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-   -   Syringomyelia (https://www.familycorner.com/forums/health-chronic-diseases/13438-syringomyelia.html)

Megan_Lindsey 07-12-2007 08:03 PM

You should probably request to get one with dye. And not just in your neck or in any isolated area for that matter. Mine's right around where my bra strap goes. And for now it's relatively small... but anything in your spine's going to hurt like hell. Actually my neurologist (when I had one) said that it's 2.3cm and I thought that seemed minescule and he said it's actually a pretty decent size for my age. He said it should be alot smaller. But that was about 2 years ago and I'm supposed to get an MRI every year to monitor it. I'm 2 overdue. Anyway, back to your question.. I had SEVERAL MRI's over the years and at least 4 came back neg. I think it was the dye that made the difference. Just follow your gut.. everybody made me feel like I was psychotic.. and that it was all in my head. In a way, I was relieved to prove that I wasn't crazy. But it's weird that you said that you had started talking to your husband about how you thought your life was going to change. I've been talking to my husband about it too... He's very passive-agressive though... I tell him what could happen and he just puts his arm around me, pouts and says no. I asked him if he would leave if I was in a wheelchair and couldn't care for the house, our son or anything else anymore.. and he said of course not. But nobody really knows until they're in a situation. He's an awesome man... A good christian man. But everybody has limits.. I think I'll be fine if I was in a chair.. as long as it was only para and not quadrapalegic. I couldn't handle quad. I've had a million scenarios running through my mind... so I tend to babble alot when it comes to SM. And I'm on lortab right now... I managed to twist my back because of my dog (long story) I got this weird rush of hot down my back and I couldn't get off the ground for a little while... then I kept gettin spasms after that.. then to top it all off; my son jumped right onto my back tonight when I was tryin to get him to sleep. Needless to say... I'm hurtin. This is going to sound strange but is there any chance you have a MySpace account? I just got back from Hawaii and I have some georgous pictures on mine. I live in the states btw. Florida. I hope you have fun on your trip but I also hope to talk to you before you leave. It's so nice to have some adult conversation without feeling like you're bringing somebody down with your problems. I'm sure you know what I mean.

debknechtel 07-13-2007 05:13 AM

Ouch Megan....Take it easy over the next few days. I know I was doing martial arts when they first decided to test me and I had to quit because the risk of injury would be too great. I have yet to go back....maybe someday. I go for my yearly physical in 2 weeks so will see what she has to say then.I am overdue seeing her too...life got away from me with hubby being in Afghanistan and after he came home it was a whirlwind too readjusting.
We were in florida a year ago May.....we actually met hubby there on his leave from overseas. I met two ladies from FC while there. Where in florida do you live. I live in Ontario Canada...about 1 1/2 hours west of Ottawa canadas capitol city.....hubby is military and I run a home daycare. We have 3 kids two boys 13 and 10 and one daughter who is 9. they keep us very busy.
Megan did you know we have a prayer thread here on site? The girls are wonderful and you can just ask for prayer or you can tell them why....they will include you in prayers either way. This site really is one of the best I have found on the web. Everyone is very genuine and caring. I have talked to many on the phone and I have been lucky to meet 4 of the girls here...2 in florida and 2 in New York. It was like meeting old friends. Everyone here has been so supportive to me through my medical tests and when my hubby was overseas. I hope you will check out some other areas on the site.

To see my pictures you need to go to the Gallery to view them.

I will pop in later today before shutting down the computer for the 2 weeks.


Take it easy today and blab away anytime.....I am sure it will help get it off your mind some. Be patient with your hubby...he is probably just very scared and sometimes facing the reality of what could be is just too hard. Keep him informed on what the doctors say and how you are feeling. don't leave him out and ask him what he is feeling...maybe he is just feeling the pressure. Sending lots of hugs your way


Hugs Debbie

Megan_Lindsey 07-13-2007 10:01 AM

Hey.. I'm not going to say much today. I'm really tired... My equilibrium's messed up for some reason... And I didn't fall asleep last night until about 4 am. I threw up with no warning... it was weird. I just twisted at the waist to shut my bedroom door and it came up. My mom thinks I pinched a nerve and it jerked my stomach. I'm just really tired. But I live in Jacksonville, FL. It's on the east coast... pretty close to Georgia. Anyway, have fun on your trip. I'll be waiting to see when you get back.

debknechtel 07-13-2007 11:13 AM

Megan sorry to hear you are having a rough day.Hope that is all it is....if it gets any worse make sure you get it checked. I get like that with my migrains.....I have to take gravol with my meds or the world feels like it is spinning. no fun when you have a house full of kids.

