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debknechtel 12-17-2004 02:24 PM

Syringomyelia
 
Hi there

My internest just told me today that he is 90 % sure this is what I have. I have looked it up on line and found info but I was wondering if their are any others who have this disorder.

Syringomyelia

SM is a chronic progressive disease of the nervous system. It is less common than multiple sclerosis, although it does have certain similarities. For instance, it may show itself in early adult life, and it affects both sensation and muscle power. It is sometimes spasmodic in it's deterioration, the precise clinical course can not be forecast, and it's cause or causes are largely unknown.

In this disease a cavity or syrinx develops within the spinal cord and sometimes the lower part of the brain. This cavity usually connects with the ventricles and subarachnoid space, fluid spaces within and around the brain. Normally, the pressure changes in the fluid which occur on coughing, sneezing, straining, or even the minute changes occurring with the arterial pulse are distributed and damped down within the system without damage resulting.

In Syringomyelia, however, there is often obstruction to pathways in the fluid spaces and this may occur as a result of congenital abnormalities of the brain, previous injury to the head (eg. difficult birth), spinal injuries, or inflammation. It occurs in some paraplegics or quadriplegics, or in a few cases, spinal or brain tumours.

The result is that the pressure fluctuations create a fluid-filled cyst which gradually extends downward through the spinal cord and up into the brain, expanding over time. Because of the limited amount of room available in the cord, this expansion results in it's gradual destruction from the inside out, usually beginning with that part concerned with pain and temperature sensation in the upper limbs or the nerve fibres to the legs. In the end stages of a severely affected case, the cord may appear as a huge cyst with, in places, only a tiny remnant of the original tissue as a thin superficial layer. This progression may take several decades and the disease has a tendency to arrest at any stage.

The earliest signs of the disease can occur in childhood up to the sixties, but is more common in early adult life. The onset may be painless injuries to the hands (eg. burns) which are unnoticed until quite severe. This may progress to weakness of the arms, stiffness and weakness in the legs, deformities of the spine, and involvement of the lower part of the brain, resulting in swallowing and breathing difficulties. Because the nerves supplying joints, especially the shoulders, are often damaged, degeneration of these joints occurs which in about half the cases is extremely painful. Sometimes the initial symptoms are of weakness or stiffness.

Immobility is a problem and can lead to pressure sores, thrombosis in the leg, veins, chest infections, joint stiffness, and thinning of the bones. More disabling still may be the frustration that the sufferer experiences with an active mind in a progressively less active body. Difficulty with breathing and swallowing can be worrying. Because of the progression in the course of the disease, patients may become depressed and require treatment for this.

Hugs Debbie

janet 12-20-2004 03:40 AM

Deb, My prayers are with you dear friend. I pray that Our Father will heal you and restore you to your former healthy self.

God Bless,
janet:heart:

debknechtel 12-20-2004 04:06 AM

Janet

thanks so much for your concern and prayers.....it really means alot to me right now. It is hard with my family being 3000 miles away to cope with being ill.

hugs debbie

Lifestar 12-20-2004 05:44 AM

Deb, I'm sorry to hear that they have found this diagnosis.. But at least you know what you are dealing with..

Do you by any chance have a diagnosis of Arnold-Chiari Malformation?

This is what my older DD has, (ACM-type 1) and we have to have MRI's every year to check for syrinx. So far she has none..

There is surgery to relieve the syrinx that develop in ACM..and improve the flow of spinal fluid, relieving the obstruction and many of the neuro symptoms. There are some Dr's out there doing the decompression surgeries.

What did your Dr say caused your syrinx to develop? I also have done a lot of research on syringomyelia.. but only in it's relation to ACM.

I'm praying for you and I hope you can get some more answers.. and hopefully a cure...

debknechtel 12-20-2004 05:51 AM

Hi Val

I won't know for sure till I have the MRI done. I have read online that some have actually both.

I have lost my cornea reflex in my left eye, I have loss of bladder control, I have weakness in my respiratory muscles, I am left side weak, I have no felling of heat on my left foot and calf or left fingers, same with cold., I have headaches, curved spine, high arches and a few others that are signs of this disorder.

He thinks it may be a congenital deffect with me and that the cyst would be in my upper spine, neck or head area.

