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

megrayau 06-12-2006 03:40 AM

Hi Debbie,
Just found this thread! I know I am a bit slow! LOL

Did you ever get to the bottom of this health issue?

What about the black belt training, are you still following that path? I didn't realise you were into martila arts to that level. I knew ds was doing well. Did he receive his black belt? I seem to remember hearing about that at some stage.

debknechtel 06-12-2006 04:58 AM

Hi Meg

My test results showed negative for Syringomyelia but we have not been able to find out why my respiratory muscles are weak and not working to full capacity. For now they are monitoring it and if it drops anymore they will aggressively test me for everything under the sun. I think my allergies play into it some. So for now I am just to take it easy.....hmmmmmm easier said than done! As for the martial arts I was going to go back this winter just one night a week to see how I did but with Mike being gone and all the extra running around and stress I put on myself I just could not fit it in. Hopefully I will get back at some point. Ryan is a junior black belt and my son Jamie is about 1 year off of his junior black belt. They can not get an adult black belt till they are 16 and which time they will be retested and evaluated.

Hugs Debbie

Megan_Lindsey 07-09-2007 02:16 PM

Syringomyelia and no health insurance
 
Hello everyone! My name is Megan. I have SM. I'm only 19 years old and I don't have any health insurance for the moment so my best resource is the internet. I'd love to speak with someone who is going through the same thing I am. I'll be checking back for replies as soon as I'm able. As far as questions go, I'm probably asking just about every one in the book. Thanks!!! Megan

debknechtel 07-09-2007 02:25 PM

Hi Megan

Sorry to hear you have been diagnosed with this SM. I don't have it myself but was tested for it. Where on your spine is the cyst??? Did you just find out that you had it or have you known for awhile? I will see if I can find the chairi newsletters I used to get...they had lots of info on it. Do you live in the states...I am not sure how insurance works there....here in Canada most are covered for health coverage.....when the doctors thought I had SM he figured it would be in my upper spine close to the brain and that I would have to have the decompression surgery. I have met a lady on a yahoo group who has had many surgeries from hers. Do you know what treatment they want for you? I am sorry I can't be more help but if you just need a friend I am here. Thinking of you


Hugs debbie

Megan_Lindsey 07-09-2007 02:38 PM

Thanks Debbie. It's in my thoracic spine. T5 through T7. I'm terrified of surgery, but now I'm having trouble breathing. I've known about it for a little over 2 years now. I've had a breast reduction to try and reduce the load on my back, it worked at first but the pain's worsening.

debknechtel 07-09-2007 04:26 PM

Megan so sorry that you ar eknow having trouble breathing....that was one of the reasons they thought I had it too. Have you seen a doctor about the surgery have they walked you through what it entails??? I really feel for you becasue I remembered how scared I was when I started researching SM ...I had never heard of it before that. I have read great stories online though of peole who have had great results from the surgery...they were able to go back to work. Wish I could offer your more insight and info into SM. Hopefully someone who is going through this will drop by and offer some insight for you. thinking of you

Hugs Debbie

Megan_Lindsey 07-12-2007 09:59 AM

Hey debbie. I don't have a doctor right now because I don't have health insurance. My husband is in the process of getting a better job so that I can. But for now we're just trying to keep food on the table for our son. So like I said before, the internet has been my best resource for information about SM. But I'm positive that there isn't a misdiagnosis in my case. The MRI scan was too clear. I just wish I would've found out about it before I had my son. After reading up on some things, I learned that what I did (C-Section) was better than natural labor for someone with SM but (keep in mind) I didn't know that I had it at that point. General anesthesia would have been alot better apparently. It was scary once I realized that I had it and I thought about where they did the spinal block for the c-section... they did it 2 vertebrae down from where my syrinx is located. Pretty scary stuff, huh? I don't even know why I'm talking about that.. I guess I'm just depressed. I'm sorry to blabber on like this.. I'll quit while I'm behind. But thank you. It's nice to have someone to talk to. My husband's fully aware of my condition but I try not to talk about it to him because he has enough on his shoulders right now. So you've been a big help. Thank you!

