saw the Cleveland Clinic NS

[irishred795]

Saw the neurosurgeon yesterday. My husband said we were leaving way too early, but I left at that time anyway. It was a really good thing because I had to stop to get sick and wait for the nausea to go away. I drank some watered down tea and ate some pretzels. My mom came with me which was also extremely helpful since she could come into the rest stop restroom with me without getting arrested, LOL. I am having a CSF flow study on Wednesday because he is concerned with the blindness that happens when my head is in certain positions. He said that I definitely shouldn't have surgery on the herniated discs until I try other avenues of treatment. The other neurosurgeon I saw wanted to do surgery the next day.  He gave the name of another neurologist to see and a spine center doctor he feels should be able to help me get a diagnosis. I'm able to the flow study done where I live so I don't have to drive another 2 1/2 hours (well 5 hours to get there and back home) to get that done and he gave me his address and told me to FedEx the flow study results to him because he saw that I had driven a bit to see him, so I thought that was very nice also. He did exactly what I was expecting him to do, so I'm pretty happy. Okay I'm frustrated too because I just have to get better really soon for my little guys and I can't do that until they know exactly whats wrong and start treating it. The husband is getting tired of helping and doesn't want others to do it either so I push myself when I know I really shouldn't. Then I end up on the couch vomitting for two days every two weeks. UGH! The NS didn't seem to know why my chest hurts. Te pain starts in the shoulders and Vees to the center of my chest, the does an upside down V to the bottom of my rib cage. Also have bad abdominal pain. Like I said I just gotta get better real soon:)

[selmaS]

Hi sorry  about the abbreviations...please see the Health Pages link thread it has a link to the abbreviations we use here!

No worries u r not a dork...we tend to forget the newbies r not up on all the shorthand we use.


And ur DH is typical of most men...and I used to get really bad HA's when my DF came home when I was a kid...if he was mad or upset, I got bad HA's...so what u say about ur DH being in a mood and it affecting u is typical stress, and it will affect u.


Try to look at the way he reacts as just that.....him and something u can not change...the sooner u accept it and expect it the less it will stress u out....took me yrs to figure that out and finally do it, but it does help : )

"selma"

[mikeysmom1995]

Hey there, DH stands for darling husband, and u don't sound like a dork either.
You are so nice to be passing info on to me when you have so much to focus on yourself.
Sounds like you have alot to deal with at home on top of your Chiari. Your hubby will come around, it does take time to accept that somebody u love has a condition that is so life altering.
One of our boys has tethered cord, the other Chiari, and some days are good days for my hub and I in accepting and dealing with the fact  that our kids are not well, and some days it takes all I have to hold back tears in front of them as I am their mom and I need to be strong for them, as they are the ones not well. My hub is the rock for all of us, but he has his moments as well . Sometimes I think that dealing with this has hardened my personality a bit and a bit less tolerant of  other situations around me.  We all deal with things in our own way. DH will come around.
Your mom and sister sound awesome. I am glad that you have them to help u.
I will pray for you and hope that u get some answers soon.
Barb :)

[shanmomof3]

oh sorry DH is Dear Husband, DD is Dear Daughter, and DS is Dear Son. I get so use to using it i forget others may not know them. :)

[irishred795]

By the way, I hate to sound like a dork, but what does DH stand for?

[irishred795]

Yes, he I know he is terrified because (no offense gentleman) but he's supposed to be able to fix anything, but this isn't something he can help me with. I have tried to tell him that I need him to stay calm and that would help me alot and help out around the house and with the kids. He has a quick temper and that seems to aggravate my symptoms. I don't know if that's normal or in my head but when he's upset I feel worse. He had a lot happen all at once. He is 42 now (as of January 21) we got engaged in Feb 05 then found out I was pregnant in April and had to move our Wedding date to July (instead of October). We had Timmy in November of 05 and got pregnant again in March of 06 (while I was breastfeeding and taking the pill religiously). We didn't realize I was pregnant until May. He called his dad in California (we live in Ohio) to tell him on a Friday and we never heard back from him until Matt's brother called on Sunday to tell us he had died.Then his stepmom died in July of lung cancer. His stepdad died in October of lung cancer. Ben was born in December 06. We bought a house in March of 07. So it was a lot of change and responsibility put on him very quickly. He's been attending church with me until I started deteriorating lately, now I need it more than ever and he has avoided it the past couple weeks. All I can do is pray and be patient. We all handle things differently.

[shanmomof3]

I can SO sympathize with you! My DH is having a hard time adjusting or should i say accepting all this too. When my symptoms starting getting bad and i ended up quiting my job he was very supportive and understanding, but he had the misconception that i could go have surgery and everything would go back to "normal" Once he found out it was a life time thing and there was no "cure" he kinda changed but i know its because he's scared and doesn't know how to deal with it. And even though at times he says he thinks its all in my head and he's tired of coming home from work and having to help me in the house ... He has started helping more around the house and makin the kids help me and even though he Hates flying, he's getting on that plane in two weeks and flying to wisconsin with me. So, like selma said just give it time he'll come around. Something i have to make myself stop and think about it is ... I know i'm scared and i dont like the things that are happening to me, but then i look at it from his point of view and realize it has to be even harder because they cant truly understand and there is nothing they can do to "fix it" Good luck dear and just know that there are people here who understand and will listen. (((HUGS))) Shannon

[selmaS]

I am sorry ur DH didn't go, but give it time...I am sure he just doesn't understand and is scare like u, but afraid to admit it.

Well thanks, but I am only sharing what I went thru and I know, ur DH will come around...mine did...so much so he was over protective...if u haven't looked at my journal on my chiari surgery or the pics please do...I have one where he fell asleep on the floor beside my recliner.....

In the very beginning he did not go with me to appointments, once I had a dx...he started going.

Ur mom is just a few yrs older than myself....and I am happy for u that u r so close.Having her and ur sister will give u the strength to move forward even tho ur DH is not on board yet.

"selma"

[irishred795]

Unfortunately my husband didn't go he said his mom had an appt and couldn't watch our boys which turned out to be not true. I told him the night beofre my appt that my mom was afraid to drive because it was supposed to snow in Cleveland and said "If you won't come and drive us she's going to ask my brother-in-law, Scott." He said to go ahead and have him drive us, so thank God for him and bless him he did. He even was extremely cool about stopping for me whenever I need to. And mad me laugh with some jokes. My mom is AWESOME! I'm 32 by the way so she is only 55. She comes over a couple times a week to help around the house and with the boys. She's my mom and my friend. I've told my husband some websites he could look on to get some info but he says no thanks pretty much. I know he's scared so I'm trying to be understanding and my mom and sister have always said my whole life that I have the patience of Job. I knew I could count on you for some words of encouragement and wisdom. Bless you for the support you give to all of us. Words can't express the gratitude I feel in having met you.

[selmaS]

Hi....I am glad u got to an understanding dr that seems intent on getting u some answers.

One thing we all have to learn is how much we can do and how to compensate to get certain things done.....

As for ur DH, I am sure he will come around...he did go with u to ur appointment. And I am sure will continue to accompany u to ur other visits...he will learn what is going on along with u and begin to understand ur limitations.

We feel that our family should understand how we feel when we can't get a dr to, .....so be patient, and I do know it is  not easy.

I wish we could say  what it might be, all I can say is keep on pushing to get teh answers and know u r not alone.

"selma"