question about treatment

I spoke with NINDS at NIH today and they said they will probably take on my case. I have an epidermoid tumor in my sella turcica which is causing some problems. Have any of you had or know of anyone that's been treated at NIH?

[rumpled]

I know a few people that have been treated there.
It is like a campus and there is housing for the person that goes for you if you arrange it in advance if you want, or there are hotels. It is sometimes (ok, almost always) hard to get in as you have to fit into a study protocol or have something weird, and be sponsored by a doctor.

The docs there are typically top notch! You will get a lot of testing beforehand and they may want a follow-up protocol. It really depends on the nature of your disorder. Your doc has to submit records and you too - and it had to be approved before you can go.

[steph9803]

I talked to the head science research nurse of the neurosurgery unit herself...I told her the whole story and she's pretty sure they will take me. I will send my scans Monday after my appt along with the list of symptoms I told her about and they will review it the next week. I'm so glad you chimed in..I was going to write you later and ask if I didn't get a response. I'll pm you the link to the study she said I fit in.

[rumpled]

Excellent! Keep us posted!

[steph9803]

I guess that's the only good thing that's come of it being a super rare tumor :P

[horselip]

I sure hope that you get in too.
I was just thinking about how much has happened with your case in the last month, wow.
Sending positive thoughts...
Horselip

[steph9803]

It's starting to seem far more real which has me terrified..but I have to believe and trust that things are going to work out

[steph9803]

Oh gosh........NS called today and my recent MRI showed more complexity than the last. He said he thinks it's time to start the process to remove it :( I wasn't expecting that at all since he was more for the less aggressive path

[horselip]

Aloha
So what is the next step according to the NS? At least he is watching your MRI's, which is very good. How long ago was the MRI before this new one?
Sorry that this whole dang thing is moving so fast. Sending hugs from Hawaii.
xxHorsey

[rumpled]

It is scary that a change has shown up from one MRI to the next - so I hope that they accept you and get the show on the road.

Is the the NS from NIH? Get a buddy to help you plan, and get your house and a few meals in the freezer, and hopefully head off to get the mess out of your head.

I named my tumor - a lot of us do - we name it and then say bye! Keep a sense of humor in this trying time.

[steph9803]

Here's the MRI report from 7/19..the last one was a month earlier. It's grown some and seems to be more complicated for sure in this one. This is the skull base NS at UT

FINDINGS: There is a seller/suprasellar mass which appears separate from the pituitary gland, displacing the pituitary gland inferiorly and displacing the pituitary stalk posteriorly. This mass is of near fat intensity on precontrast T1 and T2 sequences. There is no definite enhancing component of the mass on postcontrast images. The pituitary itself appears to enhance homogenously without focal lesion. the mass is centered in the suprasellar midline, splaying the prechiasmatic optic nerves and supraclinoid ICA laterally. The mass extends laterally beneath and lateral to the right supraclinoid ICA. The mass measures approximately 16mm in greatest AP dimension x 13.8mm in craniocaudal dimension x 24.7mm in lateral dimension.

[steph9803]

I wanted to see what you all thought about this and what it means. I know it's more detailed than the last.

[tiredbuthappy]

(posting your previous report to help with comparison)

Impression: 2.0 x 1.2 x 2.0 cm nonenhancing mass in the suprasellar cistern which appears to be separate from the pituitary gland, optic chiasm and hypothalamus as well as the internal carotid artery. The differential includes craniopharyngioma and epidermoid cyst. Less likely is a cystic glioma or cystic astrocytoma. CT scan of the sella turcica would be of benefit in further characterizing this lesion as the presence of calcifications or fat within the lesion may distinguish it as being a craniopharyngioma or epidermoid cyst.

Findings: There is a 2.0 x 1.2 x 2.0 cm mass in the suprasellar cistern which demonstrates intense increased signal on T1-weighted images and intermediate signal on FLAIR and T2-weighted images and no significant enhancement. The mass appears to be separate from the pituitary gland, and anterior and separate from the hypothalamus. The mass extends towards the right orbital apex and appears to partially encase the right supraclinoid carotid artery. The mass appears well circumscribed and there is superior displacement of the optic chiasm but no definite involvement of the optic chiasm or optic nerves.

