Disney and a brain tumor?

[honugirl]

This is a whole new ball game for me. We found out St. Patty's Day week that I've got a tumor on my pituitary gland that's really screwing with my body. My upcoming trip isn't until September, but we're not going to have a cure by then. I tend to be weak, dizzy, don't walk fast or far, etc. This is all new territory for me since the last few times I've been there even with my ankle injury I was in commando mode, sunup to sundown, park opening to park closing. Any advice? I'm so scared and frustrated right now. So much for the fun rides... I knew something was wrong the last time I was there on the ToT because I'd never been sick on it before. I don't know whether to take my wheelchair or not. But I may not even have the arm strength to push myself by then. Do I ask for a room with grab bars because I get dizzy a lot? I just don't know. I can't imagine actually having to go back to the room in the middle of the day and take a nap. That's such a foreign concept to me. I just can't believe I'm going to have to do that. Any advice that will make things easier is much appreciated, thanks!

 

[Schmeck]

(((honugirl)))

Would renting an ECV be feasible? Then you wouldn't have to use up all your energy getting around. And yes, reserve an accessible room with the grab bars, and anything else you need to be safe! I hope you have a wonderful time.

 

[SueM in MN]

I would suggest you take your wheelchair. If you are strong enough to push some, you can. But, it would also give you the option of someone else pushing you.
If you are feeling up to it, you could try renting an ECV in the parks, but if you are dizzy, it might be difficult (and tiring) to try to steer it. Also, even if that is not a problem, you would have to expend some energy on watching for other people, driving, etc. so it might be less tiring/less stress for you to use the wheelchair.
If you don't want to go back to your room mid-day, you could try taking a break in First Aid or go to one of the resorts close to the park you are in. That gives a break, but doesn't take you away from everything. If you and someone else in your party have a cell phone, it's easy to 'hook up' later.

For your room, having grab bars might be helpful, but you can also get a shower chair and a handheld shower. Those would allow you to not have to worry so much about getting dizzy and also save some energy.

 

[honugirl]

I may have to look into getting a different chair because mine is a sports chair so no one would be able to push me in it. I like the idea of the first-aid room to rest in because I hate having to go all the way back to the resort. We're going to be staying at Pop Century. Luckily it's just me and my man going so we don't really have to worry about hooking up with others. How do I get the hand held shower and stuff? We do have some great stuff planned. I can't wait to go, it's just going to be different. I just got tickets to the MNSSHP today so we're going to that one night. Hoop de do, one night. Lots of dinner reservations already done. We'll be there for 16 days. Who do I contact to see about getting what I need in the room department? Thanks so much!

 

[Kim in PA]

Also, if you haven't already, you may want to check out joining Tour Guide Mike's web site. There is some great info available there that helps you with shorter waits, etc. http://www.tourguidemike.com It is $21.95 to join, but IMO money well spent. To me his website is much more helpful than some of the guide books out there. There is not as much info there on disability issues there as on the DIS, but much more information about planning and how to reduce your wait time so that you won't have to go about it "Commando Style."

 

[honugirl]

Thanks! I'll look into him. We're kind of old pros at this in the normal realm, just not the "I need help realm" so we have an idea of what we want to do. We're just commando style people... Sigh. I'm having trouble adjusting to my limitations. We have 16 days so it's not like we don't have enough time to do what we want to do. It's just going to be hard for me to readjust my thinking. The hardest part is going to be convincing my boyfriend that I need the wheelchair and the rest of the stuff. We are in a long distance relationship and he hasn't seen me since the diagnosis so this will all come as a shock to him.

 

[kimbac3]

My DH pushes my chair. If you decide to let your Dh push you make sure to remind him to drink lots of water and make sure he takes some "sit" breaks too.

You may want to bring some ibuprofen for him. DH never complains but I can tell his muscles are hurting.

Also remember that sometimes it can be hard for him to hear you so you may want to work out a hand signal for stop. This happens to us in crowds or stores.

A wheelchair has become a MUST for me in Disney. I tried to go with out it the first year and while we had a good time I was pretty miserable the whole time.

I hope you have a great vacation!!
Kim

 

[KPeveler]

with a lot of sports chairs you can order bolt-on push handles, which might be useful for more than just disney. in fact i have seen them on ebay for less than $50 including shipping... looking into something like this may be useful. you will be very sick of a rental chair if you are used to a "good" wheelchair! the rental ones stink! and bolt on ones can be taken off when you get home if you dont want them anymore... check with your wheelchair manufacturer for more info

 

[tink2dw]

I'm sorry about your Dx. I was told I had a really bad brain tumor. But it turned out not be a tumor at all. Please get a couple of other assessments from different Dr.s. I should have, before letting them into my head for the biopsy. Now I have seizers and have to take medicine for that.

