Hi MG and welcome to the Chiari forum.
Lesions that are typical for MS are found on the brain MRI and not on the cervical spine.....and it is identified as a syrinx. They are two very different issues/conditions.
Symptoms for each are similar as Chiari symptoms are also the same as those you mentioned above.
Do you have a copy of the MRI?
Yes I do have copy of my MRI. Should I post here? Although I do not know how to get images from it.
Syrinx that is located in C6 level can cause dizziness? The symptoms have been progressive. I had only dizziness for first 4 months. In month 5 I developed some on and off numbness of foot and hand on left side. Soon after that I have transient numbness of face and sometimes head. From all the research I could not find link between syrinx and dizziness.
Also what is the prognosis? I do not understand the language on report. What is anterior midline cervical cord? I saw some places that some of these syrinx are congenital defects specially if they are small. I was very scared of having MS but now I feel like MS would be better than this.
Also what are the surgical options? I gather that I syrinx has to be big and causing problems. This disorder looks very less understood.
Do you know any good neuro surgeon or doctors in Atlanta, GA?
I also have bulging disk from C3 - C7. Could this cause the syrinx?
To start with your last question first, yes, if the disk is bulging out far enuff it is possible to block CSF flow which is how a syrinx is formed.
I can not refer you to a specific Dr but I can give you names to research.The following are names of Drs members here have been to, treated bby and liked but it is not a referral nor an endorsement for those listed....be advised you may have to travel to get to a Dr
Dr. Princewill Ehirim
Dr. Vidyadhar Chitale
Not sure it is better to have MS or Chiari.....they both can affect us adversely ......and the symptoms are so similar it may not make that much of a difference....except there is treatment via surgery which can give benefits.....and it really depends on if your syrinx is caused by a disk or by Chiari....or some other issue as to what type of surgery or if it is a factor.
From what I can tell the syrinx is not located near nerves that would cause dizziness....C1 would be the area for dizziness.
If you can open your MRI and download a few pics you can post them to your profile page in a photo album...then let us know so we can take a look.
As far as a prognosis...it really depends on you....a syrinx can stay the same for long periods of time with no new or worsening symptoms or it can rapidly deteriorate with growth causing more compression of nerves....everyone that has one will have a different prognosis.....but typically they need attention ....be it monitoring or surgical to keep them from growing as then it could lead to perm nerve damage.
Thank you Selma. You have been great source of information. I have so many questions and fears. I hope to see neuro surgeon soon.
Is there is info or document on how I can get images out of MRI CD? I can see images on cdviewer but I haven't figured out how to get them to right zoom and copy paste single image.
Also, is it normal to have such a progressive symptom development. In 6 months I have gone from zero symptoms to 15 and they are getting only worse.
I am not too savvy in that area I never got my MRI pics on here....but if you can open them, try taking a picture of it up on your screen it may work to then upload that pic....??? I know there are others that may be helpful with that .....
It is typical for symptoms to not only cycle but flare at times as well as go into a regressive phase......
When was your last MRI, I know some have had this happen when the syrinx began to grow at a rapid rate....do let your Drs know about the change in symptoms they may want to do more MRI's
The MRI was last week. So it is very recent. I am worried that it is growing at rapid rate making my symptoms progress. What is the anatomy of symptoms cycle or flare up? I thought the nerve damage was permanent.
Nerve damage when it is over a long period of time, can be permanent.....but if caught early enuff, it is possible to stave off perm nerve damage....
Not sure any 2 people will have the same cycle or flare ups ...it can be due to your activities...this is why when we are DX'd we are told to avoid certain activities to help lessen flare ups.....
Glad to hear it is a recent MRI.....do you have a copy of the report as well?
Meant to ask if you had a report of a MRI done b4 this last one....
No this was the first MRI ever. I have been perfectly healthy without any trace of symptoms before this January.
Yes I have copy of my report. I will post it here.
If you take a look at my profile now, I have uploaded the report from radiologist. Please let me know what you think. Thank you.
Ok it is saying the cerebral tonsils were where they need to be....etc...and it does not mean it is not Chiari as not all with Chiari have a herniation of the cerebral tonsils that are measured properly or the Dr being aware at what point it may be causing issues/symptoms.
I am not sure this report is helpful....the MRI itself may be more relevant in helping you get more answers....many Chiari specialists will review MRI's and let you know if 1- you have Chiari ,2- or any other related condition visible in the study.3- if you do have Chiari if they can be of help to you
Thank you for taking time to read the report. What are my chances if I do not have Chiary? I do not have classical symptoms of Chriary or Syrinx if you discount on and off numbness that is not bad on left hand and foot. After reading several posts and stories it looks like lot of people either do not undergo operation or they can not. I reality what is the outlook I am going to have? Is there higher possibility of surgical intervention and stopping the progress? How bad is this disease? I fear if it will bring disability on me in few years? I hope not.