[tiredbuthappy]

I found this link on another site I frequent. It has a list of neurosurgeons that you can send your MRIs to for additional opinions. Many of them will do so for FREE. As the site states, make sure you check with them to make sure they do it for free before you send the scans. Many people on that site have done this.

http://virtualtrials.com/btcenters.cfm

Also, I don't recall... have you seen a neuro opthamologist? Make sure that they are tracking changes in your vision, as that will give cues to growth. The changes can be very subtle and only detectable in visual field tests, color saturation, or OCT tests. The information is also valuable to the neurosurgeon when deciding when and how to treat.
I was going to try to interpret portions of your results, but am afraid I will get something wrong. One helpful thing can be to google individual terms. Even if it doesn't give you the big picture, it can help with understanding the structures involved.

Please continue to keep us updated. I feel your anxiety and concern, as I was there only a few months ago. Take deep breaths, and accept as much help as you can get. There were days where I was essentially nonfunctional, and I had people help me with the kids when DH was working. I also relied on meds to help me through that awful time.

[horselip]

I will try to interpret, just keep in mind that I am NOT a surgeon so I don't fully understand the implications of what this means anatomically.

There is a seller/suprasellar mass (the sella is the bony cavity where the pituitary gland sits, suprasellar means "above") which appears separate from the pituitary gland (this means that it might not be connected to the gland which i would think is a good thing), displacing the pituitary gland inferiorly (pushing it forward) and displacing the pituitary stalk posteriorly (backward). This mass is of near fat intensity on precontrast T1 and T2 sequences. There is no definite enhancing component of the mass on postcontrast images. (the mass does not enahance, which probably helps them to know what it is made of)The pituitary itself appears to enhance homogenously without focal lesion. (looks like there is not a separate tumor in your pit gland) the mass is centered in the suprasellar midline, (above the sella, in the middle) splaying the (spreading out) prechiasmatic optic nerves (a part of the optic nerve) and supraclinoid ICA  (the part of the Carotid artery that is in that area) (sideways). The mass extends laterally beneath and lateral to the right supraclinoid ICA. The mass measures approximately 16mm in greatest AP dimension x 13.8mm in craniocaudal (along the long axis of the body) dimension x 24.7mm in lateral dimension.

Hopes this help you to understand the MRI a little better
xxHorsey

[rumpled]

You can get the expert here to read your film for free - but it may be that you need surgery sooner rather than later!

[steph9803]

Thanks for all of the responses...I got a lot out of them. I know I've known about this for a little while..but now that it seems to be more "right now" it's really on my mind all of the time. I wonder why the last MRI went into so much more detail than the others.

I really don't know how I would be getting through all of this if I was walking into it blind..or if I wouldn't have done the research to find the right dr

huge XOXO's

[rumpled]

We are here if you need us!

[steph9803]

It looks like I'll probably be having the surgery on the 2nd...has me sick to my stomach now...but I have to know that it's going to be okay.

[tiredbuthappy]

It's going to be OK! I'm not going to lie- it was rough for the first 2 months. But I am now living life almost normally. And recovery was easier than the wait, and not as bad as I had imagined it would be.

Let us know if you need tips on preparing for surgery. Also, be sure to ask the NS lots of specific questions so you know exactly what to expect. Meds you'll be on, how long you'll be in the hospital, restrictions after, etc... Even silly things like will he shave your hair, where, how much etc. My NS traced with his finger exactly where the incision would be so I knew what to expect. I was lucky- I had a NS who doesn't shave any hair, but many do.

Here are a few things-
~Make a plan for childcare and line up help for yourself for at least a month after surgery. ~See if someone can organize a meal donation site for your family. Someone set up a mealbaby site for us and it was a lifesaver. we got 2 meals donated weekly from friends and family and it took a huge burden off my husband.
~for my kids- i bought and wrapped a small gift for each to get every morning that I was gone. It brightened their day.
~I used our webcam on the laptop to video record our nightly prayers, me reading stories with them, and us just being silly together. They didn't need to use it because family members kept them busy, but I felt much better knowing they had it available if they got sad.

I know this is unsolicited advice, but I remember what you are feeling. Its terrible. My way of coping was doing all of these things. It was like finding a way to have some control over life when everything seems to be spiraling out of control. Well, this and Xanax. Xanax made it possible for me to function enough to do all those things. By this time next month you will be past all of this and will probably have a very new perspective on life.

[horselip]

hey there Steph-
Glad that you a date. This waiting part is the worst, I swear. TBH gives really good advice about the family stuff. We don't have kids so that issue was not on our radar.

