IM NEW!!!Could someone please help answer some questions?

Pull up a chair, grab a cup of coffee and have a nice long chat. This forum is the perfect place to get to know one another on a more personal basis. Share birthday or get well wishes, funny stories, jokes and interesting tidbits.

Moderator: pmaxwell

IM NEW!!!Could someone please help answer some questions?

Postby preciousheide » Tue Mar 18, 2008 9:17 pm

Hello! I am new to this website. I found this in search for some answers

to my condition as well as ways to help. I am 25 and after a fall back in june of 2007, and me demanding an MRI, insisting that there was definetly something wrong with me the doctors have found 2 syrinxs one in my neck and one in my mid back.

They did an MRI on my brain and didnt find any issues there. I am looking up Syringomeylia and I am trying to figure out what caused mine.

I guess, if Im right I dont have the Chiari Malformation one? Is this right? I dont really understand any of this.

My life has so dramatically changed and quick. My arms hardly want to work. My hands hurt. My shoulders hurt, my neck so heavy.

right after my fall I didnt walk for 3 months. I couldnt use my arms or legs. I couldnt even sit up on my own.

I got a little better and now I am going down hill again. I dont know what to do about my condition and I am SOOOOOO SCARED!!!!!

My kids need me and I need me. Could someone give me some help and tell me what I should be doing now. Whats next? Should I be having more testing.

My doctor just told me to get a dishwasher, and a posterpedic bed? I know these will help, but what else? Just live with this?
Posts: 42
Joined: Tue Mar 18, 2008 8:40 pm
Location: Soldotna, Alaska

Postby georgiagal » Tue Mar 18, 2008 9:30 pm

Welcome, PH --

First let me start by quietly saying "calm down" (NOT being sarcastic here!!) The calmer you are able to stay, the less frightening it will be for the kids, as I'm sure they're frightened quite a bit already. I know absolutely how scared you are and don't blame you one bit. You have so many unsanswered questions at the moment, but rest assured many with sm will follow me shortly in replies.

Have you had a cervical and/or brain MRI? This will determine whether or not you have Chiari. Secondly, from what I have read from yourself and others on the board, your SM could most definitely be caused by the fall you suffered.

You also need to find a specialist in sm. Please post where you live, following posters may be able to help with finding a specialist.

I'm glad you came here, this is another family for all of us. We will be here to help you thru, listen to you vent and give answers if we can. Just remember you are not alone even if you feel it right now. There's lots of love and support to be patient and you'll soon see.

In the meantime here are some extra (((((((((hugs)))))))))) from my neck of the woods.

Take care,

User avatar
Posts: 1101
Joined: Sat Dec 08, 2007 4:33 pm
Location: Loganville, GA

Re: I'm New....

Postby hartagold23 » Tue Mar 18, 2008 9:31 pm

Hi and welcome! You've found a great place for support!

Sorry to hear about what you're going through. I think you need to see a specialist in this area. Where are you located? Someone here might know of someone you can go see for your syringomyelia.

SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
Posts: 138
Joined: Wed May 16, 2007 4:38 pm
Location: New Hampshire

Thanks so much

Postby preciousheide » Tue Mar 18, 2008 10:03 pm

First thank you so much for responding. I know I am kinda "Freaking out" right now.

I am in a town called Soldotna, Alaska. There are no specialist here, the nearest city to me is Anchorage alaska.

Just my experience is that the doctors here really are not helpful. My family doctor is willing to help and is great but she is so busy and I have to keep after her to schedule my Mri's etc. She told me today she is going to do research on what to expect out of this but I feel I am progressing quickly and I am very impatient because of it.

Thanks for the support. I am so emotional right now and I dont have family support at all. I am pretty much alone!
Posts: 42
Joined: Tue Mar 18, 2008 8:40 pm
Location: Soldotna, Alaska

According to my MRI's

Postby preciousheide » Tue Mar 18, 2008 10:07 pm

I did have a MRI of every single area of my spine including the brain. Nothing showed up in the brain but did in the Thoracic and cervical spine. (my neck and mid back)

The did the MRI on the brain for MS does that make a difference. They would see if I had something wrong......right?

