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Mattrf
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I am a bit freaked out.
« on: Aug 5th, 2006, 1:05pm » |
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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
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There is no stronger a person then one who can deal with brain pain and still function.
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Charlotte
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Re: I am a bit freaked out.
« Reply #1 on: Aug 5th, 2006, 1:26pm » |
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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
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LeLimey
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Re: I am a bit freaked out.
« Reply #2 on: Aug 5th, 2006, 2:22pm » |
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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
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PollyPocket
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Re: I am a bit freaked out.
« Reply #3 on: Aug 5th, 2006, 5:42pm » |
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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
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
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maffumatt
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Re: I am a bit freaked out.
« Reply #4 on: Aug 5th, 2006, 6:05pm » |
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Wishing you well Matt.
Matt
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Jonny
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Re: I am a bit freaked out.
« Reply #5 on: Aug 5th, 2006, 6:29pm » |
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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 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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DonnaHar
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Re: I am a bit freaked out.
« Reply #6 on: Aug 5th, 2006, 9:20pm » |
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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.
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George_J
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Re: I am a bit freaked out.
« Reply #7 on: Aug 5th, 2006, 9:29pm » |
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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
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Ah! The foreigners put on such airs
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It all comes to light in the sheer
Debonair.
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Paul98
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Re: I am a bit freaked out.
« Reply #8 on: Aug 5th, 2006, 9:58pm » |
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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.
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Charlie
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Re: I am a bit freaked out.
« Reply #9 on: Aug 5th, 2006, 10:22pm » |
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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. 
Charlie
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kevinpix
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Re: I am a bit freaked out.
« Reply #10 on: Aug 5th, 2006, 11:42pm » |
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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!
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Jasmyn
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Re: I am a bit freaked out.
« Reply #11 on: Aug 6th, 2006, 10:46am » |
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Vibes to you Matt.
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Mattrf
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Re: I am a bit freaked out.
« Reply #12 on: Aug 6th, 2006, 9:54pm » |
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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.
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There is no stronger a person then one who can deal with brain pain and still function.
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Ree
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Re: I am a bit freaked out.
« Reply #13 on: Aug 6th, 2006, 10:19pm » |
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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
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Cathi04
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Re: I am a bit freaked out.
« Reply #14 on: Aug 7th, 2006, 12:10am » |
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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
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Mattrf
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Re: I am a bit freaked out.
« Reply #15 on: Aug 8th, 2006, 3:51pm » |
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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
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There is no stronger a person then one who can deal with brain pain and still function.
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zwibbs/Scott
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Re: I am a bit freaked out.
« Reply #16 on: Aug 8th, 2006, 4:42pm » |
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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
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JeffB
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Re: I am a bit freaked out.
« Reply #17 on: Aug 8th, 2006, 5:08pm » |
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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!
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Linda_Howell
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Re: I am a bit freaked out.
« Reply #18 on: Aug 8th, 2006, 5:32pm » |
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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
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Pinkfloyd
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Re: I am a bit freaked out.
« Reply #19 on: Aug 8th, 2006, 5:37pm » |
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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.
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LadyLuv
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Re: I am a bit freaked out.
« Reply #20 on: Aug 8th, 2006, 5:51pm » |
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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
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Mattrf
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Re: I am a bit freaked out.
« Reply #21 on: Aug 9th, 2006, 10:42am » |
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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
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There is no stronger a person then one who can deal with brain pain and still function.
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LeLimey
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Re: I am a bit freaked out.
« Reply #22 on: Aug 9th, 2006, 4:27pm » |
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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
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Mattrf
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Re: I am a bit freaked out.
« Reply #23 on: Aug 11th, 2006, 3:11pm » |
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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
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alchemy
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Re: I am a bit freaked out.
« Reply #24 on: Aug 11th, 2006, 3:20pm » |
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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
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| « Last Edit: Aug 11th, 2006, 3:23pm by alchemy » |
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