Symptoms

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Symptoms

Postby ocset1 » Sun May 20, 2007 10:52 am

Hi I am new to this site and fairly newly diagnosed with Syrinx. Coming from England our health system seens to take a long time to get MRI'S etc.I was told in December that I had this problem. I am currently waiting for a further MRI using a dye and an appointment with a neuro surgeon(been on list since January) I do know that I have a significant syrinx in my mid thorasic spine. I am confused as to what symptoms are due to this or just coincidence. I get a lot of symptoms in my hands/arms but have been told that because it is in my thorasic spine it can not be causing it. I feel that it is. What do you find? Is it possible? The symptoms in my feet are increasing and I have now started to get a strange back pain in the thorasic area.Could this be the syrinx? I am sorry to ask so many questions but this is the first time I have been able to ask others who suffer too. I work as a nurse and have been told there is no need to change ones livestyle however I am concerned that lifting or straining could make it enlarge. Your veiws are greatly appreciated. I also get a lot of neck pain and headaches I don't think I have CM could SM cause this? Thanks for taking the time to read this. I really enjoy reading the forum and your advise would be good.
Thanks. :roll:
ocset1
 

Postby cash71 » Sun May 20, 2007 11:00 am

Hi and welcome to the site.

I am in Canada so I can relate about wait times. It is about 6-12month wait for a semi-urgent MRI and up to 2 years for a non-urgent one. Its crazy.

I have a syrinx form C3-T9 so its kind of difficult for me to answer about what is due to the thoracic segment. I do get muscle spasms in my hands and numbness and tingling and have been told that my cervical portion of the syrinx is too narrow to be causing any symptoms.

I have had a lot of back pain and actually that was my initial symptom. My pain is a dull burning pain right on my spine in my thoracic area and radiates out into my neck and shoulders. In certain literature pain from a syrinx is described as "cape-like"

Most here have been told by experts in the care of sm/cm not to lift anything that you have to bear down to lift or about 10lbs for the average sized person. Any heavy lifting increases your intracranial pressure and can cause your syrinx to grow.

You should listen to the video about syringomyelia on www.thechiariinstitute.com. It explains this well. Just go to the videos section

Hope this helps,

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 hartagold23 » Sun May 20, 2007 11:48 am

Hi, ocset1,

Welcome to the site.

I have a syrinx from T2 to the conus (bottom of spine), and I get numb hands/fingers when I lift them. My MRIs don't show any Chiari or syrinx in my neck, but they did show that I have a bone spur in my neck, so that is what is causing my hand problems (the bone spur presses on some nerves leading to my hands). So, perhaps you have bone spurs or something else going on in your neck that could explain your symptoms. That is where the hand/finger nerves begin. So, I'd ask the doc what kinds of things might be going on in your neck, since you say you don't have a syrinx there. There may be disc problems or bone spurs, etc.
Almost all of my symptoms are from the waist down (weakness, partial paralysis, bladder incontinence, numbness).

I wish you the best in the future with these problems.

Barb
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!
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Postby ocset1 » Sun May 20, 2007 1:41 pm

Hi Thank you for your replies. Having difficulty watching the video you suggested I'll try again tomorrow.
I do have a small disc prolapse at the top of the syrinx (think this may be the cause)but that is still within the thorasic spine.
I expect only time will tell and I will just have to wait for the next MRI (if they check the C spine)Any advice on helping with the clostraphobia while having scans?
Thanks again.
ocset1
 

SYMPTOMS

Postby spongeblobone » Sun May 20, 2007 2:12 pm

Hi,
My daughter is 8 yrs old. She was diagnosed 6 weeks ago with syringomyelia. We live in Somerset.
She got up 10wks ago complaining of severe pain in her back. She had a MRI scan at our local hospital. they did the quickest mri scan possible as she had to lie on her back, she is in absolute agony if she tries to lie on her back, they gave her morphine and she still couldnt lie on her back!
The scan was long enough to show she had a syrinx in in the thoretic region of her spine 6mm wide between T6 and T12.
2 wks after the back pain started her legs started getting painful. She was sent to Frenchay in bristol where they did a 1hr mri spine and brain scan under a general anaesetic.
My daughter has been using a wheelchair now for nearly 2 months. She is in constant pain, takes carbamazapine, amitriptyline, codeine, ibuprofen, and paracetemol.
The consultant has told us this week that tehy arent treating her surgically as she has functional pain. which means that because the syrinx grew and compressed on her nerves the pain recptors are permently switched on. They need to leave her for a few months to see if the nerves settle down.
She is having a repeat mri scan in 2 months and a repeat sensory evoked potential test also, this was abnormal 6 wks ago!
I don't know if all this is of any help to you, but if you want to contact me, please do not hesitate!
best wishes
sarina
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Postby ocset1 » Sun May 20, 2007 5:12 pm