I did make an appt with Dr. Chitale after hearing from you. It is next week so I think I will learn more.
Symptoms of a syrinx and even Chiari can come and go, and sometimes because it changes so drastically we are not aware when we are actually having a symptom of it....
Your Dr is better able to answer your questions....I did not have a syrinx and many that are DX'd with both Chiari and a syrinx have had surgery.it is those that were only DX'd with a syrinx that may not have surgery as many times the syrinx is too small for a shunt or stent.
May I ask, have you ever had an injury to the area of your spine where the syrinx is located?
I have never had any accident barring one bicycle accident when I was 13 that hurt my abdomen part which was healed in a week without any hospitalization or even drugs. I am 30 now. If I do not have Chiary or bulging disks are not causing it I really don't know what it is. I do have "tiny hemangioma" according to radiologist on my Thorasic spine at T10 but it is so far. I suppose I can have some reason like compact cord for uneven CSF flow. I read that some are congenital and they don't really cause symptoms but I HAVE symptoms! If it is idiopathic it has to be crazy because they are even rarer I guess. Do you know how many people have this condition? Just the syrinx? I read it is as rare as only 40000 in US have it. Now, why couldn't I have won a lottery?! Those odds are better than this!
I have now also uploaded photo of my c spine and syrinx on my profile. When the report says posterior fossa is unremarkable may mean it is a little crowded but not too much?
I took a look at your MRI and you do not have herniated or low lying tonsils.....I can not say if you have Chiari based on that as I can not tell from a MRI if your cerebellum is of the right size....but you do have plenty of room in there compared to many other MRI's I have seen.
Unremarkable means nothing is present....
Thank you. I am going to see Neuro Surgeon on Wednesday, what questions should I ask him. Like I want to know what could be the reasons for the syrinx, I also want to know what can be done for it. I want to run more tests to find out the cause but I am not sure if doctors are going to be open to that. Do you have suggestions or pointers as to how I can handle this appointment. Also I forgot to mention I had MRI without contrast only, I assume I need one with contrast to rule out tumors. Can I have a tumor without significant symptoms? I would really appreciate any advice or suggestions you can give for meeting with Neuro Surgeon. Also if you have thoughts on what I should expect him to say.
The syrinx you have appears to be quite small.....I am not sure what other testing they may do, especially if they feel it is congenital or even idiopathic....
They may decide to monitor it....a syrinx by itself is not easy to treat as they are so small, the stents and shunts are too large to work well for them....for those with Chiari, the decompression surgery helps the syrinx shrink most times post op....
You may want to address the symptoms, in that if they feel the syrinx is too small to cause symptoms, ask what then is casing them since this is the only thing found so far.....
Contrast will only help them see more detail....and the NS may want one...so wait to see what they say....
Ask how you can ask questions once you go home after your visit as that is when you may be able to formulate some.....many of us are like a deer in headlights during a visit....
Expect that you cannot be prepared for what the Dr may say....stay open and relaxed as much as possible...take someone with you to help hea all that is being said....
Thank you for your input. I will update here once I see the neuro surgeon. Are you part of other forum or FB group? I would like to join.
I do belong to a private group on FB but I am not on there that much,,,,I spend the majority of time here as it was here that I got my answers and there is less drama then on FB.....
Please read and give your opinion. I went to see a neurosurgeon after finding syrinx on my cervical spine. It is 4 mm long and 2 mm wide at c6. After viewing the MRI and conducting neurological exam which was normal he said this an benign incidental finding.we can follow it up with MRI for first couple of years. He said none my symptoms are coming from syrinx. He also said if it was to expand and cause problems it will be 20-30 years from now on. I had mute babinski but he wasn't concerned. I don't want to pull my hair out worrying about this matter but I want to know if I should meet / talk to more neuro surgeon? I asked him if we can do more tests like CINE MRI but he said not at this point. I have read some stories here that are small syrinx, are symptomati or become in a few years. Please give your opinion and any suggestion or advice you have. He also said I would not restrict you in any way of exercise or pregnancy. Also can I have a lumbar puncture? He said I could.
I am not experienced with a syrinx myself....but others that have been on here have had them change slowly over time while others have had them change rapidly over a very short time.....so everyone is different and there is no way to know how long it might be.....
Since you are having symptoms and they claim it is not the syrinx I would want to know what is causing them.....so keep asking and pushing for answers....if it is not the syrinx then what is it?
Look to Drs that specialize with Chiari and Syringomyelia as they tend to work with the condition more often then a regular NS/NL