syrinx, no chiara, tingling on left side, is this a symptom?

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syrinx, no chiara, tingling on left side, is this a symptom?

Postby bdicke » Sun Jun 26, 2011 3:30 pm

Hi, I have for the past six weeks had periods of tinglling/electric shock feelings on my left side of my body. They last a couple of minutes then fade away. My neurodoc thinks I need to have the syrinx drained. Sounds scary to me! I do not have a chiari malformation. Anyone else have these tingling feelings? Any recommendations for drs who are very familiar with sryinx in the Austin, Texas USA area? I appreciate any information. Thanks, Sue
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby karenb » Sun Jun 26, 2011 7:33 pm

Hi Sue,

I have a thoracic syrinx, and I get all kinds of funky feelings (including tingling, electrical, burning, & numbness) on both sides of my body - more on the left side than the right side.

You didn't mention the location or size of your syrinx, or where the tingling/electrical feelings are. If the tingling is in your hands, but the syrinx is thoracic, it might be carpal tunnel syndrome or cervical compression due to compensating. Otherwise, the surgical option is really dependent on the size and location of the syrinx. Surgery is often not recommended, since the cure can be worse than the cause. In those cases, your neurologist & pain management specialist can work together to determine the best treatments for your particular symptoms.

There are other folks on the board who can help you with recommendations of a good SM Neurosurgeon to assess your syrinx.

Good luck!

Karen
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby Janice » Wed Jun 29, 2011 2:07 pm

Hi Sue & Welcome!

I'm glad you want to see an SM specialist. You will need more testing to determine the cause of your syrinx prior to any treatment recommendations.

As a new member, right now it's in your best interest to read/research as much as possibly so you're able to make wise decisions regarding your choice of doctor (s), treatment options, etc. You'll be able to make a list of questions for your doctor & use your best judgement going forward.

Every case is different but we can use our personal experiences to help you along the way. Some people manage well with their symptoms & are able to work, while others are worse off, in wheelchairs & even bedridden. Regardless of what others are going through, no one knows how SM will effect you, most times not even the doctors know. However, never let anyone make you feel like a hypochondriac. You know what you're feeling or going through & validation from others is not needed.

Surgery of any kind is very risky, especially when the spine or brain are involved. It's only recommended when absolutely necessary but no matter what treatment options your doctor recommends, it's important to know & understand that there's no cure for SM.

Continuing researching at asap.org, and other reputable websites that others here can recommend, find a doctor you're comfortable with & find a good pain management doctor.

I wish you great success along the way.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby dingspice » Sat Jul 09, 2011 10:59 pm

Hi bdicke,

I have just found out I have a syrinx too, and I have major tingling. I actually just wrote a blog post about the electricity and jolts and whatnot. I have a neurologist appointment on Monday to discuss my MRI and then I will be talking to a surgeon. I too don't have CM, and my syrinx is C7 1.5 mm in diameter and 14 mm in length, so not very big, but still enough to make me have super bizarre sensations. I don't know if reposting blog posts and/or links is allowed, but I thought I'd post here in case it is allowed and speaks to your question.

Peace and hugs,

Jen

http://mylifemyneckmyvantagepoint.blogs ... lames.html

Why the Flames?
Why the flames in background?

I chose flames because the sensations I get from this syrinx vary, but one of the predominant feelings is burning. Burning and electric shocks. Both have been fairly strong today. I hate looking like random appendages are going haywire. That slight look I get when I make people uncomfortable is a little unnerving at first.

Having a conversation generally helps. It goes something like this:

"Hi, sorry I'm making you feel uncomfortable."

"Um, hi. Do you want fries with that?"

"Yes, please. Oh, by the way, aliens have taken over my body. Pod people, man. Pod people." [Insert my arm, neck, or leg having a violent spasm].

"Do you want to supersize your order for twenty seven point nine cents more?"

This is the place in the conversation when my brain returns from registering the weird sensation that just caused my body to do the strange muscle spasm-tick dance on my left side. I hand the nice young man my credit card and nod because we're both flustered.

Ok, I'm making up the dialog and the aliens. It does make for a more rational explanation for why my body is going haywire than saying, "Oh, no, I don't want to supersize. By the way, I have a cyst inside my spine. Have a great day."

A simple nod and eye contact can take the awkward look away. I don't talk about pod people or aliens or spines, at least not out loud. I hope I don't actually say it out loud. I'm pretty sure I don't. I think I only have these discussions with my friends, those people who know I have vampires and werewolves and whatnot living in my head, so aliens aren't exactly a stretch.

Flames and electricity are such bizarre sensations that they are the closest way to describe what this syrinx does to me.

I took a brief walk today before I realized it was hot enough to melt candles and people and whatnot. Then, THEN the jolts started in my left leg and foot. This was the first time I had jolts that were entirely independent of the neck/arm/shoulder jolts.

