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        New Message Board Archives >> 2006 General Board Posts >> I am a bit freaked out.
        
(Message started by: Mattrf on Aug 5^th, 2006, 1:05pm)

Title: I am a bit freaked out.
Post by Mattrf on Aug 5^th, 2006, 1:05pm

I had my third MRI on Monday and went to see the doc to get the results yesterday. (Remember I have SUNCT not CH)
The meds that seemed to help then not then again after he upped the dosage was back to not helping again. He has also been hounding me to cut back on my pain meds even though I have told him they are the only thing that helps the pain and help to keep my sanity. So I go in and he again pushes me to see the doctor at the Mayo Clinic in Scottsdale, I told him that I had his nurse send them my MRI results the week before but that they had a long waiting list and his appointments where three months out. He said he had talked to him and he said he would work me in, so he picks up the phone and calls him, ok I am getting a little freaked out by how bad he wants me to see this guy, so I ask him about the last MRI and he says well it seemed of but there was a small, I forget the term he used but it was not a good thing I gauss, he said it could be a small tumor but he wanted the guy at the Mayo Clinic to look at it since he is the best in the world. The MRI was of the Pituitary, all this time I have wondered as most of us do about it being something like a tumor that causes our pain and now I am confronted with the possibility of it being just that. I really don’t know how to feel, if it is it means that there is something they could remove and maybe not come back and my headaches would be gone, but we all know there are a lot of down sides to a tumor like cancer and what will I loose besides the headaches if they cut a chunk out of my brain?
I am scared, very scared right now.

Matt

Title: Re: I am a bit freaked out.
Post by Charlotte on Aug 5^th, 2006, 1:26pm

I am so sorry Matt. This sounds like a worst case scenario, our worst fear. If they do have an option and it does help ease your pain, it will be worth it. The hard part is the waiting and the uncertainty while you are in pain.

Hang in there.

Charlotte

Title: Re: I am a bit freaked out.
Post by LeLimey on Aug 5^th, 2006, 2:22pm

Matt I have another friend here in the UK who has also been diagnosed with pituitary probs and not CH even though it presents just like CH and imigran works for her!
She was seen by PG and is waiting to go back in for a pituitary MRI but they aren't hurrying it which tends to make me think thats a good thing.
You have a diagnosis. They have a good idea whats wrong and they are getting ready to deal with it.
Chances are your headaches will be gone too as an added bonus.
The Mayo Clinic in Scottsdale is world famous. I'd heard of it long before I'd heard of CH. You couldn't be in better hands.
I can well believe you are scared hon, I would be too but I'm really relieved you're being seen in such a renowned place and I have every confidence you're going to be fine!
Lots and lots of love
Helen xxx

Title: Re: I am a bit freaked out.
Post by JenniferD on Aug 5^th, 2006, 5:42pm

Matt, my sister had a tumor on her pituitary 8 years ago, and yes, it was scary, but she had surgery to remove it and hasn't had any probs since. Even if you do have to have surgery, you'll be alright.

Sending good thoughts and vibes and comforting hugs,
Jen

Title: Re: I am a bit freaked out.
Post by maffumatt on Aug 5^th, 2006, 6:05pm

Wishing you well Matt.
Matt

Title: Re: I am a bit freaked out.
Post by Jonny on Aug 5^th, 2006, 6:29pm

If the Doc at the Mayo already has your MRI why does he need you there?.....Open your head to see for himself?

Im missing something here :P

Title: Re: I am a bit freaked out.
Post by DonnaHar on Aug 5^th, 2006, 9:20pm

In this world of specialization, the Mayo Clinic doc, being the best in the world, might recognize something your doc isn't quite sure of. It might be something to worry about and it may not. The hell is the waiting for an answer because of all the weird thoughts that freek you out.

I've heard of some pretty new technology that makes some brain surgery a bit easier than before, such as laser removal, and if it does turn out to be a cancer, they can focus in on just the right spot, and implant a seed of nuclear substance that will destroy the cancer without hurting tissue or matter right around it.

I know it's a nightmare waiting to find out and I'm not going to say "oh, it'll be OK" because I don't know, but I will say prayers for you and and wish that all will be OK.

Title: Re: I am a bit freaked out.
Post by georgej on Aug 5^th, 2006, 9:29pm

Good vibes from Idaho for you, Matt, and hoping it all works out well. Scary stuff.

Keep us advised, please. Let us know how you are.

Best wishes,

George

Title: Re: I am a bit freaked out.
Post by Paul98 on Aug 5^th, 2006, 9:58pm

Sorry to hear about the MRI results Matt. Get all the facts of what you are dealing with and know your options before expending energy worring. (I know it's easy to say.)

Thoughts are with you.

