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Posted 7/28/2005 7:51 AM (GMT 0)
Teri..

Thanks for the welcome to this forum and I'm sorry I haven't responded to your replies but things have been pretty crazy with all the "hurry up and wait for the results"
The CTA is a cat scan of the arteries; I have an aneurysm next the pituitary gland in the cavernous sinus area
they inject a higher dose of the "Liquid Heat" as I call it!! skull I ended up waiting for 2 weeks for results, it confirmed that the aneurysm was still there! and I was told that there was going to be a Neruo convention in August and that my case would be brought before the Neruologists at this convention and that if there were any new finfings I would receive a call from them.

So more or less it's inoperable! at this point... so for now, I'm living from day to day , taking nothing for granted and praying that the good lord takes this thing I call Jack away! ( I had called it George but someone from another forum told me that Jack would be a better name ("Hit the Jack and don't you come back") so now I hum the tune all the time. :-) you have to keep on living, we all have an appointment scheduled and theres nothing we can do about it. I know I could walk out of my home and be hit by lighting or something else, but I think it's harder knowing that any given moment it could be over. afraid to go to sleep sometimes thinking that you may not wake up... every headache you have is this it.. it's enough to drive a person insane with the worry... but I tell myself everyday that I will make the most of what I have, my family and friends and my faith and that I will get through this just fine... I want to be around to see my grandchildren
( that better be a while since my boys are 15 and 11 next month tongue ) I want to be able to spoil them and send them home to drive their parents crazy from the sugar highs they got at grandma and grandpa's yeah

Take nothing for granted and live like today is your last... Kiss your children and tell them how much you love them... and keep your faith...

Take care
rrettakay

Post Edited By Moderator (Teri16) : 7/30/2005 11:58:13 AM (GMT-6)

Posted 7/28/2005 2:11 PM (GMT 0)

I will be praying for you too and  yuo are right we all shuold not take a moment g=for granted and live like we are dying do wahht we wanted to f=do. I lost my brother in law in 1999 to brain cnacer they gave him 6 months and he lived 5 years and he had the attitude yuo had and not take a moment for granted. Gosh I really am hopeing and praying for you too witht he outcome of this. Yes yuo can say to thisa thing hit the raod jacka nd donot come back nomore no more so hit the raod jack.Lets all pray that her Jack will hit the road.

Heidi

Posted 7/28/2005 10:58 PM (GMT 0)
Hi Mettakay. It's nice to meet you and glad you have come to the board.

I'm with Heidi. I'll keep you in my thoughts and prayers that the convention in August will bring something that will help you. You are one brave human being!

Hugs, Kathy
Posted 7/29/2005 12:40 AM (GMT 0)
rrettakay!  I'm glad you came back - I wondered what had happened to you! yeah I hope that they will be able to help you!!

 

Keep your thoughts as positive as you can and come here to vent anytime that you need to - we all share a common goal here.  To listen, share, support and applaud with happiness when someone gets better!!

 

Hugs, Teri tongue

Posted 7/29/2005 3:07 PM (GMT 0)

Almost August nd hopefully you will get good news we are with you

Heidi

Posted 7/30/2005 4:22 AM (GMT 0)
thanks....

I'm not sure that I would call myself brave.... because I feel like a frieght train has hit me... but I have to keep pushing myself by kicking my self in the rear sometimes or have a friend do it...

I'm sure I could sit here and tell you all that I feel like my world is crumbing around me and that I feel hopeless... because sometimes it feels that way!!!! confused I do have my moments believe me sad
But I try my best to look at it differently... from what the doctors have told me so far it's been there since 2003... ok I now have to accept the fact that the other doctors failed me by not making the dx then. now it's been 2 years that Jack has been with me and I never knew about it. over the past year my job was so stressful I can't believe it didn't blow then!!! but I'm no longer working thank goodness because I couldn't work right now if I had too!!!!

so I guess I can either fall into it and let myself go crazy or I can fight like Hell to be happy with what I have and where I'm at right now...

I have been so lucky to have found HW I have made so many new friends yeah and I know that I could not get through this nightmare without the support that I have received from each of you...

Just when you think your world is falling part you hear about someone like your brother in law's battle and you think maybe you don't have it so bad... I grew up believing that the good lord only gives us what he knows we can handle... so I have to accept it and keep believing that I can handle this because I have to much in my life not too!!!!
I'm sorry for your loss, but I'm happy to hear that he was strong enough to fight it back for the years that he did. He handled it! and that's what we all have to do... through faith, family,friends, laughter, love and a lot of tears.... we can handle anything....

sorry I sound so mushy.... but I know I can come here to HW and share my feelings without being judged... even though I feel like I'm going crazy sometimes tongue

thanks for hearing me out... and giving me the support that I really need at this time.


P.S the only reason I changed the subject was, this thread came up as a link under cavernous aneurysms!!! I didn't want it out there for the whole world to see. ( they have to come here to find out how crazy I am) yeah tongue yeah smurf :-) is there a way to remove it from being a link to my post ?????