When you in the hospital, after the surgery it is hard to rest. Nurses are taking vitals, the leg pressure thingies blow up and deflate, the blood pressure thingie goes on and off, nurses come in to give meds at all hours, ditto on docs and because I was in a teaching hospital I was like this rare species of a lab rat with groups of various doctors in training coming to watch the show.

So I actually banned all visitors but the hubby. And then my mom set up a phone tree to let friends/family know the latest and greatest.

The thing that I wanted the most was, if you can believe this, was chocolate and Jamba Juice Smoothies. I would have banned the hubby too had he not been my source to the gold. Seriously, that is all that I ate for like five days. It was weird. And this has been the case for each of my three hospitalizations!!!! I like chocolate, sure. But I would have killed for it the second I woke up from anesthesia. I had to beg and cry to have my anesthesiologist to lift the clear liquids only thing pronto. What was up with that?

ok just sharing some of the weirdness that i experienced.

Horselip

[tiredbuthappy]

haha. I also couldn't wait to eat!
And weirdly enough, the week after surgery I drank many many Naked Juices, which was what I craved. Good thing too, because we all know what narcotics do to our digestion.

I wanted company, so my mom and DH took shifts so I wouldn't be alone. I got a private room- ask in advance if it's a possibility. I think they're more lenient with visitors and you don't have to deal with twice the number of nurse visits, dr visits, etc parading through the room. Especially because on a neuro floor, many need bathroom assistance, monitoring, meds, etc...

Instead of a phone chain, we set up a caringbridge page. It made things much easier on my family.

[steph9803]

THANKS GIRLS!!! Keep the info coming...every single bit of advice and info helps me so much...as you probably know :D I'm even reading some of it to DH to help him too. If you don't mind TBH how did you do your caringbridge page?

[rumpled]

The caring bridge website is a good one - I did that for a previous surgery - you just go to the website - google it - set it up for free.

A lot of floors now have private rooms for those type of surgeries - not sure about NIH though but it makes sense.

I wanted lip balm - and I am a music addict so I had to have my ipod asap... :)

[tiredbuthappy]

I wanted my ipad and laptop. I have heard many ppl can't tolerate it after a craniotomy, but I was high with adrenalin (amazed and relieved that I could see and survived) and from the steroids. As soon as I was wheeled into the neurosurgical ICU I asked if they had wireless internet. The nurse looked at me funny and said they did, but patients never use it. I was playing Words With Friends a few hours after surgery :) People couldn't believe I was posting to FB that very same day.

Camera- I had someone take a picture of me and close ups of my incision every day. I didn't know if I would ever look at them, but I did and do. They fascinate me. I had pics of leaving the hospital, etc too.

Of course I had pics of my kids with me. All of the doctors and nurses asked to see them and commented on them. In retrospect, I wonder if they really cared that much about my kids or if they were checking to see if I were coherent :)

Steph- I'll pm you a link to my site so you can view it. You do have to enter your email address to gain access, but the site doesn't spam or sell addresses. It was a huge source of support for me. If you read the guestbook you'll see why- hundreds of well wishes and prayers. I have since printed it to keep. I get emotional when I read the beautiful, supportive things that people said to me. The site also has photos from after surgery, especially of my incision. Look if you think it will be helpful in preparing you, or avoid them if you think they will upset you.

I belong to a site for ppl with my type of tumor, and that is where I got all my tips for surgery. I'll share some more, since your tumor is rare and you may not belong to a bigger support group.

~Expect to have to sleep upright for a while. Many ppl report having to for months, for me it was only 2 weeks or so. I spent the first week sleeping in the recliner- most ppl do. I slept downstairs because the steroids had me up all night and eating all night. DH slept on an aerobed next to me.

~You may want to get a shower stool for showers afterwards. Many people report dizziness when they look up to rinse or close their eyes. You will be in there for a while when washing your hair. And you can expect to me shaky and weak for a few weeks anyways. DH didn't let me shower unsupervised for the first 2 weeks. And he had to help me by passing me things. He also had to help me wash my hair and carefully removed clumps of blood from around the incision. You will probably be advised to wash with baby shampoo. Some surgeons have you wait 2 weeks. I was told to wash my hair 3 days post op. I had no problems with the incision (took a percocet and a xanax before getting together the courage to do it though!)

~No bending or lifting the first few weeks.