-P.

Title: Re: I am a bit freaked out.
Post by Charlie on Aug 5^th, 2006, 10:22pm

Sorry to hear about this Matt.

I guess Mayo is the place to be.....

Now........Don't get upset but.....sometimes with stuff like this doctors get a little anxious. I have a thing on my cerebellum that's been there since 1946. I'm just glad that my current doctor said that digging it out wouldn't do a damn thing for my seizures and that it's probably been the same for 60 years and unlikely to ever be a problem.

Yours is no doubt different but take your time if you can. I may be talking through my hat. Don't listen to me....I'm an idiot.

Hang on Matt. http://www.netsync.net/users/charlies/gifs/head pat.gif

Charlie

Title: Re: I am a bit freaked out.
Post by kevinpix on Aug 5^th, 2006, 11:42pm

Hey, this is the best news possible for you! I have a friend and she had surgery to remove it and the headaches went away, lickety split! I've got my fingers crossed for you!!!! Let us know what the doctor says!

Title: Re: I am a bit freaked out.
Post by Jasmyn on Aug 6^th, 2006, 10:46am

Vibes to you Matt.

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 6^th, 2006, 9:54pm

Thanks everyone, yes the waiting is the worst nothing to do but stress until they tell me when to come in. The wife has already said that no way am I going with out her so she will be there to hold my hand. It is very strange on one hand I am scared shitless and on the other I hope it’s true so they can remove it and I will be better.
Guess we will see, just hope they get me in soon, I am also going to let one of the doctors I work with take a look at the films when I go pick them up to take to Scottsdale and give him a copy of the report to see what he says about it as well.
Send lots of prayers and vibes, I need all I can get.

Title: Re: I am a bit freaked out.
Post by Ree on Aug 6^th, 2006, 10:19pm

We are all praying and rooting for you... I'm thinking it wasn't very professional for that other guy to stress you out... sheesh... and remember it could be something great as others have said here. Maybe a cure for you. Think positive.... and keep us posted....love ree

Title: Re: I am a bit freaked out.
Post by Cathi04 on Aug 7^th, 2006, 12:10am

Matt, the waiting........it can be worse than the diagnosis, can't it? Whatever is going on, you have a wonderful family, both at home and here. Please try to keep your mind occupied till you can meet with your Dr. Dont try to second guess...we ALWAYS jump to the very worst conclusions.

I'll keep fingers and toes crossed, and try to do the worrying for you. Let us know, please.

Big hugs when you need em most......

Cathi

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 8^th, 2006, 3:51pm

Well I took yesterday off and we took the boat out and did some wakeboarding to get my mind off things, it mostly worked but when we where having lunch my cell rang and it was the Mayo clinic. They have me coming in on the 28th of this month, no remember they told me there was 15 people on a waiting list just to get on the appointment list that is three months out, shit what the hell did my doctor say to this guy to get me in so quick?
I got a call back today since I am out of state I asked them to make sure they get everything done in as little time as possible since follow up appointments would be expensive with needing to fly there. So they call me today and tell me to bring my films and that when I get there they will do there own MRI and then I will see the doctor then after him I am scheduled to se the neurosurgeon, boy no stress there!
And on top of all this they are out of network and do not have a contract agreement with my insurance, so $1,500 deductible and max out of pocket of $7,000 so any one want to make bets on how much this is going to cost me? Oh yes and top it off the hotel for two nights minimum and airfare and car rental. Sure hope they fix me for all the money this is going to cost me. Can you say OUCH!

Matt

Title: Re: I am a bit freaked out.
Post by zwibbs/Scott on Aug 8^th, 2006, 4:42pm

Matt, I will be praying that everything works out. I had my brother in law have a small growth on the pituitary gland, and he had the surgery--he was fine---and I believe so will you be fine !!!!!!! Scott

Title: Re: I am a bit freaked out.
Post by JeffB on Aug 8^th, 2006, 5:08pm

I hope they can fix ya man!
You know I'm up here in Sac, if there's anything I can do for ya Matt call or email me!
Best wishes brother!

Title: Re: I am a bit freaked out.
Post by Linda_Howell on Aug 8^th, 2006, 5:32pm

In my opinion, and I know you didn't ask for it....

Worst case scenarios, usually aren't.

You'll be fine. After you get over the stress from waiting, that is.

Linda

Title: Re: I am a bit freaked out.
Post by Pinkfloyd on Aug 8^th, 2006, 5:37pm

Matt,
I'm sure they move up any referrals over the people that call themselves for 2nd opinions etc.
Also, I've been through the clinic before and I can tell you that they do nothing like other clinics or doctors offices. They have their own, very unique ways of doing things. I wouldn't put any weight on anything that is done differently than you're used to....other than very thorough and excellent service.