Thanks again for everything!!!!
Posted 7/30/2005 2:12 PM (GMT 0)
YOu are not crazy to feel this way at all.It is perfectly ormal for your emotione to be like a Roller Coaster anmd be sad then happy. I have felt that way this past month and week too. But yes all of us are here for you keep a fighting spirit and my song is Live like yuo are dying do what yu want to do make memories etc and like yuo The Lord does h give us what we can handle maybe He is leting others see what yuo are going through so you can offer them support, have yu've thought abuot ti that way.

so please kep us updated  and only a moderator can edit yuor posts so that wuold be Teri or Kathylyn e-mail them and maybe they can help out ok.

Best wishes coming yuor way

Hugs Heidi smurf

Posted 7/30/2005 6:25 PM (GMT 0)
Hi rrettakay! tongue

 

I fixed the title and hope it's okay?! :-)

 

Venting frustrations in a forum like this can be a very healthy way to rid some of the anxiety that seems to come with these types of illness.  As Heidi, stated, it's very normal to feel these emotions and I hope you will continue to share with us!!

 

Hugs, Teri tongue

 

Posted 7/31/2005 6:39 PM (GMT 0)
rrettakay, may the Good Lord be with you through all of this!  Don't forget miracles DO happen and I am praying for that for you!  It is so very helpful to be able to post here and get the support that helps so much!  God Bless and hugs, Pat

Post Edited (Patoolla) : 7/31/2005 12:45:41 PM (GMT-6)

Posted 8/3/2005 5:30 PM (GMT 0)
Special stents (stent-grafts) are also used to treat aneurysms, including abdominal aortic aneurysms. In a stent–graft procedure, the physician prevents blood from flowing through the aneurysm by placing one stent just above the aneurysm and a second stent just below the aneurysm. The two stents are connected by a patch of synthetic material (a graft), which provides a channel for blood to flow without entering the aneurysm.

Something to ask the doc about.....Dave
Posted 8/3/2005 6:31 PM (GMT 0)
Welcome dfox6 yeah

 

Thanks for the info! - perhaps you could share your experience with Heart Disease.

 

Hugs, Teri tongue

Posted 8/3/2005 7:41 PM (GMT 0)
Stent in LAD in Oct. 2002. Doing great!

Posted 8/4/2005 2:18 AM (GMT 0)
dfox6, I'm really glad to hear that!

Take care.

Hugs, Teri tongue

Posted 8/7/2005 5:15 PM (GMT 0)
Sorry everyone I haven't been around much lately.... but things have been pretty crazy for me.

I went to see GP last week for a recheck on meds and tell her about the Pain Management doc wanting to change some of my meds that my other doc's have me taking. while talking to her I asked if she had a copy of the results from my CTA of my brain, she didn't so she phoned and had them fax them to her. when she started reading them to me I thought I would fall out of my seat!!!
Not was JACK still there BUT... it had increased from 6 mm to 9 mm in 1 month I fell apart on her I couldn't believe that the Neruo's Nurse didn't tell me that when she called with my results a few weeks ago!!! my GP wants me to start taking Cymbalta, I was wondering if anyone has taken this before??? how well does it work for you?
My GP is going to give the Neruo until the 15th to get back with me on news from the "Big Neruo Conference" on the 11th if I don't hear from them she is going to call herself. and if she feels like they really aren't going to anything. she is sending me to the Mayo Clinic ASAP. I'm thankful that my GP is staying on top of this because I feel like the Neruo's have just sent me home to die. I'm not ready to give up! I want to do everything I can. I have read where they have operated on these types of aneruysms. so the GP wants me to go the Mayo Clinic if this Neruo doesn't have anything by the 15th

I'm just a basket of nerves right now!!! I did apply for disability last week so I'm hoping that goes through. in the mean time I'm going to another MS specialist on the 8th of Sept. I'm ready to give up on trying to find out if all of my symptoms are MS related. right now, the Neruo's make feel like " what's the point" so I'm not sure if I'll go or not.

JACK has pretty much taken total control of my life No matter how much I try to stay positive it's always there...

sorry for the gloomy post but I wanted to share what I know so far..

I hope you are all doing well.. my thoughts and prayers are with you all...

I'll try to post more often and let you know what I find out...
Posted 8/7/2005 5:34 PM (GMT 0)
(((rrettakay))),

I am so very sorry to hear that this occurred and that you found out this way!!  sad I would have thought that they would have you come in for an appt. and explain it to you in person! 

Please keep in touch with us and let us know what you decide re Mayo?!  And remember we're here whenever you'd like to talk.

Big Hugs, Teri tongue

Posted 8/9/2005 3:03 AM (GMT 0)
rrettakay,

 

I was thinking of you and wondering how you are doing today?!  Wishing you all the very best!