debknechtel 07-12-2007 10:53 AM

Oh Megan I feel for you right now. Wow that is pretty scary when you think about it but obviously you were in gods hands through the birth of your son. I am sure he will be a shining light for you through all this.......how old is he. I really wish I had more info for you but I don't mind being a sounding board for you any time. You know sometimes just writing it all down helps to lift some of the pressure and stress so don't feel like you are saying too much. I know this site has helped me many times get over hurdles(my hubby is military and goes overseas ) Can I ask you what lead them to diagnose you with SM. When they first tested me it was because of weak respiratory muscles, high arches and no sensitivity to hot and cold water. I am going away on holidays for 2 weeks so if I don't respond that is why........


Hugs Debbie

Megan_Lindsey 07-12-2007 11:46 AM

My son just turned 3. We've been married for 4 years.. He's 21 and I'm 19. (We started early, I know.) But we don't regret it at all. He's finished with college and I'm going back as soon as my son's in school. We currently own our own business while he works for a different company during the day. You see, I'm very active and this diagnosis is well... not the best for someone like me. Technically I'm not even allowed to pick up my son but God knows that's just impossible. To answer your question about how I was diagnosed, I was having ALOT of pain/numbness/tingling in my back/feet/shoulders and my neck. We thought it was just because I had a large chest and I'm not very tall either. But they did a scan anyway. *My mom insisted on it... she's been an RN for 25 years* So they did 3 with dye.. I gave my mom permission to look up the results because she works at the hospital where I had it done. In the past nothing had shown up and I've always given her permission to look them up and she always got back to me pretty quickly.. when a little over a week went by and she didn't mention anything, I got scared. As it turned out, she had never heard of it before either and wanted to do more research before she told me. My little sister leaked. Haha.. she wasn't supposed to tell until my mom had all the info she wanted. So, needless to say I looked it up myself without saying a word to my mom and suffeciently scared the crap out of myself. ANYWAY! When I finally went to go to my appointment so the dr. could tell me what he knew about it, he told me the scan came back negative. I was so angry at the time that, now I can't even remember what I said to him... but I know it wasn't nice. I've never seen somebody so incompotent as to not even read the results before assuming that somebody's a hypocondriac. Needless to say, I haven't seen him since. But the diagnosis helped me to get several signatures from neurologists urging my insurance (I actually had some at the time) to pay for a breast reduction. I had that in April of 2005. The pain was dramatically reduced at first but now it's back and worse than before. Did you ever find out what's wrong with you? I mean, since they ruled out SM.

debknechtel 07-12-2007 02:37 PM

Megan no they never did find out what is causing all my problems...frustrating to say the least...I seem to go in cycles where it is worse than others. I too get lots of pain and tingling in my shoulders, hands and feet. I get lots of migrains also. Don't you hate it when a doctor says you are just over reacting......once when I was having chest like pains and passing out the doctors kept telling me I was having panic attacks. When I finally got him to run tests I had a hiatus hernia and was anemic with folic acid. Boy was I bad some simple meds helped to aleviate the problem. I think in some ways I can understand how scared you are....when they first thought I might have it my hubby and I were already discussing how life would change and how my quality of life could diminish. The doctors were so sure that was what I had they had me in for an MRI within a few days...in Canada it can take months. I was terrified after scouring the internet for info. I have seen lots os peole though who have had surgery and have had very good quality of life after although the chance of the cyst coming back is always a chance.
Three years old is such a cute age but also very demanding. I can see how it is impossible to not pick him up. Your plans to return to school are wonderful ....what do you plan on taking.....Sounds like for your age you have it all together...not sure I did at that age....LOL Now that I have hit the 40's I wonder if I ever got it together!
Can I ask if you had regular MRI's befoe the dye ones???? They only did a regular scan on me....at that they had to drug me and pput a cloth over my face...don't like small spaces.

Well need to go get supper and finish packing ...we leave on Sat to the east coast.....we are driving from Ontario


Hugs debbie


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