Also, don't worry if they won't answer many questions or explain what the next step is, until the end of the stay. They don't like talking until they have all the story and have pretty much decided what the best approach might be. They like to have all the answers before before answering many individual questions.

best of luck,
you're in good hands,
Bobw
P.S. Don't forget to keep ALL your travel/lodging receipts because its all tax deductible LOL.

Title: Re: I am a bit freaked out.
Post by LadyLuv on Aug 8^th, 2006, 5:51pm

My Darling Matt:

When you feel the fright of the world
When you're not sure if any one can heal you,
Remember my Dear Friend,
God Can....

When you're scared and uncertain
When you think that no one can hear your plea,
Remember Matt,
God Can..

I will be Praying for you Sweetheart.... and I want you to know and believe, God Can and God Will..

Luv & Prayers
Lady Luv

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 9^th, 2006, 10:42am

Thanks guys and thank you Lady Luv, I know that God does look over me and my family and will get us through all this.
I know I will be in good hands at the clinic and I am very lucky to work with people that are supportive and understand so at least I don’t have to worry about my job.

Matt

Title: Re: I am a bit freaked out.
Post by LeLimey on Aug 9^th, 2006, 4:27pm

Matt I'm checking to see if you've posted two or three times every day and I know I'm not the only one. You're right at the top of our thoughts and prayers and in spirit, we're with you every step of the way. Close your eyes and you'll see us all. (Unfortunately every time you breathe you'll smell Chewy but them's the breaks! ;) )
Let us know how you're doing as often as you can okay?
lots of love
Helen

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 11^th, 2006, 3:11pm

I just went for a walk on my lunch and sat on a bench and had a couple smokes and generally was feeling sorry for myself. I tried to remember the last time I was not in pain or thinking about pain, and I could not remember what it was like. I tried to remember when I wasn’t constantly thinking about the pain my wife is going through with her back and shoulder and also could not remember. I tried to remember when the last time it was that I had good feelings about my family who has shown no understanding or compassion and also could not. I am so tired of trying to look like I am in no pain to keep people from asking what’s wrong and getting the slew of recommended remedies that we all know just piss us off. I am tired of pushing through every day just to be able to go home and try and hide from the world.
I am scared of what turned up on my MRI will turn out to be a tumor even if it means they will be able to remove it and my headaches will go away, the scary thought of all the bad side effects of the surgery permeate my mind and I m unable to make them go away.
I know that the Mayo clinic is the best and Dodick is the best and that he will be able to help me but it still scares the hell out of me and I just can not shake the fear or sorrow.
I hate the fact that my wife has to go through this with me and she also has to keep up a good poker face so I can’t see how scared she is when I know she is as scared as I am.

I just feel very depressed right now and want my life back if I could remember what that was like. I am tired of going through the motions of life instead of actually living it.
I know pretty pathetic.

Sorry for the crying but just had to get it out.

Matt

Title: Re: I am a bit freaked out.
Post by alchemy on Aug 11^th, 2006, 3:20pm

Hey Matt, don't forget I can save you motel charges. They have two clinics out here and I'm in close range of both of them. Plus there's free beer at my motel

ps. I can help with transportation

jim

Title: Re: I am a bit freaked out.
Post by E-Double on Aug 11^th, 2006, 3:25pm

Good luck brother!

Title: Re: I am a bit freaked out.
Post by LeLimey on Aug 11^th, 2006, 3:32pm

oh Matt [smiley=hug.gif] It's good to get it all out.
This family is rooting for you every step of the way, we're behind you 100% and we're praying and sending vibes as best we can.
Meet up with Jim, give him a big hug from me and spend some time with another clusterhead, its the best therapy there is.
You are going to be fine. This is the turning point for you, you're nearly there and its going to be good!
lots of love
Helen

Title: Re: I am a bit freaked out.
Post by alchemy on Aug 11^th, 2006, 4:09pm

Helen, I'm sending a big hug back to you ;;D

Title: Re: I am a bit freaked out.
Post by georgej on Aug 12^th, 2006, 12:42am

Matt, wishing you all the best with your situation. We're all behind you.

And don't worry that you're "crying" about it--that's what we're here for.

Best wishes for painfree days ahead,

George

Title: Re: I am a bit freaked out.
Post by kcopelin on Aug 12^th, 2006, 12:19pm

Matt,
You and your family are in my daily prayers. I pray for peace in your heart, hope, grace and mercy for you. And, of course, that the docs find exactly what they should find and get it done.
PFDAN to you and to your wife.
kathy

Title: Re: I am a bit freaked out.
Post by Shazza on Aug 12^th, 2006, 12:34pm

Matt,

I know I'm new but I just want to say that you are in my thoughts and prayers, chin up hun x

all the best
sharon x x

Title: Re: I am a bit freaked out.
Post by brewcrew on Aug 12^th, 2006, 5:23pm

on 08/11/06 at 15:11:33, Mattrf wrote:

Sorry for the crying but just had to get it out.