You see all the symptoms people are describing on here for Chiari Malformation I too am dealing with so I am confused
Posts: 42
Joined: Tue Mar 18, 2008 8:40 pm
Location: Soldotna, Alaska

Postby Sandy » Tue Mar 18, 2008 10:33 pm

Hi Preciousheidi!

Just wanted to add my welcome to the rest, and another reminder to try to stay calm. I know exactly how stressful it is, I'm an SM'er, too. But getting really upset and emotional can make your symptoms really escalate, so try to keep yourself on an even a keel as you can.

Here for anything I can do.

sandy :D
Posts: 1150
Joined: Wed May 16, 2007 2:44 pm

Postby Janice » Wed Mar 19, 2008 9:19 am

Hi Preciousheide and Welcome!!

It seems as though your doctor has ordered the appropriate testing. Do you have any of the reports, in hand? It would be to your advantage to make sure you get the reports and films or CD, if possible.

Most of the time, the doctors do try to rule out MS. My doctors kept going from MS to Syringomyelia (SM) and vice versa. Finally, after about a year, they agreed on SM.

The conservative method of treatment is most likely the path most specialists will follow. Surgical intervention for a syrinx is recommended as a last resort. However, you should try to get a referral to a specialist to get a sense of what/if anything, s/he is able to do for you. There are other issues, besides the fall, that could cause SM. If you are unable to travel and you have to receive treatment in your town, at least try to find out if any are familar with SM and are willing to search for other causes.

Most of us are being seen by a pain management specialist to provide relief from pain. If you are not seeing one and would like to, you should speak to your primary physician (PCP) about a referral.

If you participate in any activity, treatment or therapy that cause additional pain, you should stop. Anything that causes extra pain or discomfort should be avoided.


Take care and you are not alone.

P.S. I hope the doctor was just being humorous by suggesting you get a dishwasher and a bed.
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4 (Copy & Paste link into your browser)
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Postby SMLady » Wed Mar 19, 2008 9:24 am

Hi and welcome. I'm sorry they found the syrinx's. You are so young! I've been tested for everything too, and they can't find a reason for mine either. It's frustrating I know. The whole thing is frustrating. Not knowing what caused it, not knowing what makes it worse, not knowing what the future will bring.

What helps me is just remembering that there are no guarantees in life, and if this is the WORST thing that ever happens to me, then I consider myself pretty darn lucky. I have lost two friends to breast cancer and have several friends going through breast cancer right now, and when I look at them, I consider myself the lucky one. Of course, it took me a good year before I started feeling this way.

I hope you can find the support you need from this site and from your friends and family.

Have a nice day. SMLady
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
The Man who walks with God always gets to his destination.
User avatar
Posts: 1571
Joined: Thu May 17, 2007 6:37 pm
Location: Midwest

Postby Tricia C » Wed Mar 19, 2008 9:56 am

Hi Preciousheide,

While looking for the right doctor you need to take care of your body and that will help with the stress.
As the others have said stress makes it worse. If there is any place you can get to a heated pool and gentlely get around that is going to help you deal with this some.
Also hopefully build up your strength.

Take care & blessings,
Tricia C
Posts: 84
Joined: Fri Dec 28, 2007 5:46 pm

Postby kiminfla » Wed Mar 19, 2008 9:56 pm

Precisousheide, Welcome to the board! I have CM, no SM, but we're all in this together and we're here to do whatever we can to guide you forward on the path of wellness...the absolute best advice I could give would be to get to an expert in the care of SM...many have to travel to do so but with these "rare" disorders, expertise in dealing with them is a must! I believe there is one in Seattle if I remember correctly...The ASAP medical advisory board is a great place to start! Again, Welcome to the ASAP message board! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
Posts: 1348
Joined: Wed May 16, 2007 2:03 pm

heide i know what you are goin through

Postby roy » Wed Mar 19, 2008 10:07 pm

this is roy i was hurt in feb 21 2005 my spine started in the thoricic

heide i know what you are goin through

Postby roy » Wed Mar 19, 2008 10:51 pm

this is roy i was hurt in feb 21 2005 my spine started in the thoratic from t4 t6 and grow.

