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I am so scared right now.....I really need some help!!

AnonymousUserAAnonymousUser Posts: 49,000
edited 06/11/2012 - 8:32 AM in Neck Pain: Cervical
I am a 34 yo father of the world's most wonderful and amazing 2 1/2 you little girl. I had a MRI done on 5/6/09 due to arm pain from what was later identified as herniated disc at the C5-6. On my MRI impression my Radiologist noted that there is a syrinx at my C6 and it is 5mm long and 2.6 mm in diameter and that he feels it is "clinically insignificant."

My wife and I had an appt with a local neurosurgeon on 5/24/09 to discuss treatment options for my herniated disc. He reviewed the MRI with us and showed us the herniated disc and casually mentioned the syrinx. He said "this is not a problem now, but could be in the future." My wife and I exchanged quizzical glances at one another and asked him about it, but he just continued to move on to treatment options re: my disc. Which consequently is going to require surgery. I had a 2nd opinion by another neurosurgeon in another part of our state (Maryland) and he to was not all that concerned with the syrinx. Consequently, he is recommending surgery for the disc herniation as well.

For the past month and a 1/2 I have been dwelling on the dicectomy that I am going to have and have been ignoring the syrinx thinking it is not a big deal. However, something the 2nd neurosurgeon said really got me wondering and doing some research. I asked him if he could just remove the syrinx when he did the discectomy since he was already going to be inside my neck. He stated that the syrinx is inside my spine and in order to do that he would have to cut my spinal cord open. Now logically ANYTHING inside your spine that is not supposed to be there is a bad thing. So I started doing some research online and what I have discovered has absolutely scared me to death!!!! It appears that since I have this syrinx, I now have Syringomyelia. It is asymptomatic right now, but it appears inevitable that it will grow, elongate and cause me horrible debilitating problems in the future. The Radiologist was passe' when he spoke about it during my MRI results session with him on 5/6/09. He casually said that it is most likely something I was born with and was an abnormality. No real concern in his voice.

Am I over reacting to this syrinx or am I dead on in my fears and concerns for my future. I am sitting at work right now shaking so bad because I am upset that I can barely type!! I am grieving for my future and the life I wanted with my daughter and the planned additional children my wife were going to have. I don't know if it is fair to have additional children if the burden of caring for them could possibly fall solely on my wife. I am upset over the fact that treatment for this disorder appears very sucky at best with not a lot of hope for a normal quality of life. This is NOT how I envisioned my life being and how I would spend my future in pain and with back surgery after back surgery. I dont want to stop working!! I don't want to have to limit my activities! I want to coach my daughter in sports, I want to ride bikes with her and teach her to ride a horse and throw a baseball and shoot a basketball. I don't want to be a burden to my wife! I want to live to see my grandchildren and enjoy them!!! I am so upset right now I could just cry, in fact I am tearing up as I try and type.

I was dreading this discectomy surgery so much and fretting over the dangers of it, but it seems like a "walk in the park" compared to what I am potentially facing right now!!!

Today I have re-scheduled an appt for 1pm to speak with my Radiologist about the MRI and the syrinx finding additionally I have contacted Johns Hopkins for a consult. Initially, I was going to go there for a 3rd treatment opinion on my herniated disc, but now it appears it will be to manage a possible Syringomyelia disorder.

You know I refuse to let this alter my life, I am a fighter and a survivor!!! But I am so crestfallen over the possibilities that face me, right now I do not know how much ego strength I have to face this battle. I am scared to death and beyond upset!! ANY thoughts, advice or experience anyone could add to this would be of comfort and beneficial.

Thank everyone in advance for their time,
Gracie's Dad
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1

Comments

  • Welcome to the forum. I have had 2 surgeries ACDF with fusion for herniated disks. I am having a 3rd one done on July 23rd (the 1st fusion didnt heal). Its not really that bad. Take a bottle of chloraseptic for the sore throat and remember that it should make the arm pain and some of the other symptoms you have go away. I am also an "internet junkie". I research everything I can find. Listen to your doctors. If this syrinx was a major issue, I'm sure the doctors would discuss the options with you. I know its hard but try to take life one day at a time, and deal with the surgery at hand. You need to heal from that. Its great that you got a second opionion, but if the doctors think it may have been there your whole life, maybe it isnt something to worry about just now. Good luck to you with your surgery. I hope everything works out. Also remember that your family is there for you for better or worse, and Im sure they will help you through anything that comes up. Take Care,
    Cindy
  • wow! what a dilemma. i would be worried myself. but, you stated 3 professionals that have discussed it with you do not seem to be overly worried about it. and you said yourself that is is asymptomatic at this time.... while it is understandable to be worried about anything in your body that is not supposed to be there, one of my favoritest supervisors told me once "the things you worry about most in life, never happen". so, i worry about everything, that way, nothing happens!