Matt - There's a reason why we cry, and sometimes it's not about showing others how we're feeling. It's about cleansing the soul. It's about so many things bubbling over at once that there's nowhere else for them to go but through the tear ducts.

Those tears have a purpose - try not to prevent them from making their way out. Ever notice how you ALWAYS feel better after you're done? You also look at things differently after a good eye-washer, and it's much easier to see things in their simplest form, to see them for what they really are. It's because you've washed away all the day-to-day bullshit from the eyes with which you see them.

Keep 'em coming, Matt. Those tears are healing you.

Bill

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 14^th, 2006, 11:21am

Thanks guys, I really appreciate all the support.
Two weeks too go, I keep wondering if going to a UNIX class for four days next week was a good idea but I think it will occupy my mind and help me get through the week before going to Scottsdale just hope I retain the training since I am going to need it.

Matt [smiley=hug.gif]

Title: Re: I am a bit freaked out.
Post by alchemy on Aug 14^th, 2006, 11:35am

Hey Matt, you know you've got me in your corner. Looking forward to being here for you and your wife in Scottsdale.
jim

Title: Re: I am a bit freaked out.
Post by imnotbub on Aug 14^th, 2006, 11:41am

The class is a great idea. An idle mind keeps itself busy with 'imagination' which is the last thing you want.
I'm not big on prayer, but I will say one for you. You also have my best wishes.

Steve

Title: Re: I am a bit freaked out.
Post by LadyLuv on Aug 14^th, 2006, 1:21pm

[smiley=hug.gif] [smiley=hug.gif]

O Lord, as Matt face possible surgery,
You know what his fears and worries are.
Please guide his heart and soul to trust in you,
to know that you are at his side
and pouring your protection upon him
even through the darkest valley.
Amen....

My Dearest Matt:

I'm sending you a very special angel
And even though her, you can not see,
The reason she's so special is
She's just for you & your wife, from me.

Whenever you are scared or lonely,
Or feeling sad and blue,
Remember I've sent you an angel
And know I'm Praying for you.

Luv, Hugs & Prayers

Ruthie

Title: Re: I am a bit freaked out.
Post by TomM on Aug 15^th, 2006, 9:38am

Matt--
I have no words of wisdom, no funny annecdotes, no insights to what you are experiencing.
All I can offer is hope and well wishes.
Good luck.
TomM

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 15^th, 2006, 11:18am

on 08/14/06 at 13:21:00, LadyLuv wrote:

Ruthie thank you so much, I sent this to my wife so she also could feel your prayer.
[smiley=hug.gif]
Matt

Title: Re: I am a bit freaked out.
Post by cootie on Aug 15^th, 2006, 11:26am

Sittin here wishin you the best and that it all works out in your favor.......PF and liveing life !!!!! Pain game Pam

Title: Re: I am a bit freaked out.
Post by Mattrf on Aug 15^th, 2006, 11:38am

I am really having a rough day today, not mentally at least not to much but had a hell of a bad night. Normally I sleep fine and it is during the day that my head is killing me but for some reason last night it got really bad and kept me up most of the night and has not gotten much better and the lack of sleep doesn’t help much either. I did make it to work but am sitting here in my office with the light out at the PC wondering how the hell I am going to make it through the day. I have missed very little work so far and have very understanding employer but understanding only goes so far so I try not to let it effect my work and attendance since I really want to keep this job.

Matt
[smiley=hammer.gif]

Title: Re: I am a bit freaked out.
Post by Yorky on Aug 15^th, 2006, 11:58am

wish i could send you some strength to get through the day buddy.
i just hope you have abetter nite tonight.pfn.

Title: Re: I am a bit freaked out.
Post by cootie on Aug 15^th, 2006, 2:19pm

Stress and worry even tho ya aren't aware of it bein THAT bad may be taken a toll effecting yer sleep rite now........my mom has surgery the end of this month and the waiting is DRIVEING her insane.......it's starting to also take a toll on her. With her they will take out some cancer bad areas and wait for lab results to tell her the REST of the story and wether she'll need radiation or whatever. So not knowing ANY of that is enuff to make a person go CRAZY let alone deal with the surgery part and all that jazz. Not knowing the outcome and liveing the fear does not make for a peaceful day or nite Pam

HOPEIN it all will be ok for you.......you should get enuff vibes from here to heal ya up fast and get ya thru it !!!