~stool softeners- you'll need them. Pain killers will stop things up, and you won't want to be straining

~have someone create a chart and track your meds. There will be a lot of them, and you will be too tired to keep track. It also gets a little complicated as you wean off them and the dosage and timing changes.

~Take pain meds BEFORE the pain gets bad. It took me a while to accept and realize how bad my pain was. The nurses had to explain the pain chart/ number scale. Once the pain gets bad, you need even more meds to bring it back down.

~steroids will make you feel better than you are. I felt like superwoman when I first got home, and it is easy to overdo it. On the flip side, you will probably crash when you wean off of them.

~don't believe them if they tell you that you will be recovered in 4-6 weeks. Your incision will be healed in 4-6 weeks, but that's about it. Your body takes a very long time to gets its energy back. The brain takes long to heal. If you break a bone, you immobilize it and let it heal. You never stop using your brain, so it takes a long time to recover.

~You will hear weird things in your head after surgery. This is normal. Most of us report hearing dripping sounds and popping noises for the first few weeks. If someone hadn't warned me, I probably would have freaked when I first heard them. NS said it's normal.

~ you may be able to feel the screws and plates in your head. I couldn't feel mine until the swelling went down 2-3 months post op. Now I have to make an effort not to rub them. It's weird, but generally painless. But weird. And a great way to freak someone out. "Here honey, feel this for a second..."

[rumpled]

Great stuff! I don't have an ipad... waaah! I did some pics too.

No one told me about the halo beforehand! So prepare with a tube of neosporin! For me, those hurt more than the surgery...

If you have surgery via the nose, prepare that sometimes very large scabs - impossibly large scabs - fall out the nose. We call them scabs the size of New Jersey. They can surprise and choke you so carry tissues at all times.

Post op pit - steroids may have a different use - it really depends on if the tumor is or is not on your pit and if they hit your pit and if you have to replace post op.

[steph9803]

I feel tons better...you all are the best! I have found a very small group of people with this tumor..but very few have had it in this locations..so it's been somewhat helpful but nothing like over here! This has helped me to be able to think ahead and not feel so lost as to what to expect. XO

[tiredbuthappy]

what kind of procedure will it be? We may be able to give advice more specific to you.

[steph9803]

I'm pretty sure it will be the same cut as yours..more in the front right side.

[steph9803]

First I want to tell you all that I have come back and read through these several times and I find something else helpful every time.

Question...what to bring to the hospital?? How long until I can pull clothes on over my head?

[tiredbuthappy]

I purchased short sleeved button down pajamas and found it to be very helpful. Shortsleeved because they need easy access to your IV ports, and button down because you will be scared to have anything go near your head. Hospital gowns work, but I felt very frumpy in it. And your hiney hangs out when you walk down the hall :) I brought bright and cheery pajamas cheap at KMart.

bring your cell phone in case you feel like calling someone.

pillow from home (hospital ones stink)

my hospital gave me all toiletries i would need (nice organic ones), but if you want anything specific you can bring it.

hand sanitizer to have by your bed. Ppl will clean their hands when coming in, but you will want to before eating.

music
camera

I was glad I had biore face wipes to freshen up. You may want flushable bottom wipes for the same reason but on the other end of things :)

chapstick

***hair detangler spray**** and a wide toothed comb. Your hair will be a greasy, knotty mess from surgery. Even if you don't touch near the surgical area, you will need these items to gently work out the knots in the rest of your head. I like Johnson and Johnson's

a small mirror to help you clean up in bed.

notepad to write things the doctors and nurses tell you down. Also for you to jot down questions to ask the doctor when he comes.

many people recommended earplugs, although I was much too interested in knowing who was coming and going to use them. depends on how well you tolerate noise.

You may want to bring a lightweight head scarf. Some people prefer to hide their incision. I wore mine with pride most of the time.

by the time I was home, I was able to change shirts with help. I bought a few pairs of yoga pants and yoga shirts with built in bras and lived in those the first few weeks. I didn't want to wear a bra because I wanted to be comfy, but I also wanted to be presentable enough to walk the block or not be embarrassed when people stop by.

[tiredbuthappy]

It occurred to me to also ask how long you will have help.

DH was home for 5 weeks, and I needed him the entire time. After that, I wasn't alone with the kids for a few weeks, but I personally didn't need the supervision. We kept the nanny during the days when DH worked, and I had friends and family come and play with the girls in the evening. After about 2 months, I was alone with the kids a couple times a week, but the only reason I was able to handle it is because they nap at the same time, and for 2-3 hours.

