Syringomyelia

[Stetson]

I have just been told I have this disorder, to tell you the truth I'm afraid.I have 2 young kids and a wonderful wife that I'm afraid of putting a burden on them. What can I do?:confused:

[Chemar]

Hello
I just wanted to welcome you tho so sorry for what you are going through

this forum is still growing so I hope that some of the members who post here will be along soon to answer specific questions on your illness

let me know if you need any help finding your way around the rest of the community

~Cheri~

[C. Hooper]

I had an operation for chiari in May of 2004, and there is no way I could've gotten through the whole ordeal without my family's support. Be honest... you'll need the help. This type of thing takes an entire family to make decisions over.

[braingonebad]

Hi Stetson!

I was dx'd with SM 1/04 (no ACM). I was being tested for MS (still am) and about the same time, was told I had a serious neck injury.

I have 2 kids - then teenagers. I had been sick for years, chronic migraines, lost my job, horrible fatigue.

When I was dx'd, I felt like I was falling, like I'd been thrown out of an airplane. Took years before I felt like there was solid ground under my feet, and that ground still feels shakey.

I told my neuro two months before my dx I couldn't feel hot/cold in my hands, and that didn't sound right even for ms. I had felt for over 15 yrs like there was some kind of pressure between my shoulder blades in my back, like it needed to crack. Didn't hurt, just pressure.

Like if you have something in your pocket, you just know it's there.

But I was scared when I found out what it was, when I saw it on the MRI film. Creepy.

The worst of it now is, still can't feel hot/cold in my hands - have to be careful I don't burn myself - and I can't lift much or my hands/forearms get tingly (pushing, pulling, straining are out too).

None of my docs understand this condition. Mine, I know, is mild. There's pain, yes, but it could be worse. And I avoid those activities that might make it worse, that's all I can do. If you're allergic to bees, you try not to get stung, and I try not to egg my SM on.


I'm sorry about your dx and hope you find comppasionate, understanding docs to help you out. As far as your family goes, I get that. You are not letting them down or burdening them - you did not choose to have this. Stuff happens, okay? don't be hard on yourself.

This is your chance to show your kids how to deal with the tough times.

All I could think of when it started to hurt was Thank God it's me and not one of the kids.

Good luck.

:hug:

[AzSyringoChiari]

I have just been told I have this disorder, to tell you the truth I'm afraid.I have 2 young kids and a wonderful wife that I'm afraid of putting a burden on them. What can I do?:confused:


Stetson,
I also have syringomyelia and understand your feelings! The best advice I can pass to you from my personal experience is first, Please educate yourself on this diease! Go to asap.org and other great informational sites. Remember you know your body and how you feel. Do not tolerate any Doctor that treats you without respect & understanding.

Take a deep breath.....you will never be a burden to the ones who love you! I would be happy to talk with you further if you would like. Send me a email.
Blessings!

[choudsal]

Hi

I have just joined this forum and recently after 2 MRI scan's and months of severe pain down my right side, pins and needles, burning pain and severe one sided head aches i was told that i had a cyst in my spinal cord which may or may not be causing my symptoms. This has come as a bit of a shock to me as a i am in a full time job with two young very demanding children and at the same time i am the main breadwinner. I have had a lot of time off work because i simply can't tolerate the pain. I can't have any anti- inflammatories because i had an asthma attck from them last year, and my GP won't go beyong CO-Codamol because she inssits that i would not be able to function aftertaking them- i need to drive to work and drive for the school run apparently anything strnger than co-codamol would effect driving. Can anyone tell me if this condition is permenant and whether or not and is it classed as a disability? I have been referred to the pain clinic they have suggested injections into my neck- which does not sound to welcoming- but has anyone been through this and did it help them? Please could some one affer me some tips to deal with this condition!