Thanks for all the info and concerns

Hugs
Debbie

Lifestar 01-06-2005 04:47 AM

Hello deb,

How are you feeling?

I hope things are better with you and you are getting some relief from treatment and answers from testing...

I wanted to let you know I'm still keepingyou in my prayers, and thinking of you.

Val

debknechtel 01-06-2005 04:53 AM

Val

Thanks for your prayers and concerns they are very much appreciated right now.

I go for my MRI this coming Monday, Jan 10 and I should have the results in 10 -14 days to know for sure if this is what i have or if it is something else. I will let you know when I find out anything. I found a great webpage with info on Syringmyelia and Arnold Chiari Syndrome

http://www.chiari-syringo-news.org/

They have some interesting news articles and fact sheets.

Thanks again

Hugs
Debbie

Lifestar 01-30-2005 08:48 AM

Deb, Any news? I've been waiting to hear what the results were...

When is your next apointment? And How are you holding up? ((( huggs))) Val

debknechtel 01-30-2005 04:47 PM

Hey there Val

I find out this week. I go to see the doctor on Wed. I am actually doing pretty good. I am trying to stay very positive and just wait to hear what he has to say. I have an appt with the neurologist on Mar 9 too address the breathing issues and to see exactly how bad the damage is to me respiratory muscles and if it can be reversed.

Thanks for asking and thinking of me, it means a lot!!!!:hearts:


Hugs Debbie

Lifestar 01-30-2005 05:05 PM

Wow Deb, I give you credit for having so much patience. I'll look forward to hearing what you have to share on Wednesday, if you are up to it.

I'll be keeping you in my prayers ( that goes unsaid, friend) ...

Is it because of Canaada's medical system that it takes so long to see your doctors? It just seems so awfully long to wait!

((( huggs again)))

Val

debknechtel 01-30-2005 05:50 PM

My results should have been in last week but the doctor only works here 1 1 /2 days a week so to get an appointment I had to wait till the 3rd of feb. The problem with living in a small community, but we are lucky to even have doctors here especially an internist. Otherwise I would have to travel to Ottawa to see one. They will not give results out over the phone. So I wait.....There could be worse things so I have learned to be patient and just enjoy life right now......no sense worring before I know everything(of course I was not this positive the first week)I think the Canadian health system is to blame for the waiting time as we don't pay for services most are paid by the gov't, so it has pluses and minuses.

Will let you know once I do


Hugs
Debbie

stardust12 01-30-2005 06:54 PM

Debbie,
Just wanted to let you know that I'm thinking of you my friend. I hope the 3rd brings some answers. Please let us know the results if you are up to it. My prayers are with you all week .

Love ya,
Rosey

debknechtel 01-31-2005 05:43 AM

:heart: Rosey thanks so much . It really does mean the world to me and I am sure because of all of you I am able to cope better with this. you have all made me realize just how much i have to be thankful for in this life. I will let you know as soon as I hear something!!!

Hugs
Debbie

trainlady 01-31-2005 03:48 PM

Hey sweetie,
You are in my prayers, too! I've not heard of syringomyelia, so can't offer any advice but please know you are in my thoughts and prayers.


hugs, Donna:hearts:

debknechtel 01-31-2005 04:44 PM

:hearts: Donna thanks for the prayers. I really appreciate them. Not many have heard of syringomyelia. I'll let you all know Wed if that is waht I am dealing with.


Hugs
Debbie

sweetspirit 01-31-2005 07:43 PM

Hi I am new to this forum and saw your thread about Syringomielia. I have this awful disorder and have been living with it for 11 years. I just wanted to introduce myself and tell you that you are not alone. I was DX'd in 1994 with a cyst at C-6 and it was 2 mm wide and long at that time and I was already symptomatic. Pain, burning, numbness, etc. I got mine when I broke my neck in the Army. It is now from C-5 to T-3 and 4mm wide. I am partly paralized in my hands and feet, the pain is worse and I am taking narcotic pain relievers, muscle relaxers and I am not operable as of yet. They do not like to decompress until the cyst is at least 9mm or causing massive problems like near paralysis. DO NOT do anything that causes straining or pick up more than ten pounds. Even constipation can cause too much straining and cause growth of the cyst. I know a girl who burst her cyst coughing hard. I don't want to scare you but to tell you to use caution and seek a neurologist with knowledge in Syringomyelia/Chiari Malformation. I am 42 and I was 31 when DX'd with this and a host of stuff I won't bore you with now. Here are some websites that will help you find help and find others like us to talk to.
www.asap.org

www.sm-acm.com

http://brain.hastypastry.net/forums/

www.spineuniverse.com

www.syringo.org

www.csn.ca/

www.chiari-syringo-news.org/index.htm

www.chiariinstitute.com

www.spinalinjury.net

I hope these help you out and if you have questions please feel free to ask.

