Disney and a brain tumor?

[honugirl]

Thanks for the info!

It is something I will look into. Unfortunately for my type of tumor that tends to be a second line of defense if the tumor reoccurs, (from what I've been told) but I will question the doctors about it. I'm also interested in the Cyberknife, which is an updated, way cooler version of the Gamma Knife. The cyberknife actually tracks your body and moves the beam with it. Very high tech.

 

[jt'smom]

hi honugirl, i can tell you that after my craniotomy, which was VERY invasive--i have a 96 stitch scar up the back of my neck and head, my neurosurgeon gave me a greenlight for six flags at 3 months out. the only thing is for me, i have to weigh the danger of to much pressure which is associated with fast things like rocknroller coaster, tower of terror and test track. when i rode these things a couple of years ago, i could barely walk away from the ride it caused so much dizziness and unsteadiness. it took me days before i felt back to my "normal" state of dizzy and unsteady self! also, i will not ride mission space because of the g's that you experience. i've already had 1 brain bleed from my tumor and i won't take that risk since i have too much edema in my brainstem. i think you just have to weigh the real life effects with the short term wants of riding rides. but since i'm so far past my prognosis of expiration date, i tend to just live each and every day as if its my last. also, you should check braintumor.org and al musella's virtual trials website... these are invaluable sources of info to those of us in the brain tumor community.

 

[honugirl]

Thanks so much for the info!

I never thought about the pressure in my head. Maybe that's why the last time I was there I almost passed out on Tower of Terror... hmmm. That was before I knew about the tumor. Good thing I'm headed to Mass General next month for a consult with a neurosurgeon, I'll ask about it then. My current doctor is not a neurosurgeon and cleared me to do anything! I'm not kidding. Even play goalie in hockey... I did ride the Cyclone on Coney Island last week (hey, the doctor said I could... ) and felt OK, but that one doesn't go upside down at all.

I am a little worried because CSF leaks seem to be fairly common with the type of surgery that I'll need (up through the nose). When they punch the hole in your skull, they fill it up with a big glob of fat (gross, I know) to keep the fluid from leaking out until the skull repairs itself. I guess I wouldn't want that to fall out on a roller coaster or something. That could be kind of nasty...

Stupid tumor. I lived just fine without it before! I should be charging him rent to live comfortably up in my skull, albeit it might be a little cramped up there. If I have to change my daredevil ways, I honestly am not going to be a happy camper. I've already had to give up my true passion, refereeing hockey, because of it (which with luck, I'll be back doing next season).

I had to laugh at a lady the other day that volunteers at the cancer center in my town. She asked what type of tumor I had, so I told her a pituitary adenoma. She smiles and says, "Oh, you got the easy tumor!" Umm, yeah. The 60 pound weight gain, liver damage, kidney damage, heart damage, pre-diabetes, joint pain, stretch marks, headaches, chest pain, etc. that come with it are all easy stuff. Yeah, thanks lady. I just shook my head. I guess ignorance is bliss for some...

I think I shocked the Corporate Angel Network lady too... Going to Mass General means a complete cross-country flight for me. She seemed rather shocked that I would go that far for treatment. Hey, it's not my fault all the people here are ignorant about my tumor. They didn't even think I needed to go to a support group for it... But they did try to pawn me off on a shrink for perfectly "normal" feelings. Who the heck isn't scared and a little depressed when they find out they have a brain tumor? I guess because my situation was so laughable just before diagnosis that they thought I was nuts. Hey, if I didn't laugh at myself, I'd probably be dead by now. I have to laugh at something... I swear, I'm the happiest depressed person I know.

 

[leeh1530]

Hi Honugirl!
I'm a tad late to this party, but I had to weigh in. I'm a post-brain tumor patient, and I have all my treatment at MGH. I was diagnosed in 1999, ironically just a few days following a return from a Disney trip! Mine was a choroid plexus papiloma in the fourth ventricle, mostly affecting my balance, speech, weight, etc. But, I have to tell you that you're going to a GREAT place for this treatment. They are wonderful. Feel free to get in touch with me about anything. I can't help much with the Disney accommodations for tumor patients because I have few problems, only fatigue and balance, which is easily solved by a nearby bench. My doctors just told me not to do ToT and RnRC, because of the quick sudden drops and the upside down. After things like Big Thunder and Space, I have to just sit a second and readjust. But that's so minor. I think it's a great idea to get the room with handles, the wheelchair, etc. On a side note, my mom was a cancer patient and we travelled to Disney often. Most of the time, we got a wheelchair for her since she tired easily, and whenever we needed ANY assistance whatsoever, the CMs were absolutely wonderful. Just speak up for anything!

 

[honugirl]

Thanks so much! I'm glad to hear that you had a good expereince at MGH. Especially in the same department I'm going to.

Maybe you can ask for a bench on wheels to accompany you everywhere you go?

