also abutting the brainstem.  I had CK done at Stanford on Oct 26.  To date I've had no headaches just tiredness.  When I say tiredness I mean mind-numbing exhaustion.  I went to a conference recently and we worked from 930am until midnight.  It's taken me a week to recover!  But I've been assured it will pass and hey, everyone says the 11 hour's sleep I get each night is making me look so much younger! 

I was also concerned about post-treatrment swelling.  But that's where you trust your radiation team.  You keep in touch with them and they act quickly to ensure that any problems which occur are treated. 

I looked into surgery.  Middle fossia wasn't an option for my AN (and I think the ANs of most folks who have them abutting the brainstem) because most of my AN is outside the ear canal which makes middle fossia impossible to perform.  So that left retrosigmoid which the doctors at House told me would leave me with lifelong debilitating headaches or translab which would leave me with no hearing (my hearing's fine).  I had also looked into GK but was not impressed with the possiblity of healthy tissue damage (due to the large amount of radiation needed to 'kill' the tumor in a single dose). 

CK was for me the best option.  It was painless, the staff were fabulous, I keep in close touch with them, and, as I've said a few week's sleepiness is a small price to pay to fix my AN. 

Good luck with your decision making. We've all been through it and I think it's the hardest part of the while process.

CC

[rcaldw]

Thanks to all of you who have responded, it is truly helpful.

CC, let me ask you a question.  You say the raditation team has to keep up with you and if anything happens be ready to treat it.  How would you treat that?  If there is swelling that affects, lets say, my walking, what could they possibly do?

[becknell]

CC

I cannot believe the doctors at House told you that retrosigmoid "would leave you with lifelong debilitating headaches." That is a scare tactic, and I'm surprised they would stoop to that. Although some people do have headaches, it's certainly not inevitable. My husband had retrosigmoid and has had no problems with headaches. We're in a support group where a number of people had that approach and none of them have had headaches, either. In fact, we were told by several surgeions that it is a relatively uncommon complication with the proper surgical technique.

[CC]

rcaldw

The team hasn't been too specific - it will depend on what the symptoms are and where and how much swelling there is.  But I understand the first step is usally a course of steroids to reduce the swelling.  The team were confident they could treat it and I have confidence in their confidence (if that makes sense).  But I do keep in touch.  It's important that if any swelling occurs they get on top of it quickly.  The brainstem controls primitive functions - like breathing!  So I keep an eye on anything truly weird and report it.  They're always available by phone and e-mail and are quick to respond.  But to be honest I'm not focussing on the AN anymore.  Even with my current fatigue (which is normal) it's great to have the treatment over and done and move on with my life. 

becknell
Yes they truly steered me away from retrosigmoid for thsoe reasons.  And to be honest, your husband's is the first case I've heard of without the headaches.  My AN group in Washington is full of people with these headaches and their quality of life is awful.  It's another reason I opted for CK.  But I'm thankful your husband was a lucky one.

CC

[russ]

Hi
  This: "would leave you with lifelong debilitating headaches." is not even consistent with HEIs web site statement for post subocciptital. The liklehood of headaches is increased, yes, but this seems an exaggeration from either a particular Dr. or poster.
  Russ

[becknell]

There are other people who are active on this message board who had retrosigmoid (or sub occipital, as some doctors call it) and don't have headaches. My husband is certainly not an anomaly in that he didn't have them. I would hate for people who may be considering that approach to think that headaches will be inevitable.

[Mark]

In terms of the sub occipital / retro approach discussion, that was also what was originally what was suggested to me in my consultations. The literature I read which included a lot of post treatment patient studies showed a higher incidence of headaches and related complications compared to the translab and middle fossa. That being said, I didn't get the impression that everyone who had it had problems. Rather a higher percentage registered that complaint. Maybe that's 10, 15 or 20%, but certainly the majority didn't have that particular issue

mark

[CC]

Quote ""this seems an exaggeration from either a particular Dr. or poster."

Ouch!  That one hurt Russ!  But it was the exact phrase used by the doctor I consulted at House.  I take records of conversation of every important meeting I have and those were his words - verbatim.  He very definitely tried to steer my clear of this approach.

No wonder none of the post radiosurgery AN patients wants to post on this part of the site.  I have to say that for a support group you're not very supportive of everyone's choices are you?  This shall indeed be my final posting and visit to this site.  Maybe it's a cultural thing we Australians don't understand.  But I for one don't want any more part of it.  I suggest everyone takes stock of where they are in this holiday season and thanks god that they're alive and have only a benign tumor.  Me, I'm going to sit with my neighbor, a breat cancer survivor and mother of two children under 3 who just learned she has thyroid cancer.  Puts all of this silliness into perspective doesn't it.

CC

[jamie]

CC

I hope you stick around, there are a few of us radiosurgery patients here you can lean on. This site isn't even the worst as far as some posters being less than supportive, trust me.

We're here for you.