Lifestar 02-01-2005 03:14 AM

Sweetspirit, welcome to the boards..

I pray that Deb is NOT diagnosed with syrinx..

I am so glad that my DD has not developed one as a result of her Chiari, but the links you provided are wonderful resources. Tha you.

I am soo sorry to hear of your pain and complications from your injury. I have serious lumbar problems from an on the job injury as a Paramedic in NYC over 15 years ago, so I can somewhat understand your frustration. I had to wait over a year for my first surgery...

Please never hesitate to get involved in the conversations here. You will find nothing but support. It's a great group of women.

Val

debknechtel 02-01-2005 07:05 AM

^^ :jump2:

Eva welcome to Family Corner!!!!! I hope you will check out some other forums and threads. This is the nicest group of women and a few men who offer so much support through friendship!!!:wigg:

Thank you thank you so much for the wonderful links you posted. It is nice to meet someone who is dealing with this diagnosis. I am very sorry that you are going through this. I go to see my doctor tomorrow to get my results from my MRI and if it is in fact syringomyelia. The main concern with me is that my respiratory centre muscles are showing a weakness and I have had some instances where swallowing is difficult. Depending on what the outcome is tomorrow I may have lots of questions for you!!! Thanks you so much for sharing some of your life with me


Hugs Debbie

sweetspirit 02-01-2005 06:30 PM

Lifestar and debknechtel,
Thank you both for the warm welcome. I have been reading the threads and posts in this forum for 2 days and love the friendliness and closeness I have seen here. I will definitely be staying here and posting more soon. I have lots of lady friends that would love this place.

I was brought here by a web search I did for Syringomyelia and it sent me to this thread. When I read it I felt your confusion and fear at not knowing what to expect or even if you should be concerned. I just remember so vividly when I first was told that I had a syrnix (cyst), I was so scared and thought I was alone and had no one to talk too. I did not want you to have to stay in that place any longer. I want you to know I am praying that you do not have this awful disorder. I know folks are misinformed out there about this because it is so rare. Just 440,000 of us in the world. I neurologists don't know how to treat it and even go as far to say there is no reason to change you life and there should be no symptoms. That is not true, no matter how small the syrnix there can be big symptoms. You must be careful even our heartbeats, which move the spinal fluid causes pressure on the cyst. A chiropractor is a no go also, they manipulate the spine and that causes pressure also. I will leave this subject until we find out for sure if you have this and then we will talk more if need be. Who knows someone else may need this info.

There are many prayers going up for you and this situation. Take care and know that I care.

stardust12 02-02-2005 01:36 AM

Debbie,
I'm sending lots of prayers your way today. Good luck and remember I love you friend!!! Please let us know how it goes and if I can help in anyway name it and I'll do my best.

love ya,
Rosey

stardust12 02-02-2005 01:39 AM

Sorry for the back to back post but I didn't welcome sweetspirit. Welcom sweetspirit the ladies here are truly an amazing bunch of women hope you will stay awhile.

love ya,
Rosey

Lifestar 02-02-2005 06:16 AM

Deb, I'm thinking of you today.. and know that I'm holding your hand in spirit as you go to your Dr's apointment.

We're here for you as you return with your news, and I have a (((hug))) for you.. Good news or bad.


***********

Eva,

What a font of wonderful information you are on this subject!!

I am sort of the "medical librarian" around here.. lol,, and did some research on this disorder when my older dd was diagnosed with Chiari Type -1 ( and then later found out I had a Chiari malformation too...all my life, and never knew it!) ... But thank G-d neither of us have ever developed a syrinx.

I understand the physiology of it..and the risk factors... But to me it's just research.

You live with it, and I can not even begin to imagine what that's like.

Deb's posting was answered by a higher power.. He gave her you.