But hey, I can still walk. I can walk, although now it hurts to walk and I limp. I am convinced this is how the aliens mark their prey. They catch people the first time around and have a little fun with cattle prods. Then, when they actually get hungry or want to conduct medical experiments, they can find us easily because we limp from the first go-round.

Yep, that's it. That's the reason all this crazy, random stuff is happening to me.

That, or I'm supposed to learn something from all of this. I'm trying. I really am.

I think I have learned to still appreciate that I got to go on a walk. And eat ice cream. And go shopping at a big box discount store without requiring the use of a scooter or any other assistive device.

And I'm still able to type, blog, and work on other writing. Just a second ago, when I got a jolt of fire into my foot, I had to stop typing for a few minutes because the pain made my vision go blurry until the electricity stopped. This one was burning electricity, not anything that induced limb movement.

I shall be grateful that my vision came back from being blurry.

I smell a metaphor or imagery here. Does pain ultimately make me see more clearly? Is that what I'm supposed to learn? Perhaps. Time will tell I guess. Perhaps taking nighttime meds will give me greater perspective on the grander scheme behind all this.
http://mylifemyneckmyvantagepoint.blogspot.com/
Syrinx 1.5mm width, 14mm long in C7 area
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby razzle » Sun Jul 10, 2011 10:45 am

Dr Richard Jackson in Dallas
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby tennesseewalker » Sun Jul 10, 2011 1:03 pm

bdicke, those sensations may vanish on their own (WE SURE HOPE SO!!!).

Good luck and keep us posted.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby Irene Blacklock » Mon Oct 17, 2011 5:56 pm

Hi:
I just ran across your message and in case you're still checking, tingling down one side is very normal for a syrinx in my situation. I started with just tingling in both thighs. Then it went to my right arm and hand (2001). They then started checking me for MS. It took quite a while for them to find the correct diagnosis. Next I started getting tingling down the entire right side of my body, and then it would go to the entire left side of my body. At one point it was timed and I could actually time how long it would last from one side to the other, and it was consistant. It used to happen a lot. The tingling has gotten less frequent (after 10 years), however, it frequently comes with pain at the waist. I still get it on the right side and it goes to the left side. The pain level at the waist during the tingling is only a 3-4 and it doesn't happen every time. There have been other symptoms too but I just wanted to answer you about the tingling.

My syrinx is c3-c7.

I hope you have been able to have all your questions answered by now.

God bless you,
Irene
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby SageSelene » Wed Oct 19, 2011 4:31 pm

Dear bdicke,

You can check with Dr. Robert Buchanan in Austin, Texas. I know he knows about CM. I am not sure how well he knows about SM. He has several offices to make easy for you. I don't know if you are in North or South Austin. He has a clinic in South Austin on Mondays. The ladies in his office are really super nice and will talk to you if you have question before you schedule an appointment. You can google him too. He works for Seton Brain and Spine. Check him out and see if he can help you out.
SageSelene
CM1 12MM Diagnosed 4/4/2011.
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby powerlineman » Thu Oct 27, 2011 7:07 pm

I would NOT think about getting it drained unless I had the chance to get a 2nd opinion. Your insurance has to pay for it. Even if not, it's more important to get that 2nd opinion because if a doc doesn't know what he's doing you could be in deep trouble when they do anything to try and drain it.

I wouldn't put any symptom off these days as a syrinx can cause many different symptoms in all of us. I have some that others do not and vice versa.
SM only (C2-T1, T10-T12)-Cervical Post Operative Radiculopathy-Degenerative Disc Disease-Anxiety-Depression-Chronic Fatigue-Osteoarthritis-Bulging Discs (T5-T7)-Sarcoidosis-Spina Bifida
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Re: syrinx, no chiara, tingling on left side, is this a symptom?

Postby princesk8 » Fri Oct 28, 2011 10:01 am

I'm on meds to help with the tingling nerve pain. My NS told me that surgery could make things worse and we've decided to only have it done as a last resort if syrinx grows which thankfully it has not. He also said if I start falling down that would be an issue. Have you talked to your doctor about Gabapentin or Lyrica or something? Not trying to push drugs, but if it gets really bad sometimes that's the only thing that helps along with PT and light exercise to keep the body strong. I don't know what to tell ya'. Most of my tingling is on left side, upper and lower torso, left arm, rib cage and it is more than likely from my syrinx. Hope you can find some relief.
Chiari 1 7 mm & Syrinx C5-T10. Scoliosis(22 degree L & 20 degree T curve). 2.4 cm Arachnoid Cyst at lower left occipital lobe. Bulging Disk C5-C6, C6-C7 & L5-S1. Early facet arthrosis L2-L4. Mild inferior foraminal narrowing L4-S1
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