    it's akin to finding out late in life you have slight scoliosis in your spine. ow! now all of a sudden it hurts. of course, a syrinx has the potential of causing difficulties on down the line more than the scoliosis i guess...



    according to the merck manual, 18th edition:

    "surgical decompression of the foramen magnum and upper cervical cord is the only useful treatment, but surgery usually cannot reverse severe neurologic deterioration." if you are interested in reading more, here is the link:

    https://www.merck.com/mmpe/sec16/ch224/ch224j.html

    so, i would think that if you do become symptomatic in the future, you could have them address it at that time? you are fortunate in that you know what to be on the look out for, and therefore, can address it quickly.

    i wish you lots of luck with everything. let us know how the consults turn out, ok?

    take care!

    jeaux


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  • I totally understand your feelings about all of it. I am 29 and have lived a very active life. I've always done things for myself instead of asking for help. I have 5 kids (2 step). This past spring I was diagnosed with 3 syrinx's. I have 12 buldging dics, DDD, deg. arthritis, Moderate scoliosis, one herniated disc. I haven't been able to find a neurologist that will accept my insurance. I consider that pitiful since I'm an RN. Should I even worry about it anyway? The doctor's I work with tell me that there is nothing that the neurologist can do for me. I was even told my one of my co-worker doctors, "I think people being in pain isn't nessarly a bad thing. It let's you know that you're alive." I am also heart-broken over not being able to throw a baseball to my 11yr old. And take my kids to six flags. Am I suppose to be a grandma at 29?
  • I totally understand your feelings, but as others have said, you may need to just focus on the present and take it one day at a time. I agree that often the things we worry about either don't happen or don't happen to the degree that we fear.

    That said, I think it's good that you are getting a third opinion on this. I think you should persist until you get the answers you are seeking regarding this. I don't know if you have any kind of personal faith, but for whatever it's worth to you, I am praying for you this morning and hope that you as well, will be able to place the "burden" of this in God's hands.
  • The user and all related content has been deleted.
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  • I feel your fear and pain ! Go with it for a small while...then make sure you keep telling yourself that there's plenty of time between "now" and "then". Be happy now...and sad later.

    Easy for me to say, huh?

    jas
  • I don't know how I missed this thread, but if you are still around I can offer some encouragement. I too have a syrinx in my cord, and have gone through the ACDF. I have done a lot of research on syringomyelia. One interesting fact is that MANY people have these syrinx's from birth, they are asymptomatic, and would never even be diagnosed if it weren't for the marvelous technology we have now. I have known about my syrinx for about 3 years, and at first the doctor scared me to death over it. Once I got in to see a specialist who knew what he was talking about, I found out it isn't really as big of a deal as it sounds, as long as it is asymptomatic. Your syrinx is very small. Let me try to explain what I have learned.

    For a syrinx to be a problem, it has to be large enough to interrupt the signal that goes through your spinal cord itself. Seeing a big white spot inside your cord is never good, but as long as it isn't growing, it is nothing to worry about. The standard treatment is to monitor it with repeat MRIs annually. No change, nothing needs to be done.

    I recently went through a complete decompression from front and back to allow more room in my cord. for now, that is all that needs to be done. the reason I had that surgery done wasn't because of the syrinx, but it does benefit the syrinx. In the event it grows to the point something further needs to be done, they would insert a shunt to drain the fluid out of it. As you mentioned earlier, that means opening up your cord, which is not something any surgeon will take lightly. They would never do it for a 5mm syrinx, in my opinion. PLEASE try to relax about this. Is it something to watch? Absolutely. But go on, live your life, and raise Gracie. It is quite possible the syrinx will never be an issue for you.

