icy hot/ burning sensation in a shaw or cape dispursement

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icy hot/ burning sensation in a shaw or cape dispursement

Postby equestrian » Tue Jun 12, 2007 10:14 pm

Hey there everyone. I am pretty new to this. I have arelatively thin Syrinx from c5-t2 the largest section is @ 2mm at c6 the rest is much skinnyer. I may have a boarderline CM. My symptoms are not too bad, and I have dealt with pain a lot in my life from many broken bones training horses, so I haven't been too worried. The tingling and numbness is usually short lived and a lot of it may be from my Carpel Tunnel. all that having been said what makes me scared now is the icy/ hot/ burning feeling. The back and front of my neck and the inside of my right elbow and biscept (poor speller :?: ) are getting it the worst. It is not all the time, but over the past week or 2 it has been some every day. I hit my head on my horse's neck 2 weeks ago when he stopped at a jump and threw his head up. I felt a lot of neck pain and a shooting pain up to my rt. eye when it happened but I shook it off. That day I coinsidently met a NS who is a friend of a friend and nonshallontly (poor speller) told him I had a Syrinx. He said I needed to get an MRI asap. It had been 4 yrs. On the one 4 yrs ago the Syrinx was mostly at c6. Could the little riding incident 2 weeks ago have caused a flare up in the icy hot feelings, or should I really worry that it is going down hill fast. Fortunatly, so far, I do not live on pain pill. I may take 600- 800 mg. ibuprophin 1 x a day or 1 x every 2 days, so I am doing pretty well. Does anyone else deal with this same symptom, and if so do you have any suggestions for making it go away or for dealling with the sensation. I feel like I have Tiger Balm on and all I want to do wash it off!!!! Hey on the bright side I won't have to spend a fortune on Icy hot, Bengay or Tiger Balm! :)
thanks so much for any inside! God bless and love to all!!
-Lisa
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Postby cash71 » Tue Jun 12, 2007 10:49 pm

Hi Lisa,

I don't have the same symptoms but I do get a lot of back pain and have had for several years. Mine is a deep burning pain which I believe is nerve pain. And yes your little "accident" could easily have caused a flare up in your symptoms. sm is very unforgiving. You need to try and avoid activities with a high probability of injury to your head a neck. This could cause your syrinx to expand a lot faster and you wouldn't want that.

I'm not on any pain meds either mainly b.c nothing has worked so far that I've tried. I do have an upcoming appt with a pain management doc though. Things that have worked for me. Modifying my life style.(keep a journal of symptoms and activities so you can identify triggers and patterns for yourself), improving my posture(honest, it's really made a big difference) and acupuncture.

Don't know if any of this is helpful but thought I would share what has worked for me.

:D Caroline
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: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby equestrian » Mon Jun 18, 2007 6:33 pm

Hey Caroline,
Thanks so much for writing. Sorry I have taken so long to post back to you. I have been out of pocket for a bit. I agree posture and accupuncture both help a lot. As soon as I was allerted to the severity of my condition (4 yrs. after the original diagnosis) I stopped riding. It is very hard though as the horses are like my children. I was an olympic level rider and now I am facing not riding and selling my horses. I have to say God it good though, because He is giving me the grace to accept my situation and to look for ways to make lemonade out of lemons. I hope and pray I will one day be able to trail ride again on a very quiet horse as my husband and I fell in love with camping with horses last year.
All the best to you and thank you for writing,
Lisa
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Postby mac » Mon Jun 18, 2007 8:44 pm

Hi, Lisa...good to see you again. I'm sorry you are experiencing these symptoms. As Caroline said, YES, the bonk on the head most likely caused this flare up, and so you want to avoid any jumping! When I broke my neck, my NS told me no more jumping ever, "it's too hard on your spine." I know it must be very hard to give it up, but you sound like you have a lot of faith and a good attitude about it.

As far as alleviating the symptoms you have now, I hope some folks out there will make some suggestions. I would recommend the soft foam collar as something that might lessen your symptoms. And lots of rest as much as you can.

I'm sorry you are going thru this!

yer horsey friend mac
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Postby cash71 » Mon Jun 18, 2007 8:50 pm

I find it really interesting how many "horse" people there are here. Hmmmmm...... We had a farm and I rode horses from the time I could walk all the way until I was 20 and moved away from home. I did three day eventing (on a local amateur level) and rode almost everyday for most of my young life. I had several very naughty ponies and I broke several horses as I got older. I have been kicked, bitten, bucked off, thrown off, launched, knocked off on trees etc etc. I actually feel very blessed to be alive when I look back on it now. I'm sure this could not have been kind to my spine. Add to it a motor cycle accident and two car accidents and I some time wonder if I'll every really get to the bottom of what caused mine and what to do about it.

Anyway, I was just wondering if horseback riding puts us at an increased risk for this.

Caroline
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: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby equestrian » Mon Jun 18, 2007 8:57 pm

hey mac!
That jumping thing happened the day I ran into a Neurosurgeon who told me I needed to get an MRI. I have not ridden since. That was @3 weeks ago. I have been watching a bunch of the videos from TCI and find them so helpful and interesting. I've been pretty good at reading my films, but now I really feel I can read them. I have been very blessed to have had little or no symptoms for the past 4-5 days. I hope you are well. Do you go for surgery some time soon? I would love to go to TCI and get a full work up, but I am afraid it would cost way too much. My husband's job possition is being terminated at the end of Oct. so he has to find a new job, and the industry I am in (land developement/ real estate) is taking such a hit I fear my company downsizing and me being the one to go now that I have this medical issue which could become a liability for them. Well, I just have to put it all in the Lord's hands and appreciate each day. Tell me more about your gardens, do you have photos? Does it not hurt your neck to look down all the time? That is one of the things that kills my neck.
All the best.
Hugs,
Lisa
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Postby mac » Mon Jun 18, 2007 10:21 pm

Hey there...Caroline, Tidbit is also an equestrienne, and Kathymichelle grew up riding a lot of horses. As the NS told me, jumping is very hard on the spine. But oh what fun! We are blessed to have had the chance, ya know?