At 3 1/2 months post op, I still MUST stop and lay down every afternoon. By 1:00 I start getting very shaky if I don't. I don't necessarily have to sleep, but I have to put my head down for an hour or 2. That's why I always post at the same time daily- my down time is computer time. I am actually very nervous about this fatigue because I'm going back to work in 2 1/2 weeks. I may have to find a way to lay down on my lunch break, and I fear I will have no energy for my kids when I get home. My NS this fatigue is normal, and can last a year. Brain surgery is a form of brain trauma/injury, and our minds and bodies take a long time to recover.

[steph9803]

I went shopping for some short sleeve button on PJ's yesterday..found the LAST ones after going to 6 stores so I'm glad I asked now rather than later :D DH will be off for 2 weeks and mom's taking off 3..we are all staying at my parents house for probably a month afterwards. They have a big house and it will be easy to keep everyone separate if need be and I will have plenty of help at all times. Thankfully my daughter (who turns 13 two days before the surgery) will be able to take off of school as long as I have a note from my dr saying that it's necessary. If I need more help mom can take more leave though so I feel better about that. I don't recover well from simple surgery so I'm already kind of worried about that.
At the moment I'm just HOPING AND PRAYING that I wake up from the surgery and can still see! I've had many many crying bouts in the past 2 days which is not like me..not a big crier. How did you all cope with the waiting?? It's all I seem to be able to think about right now.

[tiredbuthappy]

I didn't cope. That was the problem. I was a total mess. I had to take Xanax and Ambien, and that barely got me through the day. I need lots of help with the kids because between the anxiety and the meds, I was useless in the evenings. The meds were necessary though. Without them, I developed a stutter, severe nervous habits, twitching, etc.

Gotta say that what you are experiencing now is the hardest part. I think waiting was worse than surgery and recovery.

[horselip]

Hey Steph-
I was like TBH. I needed to take an antianxiety med before that first surgery. Like you, I was super stressed about it. I was seeing a therapist at the time.

Funny, I am thinking back and remembering that I started therapy initially because I felt physically awful but was undiagnosed and tossed around for a long time (a different book) Anyways my therapist prescribed an antianxiety med and it really did help with the physical symptoms. It sort of made be "numb"

Waiting is the worst. It is so hard not to think of the "what ifs". But they really are rare. You do have a wonderful surgeon. Think how quick that they have been to address this, in reality. You've got some good care going on!

sending you a hug from Hawaii
Horselip

[steph9803]

I think that I do have a great surgeon..I believe that and it helps me to feel better. He's been very hands on and I feel that everything's going the way it's supposed to be right now.

I have a full bottle of klonopin..I take a half of one and almost pass out..it's worth trying though. It's really exhausting to be so consumed with the thoughts of this.

I had my endocrinologist appt today...she tested all kinds of stuff so we'll see what comes of that. She also wants to see me back two weeks after the surgery to repeat the same tests. I asked lots of questions and she informed me of all the standard things..DI, growth hormone, FSH and so on that could happen or get messed up.

[rumpled]

It is good to have a baseline set of tests.

I took a few things to the hospital like chapstick and music but for the most part, I was not to with it while I was there or I was walking (that was a condition to get out) or trying to walk so I could get out and sleep. There just is no sleeping in those places! LOL...

[steph9803]

My mom bought me a Kindle as an early Christmas present so that I could have it for the hospital. I figure the games and stuff on it will be good if I'm able to do anything. Plus it cheered me up some :D

I'm sure I'll be out of it too...I'm sensitive to meds..like I said above. I really can't wait to get this over with, but at the same time I'm just afraid of not waking up. decisions...decisions...

[tiredbuthappy]

my mom bought me the Wii Fit as a present before surgery. It helps with balance and stuff. I'm just starting to use it now.  

[rumpled]

Balance??? What is that?
I keep bugging my hubs for an ipad or the like - kindle is great too I love to read when my eyes cooperate.

[steph9803]

lol...I'm in trouble if I lose my balance at this point...Gavin still has to be carried so much ..it would be pathetic if he was more steady than me :P

I dream of an ipad at this point..I was very fortunate that my mom bought me a new laptop when mine went out right after finding the tumor. If I would have known I would have got DH to put in the rest for an ipad. Toooooo late now though..so it will be a very long time before I get anything else. I've definatly been more spoiled since we found out than ever before. I never ask for much so it's been kind of nice and I'm very thankful.