Hugs for you and healing Pixie Dust for you!~~~~~~~~~~~~~~~~~~~~~~~~*~~~~~~~~~~~~~~~~~~~~~~

 

[honugirl]

I never thought about the hand signal thing, that's a great idea! Thanks! I never travel without painkillers, especially now because of all the pain from the tumor. But I will remember to take extra for him (even though he won't ever complain... that's just who he is!) I also never knew you could get bolt on handles. I think I'll look into those. I have a fairly common brand of wheelchair so I think it should be easy to get some. I just have to take them off for the flight so they don't fall off, I'll keep them in my suitcase or something. Because I do worry about being in a long line and getting dizzy (because even with fastpass, some lines still are LONG! Especially my fave, Test Track!!!!) I definitely wouldn't want them anymore when I get home for playing sports (especially the way we play!!!)

Wow, that's quite a story Tink, I'm sorry to hear about your seizures. Thanks for the hugs. We do know I have a tumor because of where it is and what it's doing to my body based on symptoms and other related tests. I've got a really good doctor who is one of the top in the nation working on my case, but I am probably going to get a second opinion in Boston. In all honesty, I knew 8 months before they diagnosed me that I had a brain tumor, I just had this instinct that I had one, it was really weird. I just knew something was wrong. Hopefully this will be my year of a million dreams and I'll get my healing dream along with a great trip to Disney.

 

[disneymarie]

We were down in Oct 07 with my son that has several tumors on the pituatary gland. He was adamant against a scooter rental, I did it any way and it was a god send. It allowed us to get in a longer day, as hea aslo has multiple herniation and anular tear in his spine and sholder surgery.

I think the most difficult part of the trip and no one but I, Mom could understand (he is 33) was the harmonal imbalance. Irritation flared easily, If he had a plan in his head that was workable you COULD NOT discuss any alternative. I ended up being built in sitter so he could be in his own things that made enjoyment.

For example, sit with the grandson in the stroller while he did the attractions, but No you can;t take him to Animal Kingdom wiht you...you have to stay here.
If Connor fussed or wanted out of the strooler a bit, (long days for a 2 year old) he flew into an over reaction (hormones) that they had to leave and go back to the hotel room.....If I was in a different park and he wanted to do Epcot, I HAD to come there NOW or his day was ruined!

I totally understand the hormone thing but it did make it miserable for us...
Walked on eggshells to have a good trip when we realized what triggered hormonal releases as stress, stress in crowds, eyes from brightness. AND he had to have the scooter even in his denial. Had he used it the first day I think a lot of the emotional flares would have been avoided.

He did not want to wait for busses onsite, drove the rental Van..We should actually as a family realised his limits , start the day early and let his family go back to hotel whre he and toddler could nap, instead of his marathon days.

Acceptanxe of limitations, acceptance of input of others, acceptance of just taking down time and the use of a scooter will make your trip a dream.
Even if there is absolutly something you want to do and others are not receptive, ask for an accomadation if not then but at somepoint for you consideration. Like someone wasnt a late start day, or skip an attraction to make a parade....
Hoping you all have a great trip, and this was just my son's reaction with the pit tumors not your experiance.
My gf had them too, and gamma surgery, she did not have the emtional realeases, she did have other issues. strength, sleep, eye pain.

dianne

 

[honugirl]

No wonder the last few times I've been down there I've been freaking on people! Holy crap! Maybe it's been the tumor all along... Little things just irk the crap out of me and I'll just boil over for no reason. People on the buses, stroller people especially bug me, just weird little things, maybe once the tumor's out I won't worry so much about it. I've got major hormonal imbalances because of it. Thanks for the insight. I've kind of got it all, headaches, fatigue, hormonal issues, strength problems. Maybe I do need an ECV or a wheelchair. Sigh. We'll see how I do on my trip to NYC in a month and calculate it from there. That's only a 10 day deal and I'll lose much more strength from then on before Disney.