Lisa, I'm glad you quit the riding, I remember you told me you did but I was mistaken and thought that was a while ago and then I thought you cheated and was back jumping (oh dear!). My mistake!!

No dates on surgery yet, I have an appt on June 25 with the hematologist that should give me some sort of an idea. One result from the tests he took would mean I'd never get the surgeries...the other result will mean I can, and I will need to start the bone trx...and then when WC authorizes the urodynamics, after that result, I'll "book" the TC surgery. It's all so complicated!

Garden growing well. I just go out for under an hour at a time and "putter." yes, I get pain at back of neck, but try to remember to wear my collar, that helps a lot. The garden work really distracts me and seems to have replaced the horses, something small I can do a little bit of. It's a blessing!!

Is it getting hot in Georgia?

hugs
mac
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Postby Gracie Rose » Tue Jun 19, 2007 1:31 pm

Hi Lisa,

I am Lisa too and a horse-gal !! I and most of our children have ACM and one has a syrinx. I am a patient at TCI but our little guy see's Dr. Ellenbogen and he says the cape-like distribution of pain is one of the symptoms that has been recognized all along with a syrinx. It's a classic symptom as opposed to all the newly recognized ones.

I too have it and it is so strange. It goes down to my elbows and upper back and lower neck in front, hence....cape-like name.

You really do need an MRI to see what is going on in there. Anytime symptoms ramp up there is a need to re-evaluate.

Good luck to you,

Lisa
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Postby petsmom » Thu Jun 21, 2007 6:29 pm

Thanks for that info on the cape effect!!! I was telling my neuro today that the cape has gotten bigger and more intense. Not sure that he is much of a expert on SM but did order new MRIs.

I learn something valuable here all the time.

Dawn, TNgal
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
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Postby equestrian » Tue Jun 26, 2007 10:12 pm

my burning tingling feeling is now in a number of localized spots like my right elbow, the back of my rt. underarm, the back left side of my neck , my rt. eyebrow and behind my left ear. It is so weird and frustrating. Sometimes it really burns! The more stressed I am the worse it is. Unfortunately I am in a very stressful job, and have the added stress of my husband needing to find a new job by Nov. 1st. (as his possition is being turminated.) I really want to find a line of work where I could work from home some. I could make a living running my own business, but I have to have insurance through a company (I believe) in order to cover pre-existing. I hope my husband gets a good job soon so I can get on his insurance. All that having been said (sorry for going on and on) does anyone else experience this symptom getting worse with stress? And is there anything you know of that helps with this burning/freezing sensation?
bless you all!!
Hugs,
Lisa
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Posts: 16
Joined: Mon May 28, 2007 8:03 am

Postby equestrian » Tue Jun 26, 2007 10:13 pm

my burning tingling feeling is now in a number of localized spots like my right elbow, the back of my rt. underarm, the back left side of my neck , my rt. eyebrow and behind my left ear. It is so weird and frustrating. Sometimes it really burns! The more stressed I am the worse it is. Unfortunately I am in a very stressful job, and have the added stress of my husband needing to find a new job by Nov. 1st. (as his possition is being turminated.) I really want to find a line of work where I could work from home some. I could make a living running my own business, but I have to have insurance through a company (I believe) in order to cover pre-existing. I hope my husband gets a good job soon so I can get on his insurance. All that having been said (sorry for going on and on) does anyone else experience this symptom getting worse with stress? And is there anything you know of that helps with this burning/freezing sensation?
bless you all!!
Hugs,
Lisa
equestrian
 
Posts: 16
Joined: Mon May 28, 2007 8:03 am

Postby equestrian » Tue Jun 26, 2007 10:14 pm

my burning tingling feeling is now in a number of localized spots like my right elbow, the back of my rt. underarm, the back left side of my neck , my rt. eyebrow and behind my left ear. It is so weird and frustrating. Sometimes it really burns! The more stressed I am the worse it is. Unfortunately I am in a very stressful job, and have the added stress of my husband needing to find a new job by Nov. 1st. (as his possition is being turminated.) I really want to find a line of work where I could work from home some. I could make a living running my own business, but I have to have insurance through a company (I believe) in order to cover pre-existing. I hope my husband gets a good job soon so I can get on his insurance. All that having been said (sorry for going on and on) does anyone else experience this symptom getting worse with stress? And is there anything you know of that helps with this burning/freezing sensation?
bless you all!!
Lisa
equestrian
 
Posts: 16
Joined: Mon May 28, 2007 8:03 am

Postby equestrian » Tue Jun 26, 2007 10:14 pm

my burning tingling feeling is now in a number of localized spots like my right elbow, the back of my rt. underarm, the back left side of my neck , my rt. eyebrow and behind my left ear. It is so weird and frustrating. Sometimes it really burns! The more stressed I am the worse it is. Unfortunately I am in a very stressful job, and have the added stress of my husband needing to find a new job by Nov. 1st. (as his possition is being turminated.) I really want to find a line of work where I could work from home some. I could make a living running my own business, but I have to have insurance through a company (I believe) in order to cover pre-existing. I hope my husband gets a good job soon so I can get on his insurance. All that having been said (sorry for going on and on) does anyone else experience this symptom getting worse with stress? And is there anything you know of that helps with this burning/freezing sensation?
bless you all!!
Lisa
equestrian
 
Posts: 16
Joined: Mon May 28, 2007 8:03 am


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