SM C4-T1

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SM C4-T1

Postby julia » Thu Dec 13, 2007 6:59 pm

Hello, I'm relatively new to this however not new to the pain and suffering that I have been going through the past couple years but only now finding out what it is we are dealing with. First, I would like to tell you how comforting it is to know there are others like me out there. I have basically shut myself in and stopped answering the phone since I can't face to tell any of my friends, Yes, I'm still sick. Or, no I'm not any better. I hate to be the rain on the parade. I'm just beginning to understand what's happening to me and I find it hard to explain to them. So thank you for all the anwers and information you have provided for me.
I was a high energy person until about 2 years ago when I started feeling extreme weakness and a dead arm sensation. I couldn't sleep enough and would come home from work 5:30 and go right to bed. The doctor treated me for depression but I could not take anything since my bladder would go crazy all night long. I already have a bowel disease so I didn't want to mess with activating that too which usually comes on when I don't sleep well. I have tried many different anti-depressants (Paxil,celexa,effexor etc) but all of them caused terrible bladder retention. If anyone has anything that worked for them please tell me. I understand now after research that syringomyelia causes bowel and bladder problems. Now I understand why I have Crohn's disease.
I am having a terrible time dealing with SM since I was very active before, mother of 3 children and a very rewarding career. I have become extremely depressed and really need some help in dealling with my conditon. It is surprizing to me how little my family doctor knows about this condition.
Also, I am going for surgery 2008 to drain the cyst. I am seeing a NS in Hamilton General named Dr.Murdy(Murty?) Has anyone had him? Have you had any good outcomes. Please tell me anything that could help me deal better. I am so frantic. Julia
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Postby lainiek » Fri Dec 14, 2007 12:05 pm

Hi Julia,

I would get a second opinion before you go ahead with having the syrinx drained. Does the surgeon have an idea what has caused the syrinx? The SM experts all look to treat the cause of the SM. More was said about this in the following thread:

Have you been checked for Chiari Malformation?

Go to the ASAP Medical Advisory board and seek out an expert opinion if at all possible. You will probably have to travel, but I think it's worth it.

Best of luck to you. I know this is all very scary. But so many people at this board are here for support and help.

SM T11 to L1, tethered cord surgery on 1/29/08, Ehlers Danlos Syndrome
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Postby cash71 » Fri Dec 14, 2007 12:14 pm

Hi Julia,

I'm glad that you found your way here. You will find so many caring and knowledgable people here that can help you navigate your way thru dealing with sm. It is a great comfort to have somewhere that you can go where you don't have to explain yourself. We already know what you are dealing with and are right there with you.

I would second the advice that you get another opinion from a ns that has expertise in sm and cm. A syrinx is CAUSED by something. Your doctor should be looking for the cause and correcting that. A shunt is a bandaid. It isn't addressing the underlying cause. A shunt is also risky b/c you have to cut thru the spinal cord to insert it. They also frequently block. For these reasons expert ns usually consider them a last resort.

It's really hard to summon up the energy when you aren't feeling well but you must and really research and become knowledgable about sm. It's the only way to make sure that you know when your ns know what they are talking about and when they don't.

I have a blog (link below) where I have included links to all the best resources to explore when newly dx.

I hope this helps and let me know if I can help in any way.


Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info:
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Postby SMLady » Fri Dec 14, 2007 1:11 pm

Hi. I'm so sorry for you. I have idiopathic SM, which means they can't find a reason for it. I've been checked from everything from cancer to MS to CM, but nada. How wide is your syrinx? My doctor told me he wouldn't put a shunt in mine till it reached at least 6mm (it was 5mm at its widest at last MRI) because he said he could cause more damage than good. I'm not familiar with doctors other than my own, but Razzle I think has a list, so she can probably provide more help here.

I can relate with you, as I'm sure can everyone else. I went from being an active mother, computer programmer, model, actress to this in ONE DAY. I was wrapping Christmas presents on Christmas Eve 2004, and it just hit me out of the blue. The pain was so intense I couldn't even breathe. My husband took me to the ER - my son was only 6. What a way to spend Christmas Eve! Anyway, they referred me to an internist who referred me to an excellent NS. I've been to 3 NS, and they have all agreed that I have idiopathic SM from T1 to T9. Yay me!

Anyway, my life has changed drastically, but I've pretty much come to terms with it now.

I wish you luck. You will find a lot of support here.

Take care, Glenna
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Postby Janice » Fri Dec 14, 2007 4:04 pm

Hi Julia,

Like you, I was very active and enjoyed working with terrific co-workers/friends. I would also get in my car and go whenever I made up my mind to do something or go somewhere.

When this happened, I can remember many days of feeling the same way you do now. For the first 6 months I was so depressed and non-accepting that all I did was lay in the bed, talk to my family only when they came in to talk to me and just sit/lay in my bed throughout the day (I'm home alone until my family returns from work) starring at the walls. Before I knew anything, my family would be returning home and I'd be surprised that it was even time for them to be home yet. All I could think about was the pain, not being able to walk without assistance (before the w/c), all the equipment that was needed for me around the house and not being able to drive. I spent the day thinking about the fact that this could not/was not happening to me at the age of 43 (now 44). How was I going to live like this for the rest of my life, I was still too proud to ask for help. I spent most of my time falling all over the place rather than ask for help getting the things I needed in order to cut down on the pain from walking too far (from one room to another :( ).

I had a visit by a case manager who recommended that I join an online support group and here I am. I have felt a lot better since joining this group and being put on Cymbalta for pain and depression. I now deal with whatever each day brings me, most times with a smile.

There are days I go out with my dh and I don't even feel up to it and there are days when I go out with him and I can enjoy it. I have come to an understanding that I do what I can when I can and when I can not do, I don't do (almost always).

My life is very limited on what I can do but the things I am allowed to do (between my dh and my doctors limitations), I make sure not to over do it so I'm not spending the next 3 days in bed recuperating. However, there are special occasions where I will decide to suffer the consequences. Such as outtings with my family, holiday fun (even though for me it mainly involves just being up in my wheelchair too long before taking a rest) or just getting outside to see the beautiful outdoor surroundings and breathing fresh air. I'm sure most of you can relate to this.

Overall, I still have days of depression. Especially when changes/progression occurs. I have more bad days than good. However, things can always be worse so I make the best of where I am today because no one is promised tomorrow. Like you, I too didn't visit w/friends or talk on the phone when this first happened but as time passed, I now have visitors once in a while and sometimes talk on the phone. It's not the relationships I had with them before but I found that by dismissing them all together was causing me to be depressed some too.

I pray that you; find support from finding your way here, get the treatment or surgery that will return the best outcome for you and provide the best support for your family that you can and understanding from them when you can't.

Hang in there. I'm a firm believer that in the end, everything always works out for our best interest. (((((hugs)))))

Take care,
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)
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