    Please feel free to ask me any questions. Of course I'm not a doctor, just a fellow spiney who is living with a syrinx. by the way, I have 5 kids, and am looking forward to years with many grandchildren.

    cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I apologize for not being around, I just needed to get off the internet for awhile and heal my mind and soul from all the horrible information I found on Syringomyelia.

    Since I last posted I have seen the Radiologist 2 more times and the 2 neurosurgeons I was considering for my foraminatomy/discectomy as well. As well as one of the most respected family Drs in this end of Maryland. The radiologist told me that what is showing up on the MRI is what is left of my central spinal canal. Now this should have collapsed and grown over throughout the course of my 34 years, but on some people it nevers does and this is completely normal. It is now just a regular part of my body. He does not feel it is a traditional syrinx, however that is what he put on the MRI to identify this mess.

    The two neurosurgeons told me not to worry about the syrinx as it is very small and will most likely not cause me trouble. One of them even stated that these things are not nearly as rare as what the research likes to indicate and that he sees at least one of these a week in his practice. This guy works in my community and we are a small rural county in Maryland of about 75K. He forecasted that IF it does give me trouble it is 20-30 years down the line. Both seemed fairly knowledgeable about syrinxes, but ALL literature says you need a specialist to manage your care because these things are so unpredictable in growth rates and what not. So at this time my wife and I have scheduled an appt with a Dr. ABC at Johns Hopkins on 7/21. This Dr is supposedly one of the best in the world on Syringomyelia.....we shall see.

    My wife is putting complete trust in the Radiologist whom her family has known for years professionally. My mother-in-law is a nurse and she has dealt with this man for a long time and knows him to be very thorough and very wise and very up-to-date on medical information. I also took the liberty of emailing one of the leading Syringomyelia experts in the country, a fellow named Dr. XYZ. He actually has written several research pieces about syrinxes turning out to be remmnants of the spinal canal and he responded back that it is quite common this mistake is made. So I am hoping beyond hope that the Radiologist is right and that the Dr at Hopkins confirms this on 7/21. I will then put this behind me and focus on my discectomy and get on with life!!

    Thank you again for all the caring and well wishes, I will need this again if the syrinx does turn out to actually be a syrinx.


    Post edited to remove specific doctor names. Naming doctors in your posts is not permitted at Spine-Health

    Ron DiLauro, Spine-Health Administrator 06/29/09
  • I am finding peace, but I do not think I am 100% out of the woods yet. All the information I have researched still has me scared that my Radiologist and everyone else non-syringomyelia specialist is wrong. IF Hopkins gives me the same information as the Radiologist.......THEN I will be at complete peace and able to rest easy.

    Yes I am going to have the disc surgery, I am waiting until after 7/21. Right now I am doing traction and some laser, facet and massage work with my chiropractor and staying functional. It helps when your chiropractor is one of your bestfriends and can fit you in when you need it.
  • AnonymousUserAAnonymousUser Posts: 49,000
    edited 05/13/2014 - 8:09 AM
    I was diagnosed with syringomyelia 5 months after I was married. My only symptoms were spacticity in my leg especially in response to very hot or very cold touches, and bladder problems. Since my insurance coverage at the time was very good I gave my OK to an MRI. I was shocked, terrified, etc. when I was told/shown that I had a "tumor" in my spinal cord (later clarified as syringomyelia) and that even without the necessary surgery I would probably never walk again. That was 23 years and 3 syringotomies ago. I get around my house OK since I know that if I fall I can either crawl to something and get up on my own or someone will be there to pick me up (my husband and I just celebrated our 23rd anniversary; my daughter - born after my 1st surgery - is entering her 2nd year at a prestigious university) and use a cane for very short distances, but must use a wheelchair for distances of any length. Nevertheless, we have vacationed all over the world and I have gone hot air ballooning, dogsledding on a glacier, exploring cliff dwellings in New Mexico, indoor skydiving, etc. Determination is key. My neurosurgeon - who was 2nd to God to me - retired years ago, and I have not been able to find even a neurologist who will do more than throw up his/her hands at my condition, but I finally have found a wonderful pain management doctor at xxxx NJ. Good Luck to you Gracie's Dad: soak up the love around you and USE it!!

    Post edited. Forum rules prohibit the naming of specific doctors.

    5.10 You agree not to post specific physician names or health care facilities names on Spine-Health.com.
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