[razzle51]

if the condition you are talking about Syringomyelia without Chiari , you need to get an expert on the subject , to check and make sure your spinal flow is good . If not you may have to have a shunt put in. If your flow is good then you need to be treated with medication. A syrinx can grow , can shrink and can stay the same. If you done have Chiari then injections in the neck for what??? Pain . Usually people that get those injections it helps a little but thats about it. also check and make sure you dont have chiari . if you do have chiari no injections period

[choudsal]

if the condition you are talking about Syringomyelia without Chiari , you need to get an expert on the subject , to check and make sure your spinal flow is good . If not you may have to have a shunt put in. If your flow is good then you need to be treated with medication. A syrinx can grow , can shrink and can stay the same. If you done have Chiari then injections in the neck for what??? Pain . Usually people that get those injections it helps a little but thats about it. also check and make sure you dont have chiari . if you do have chiari no injections period


Thanks for your reply. I asked the Neurologist what i had and he just said it's called a cyrinx- i'm not sure if i've spelt it right- he's given me Gabapentin to take 3x a day and co-dydramol 2 four x a day and the pain clinic see me next month for pain releif- injections into my neck. I have good days and bad days, on a good day i can manage but am quite slow and have to pace my self, on a bad day i need to put myself to sleep and with 2 young children this is very difficult. i am finding easy tasks at work difficult to carry out and my work load is just building up because i cannot complete tasks due to the pain i'm in and also because of the side effects of the medication. Luckily my line manager is good and he has authorised leave for the next month and so i will be working part time for the next month- during this time i want to see if i can make a claim on my insurance policy, i'm have a feeling this condition comes under permanent disability, if it does then i should be able to claim and i would get some financial releif and be able to reduce my work load on a long term basis- does anyone know of anybody with my condition that have had to make a claim on there insurance policy and can share some information about it with me. Also does anyone know of any society's in the south east region of the UK that offer support for poeple with my condition?
Thank you for all your information and help.

[csinfo]

Thanks for your reply. I asked the Neurologist what i had and he just said it's called a cyrinx- i'm not sure if i've spelt it right- he's given me Gabapentin to take 3x a day and co-dydramol 2 four x a day and the pain clinic see me next month for pain releif- injections into my neck. I have good days and bad days, on a good day i can manage but am quite slow and have to pace my self, on a bad day i need to put myself to sleep and with 2 young children this is very difficult. i am finding easy tasks at work difficult to carry out and my work load is just building up because i cannot complete tasks due to the pain i'm in and also because of the side effects of the medication. Luckily my line manager is good and he has authorised leave for the next month and so i will be working part time for the next month- during this time i want to see if i can make a claim on my insurance policy, i'm have a feeling this condition comes under permanent disability, if it does then i should be able to claim and i would get some financial releif and be able to reduce my work load on a long term basis- does anyone know of anybody with my condition that have had to make a claim on there insurance policy and can share some information about it with me. Also does anyone know of any society's in the south east region of the UK that offer support for poeple with my condition?
Thank you for all your information and help.
Yes the syrinx is the "fluid filled cyst" in the spinal cord, syringomyelia is the disorder, I hav acm1 and NO syrinx, but I am on gabapentin-neurontin and it helps my pain a little, and I do phys therapy-core, tens, masage, ultrasound, all helps a little, I adjust my life a lot to my symptoms, I have days when nothing gets done, and other days when it is a triump to just get out of bed and make it down my house stairs and pack a quick lunch for my 2 kids,and dont be afraid to ask for help, when you need it! It is just impossible to get by without help- ask loved ones, friends, co workers, listen to your body, and rest when you need to, be "good" to yourself. And realize that things you could do before quickly, now may take a lot longgggger to get finished-give yourself time/slow down, and dont feel guilty about it! If you need a handicap/car sign- ask your doctor/dmv. I am not sure about the uk , but it is in the social security book for disability'syringomyelia" in the us

[ryguy]

I have just been told I have this disorder, to tell you the truth I'm afraid.I have 2 young kids and a wonderful wife that I'm afraid of putting a burden on them. What can I do?:confused:

I too have just discovered this. I also have 2 young children and a wonderful wife. I am about to buy these chinese herbs called mignitin and/or omeglatex. Look them up if you like, its worth a try i guess. im tired of living on pain meds. please be in touch if youre willing.

[wild-at-heart]

I too have Syringomyelia and a Chiari Malformation. It is kinda scary too. Mine is very large (from the basically the base of my skull to the bottom of my shoulder blades). I have been having symptoms since I was 12 and they figured out my malformation when I was 19. I had surgery for my Chiari Malformation a year ago last month.