then they sent me back to work every time they did it grow more.

by the end of nov 14 when my factory took me off work said i cant do production my spine cord had swelled to c7 to t8 with a cyst at t3 to t6.

i was misdiagnost a lot of times.

they first mri was bluried and they said i had cancer and i was dieing but it was a bad mri.

you are in for one ride that you never thought you would ever have make double sure you read any reports your self.

not just doctors they send the mri to be read get that report from the reader of the mri thats how i found out my mri was bad.

it said on that report it needed to be done over it was not clear.

and make double sure if they do surgery make sure the nero all so helps treat the pain and do it all if not he will do the surgery and that will be all.

then youll be stuck with no telling how many other doctors to treat the after pain and let me tell you you will have pain.

i wont lie to you if you have the cyst you will be in pain from now on.

you will haft to learn how to deal with this one step at a time.

i have had it three years and it is still all i can do to hold my self together.

but you will have a lot of people who will help you here and will talk to you when ever you wont and you cand find out a lot of info here that you will need to get by.

when they did my surgery the cyst was 6mm and they hope the pain would go down but it didnt.

they did get rid of the cyst but it had damage the cord already and now i have scar tissiue arachnoiditis.

this is why they dont wont to do any surgery unless they just haft to it would be very posible you could get arachnoitis and you dont wont that trust me.the surgery could do more damage.

you will haft to learn all over how to do things that dont hurt you no lifting bending pulling any thing that will make you strain this is a whole new world and not very many know about this condition.

and your family it will be hard for them to understand what you are going through and that will hurt more then anything.

but you can get help from [asap] [care cure forum] my story is on there [why do doctors lie] and i talk to dr wise young a lot.

just make sure your nero works with these kind of problems on a day to day basis if not find some one else who has.

i hope i did not scare you to much but if your like me i wont to know up front.

where i can fight it now then it hit me in the face later.

i so sorry for all your pain if i can help just ask.

[ i wont give up] roy :)

Postby Vagreeneys » Thu Mar 20, 2008 1:13 am

Hello preciousheide,

First like everyone else has suggested please calm down. Your children will be able to sense that you are upset. Yes you are very young to haves such a dx but there is help out there. Get a good nuerosurgeon and a good nuerologist do your research and make sure they have knowledge of your condition the sm. My story is I was diagnosed 4 years ago when i had a neck fusion the ns did not know anything really about it wasn't his field. I have had severe pain since the dx and really didn't know why. Nov.13 my problems skyrocketed and now i am looking for a nuerosurgen that has dealt with sm the board here has helped me greatly just don't give up hope.

You do need to manage your pain and your nueropathic pain also. I am dealing with alot of shaking and jerking and alot of weakness on the right side of my body. I have had to stop working which i worked all my life. I do have a good support system with my family and friends.

I would love to have a dishwasher hahaha. But if you need to talk everyone on here is great!!! they have helped alot. If you need to talk anyone including me will try to help you.

By the way love the way you spell Heide have never seen anyone else that spells it that way besides me that is my first name and my mother is german says that is the correct way to spell to you soon and good luck to you on your venture with this

SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
Rhuematoid Arthiritis
Neck Fusion C-3 to C-6
Tavlor cyst
Tethered cord
User avatar
Posts: 247
Joined: Mon Mar 10, 2008 11:20 pm
Location: Prince George Va

Thanks to all!

Postby preciousheide » Thu Mar 20, 2008 2:29 am

Just wanted to say thank you to everyone for the replies. I can see that I found a great safe place to discuss my worries, pain etc. and I am so grateful,

you all have already helped me so much. Just knowing I have people on here that trully understand means soooooooooooooo much to me. I believe that things will be o.k. for all of us.

thank you so much, and I say that again and again and again!
Posts: 42
Joined: Tue Mar 18, 2008 8:40 pm
Location: Soldotna, Alaska

Return to ASAP Lounge

Who is online

Users browsing this forum: No registered users and 17 guests