 

Hugs, Teri

Posted 8/9/2005 5:29 AM (GMT 0)
hi rrettakay,
just wanted you to know i went to mayo in june. it's not hard to set up. i went to the one in scottsdale, which is considered just as good as the one in rochester (that is, if you can take phoenix in the summer!). but i recommend it HIGHLY. if you have insurance, check it out, but mayo is really good about accepting all insurances and i had very little out of pocket to pay - AND many hotels etc, car rental etc have special mayo rates. and you don't have to coordinate with your docs. you just call and make an appointment and tell them your general probs. they will have you bring whatever records of tests, etc. that you have so that they don't repeat and can start out quicker. plan on spending 10 days. i know that's so hard if you work and have family.

but let me reassure you it's a good choice. i have felt there is so little control, and that i had little hope, and mayo helped me so much with that. now i KNOW there are things that can be done, that i can be doing too to help myself, even if it's just emotional help.

i encourage you strongly to go to a mayo clinic - dunno where you are but there's one in minnesota, phoenix, and in florida.

libby
Posted 8/9/2005 8:12 PM (GMT 0)

Please check in and let us know how you are doing, and let us know which Mayo you will be at so we can be in yur pockets where ever yuo got hroughout Mayo i know the one  in Fla is 60 miles from us near the beach but it is so pretty and quiet their too. My brother-in-law was their and is such anice hospitial I know a couple oif the nurses who work on trials with stents  and other things too but best of luck and please  check in. you can vent anytime you want.

Heidi

Posted 8/10/2005 6:29 AM (GMT 0)
Thanks everyone... I live in Indiana so the in Minnesota is the one I would have to go to. and that's still a good distance for me. 10 DAYS!! WOW I was thinking more like 3 days... I don't think I could afford to go for that lenght of time.... with the boys in school and the hubby working all the time. but I'm going to check in on it. I checked out the web site and it looks like they have some pretty good things going on there.
I'll let you know what I decide to do....
Posted 8/10/2005 2:00 PM (GMT 0)

MN one is great I know they have a great heart health center run by Susan Hayes she is a sweetheart I have met her in person.PLuse one of my petfriends sister worlks their and it is about 5 blocks from where she lives and she loves it she goes their all the time. Please go and only 10 days away now it is 9 days away.

I understand how yuo feel witht he kids in school and hubby works  Theycan make it on their own for a few dy's they want their mom around longer and so does yuor hubby he wants his wife areound longer so please go and let us know what happens we are thinking of yu. also please come into chat this Thursday at 8pm CST time ok.

HEidi

Posted 8/10/2005 10:20 PM (GMT 0)

Thinking of you, rrettakay, and hoping you will find some help - as Heidi said, please keep us posted and let us know how you are doing!!

Hugs, Teri tongue

Posted 8/11/2005 4:04 AM (GMT 0)
Sorry I missed the chat time, I would love to have talked to all of you... is this your normal chat time??

I should know something by Monday if the Neruo conference in Indianapolis came up with any answers for the location and type of aneursym I have. Now it's a hurry up and wait game that I have to play in, But I'm pretty sure my GP will be sending me to Mayo. I guess when you said the stay could be 10 days I was thinking it would be at most 3 days. I know that my Huband will be going with me, he goes to all of my appts and tests. He is my rock! but he just doesn't like talking about it, I know it's because it scares him.
But it helps me to talk about it... hopefully I'll hear from the Neruo in Indy soon. I'll let you know what I find out.

Take care...
Posted 8/11/2005 4:47 AM (GMT 0)
rrettakay,
the other "best" place to go is the cleveland clinic. that's their speciality, hearts. maybe that wouldn't be such a long stay, and i heard they're as nice about getting into as the mayo.
the stay at mayo depends on what tests they would do. if you've had tests done in the past year or so then they don't have to repeat and that takes less time. i went during the week and my boyfriend came and joined me on the weekends. it was tough, but worth it to me to "bite the bullet" and spend that amount of time away to help get well. but cleveland might be closer for you?
libby
Posted 8/11/2005 9:07 PM (GMT 0)
Hi rrettakay!  You asked about the chat time, and

Yes, we try and have it every Thursday night from

8 PM to 9 PM CST.  yeah Though we just started these up recently, tonight's topic is about healthy foods and we've asked that everyone brings along 3 healthy food ideas with them - even if they're repetitive. lol

 

Re hospitals...it seems we've turned some of our posts into advertisements for certain hospitals and that is certainly not our intent here - wherever your Dr. feels is the best place for you to go, he has only your best interest at heart!!

 

Thinking of you and wishing you only the best!!

 

Hugs, Teri tongue

Posted 8/24/2005 6:18 AM (GMT 0)
Just dropping in to say hello to everyone... things have been pretty crazy for me lately.

I heard back from the neruo in Indy last Thursday and there isn't anything that can be done... it was pretty hard to take in sad
I did however go and see my GP and she really wants me to go to the Cleveland Clinic so I'm waiting on her now. I did sign up for disability and they are sending me for a mental exam!!
I feel real sorry for that poor soul! eyes they won't know what to do with me! maybe lock me and throw away the key, would'nt that be my luck! I do go for an appt for the (9 lesions) possible MS dx on Sept 8th. I'm hoping that they can help with some of these symptoms I have and make the right dx this time. No matter which one of them it is.

I just wanted to drop in and say Hi and let you all know that I was thinking about all of you... and to say thanks for the support you have given to me. I hoping to be online more real soon but right now it's hard to say when that will be. I'll keep trying to check in and see how everyone is doing.
you're all in my thoughts and prayers!

(((((HUGS TO ALL)))))
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