New Symptoms

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New Symptoms

Postby Scott Smith » Mon Mar 21, 2011 9:24 am

Hello gang,
I have been mostly absent from this board for a good while dealing with brain tumor surgery and recovery. Thankfully that is healed and I am mostly back to where I was pre-tumor. I am still of course dealing with SM issues due to a syrinx at the C5-C6 level as a result of spinal cord trauma from a fall years ago. The syrinx has been stable but I am now having some new symptoms and wanted to get some opinions on whether they are related to the syrinx. My guess is yes. I have had some arm weakness and tingling for a long time, and some muscle wasting in my hands. A few weeks ago I started having "sweeping" severe numbness/tingling down both arms with the right being the worst. This starts in the shoulders and quickly works its way down my arms to my hands/fingers. I have also noticed some "sciatic" type pain in both arms and they seem to be a bit sluggish and don't always cooperate, especially when I am trying to type, lol. I still do a significant amount of physical labor around the mini farm and I'm relatively sure I may have further injured the syrinx trying to get a horse loaded in a trailer. I would love to hear everyones thoughts on this. Thanks in advance.


Scott
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Re: New Symptoms

Postby hikealaska » Wed Mar 23, 2011 11:59 pm

You have so much on your plate. What I can tell you is that you have to be careful when doing any kind of physical labor. The hardest thing for me to accept is that the lifestyle changes are forever. You have need to be careful and adapt your life accordingly forever. It's not to destroy your life, it is to add quality. For me personally QUALITY of life takes major priority over QUANTITY. So, make your adjustments and live life carefully but live it. Remember, with very few, but serious exceptions you can do anything you want, you just can't do everything you want.
Karen
"People don't get what they deserve. They just get what they get, and there's nothing any of us can do about it." - House
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Re: New Symptoms

Postby karenb » Thu Mar 24, 2011 8:30 am

Scott,

Arm tingling, weakness, and muscle wasting could be caused by the syrinx, given its location. Another possibility is (I know you don't want to hear this) carpal tunnel symptom, or possibly something going on with your vertebrae at C6-C7 or C7-C8. There are other possibilities, of course, but I am no expert in all the things that could cause this.

I would suggest you need to get to a neurologist to determine the source. Muscle wasting isn't a good thing - it generally means that a nerve is being compressed somewhere, whether it be in your wrist, elbow, vertebrae, or syrinx. The sooner you get it checked into and taken care of, the better chance you have of getting the lost function back.

I also agree with Hikealaska... you are probably going to have to accept some limitations in what you do to ensure you maximize your overall quality of life. (Yeah... I know it sucks... I still have all my tools and stuff in the garage, but can't use most of them any more, and it really sucks!)

Good luck, and please keep us posted as to how you are doing!

Karen
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Re: New Symptoms

Postby Scott Smith » Thu Mar 24, 2011 1:38 pm

Karen,
Thanks for the reply. It's not carpal tunnel, it starts in the neck and goes all the way to my fingers. So its either the syrinx or a disc. The wasting in my hands is not new and I am being watched by my neurosurgeon. I am scheduled for another MRI in August and will get it sooner if the symptoms keep getting worse. I do agree that the limitations suck. I guess maybe I am just trying to ignore them so they'll go away, lol.
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Re: New Symptoms

Postby keggler 1 » Thu Mar 24, 2011 8:06 pm

Hello and welcome to the board....I remember having a cape effect,like weight on my arms holding my arms down.The weakness has gotten better,and I try to do something everyday for exercise.

This is a great place to come and vent but also to find you aren't alone and alot of people have some of the same symptoms.Good luck......

...Jerry in Carolina...
ACM S/M BI Hiatal Hernia EDS III Successful PDF 2007 Dr Rosner
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Re: New Symptoms

Postby karenb » Fri Mar 25, 2011 6:22 pm

Scott,

Don't be too quick to dismiss Carpal Tunnel. When I first developed it in my right hand (back in 1985... working construction to put myself through college... ah, to be young and foolish again!), my symptoms were a lot like what you describe. First I had some tingling & numbness, and finally the numbness and severe pain went all the way from my forearm into my neck. It started with the right arm, and then started spreading down the left arm.

I'm not sure what all could have developed - I ultimately quit the job (rather than be fired), since I couldn't perform the tasks I'd been hired to do (demolition & remodelling).

When you mentioned the sciatic pain, that made me think of the neck vertebrae compressing the nerve (possibly below your syrinx). I suggested a NL exam because nerve impingement is dx'd differently from CM/SM - MRIs are usually not helpful.

Karen

BTW, my syrinx is T6-T9 - I do have some disc issues in my cervical spine that sometimes pose issues for the nerves in my hands and arms.
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Re: New Symptoms

Postby tennesseewalker » Fri Mar 25, 2011 10:10 pm

Hi Scott,

As you describe your numbness/tingling sweeping down both arms at the same time, right more than left, I'm inclined to think it may be related to your syrinx.

It may be nerve entrapment, but to have entrapment in both arms causing the same symptoms at the same time seems unlikely, but not impossible. I have CM/SM, and have had at different times both carpal tunnels released, and right ulnar nerve transfer surgery.

I think you should have an EMG/nerve conduction study done on both arms. That will take the guess work out of it. Good luck.

Mary
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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