I think the hardest part is convincing my dear boyfriend that I really DO need the accomodations. He's one of those stick to your guns, suck it up, die hard, anti-doctor, I can fix it myself kind of folks. I don't think he realized how tired I was during my trip to NYC last month because I tried really hard to hide it, but towards the end, I was really slowing down and that was only a 10 day trip, this is 16 days!!!!!!!!!! Any one have any good ideas on how to convince someone like that that I'm only doing those things to make our trip better?

I'm going to have to ask about ToT and RnRc when I speak to the neurosurgeon in a few days. I'm hoping he gives me the green light, but I'm afraid he won't. I had problems on ToT the last time I was there with almost passing out on the ride, my brain was seriously screwed up by it. I may skip it much to my dear boyfriend's dismay. Well, and my dismay too. I really enjoy it. But if they take away my RnRc I'll be really upset. I rode the Cyclone at Coney Island last month which admittedly doesn't go upside down, but has some pretty good drops to it and was OK.

 

[Rhonna]

Thanks for the info!

It is something I will look into. Unfortunately for my type of tumor that tends to be a second line of defense if the tumor reoccurs, (from what I've been told) but I will question the doctors about it. I'm also interested in the Cyberknife, which is an updated, way cooler version of the Gamma Knife. The cyberknife actually tracks your body and moves the beam with it. Very high tech.

Hi - my first time on the disabilities board. I actually just came over to look around. I hate to throw this out there but please think very carefully about any type of radiation surgery for the pituitary.

Just to give a little history first: both my sister and I have done extensive testing for Cyclical Cushing's with one of the top doctors/teaching hospitals in the US. My tumor is there but the blood/urine work was not sufficient for a diagnosis. My sister was very close to a Cushing's diagnosis but our doctor moved to another state and the new doctor was more conservative. Wanted her to keep testing on a regular basis. My sis is afraid of the surgery and is not bad enough with symptoms and so decided to let things ride unless they turn bad.

Anyhow, we had several friends see programs about the gamma knife and/or cyberknife or read articles about how great it was and thought it was such a great option for us if we went to surgery. It sounded really good at first, so I asked detailed questions of our doctor and his nurse (who is VERY knowledgeable about this). Both said that any radiation treatment can be very effective at first but almost without fail, after about 10 years the pituitary shuts down completely and the person has to go on hormones for the rest of their life. They have seen it happen over and over - the statistics support this.

I happen to have a friend who had agromegaly (giantism from pituitary tumor producing excess growth hormone) over 15 years ago when she was in her 20's. They did regular surgery but could not get all the tumor, plus it was growing, so they also did radiation. Now, after 15 years her pituitary has shut down and she is on hormones and supervised on a regular basis for the rest of her life.

And even though the newer radiation knives are more precise (I'm not sure, maybe they are even less radiation) - the convenience and "great" outcome you get initially could end in frustration if down the road you end up with a burnt out pituitary. I was surprised that something like that would happen so long after the treatment, but apparently it is common.

Of course, each person's situation is different and you have to decide what is best for you. I just would encourage getting a second opinion if your first doctor and/or surgeon really likes to specialize in radiation surgery. They may heavily push you towards that type rather than traditional. And of course, ask questions about the long term effects of radiation on the pituitary.

I also wanted to offer my sympathy. We have learned a LOT about the whole thing - especially the effects of cortisol. Too much cortisol equals steroid effects - strength and too much energy at the beginning, hyperactive, but later causing the muscles to atrophy and fatigue can set in. It can very often cause anger and even violence. Two women testing at the same time as me were talking. One could not control her anger and physical violence and as a result her marriage ended. The other actually assaulted her boyfriend so badly with a knife that she ended up in jail for awhile. I know these are extreme examples, but don't put yourself down for getting irritated easily. Hormones have a powerful effect on us. More than we realize. Look what happens to athletes who take steroids.

I truly hope you are able to get the best help. Would your boyfriend be willing to read up a little on Cushing's so he is better able to understand? Support from family and friends is really important. There are also some Cushing's support boards online.

Best wishes to you!

Rhonna

 

[Rhonna]

Hi again,

I just realized you are in Washington State. The doctor we had who is so knowledgeable with pituitary issues - especially Cushing's - moved to Seattle a couple of years ago. He was in Oregon at OHSU. In case you want to look into someone top in this field and close to you, here is the info.:

William Ludlam - endocrinologist
Swedish Hospital
Seattle

1-206-320-2840

1-206-320-2800

e-mail: Bill.Ludlam@swedish.org

He works with a top neurologist surgeon there - Marc Mayberg.


The online support group I mentioned in PP is cushings-help.com

Hope this may be of some help to you.

Rhonna

 

[Shelly F - Ohio]

So sorry to hear about your new diagnosis. I have an aunt who had a tumor on her pituitary gland it caused her to grow! It was called acromeglia. They removed her tumor and she is fine. My FIL and my husband boss also have tumors on their pituitary they have had them for about 4 years and take steroids and they have shrunk the tumor.

So don't fret just have a good time.

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