We all hope her diagnosis is negative, but just knowing that you are there to offer support is such a gift, '

I , for one, thank you for coming forward to offer support. I guess that in itself is healing.

I know I was terrified when my dd was first diagnosed, and we waited for those MRI's of her spine. She always had numbness and tingling in her hands in the morning,a nd nighttime headaches,,, Every year we wait for those MRI's and pray they are OK..

Thank G-d ..they are!

Anyway I just needed to say that .. and to send a(((hug))) to you too!

Oh, and by the way.. Your friends are surely welcome here.... lolol!!

debknechtel 02-02-2005 11:16 AM

Sweetspirit I have to thank you for posting and helping to put me at ease, I feel terrible that you are dealing with this horrible disease!!!

Val and Rosey thank you so much for all your thoughts and prayers also.

Well I'm back from the doctor and I walked in his office and he gave me the biggest hug ever!!! He said he was so excited to tell me everything was negative!!!! He had been so worried that a 38 year old with 3 small kids did not need this in her life. I still have to address my breathing issues with the neurologist but I am so happy right now...i feel like a huge weight has been lifted.

Sweetspirit you have been so wonderful to share your life with me...i appreciate it so much and I hope having this thread here will be helpful for some others who are facing this disease. We are still here to talk to you about anything you may be facing and I would love to see you on some of the other threads. I am sure you will find many of us are more than willing to offer friendship.

Thanks again everyone

Hugs
Debbie

janet 02-02-2005 11:29 AM

Praise God Deb! Now that the hard thing is over...lets all prayer for an easy fix for you.


FIX ME JESUS
***********
Oh yes, fix me, Jesus, fix me.
Fix me so that I can walk on
a little while longer.

Fix me so that I can pray on
just a little bit harder.

Fix me so that I can sing on
just a little bit louder.

Fix me so that I can go on despite the pain,
the fear, the doubt, and yes, the anger,
I ask not that you take this cross from me,
only that you give me the strength to continue carrying it onward 'til my dying day.

Oh, fix me, Jesus, fix me.

Abear 02-02-2005 11:30 AM


Hooray!!!! ^^ ^^



:party: :party:


Great news Deb!!! So, does this mean you can now go back to your martial arts??

I wil be praying that you get results just as good with the respiratory specialist!!!


:sparkle: :hearts: :cool:

debknechtel 02-02-2005 11:36 AM

Cindy

Yes he said I could return to martial arts just not to overdue it with the cardio as my breathing is still in question. I was so excited , because to go from 4 nights a week to nothing and taking away something I loved was causing me to have some depression. I am just so thankful right now!!!

Thanks Janet, I love the prayer and have copied it so I can look back on it.


Hugs
Debbie

stardust12 02-02-2005 04:17 PM

Debbie I'm so happy for you as I sit here laughing and crying I'm thanking God for you. I let out a big yes and Norm wanted to know what I was so happy about. I'm so glad you can go back to the martial arts. That is the best news I've heard all day!!!! Take care Deb and I'm still praying for you until you here from all of your doctors.

Love ya,
Rosey

debknechtel 02-02-2005 04:31 PM

Eva I pm'd you!!! Check your pm box...if you are not sure let me know and I will let you know how to find it!!!

Hugs
debbie

Lifestar 02-03-2005 01:04 PM

(((( HUGGS)))) Deb, I'm sooo very glad for you!! Now.. The hunt begins for answers, but at least you can put this chapter behind you , and release your tension doing the exercise you LOVE!! What a gift that is, huh?

Whatever support you need as you go through the next phase of your quest, I'm here for you girlfriend. I wish I could adopt you and bring you here for a week of dr apointments and quick answers...

Soooo.. How long till you get your black belt??

debknechtel 02-04-2005 08:36 AM

Quote:

I wish I could adopt you and bring you here for a week of dr apointments and quick answers...
Val wouldn't that be just the greatest!!!!You really are a true friend!!! Thank you so much for all your support!!!!


Quote:

Soooo.. How long till you get your black belt??
If I am lucky 4 to 5 years!!! The black belt grading is 5 1/2 hours long, you have to have 90 teaching hours, pass a written test and write a 30 page type written essay!!!! Yikes!!! I may never get that far. My oldest son is working towards his black belt. We have just started to work on his essay, he only has to do 15 pages because of his age but still is a lot!!!!


Hugs
Debbie

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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