 

[disneymarie]

Yep, I would be willing to bet. I got it...the rest of the family were frustrated. It is like uncontroable PMS and bride with a missing florist anxiety from homones.
Do you thik the doctor understanding how you want to enjoy trips would perscribe Ativan? IT is short acting 2-3 hours to take the edge off when that stuff bothers you. Maybe the generic is lorazipan, can't remember for sure.
Xanax maybe too sedating, the .5 of Ativan is not.
It takes the stress off the little things freaking you.
Have a good trip to NY.
di

 

[honugirl]

I'm not sure if he'd do that. He's not really big on understanding much of what's going on with me (my regular doctor, apparently my specialist kicks everything like that back to my regular doctor which gets me nowhere). I can always ask though. That's a really good idea. I just get so uptight about everything and never understood why. I love Disney. I love being there, I just never got why the little things bugged me so much. Thanks. Maybe I can try it in NYC first.

 

[jt'smom]

honugirl,

first, stay positive about your bt dx, and second, you will still have a blast! i've been battling a brainstem glioma for 6 years, and i went to wdw about 18 months after my craniotomy biopsy. since then, i've been back twice and am going again in august with my 12yo ds and 2 teenage nephews. i live with constant dizziness, disorientation, fatigue and have a hard time walking at a normal rate, but i have found that slow and steady, with plenty of breaks is the way to go at disney. standing in long lines is the hardest, but my dh is wonderful about letting me lean up against him if there is nothing else to lean on. i asked my both my neurosurgeon and neuro-oncologist if it was ok for me to ride on the more intense rides, and they told me that i should do whatever is most comfortable and makes me happy! also, we tend to take midday breaks and swim at resort pool and go to the waterparks where i can just float on lazy river and enjoy. i've not rented a scooter, but this time i might, since i've gone downhill a little, however since i have that perpetual feeling of having had a "few too many", i might be more dangerous to other people!!! hang in there and have a WONDERFUL time.

 

[PammyJJane]

Honugirl,

I'm so sorry to hear about your diagnosis, but I'm so glad you're going to Disney anyway! I had a comment about going back to the room and resting. I SO know what you mean about just hating the idea of losing that time and going back to the resort; like you I'm sure it was advice I'd read over and over but just never paid any attention to at all. But recently I had to start doing that (for a reason other than my health) and you know what? I really did feel so much better and enjoy so much more during the late afternoon and evening. I didn't get sore, I didn't get cranky or too wired and I actually enjoyed my time back at the hotel because I knew I was going back in just an hour or so. And now on our trips I'm just so much more relaxed and frankly, happier. I wish I'd taken breaks a long time ago.

So if you find the first aid station doesn't give you as much rest as you need and you do find a hotel rest is needed on some or all days, don't worry about it - it's actually a good thing! All those advice books are right.

Have a wonderful, magical time.

- Pam

 

[honugirl]

Thanks for the replies everyone! I think I will be taking a lot of breaks. I just got back from 10 days in NYC and found out that I'm not as strong as I used to be and everything is a challenge. I did join a local gym in hopes of increasing my stamina a little bit more before I go. For those of you who had brain surgery, how long before your neurosurgeon let you go on the big rides? I'm going in September which obvously doesn't leave much time to do surgery and have any sort of recovery. So I'm worried about having to delay it (the surgery) until I get home. I don't want to miss my Disney vacation since I've been planning it for a whole year. What to do?

 

[disneymarie]

I am glad the trip to NY went so well. Yes even from age we lose endurance but wow NYC can take a beating even on the young.

Why do they want to do surgery. Since my son's diagx several years ago they monitor with MRI and reg blood work for prolactin levels. So far everything is OK. He is monitored by Hershey Medical center.

If things need to be taken care of ASAP you really have no choice. My son did Disney with no limitations on rides, but as I said no surgery. I would think any kind of surgery there is a recovery period. do some searches for chat rooms of the medical arean that may help. I have gone to braintalk.org and neurotalk.org for forums and chats.

I wish you all the luck, keep us posted.
di

 

[honugirl]

Thanks for the reply!

They want to do surgery because of the type of tumor I have. I have an ACTH secreting tumor and if they don't take it out I will be stuck with Cushing's Disease which doesn't kill on it's own, it's the co-morbid disorders that do the job for it.

Thanks for the sites too. I think I'll go check them out.

I'm taking Mass General in Boston by storm on July 10th and will know more then about what they want to do. I'm really torn. I'd like it out, but I'd like to enjoy my vacation too.

 

[IntercomGroupPage]

You should also check out Gamma Knife, it's non-invasive and works for most pituitary tumors. They have a great program at Rhode Island Hospital (since you are coming to Boston):

http://www.drnoren.com/

I don't know if your tumor fits the criteria for treatment, but it's definitely worth a look.