I woke up pretty at peace this morning..I'm sure that will change soon though. I never make it long in the day anymore without dwelling on it.

[tiredbuthappy]

ipad was great for reading after surgery because you can make the print as big as you need. Also, with the back light I could read in the night without turning the lights on. I don't know if a kindle does that, but assume that it would have the option of enlarging print.

Most people have some balance problems after surgery. Mine wasn't major and mostly related to strength (or a lack of it). However, balance after surgery depends on the location of your tumor and what is distrubed to get at it.

As for feeling peace- it actually increased as surgery approached. I honestly knew in my heart that I would be OK, and the fact that it was going to be over soon also gave me a sense of peace. Even the night before was OK. The morning of surgery wasn't as horrific as I had envisioned, although I had a stream of tears going down my face as I walked up to the hospital.

[steph9803]

BIG day tomorrow...meeting with the NS to talk about the surgery in more detail. Hope to have all of it worked out so I'll feel as if I have a little bit of control over what's happening in the next 2 weeks. Any questions that I just can't leave without asking him?? I've made a list of the one's you all have offered so far.

[steph9803]

BIG day tomorrow...meeting with the NS to talk about the surgery in more detail. Hope to have all of it worked out so I'll feel as if I have a little bit of control over what's happening in the next 2 weeks. Any questions that I just can't leave without asking him?? I've made a list of the one's you all have offered so far.

[steph9803]

sorry my baby posted it again somehow :P

[tiredbuthappy]

I asked EVERYTHING. I had it written down in a notebook, and spaces between each for my husband to write the answers.

~get clarification on what you should stop taking prior to surgery. There are the obvious things like aspirin, but certain vitamins also need to be stopped because of blood thinning effect
~how long does he expect the procedure to take
~will your family receive updates while you are in there?
~can you have a private room?
~ will there be an assisting surgeon?
~ ** If it's a teaching hospital (many are), ask what role the residents will play in your procedure? Who does the anesthesia? (I am all for new medical personnel learning from me, trying IV's etc, but I would NOT want them in my head. I know they need to learn, but that was something I would not have been comfortable with)
~ What to expect when you wake up (some surgeons leave you intibated; some send patients for MRI's shortly after, etc... I didn't have any of that. I went to the PACU for about an hour. My family did not see me until I was sent up to the neurosurgical ICU after)
~ Will he be shaving your head?
~Meds after surgery
~ Stitches or staples? Who takes them out and when?
~ When can you wash hair?
~ What lingering deficits can you expect based on the location of the tumor and what he needs to get through to access it
~ Will you be able to see or feel any of the screws or plates? (I was told he would use a bone wax to smoothe most out. While you can't see mine, I can definitely feel them now. For the first 2 months there was too much swelling to feel it)

If i think of any more, I'll come back on. Good luck.

[steph9803]

There was plenty there that I hadn't thought of..thank you! I
I still  have a couple of hours before we leave so I'll check back to see if anyone has anymore advice :0)

[rumpled]

What day is your surgery?

[steph9803]

It's on the 6th..he said it's going to be a right craniotomy and will take 3 hours at min. but more like 6-8 hours. He said that I should plan on not being able to take care of the kids for at least 2 months..which is what I thought but expected him to say less. He mentioned that radiology on any remaining tumor has been thought recently to help..but the location would probably do more harm than good.

[tiredbuthappy]

What is the exact location and dimensions?

I'm happy that your NS has realistic expectations of recovery. From my experience, and those of most on the other forum I frequent, most NSes say you could return to work in 4-6 weeks. That is insane and completely unrealistic.

I'm not a very religious person, but I found a lot of comfort in prayer. I knew in my heart everything would be OK. I can't help but think my prayers were answered. I recently got all of my records from my NS. It included correspondences between the surgeons that made it very clear that they didn't feel it would be safe to even try to touch parts of the tumor. Somehow, not only did they manage to get to it, they did so without doing any damage. When the doctors are able to accomplish even more than they thought they could, I consider it a miracle :) I have heard reports from a surgical nurse that the surgeons were so pleased after surgery, they did a chest bump in the OR. Anyways, like I said I am not one to speak much about religion as I feel it is a very personal thing, but if you don't mind I will say a prayer for you.