My symptoms are better. I haven't been in to see my neurologist since I was cleared to go back to work and such, because we currently have no insurance. However, I had a spinal scan done tonight, actually, and it shows that my spine has curved from my neck to the bottom of my shoulder blades, which syringomyelia might cause.

I'm the queen of head injuries, so that has probably not helped. There are a lot of things I think I really need to quit...like, heading soccer balls and playing softball (major triggers of my symptoms before).

It's hard. A big life adjustment. Maybe I don't know enough about it to be scared of it yet, but it's not the end of the world. Could be worse, could be better...but this is how it is. The sooner I accepted it, the sooner I pretty much forgot about it.

Constantly, I am in pain...but I keep really busy, so I don't have time to think about it. My family is totally understanding and helpful. For the guy who started this post, tell your family. Let them love you through this. Let them help you. You aren't a burden. They will count it an honor, a joy, to walk this road with you. If you don't let them, it's just gonna hurt them more.

I do wanna say this...and if I'm breaking forum rules, sorry...this is my first time. But I serve a good God. He has given me trials that are huge for someone who is only 21. But He's still a good God. He does not stand back and watch idly as I wander blindly through life, hitting all of these walls and hardships. He is walking with me, His hand in mine. And I know FULLY that if God wanted to heal my syringomyelia right now, He could. For some reason, He doesn't want to, but that doesn't mean He isn't in control. It doesn't mean He isn't with me. And it doesn't mean He doesn't care. He just has other, far greater plans.

Ya'll, this is some tough stuff. Not gonna lie. I'm one of those "I need facts" kind of people. If it's wrong with me, I wanna know more than the doctor does about it. I got attacked by a dog at 18 and he ripped open my face pretty bad and the first thing i wanted was to see it. Sometimes the "facts" scare me. Until I remember that God is bigger than the boogie man...and He's bigger than anything I go through.

This may sound crazy weird but if anyone needs to talk or vent or what-not, shoot me an email. I don't give churchy answers. And I actually GET IT...because I'm there too.

[juls024]

I too have just discovered this. I also have 2 young children and a wonderful wife. I am about to buy these chinese herbs called mignitin and/or omeglatex. Look them up if you like, its worth a try i guess. im tired of living on pain meds. please be in touch if youre willing.

I am wondering how the Herbs worked for you? Thank you, Julie

[mrsD]

I'd caution against those products, based on some net evidence of the company making them.

They are very high in price, contain little substance, and
have appeared on complaint boards, for poor service or not sending the product.

Here is one opinion of Botanical Sources on a blog:
http://onesickmother.typepad.com/my_weblog/2009/09/botanical-sources-scam.html
(be aware there is some strong language on this blog)

I found this when searching for a similar product mentioned on our PN forum here.

Buyer beware.

[juls024]

Thank you!! I appreciate you letting me know and giving me advice. My friend was born and raised in China. She moved her after college. I asked her to look up some information about the herbs, considering it all says CHINESE HERBS work and I can't read Mandarin. After not only reading about it, she called one of the Neurologist there and he pretty much said, they have Medicines that do help make a huge difference but NOT HERBS!! I think it is sad, how people/companies try to take advantage of people. People who found out they are sick and looking for help! Really, what is this world coming to? Soo sooo sad!
Julie

[brainiac]

I have just been told I have this disorder, to tell you the truth I'm afraid.I have 2 young kids and a wonderful wife that I'm afraid of putting a burden on them. What can I do?:confused:
I was diagnosed with the same thing, the doctor said and I quote "this is the biggest Syrinx I've ever seen I don't understand how you are not paralyzed?" After 4 surgeries and a shunt hopefully things will get better, but as for you be careful with hot and cold items, please do your research you will find that some or all of problems that you are having could be related to your syrinx due to the pressure being placed on your spinal cord. I also have 2 young children, my oldest 11 saw me have a seizure right in front of him,it is very difficult for them, dont forget that you are Supermom to them and nothing should be able to hurt you, so I hope the best for you, any way that I can help please feel free to ask.

[happybear111]

I also have a syrinx in my lumbar spine, i understand what you are going through. mine was found by mistake, i had an avm and they found the syrinx doing an mri scan. if you have any question please feel free to asks!