Stopped by and saw your pictures...beautiful there...was it a special trip. You ahve a beautiful family.

Take care......see you at the end of the month


Hugs debbie

debknechtel 10-03-2007 05:29 AM

Megan how are things going???? I had tried to get a hold of you on my space. Hope you are doing well and just busy...think of you often.


Hugs debbie

Megan_Lindsey 10-03-2007 07:21 PM

Hey Debbie.
I've been alright. I saw that you had tried to get a hold of me on myspace but I was really busy then too and I had forgotten about it. I'm sorry :<

I just receintly got my MRI done. They're sending me to see a neurosurgeon.

I guess it's just sit back and wait now.
They have me on some pretty heavy painkillers now though.. it's not something I'm too comfortable with, especially because they only take the edge off of the pain.

But how have you been?

debknechtel 10-04-2007 05:02 AM

Hey there....don't be sorry I was just worried about you. When do you get your results??? Waht are they checking for this time???? Sorry about the pain killers that must be tough and that they don't ease the pain. Sorry you are going through that. I will be keeping you in my thoughts and prayers . hows your little guy doing??

Things are going okay here. I am headed home to vancouver Island next Thursday to stay with my mom(alzheimers) for 11 days. should be a quiet time. when I get home I am going for surgery to repair my prolapsed bladder nov 2. Still waiting for a bunch of tests to come back, i have terrible pain in my middle back around the bra line on my left side..it comes and goes. so not sure what is going on there. they changed some of my meds so will see.

It was great to hear from you......

Hugs debbie

Megan_Lindsey 10-04-2007 09:52 AM

I'm sorry to hear about your mother.. and your bladder. That really sucks! (for lack of a better term. LoL.. sorry, I'm still only 20)

But I can kind of relate. I've had an increased urge (but not uncontrolable) to use the bathroom and they think it's from the syrinx.

I'm actually about to leave to head over to UF & Shands to get my scan on CD-ROM.

It's still for the same thing.. the SM. It's just that my symptoms have worsened... pretty badly and they want me to consider surgery.

What they have me on is stronger than morphine.. stronger than oxycotin and it still barely takes the edge off... it's retarted!!

It just makes me tired.

But check out this website. You may have already heard of it but I just found it a few weeks ago.

http://www.thesmfoundation.org/

debknechtel 10-04-2007 10:10 AM

Megan wow sorry that has to be hard on that strong a pain killer and it does not take the pain away...I would be lost.....a gravol tablet knocks me out. How are you doing that and taking care of your son???
When will you know if you will be going to surgery???? One good thing is you are young so have youth to help you get through recovery easier. What type of surgery would they do....a decompression surgery?????? soory if I am asking to many questions.......I would just love to see you pain free.......keep me posted on how things go and what you decide....how does hubby feel about it??? Is your family being supportive??? Wish I lived closer and could give you a hand with things.

Thanks for the website......I had not seen it before...will pass on to anouther online friend who has a chiari....and has had 9 brain surgeries.....she is such a positive spirit.

I may still have access to a computer while I am away so will pop in to see what you are up to and how things are going.

Take care of yourself

Hugs debbie

Megan_Lindsey 10-13-2007 01:04 PM

Hey Deb :>
I had to post a quick reply so I could remember all of your questions!! LoL

They actually don't knock me out unless I'm already tired.. so I guess that's a good thing. That's how I'm able to take care of him while on them. I'm on dilaudid, soma, and nurotin. I still don't have a clue about surgery. My appointment to see the Neurologist (they changed it because I'm experiencing neuropathy.. they said a Neurologist would be better for that) is on Nov. 5th. But if I do decide to do surgery, it would be to drain the cyst. I found out that I have syringohydromyelia. Which is apparently worse.. and very different. I have a picture of my MRI scan on my MySpace page, if you'd like to take a look.
My husband's being as supportive as possible.. but I think he's getting tired of all the hospital/doctor visits; as am I.

My family's in PA for the most part.. but my mom tries her best. I'm sorry for your friend. Tell her that I wish her well :>

It's scary... I couldn't imagine having a Chairi.

You take care of yourself too :>
Meg :>


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