Hi
Thanks for your reply. I'm sorry to hear about the problems your daughter is having.It certainly puts my problems into perpective, and I appreciate how lucky I am. I hope she finds some relief soon. It must be very worrying for you.
This forum is very good and its nice to know there are other 'Brits' out there.
Regards.(P.S I live in the south east)
ocset1
 

Postby cash71 » Sun May 20, 2007 7:48 pm

Hi, just thought I would add this info from a website I just found about spinal nerves. If you click on the portions of the spine that you are interested in it tells you what areas of the body this segment of spine innervates.

Interestingly, it mentioned that areas in the thoracic spine innervate surface sensation to the arms below the elbows, hands and fingers. I never knew that before!

http://www.echiropractic.net/nervechart.htm

Hope this helps,

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 hartagold23 » Sun May 20, 2007 9:22 pm

Hey!

About the claustrophobia in the MRI, well, I just had a long MRI and I have both anxiety and pain. They gave me something called Versed for sedation and Fentanyl for pain and these together worked wonders! I was able to nap comfortably and wasn't worried about a thing. You might want to ask about those meds.

Barb :)
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!
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Postby Moemkate » Sun May 20, 2007 10:56 pm

Hi guys I'm also a brit. Was born in the North and came here to Ohio in 1965. My family still live over there so I know how the health system works. Slowly. Good luck with all your going through. This is the right place to be for info. Everyone is so helpful. Kay
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Postby ocset1 » Mon May 21, 2007 1:38 pm

Hi again
Thanks for that website link - very interesting.
This will be my third MRI so I should be getting used to it, but if it lasts longer that 45min I may well ask for sedation. Thanks for the tip.
Kind regards to all.
ocset1
 

Newly diagnosed with a syrinx

Postby bradalee » Tue May 22, 2007 4:37 am

Well, I just had my second MRI. This one was done with a contrast die and the results are that I have a 7mm syrinx at the C7 area. :( I have been having shooting pains that start at the base of my skull and flow down my shoulders, followed by a pressing stiff feeling roughly at the C5 to C7 area of my neck. Nothing seems to help the pain, and eventually I end up with a headache that goes all the way to the front of my head leaving me usless for several hours. heat? cold? any suggestions!?
Another symptom I have been having is my hands and feet get these numb, tingley sensations after laying in bed for around 20 mins. Its kinda like pins and needles, and it has been happening for a year now. I have also been experiencing muscle spazams on the outside edge of my hands. I's like it shoots down my arms and the muscle spazams down my hand towards my pinky.
I am so tired of my feet tingling. Stretches? Is there anything that anyone has found that helps the tingley feet go away?
Until now I have had zero answers other than "it's all in my head". Well I finaly got tired of my doctor ignoring my complaints and telling me how I am feeling. Apparently I dont know my own body!! Or at least when somthing is wrong. So I got a referal for a new neurologist and now I am waiting to get the MRI's. Here I am lost, confused, scared, and ignorant about my new dilema, and my new doctor has been little help!
I am in pain constantly and it is getting worse and worse. I am starting o get very worried. The Radiologist said my MRI was clear of any bone spurs, degenerative loss, or bulging discs.
I live in Seattle, WA and I am in search of a second opinion. Is there anywhere up here that specializes in this? Please help!
Thanks for your time. I am sorry to know that you all are suffering, but I am glad that I have finally found people who understand what I am going through. I am sorry this is so long, but my excitment in finding this site just came pouring out. I can finally tell my story to someone who will understand.

Brad
Seattle, WA
USA
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Postby kiminfla » Tue May 22, 2007 5:39 am

Brad, If you look on this site at the Medical Advisory Board you will see the contact info for Dr. Ellenbogen in Seattle! It's definitely a good idea to get to the experts. 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
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