syrinx

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bizeemom

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Im a 39yo female with a newly diagnosed syrinx. I was in a car accident and began experiencing nurabness and tingling in my left extremities. Initially my MD ordered an EMG which revealed nerve damage; then an MRI in which a 2cm syrinx at C3-C4 was found. I was referred to an orthopaedic who viewed my films, examined me, and stated, "you have abnormal reflexes and need to see a Neurosurgeon." I haven't slept a whole night since. This has been over a period of the last 2mos, and I see the Neurosurgeon this week.

After reading your postings describing your symptoms, I can now attribute all of my recently experienced symptoms to the syrinx. The painful, "aneursym"-like headaches, shoulder and neck stiffness, and the feel of heaviness in my upper extremities. I've taken anti-inflammatories and pain meRAB, but nothing has helped. All I'd like is a definite prognosis and a plan of care.

Please give me a brief summary of this diagnosis and what you know about surgery, progression, helpful medications, etc.
 
I was just looking over your thread. I am in san antonio also. ****REMOVED**** I am 4 months post op after shunting a syrinx in my upper spine. I know I have to go through the surgery two more times, because I have two more syrinx. I can tell you whom I saw and whom I would never see again. I can let you know pro's and con's. But remeraber your experience will differ from mine. Good luck. hope to here from you.

Jaime
 
I am scheduled to see a neurosurgeon on Tuesday. The surgeon is with the UT Health Science center, hopefully not the doctor that you would never see again. I would appreciate it if you could share with me whom you did see. Also, any information you can provide about the surgery would be great. Did they find what caused the syrinx's? I would prefer to go into this with as much information as possible. My syrinx starts at c3 and runs to the end of the spinal cord with no known cause at this time.
 
I'm new to this message board...I found out two weeks ago that I have a syrinx (possibly two) and that this is what has been causing the pain in my arms, shoulders and neck. Yesterday I had another MRI with contrast to check for a tumor. What I have read about Syrinx's looks pretty scary. I am a single mom with two young children and feel that I am feeling worse by the week. It all makes me nervous. Any advice or information from anyone?
 
Hi DBowman,

My syrinx is in the lurabar region, and I was also very scared when I first learned I had one. But it turned out that in my case it was not the syrinx that was causing my pain, but the tethered spinal cord and disc problems. The docs say that the tethered cord is the cause of my syrinx.

The first thing you want to do is find a specialist in your area, usually a neurosurgeon. That is the hard part - they are few and far between. So many people search for years before finding a doctor, and they often have to travel a bit. I was lucky and found a specialist within an hour of where I live.

When I first found out I had a syrinx, I started reading all I could ****REMOVED****

Try not to panic (although I know I did). There is such a wide range of effects of a syrinx and most of the people I have met online are much worse off than I am.

Good luck!
 
I have heard good things about a Dr. Richard Jackson in Dallas. I really hope you get to see a neurosurgeon who is experienced with syringomyelia (sm). My PCP knew nothing about this condition and also tried to send me to an ortho. Luckily my insurance is a PPO, so I was able to consult with whomever I wanted.

I found that I really had to advocate for myself to get the right info and treatment, and that is quite common for those with sm. Ask for copies of any reports and tests (MRI, CTscan, etc.) as well as doctors notes. I found that my doctors left out a lot of important info when conveying test results to me. I was shocked when I got a hold of my MRI report of how much info was withheld from me.

If a cause cannot be found for your syrinx, shunting might be an option but this can lead to complications as well and so is usually a last resort. Sometimes surgery is not an option and pain management is the course of action.

Good luck with your appt. and let us know how it goes.
 
My PCP has given a referal for an orthapedic surgeon, however, everything I have read implies that I really need to see a neurosurgeon. What type of doctors have you seen?

I am hoping to have answers tomorrow as to what is causing the syrinx and want treatment asap. I am 34 and feeling like an old lady!
 
I would like to start a chiari/ syrinx support group for the San Antonio area. Something that addresses families aslo. They go through as much watching everything that is happening. The burden can be hard, both emotionally and financially. I know there are at least 3 of us here. Probably more. Dr. B:mad:ogaev did the shunt to the syrinx. Personally he is great and has a good bed side manor. However, he is not a big believer in chiari. Kind of an old school guy. I also saw Dr. Swan. Hated him.

I am excited! I just got an appt. w/Dr. Oro, in Colorado. I will let you know how that goes.
 
I too am in San Antonio. I was just diagnosed last week with a syrinx in my thoracic spine. Any recommendations on Neurosurgeons would be much appreciated.
 
Relax... Take a big breath! It is all very over whelming at first. Inform yourself about everything you can. Don't let all the information scare you, it can be a lot at first. Remeraber, just because you read all the symptoms doesn't me it is you. Each person is different. As you are reading, think to yourself, "oh, now this all makes sense". If you want to talk put an ad in the San Antonio craigs list under groups. I will look there. I am aslo a mother who felt nervous and scared when I got my diagnosis. Everything will work out! have faith.

Keep your head on straight :angel:
Jaime
 
Yes, you need to see a neurosurgeon with experience in syringomyelia. Not all neuro docs deal with this, and hardly any orthopedics are that familiar with treatment of it.

I first went to an ortho when the pain started. He knew nothing about the syrinx or other spinal issues I had that were neurological in nature, and you will find that most don't. Then I went to a neuro that specialized in spine, and finally a 2nd neuro spine specialist at a nearby university that was one of the few that actually deals with syringomyelia on a regular basis.

The process of finding the right doctor for treatment of a relatively rare condition can be a very frustrating one. It certainly was for me. In fact just getting the appt. for the initial consultation with an expert was extremely difficult and took several months. But you can save yourself a lot of time and headache if you can try to find a doctor that specializes in syrinx from the get go. Usually the syrinx itself is not treated - the cause is determined, and then that is what is treated.

I really sympathize with the position you are in and hope you get some answers and relief soon.
 
Syrinx have to be treated by a specialist. Usually it is a neurosurgeon who has dealt with people that have Arnold Chiari Malformation 1. Go to the website: asap.org. This forum has a vast amount of information regarding syrinx. Syrinx are caused by external pressure somewhere. DO NOT have any surgery until you see a specialist for Syrinx.
 
Thank you for the response. My doctor call me last night and advised that there is not a tumor (thank goodness), however, the syrinx spans from c3 throughout the thoracic. He stated that it is basically covering my spinal cord. He is still persistant about me going to an orthopedic :dizzy:
 
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