There are some options after surgery, even if they don't feel radiation is a good choice. I am doing some reading up on proton beam therapy. It's gaining popularity and more centers are being built. It s*cks that we have tumors, but we are lucky that we live in an age where technology is constantly changing.

[steph9803]

It's in the Sella Turcica between the optic chiasm and pituitary gland..it's rather large for the area. I think the biggest part is measured around an inch.

This time last year I was looking at my 4 week old baby who was unable to move and very very sick..he would stop breathing on a regular basis..had very low tone..swallow dysfuction..had a feeding tube and was on an apnea monitor (which he still is)..I could go on for an hour...When they did the MRI and found his myelin in his brain was severely behind they almost guaranteed me he had something fatal. I was told if he did he would pretty much be a vegetable..and sent on my way to start therapies and seek out other specialist around the country because nobody had ever seen anything like it. I had one doctor when leaving the room stop and say "Sometimes there's things that we as doctors can't even fix..that ONLY God can fix this" I begged and begged and begged God to let me keep him.. He is no 13 months old and doing AMAZING!! He still has several therapies a week..but he eats well says mama and dada and runs all around! I would never have been so dependent on prayer and miracles if it wasn't for that. His pediatrician even brought his picture with her on a mission trip to Honduras and told them his story.

I'm also glad he gave me the realistic answer's instead of what I wanted to hear..He even said that's if everything goes perfect.  Me and DH were talking when this first came about and saying how lucky we are that this wasn't 20 years ago!

[rumpled]

Sounds like you have an experienced and realistic surgeon. Keep in mind - if you have any hormonal issues from the surgery, recovery may take longer. There is surgical recovery and hormonal recovery. I had a 8 month hormonal recovery from my first surgery (which is longer than a lot of people but it can take up to 2 years) and my last surgery left me disabled - so just be nice to yourself and keep an eye on symptoms.

It could be that your pituitary may be spared so lets hope and pray for that one!

Radiation is really bad in that area (I am looking to avoid it myself!) so I do hope you can avoid it. If you have to have it - look into proton beam therapy. The insurance may balk at the cost, but it is the most sparring of healthy tissue so fight for it.

[steph9803]

All of my testing from the endocrinologist came back normal..so anything at all that's different will be a direct result of the surgery.

12 days.....

[rumpled]

In some way, that may be a tad more difficult as you won't have a clue as to what to expect if a hormone goes off.
- if you get really thirsty and start peeing a lot, contact the doc immediately
- if you start to crave salt, go for it and contact the doc for testing
- if you get really tired and sleep a lot - get testing
- if you get tan, get testing
Just keep an eye on the symptoms - and testing. Keep copies! Hopefully he won't wack the pit and it will stay happy - you have enough to deal with!

[steph9803]

I didn't think of it that way?? Love the last sentence though..I sure hope it stays happy :0)
The endo. said I will probably get DI..so expect it. I think I remember her saying that because of the pituitary stalk but not for sure. The issue would be will it be permanent or temporary. It's good to know what to look for. I'll make a list for my mom too. I go two weeks after the surgery to redo the test.

[rumpled]

Yeah - it is the stalk. We all want happy pits! DI happens a lot after surgery and most often it is transient (doc speak lol) but a few people get it longer. The hypothalamus is supposed to smarten up after a while and take over so it can still only be temporary in some - one guy I know who had his pit removed had his DI go away. That is my only hormone I have left and I am not sure I want to nuke or chop that one away...

You will know immediately if you have that issue BTW - don't wait - the hydration can deplete  your electrolytes and take your health down quick! SIADH is another weird thing that happens after surgery...

[steph9803]

I'll go look that up..haven't heard of that one. He had said I would probably have an endocrinologist see me while in the hospital but not for sure.

