Im 30 yr old and have been with my Husband for 14 yrs and married for 7 yrs and have the best 9 year old daughter ever.. I was diganosed in 2010 with Syringomyelia ( A rare spinal cord disorder) and also just diginosed with Small Nerve Fiber Neuropathy, (And prally more wierd stuff i dont know about yet) lol... Im just trying to figure out how to live my "New Life" with these terriable conditons. I need to vent and try to get some answers so I dont feel so alone!

These are the results of my latest MRI don in Feb 2012..

The Brain: it says History: Syringomyelia brachial neuritis, Mild increase in the left mastoid air cells.. what ever that means.
The Crevical: demonstrates an oval shaped syrinx at c6 level with an ovoid lesion, extending to T1. A more linear shaped syrinx is seen extending into the thoracic cord. the ovoid syrinx is 4cm x 8mm. At c6-c7 central canal and neural foramen are patent. At C7-T1 anterior to the T1 vertabrel there is a cyst measuring 2cm x 1.5 cm lying on the right side of thr trechea. the cyst is not contious with the nerve root suggeting a perineural cyst or meningocele. This may represent a laryngocele by its location.
Thoracic: There is Syringohdromyelia in the lower cervical spine. it extends throughout the thoracic spine and ends at the level of the conus medullaris. the syrinx is most prominiate within the loewr cervical and within the lower Thoracic extending from T9 to T12 and measures 4mm & 8 maximal AP dimention by 6mm in maximail diemention. There is a rounded structure witch is hyperintense on T2-weighted imaging on the right neck base, anterior to the T1 vertebral and just to the right of the trachea. this measures 1.6 x 1.1cm . this may represent a brachial cleft cyst or laryngocele. Spinal Hemangioma is noted at T11 and T1. There is Syringohdromyelia in the lower cervical spine. it extends throughout the thoracic spine and ends at the level of the conus medullaris at L1 level and with at least 2 focal regions of localized dilatation.
Lumbar: There is a transitional vertbral segment, designated as L5 demonstrating partial sacral morphology as on axial. Utlizing this nomenclature, the conus medullairs terminates at the L1 level at the lever of the inferior endplate.
The QSART: Sereve Small nerve fiber Damage..

Ive had 10 MRI's in the lasr year 1/2, 2 emg's and lots of blood work. Ive been suffering from Severe paralyzing Headaches, severe back pain, Neck pain, my whole left arm is pins & needles and my thumb has been sowllen for about a year now, just recently both of my feet hurt and burn soooo bad.. I walk with a cane and some days I can even move at all.. I was told that if I were to do the surgery (Shunt) I think, there would be a 50% chance I would lose all feeling from the neck down so thats just not a option for me. I am utterly exausted all the time.. Damn this is hard!! Ive tried every medication that they usually give people and the side effects are just too much.. I just dont what to do anymore!!!

Thanks for listening to me vent

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You really are dealing with so much. I wish there was something I could say that would be of help. I'm sure there will be posters with more experience with some of your problems. You have every right to vent. I am amazed at having had so many MrI's.

I had lumbar fusion and laminectomy L4-5 a little over 5 1/2 years ago. The meds unfortunatly cause constipation. Eventually, had Bladder and Bowel surgery due to the constipation. I now take laxatives daily to avoid letting things get too far.

Also, have PN. The burning feet and ankles are the worst. Although the legs are painful as well. I take Oxycontin and Oxycodone prescribed by my Pain Specialist. Don't like being on these meds, but am dependent on them to live with less pain. Without them; would be even more difficult. I use a cane as well. Helps balance problems. Also, when people see a cane, they usually are a more patient when moving slowly. My Pain Specialist did get a Placard for handicap parking. While I have not been driving these past few years, it allows my husband to park closer and walk with me.

Not sure any of this info will be of much help for you. People here on NT are so caring and encouraging with one another. It is a good place to come and vent, as well as some encouragement on more beneficial ways to deal with your problem.

Wishing you solutions that will ease you into a more comfortable lifestyle.

Gerry

i have syringomyelia i was diganosed at the age of 6yrs old i am sufering more now than ever all you can do is go to your doctor i am trying to find one now talk to me any time we can support each other