Newly diagnosed syrinx

Question

I have just been diagnosed with a syrinx in my thorax and everything I read is frightening me as it projects chornic pain for my future. I have not yet seen a Neurosurgeon. I have an appointment in a few weeks. I do not know what is causing as my general practitioner only picked it up by accident. I have already been suffering with neck and shoulder pain with about 3 years with some numbness in my hands. I'm scared silly by it all.

TinyRN · Accepted Answer

Being down your road before it is freightening. I had a doctor happen to stumble upon it because I felt like someone hit me upside my head and it was the worst pain I have ever felt. I couldnt get in to see any doctors and I did not have a primary at the time because I was 25 years old and thought I didnt need a doctor (and I am a nurse, go figure). I went to an urgent care and they happened to do a total work up and found out that I had it after 3 months of having my son. I went for several different opinions after being scared to death from all the forums I was reading and the posts. It was very scary and very Depressing to say the least. I was having numbness from my syrnix (related to the Chiari) and I was commonly dropping things and having numbness in my arms and legs that I related to pregnancy but after I dropped the weight I knew it was something else. My memory started to play a part and I was saying things differently from what I was thinking like my mouth had a mind of its own and it was embarrassing to say the least. My syrnix was from C1 to T5 ish and it was compressing on my brain stem slightly that was causing me dizzyness and problems with my motor functions and the headaches were severe almost like nothing would touch them. I def would say to follow up with a specialist if you are able to and have the MRI of your brain completed to make sure it is not related to any other brain comorbidities. But as far as surgery goes I was scared to death of having it and after seeing Dr Levi in Miami FL I felt more at ease. I was looking at forums that told me I could never have children again and it killed me inside. He assurred me I would be able to and generally in 90% or more of his cases the problems resolve about 75% or more. He did tell me if I didnt recieve it though that I would progressively would get worse and that due to the rapid progression I could have been projected to be paralyzed within the next couple of years. With a new baby that was enough for me to say you know what I deserve a change at a healthy pain free life for me and my child. I did it in May and I only have occasional dizzyness, neck pain and headahces (which I might say rate no where near the pain scale on the previous ones). Definetly look into your options and seek advice from a specialists. I wish you all the best. and please let us know how you are doing.

Sarah

Mel5056 · Answer

Good to know my chiari obsession will be calming down :-). I am like you...give me some facts so i know what decisions need to be made.  My fear is being told i need to take a lot of meds.   I hate medicine.   Before i knew i had this i was taking motrin for,a pinched nerve.   I think i was masking other pain because of the motrin.  When i stopped taking it i was like what are these headaches?  Never knew i was having them until then.  Anyway we are,doing the right thing just wish it was faster.

Spotjeff · Answer

The New MRI studies are of the entire spine and the foramen magnum. I have the MRI CD from my last MRI and the hospital will give me the new one too. The particular MRI unit I go to always does.
The specialist I saw was a Neurosurgeon.  He seemed willing to listen anyway I'll keep you all posted on how I get on. Thanks for all the prayers
Mel the waiting for the appointment is the worst part as your mind goes into overdrive expecting the worst. Now that I've been seen I feel not as frightened as I feel something is being done even if it is just more tests

Mel5056 · Answer

Hi there,  so did you see a neurologist or surgeon?  I dont have appt till april 22 and was wondering what to expect.   I have dizziness too and have started getting leg weakness which i never noticed before.  Do keep us posted...praying for you.

rod44 · Answer

Hi.
Do you know what spinal level the Syrinx is at?
Try and get a copy of your MRI CD from the hospital.


Ray

selmaS · Answer

May I ask what area the MRI studies are of?...just curious which direction ur Dr is going.....

 I know this part is very frustrating as we hurry up to see a Dr to be told to wait for this test or that....

 Being a patient requires patience.....<3

Spotjeff · Answer

Saw my specialist today and he has referred me for further MRI studies. He said that so far very little damage has been done to my spinal nerves and that my reflexes are all still intact which is good news. I'll keep you all posted on how I get on

Spotjeff · Answer

Thanks for the support. I will let you know how I get on.

Spotjeff · Answer

Thanks for the advice and encouragement. I'm feeling a bit more positive having read your comment. I too am experiencing a lot of the same symptoms that you describe. I will let you know how I get on. Thanks again for the support

selmaS · Answer

Oh Ok....a syrinx is similar to Chiari in that they both can be  congenital or acquired.....this is why I asked about  an injury.....

 Ur Dr should be able to tell u if urs is congenital or acquired....

 Do keep us posted on what u find out.

Spotjeff · Answer

I've just had the spinal MRI. I presume when I see the neuro that he will order the brain MRI. I've never had an injury or anything that I know of that would cause it

selmaS · Answer

Hi and welcome to the Chiari forum.

 May I ask which MRI u have had so far, was it just a cervical spine MRI?

 Wondering if u also had a brain MRI as well?

 And do u know if u had an injury to that area?...or had a fall or in a MVA that may have contributed to the formation of ur syrinx?

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