[rumpled]

Note - giving you worst case scenarios to be advised, not what is common! You will likely be fine in the hands of a skilled surgeon.
SIADH is just one of the weird freaky things that happens when sodium gets messed up.
http://www.endocrinesurgeon.co.uk/index.php/what-are-the-symptoms-of-siadh

[steph9803]

Like I said before I can't get enough knowledge about this...I'm a researcher and you girls have walked me through this! A week from today I'll be going to the operating room...spent half the night crying then woke up to get the kids on the buses now my brain is going a million miles a second as usual these days

[rumpled]

All will be well - try to find a calm in this. Make lists, prepare your things to put them above waist level, slip on slippers and shoes (bending over after surgery for a while is generally a no no) and get some nice books so you can relax both before and after. Get comfy clothes and PJs that open in the front that won't interfere with your stitches. Anything going over your head may be irritating unless the hole is large (then it may be a bit revealing LOL)

After - I had no attention span - this is usually due to anesthesia as I am like this after every surgery (12!) so I liked short TV shows. short stories, easy fluffy movies - nothing like war and peace if you get my drift. My hubs was crazy as I kept watching old shows I had seen before, the same movie over and over (LOL) but I had the attention span of a gnat. Just go with it - it does end. Just think, in one week you will feel so much better!

[tiredbuthappy]

I also had the attention span of a gnat, which is why I was on the internet a lot. I got very antsy and restless, and eager to get back in to the routine. Steroids made me a little crazy, but luckily I only had to be on them for 10 days. I was up all night eating during those days. At least the new season of TV will be starting for you... I was stuck with reruns and summer cr@p during my recovery.

You will be OK. I'm sure I've said it, but the stress before surgery was worse than the procedure and recovery. As soon as you have an IV, you can ask for something to relax you. They wanted to place a second IV, the arterial line, while I was still in the pre-op area. I told them they had tortured me enough and that they can do that once I was under. I reminded them that they had promised me something as soon as I had a line in. They agreed and wheeled me back. The last thing I recall is the anesthesiologist giving me that something to relax me. I never even saw the surgeons come in to the OR (or at least dont remember seeing them).

Take a deep breathe and focus on loving your little ones. Spoil yourself this week with your favorite meal out and a pedicure. Buy a cute lightweight scarf to wear on your head after surgery.

I just read the book Curveball, When Life Throws you a Brain Tumor by Liz Holzemer. It is an easy read, and may help you while recovering. It normalized all of those crazy feelings I have been going through as I recover and try to get back to "normal." You can order it from Amazon and it will arrive after you are home. It may also help those around you try to understand what you are going through.

You will be OK. It will s.uck for a while, but you will be OK. I can't even believe how far I have come in the 4 months since surgery. I admit I am thinking of seeing a psychologist to help me come to terms with what I have been through and sort out some of the "crazy" in my head. But I still say the road has been easier than I thought it would be.

[steph9803]

As this gets closer I want to thank all of you again for all of the help! I hope to be doing the same in the near future..it's so nice to not be alone in all of these feelings. I would also be walking into this blind if it wasn't for you girls!  Like i said weeks ago I can't get enough info. Every little bit helps me to feel more prepared.

I am going to order that book Thursday so it will get here by Saturday. I can't wait to read it!

[steph9803]

forgot to add that I have been thinking the same thing about the tv shows lol I also ordered Direct TV so that I could get the NFL package and see the Saints games every week...go figure that I'll probably be in icu for the season opener! Then after that I'll be at my parents for a few weeks and it won't matter then either :P

[horselip]

Just remember that you are the queen bee right now. Let people spoil you and get you all of your favorite treats. It is ok. People really don't know how to handle us pit pats sometimes. I say, ask for treats to the ones that ask what they can do to help but who are not really in your inner circle, if ya know what I mean wink wink:)

I don't know how you wear your hair. But you might get a sassy shorter cut this week along with that pedicure.

I am rooting for you and just know that all will be ok. If you do get DI you will have a buddy to dump on about that one.It is really not that bad just really weird.

Hugs from Hawaii
Horsey

[steph9803]

I just posted pics on my profile for you to see the haircut I got a couple of weeks ago...at least I got to donate it :D

I feel like I've run out of time to do lots of stuff I need to do. Today was nonstop. Preop 2 hours away..signing of the living will..getting bank business straight..plus the regular duties..I hope to have one day to rest before

[tiredbuthappy]

I remember the insane, manic running around. There was a lot I didn't finish before hand, and honestly, I didn't care at all that I didn't do it once surgery was over :) It seems much more important now than it really is.

[steph9803]

That's GOOD to hear :0)

[horselip]

Very cute hair cut! I approve :-D

[rumpled]

That was so nice that you donated your hair! Nice cute too - I cut mine too before surgery it just makes it so much easier.

[steph9803]

I also wanted the baby to start seeing me different so maybe he won't freak out after the surgery..so we'll see if that works!