Newly diagnosed Chiari, syrinx, possible benign tumor is surgery necessary

Support
#1

I have had neck/shoulder pain, lower back pain and new sporadic numbness in my left arm. I thought it was arthritis or slipped disc or something of that nature. I was diagnosed with CM, with syrinx and possible benign tumor. I have another MRI of my full spine this Friday to get a clearer image of what is going on and how to proceed. I was referred by my neurologist to a specialist (I don’t think his specialty is CM) he said in looking at my MRI there is no tumor but my CM is a 9 out 10, he doesn’t understand why I don’t have more severe symptoms. That the cerebellum has pushed down through the first vertebrae and suggests decompression surgery within the next three months. Another specialists I chose to go to, to get a second opinion said the image was not clear enough and he wants another MRI of my full spine to determine if there is a tumor. I have uncomfortable symptoms but nothing that is completely awful at this point. I suggested monitoring to the first specialist and he was obviously not ok with that. His explanation was that the longer we prolong the less likely the symptoms are to correct themselves.

The thought of surgery scares me and is causing extreme stress which is making symptoms worse. I am so confused about this surgery whether it is necessary, whether it is necessary to do it right away and if it will potentially cause worse symptoms. SO TORN PLEASE HELP

#2

Hey Thornhill,
‘…is surgery necessary.’ Ohh, now this is something only a neurosurgeon experienced in Chiari can answer. We do not have your scans, your history nor the qualifications to be making any such diagnosis.
Some neuro’s are of the opinion that if a tonsil is ‘X’ millimetres long you will be symptomatic, anything less than ‘X’ and you will not be symptomatic. I say ‘some neuros’ because I have found that many neuros can have differing opinions. If you go through and read other people’s experiences here you’ll find there are members with a smaller tonsil who have huge symptoms and yet you’ll also find members with larger a tonsil that are only diagnosed incidentally, showing very little in the way of symptoms.

But I must say here, with some neuro symptoms, they can be subtle, very subtle. But those subtle signs are often a warning. Leaving those subtle warnings to progress is not a good idea. Some can start subtle and become subtly worse. But some can go from subtle to emergency, especially when we ignore or minimise the initial signs.

Merl from the Modsupport Team

#3

Thank you :slightly_smiling_face:

#4

Obviously I can’t answer if your surgery is necessary, but I will share our thought process about deciding to have the surgery. My son had the surgery in Nov. His symptoms were very mild, the worst being some headaches. A doctor suggested he get an MRI and we found a 14 mm herniation. No one wants to send their child into major surgery, so we thought a lot about whether we should wait since his symptoms were mild and we didn’t want to rush into something. What ultimately decided us was, after consulting with our neurosurgeon, that by waiting we were simply kicking the can down the road with the potential of his symptoms getting worse to the point where some damage was permanent. And how much did we want him to suffer with his symptoms before surgery was absolutely necessary?
Surgery is scary and I won’t lie and say his recovery has been nothing but sunshine and rainbows. But we wouldn’t have forgiven ourselves if we’d caused him greater permanent damage by waiting.

#5

Thank you for the feedback. This is for me and my fear is not being able to take care of my son. I have been thinking a lot lately and I think as scary as it is I am coming to terms with the fact I need to have the surgery. My symptoms have gotten worse these past few weeks. I have a syrinx. I am having another MRI Friday with another neurologist to rule out a tumor but either way I believe surgery is in the near future. Thank you again for you response I appreciate it.

#6

I’m not a surgeon, just a person living with CM. I went to a specialist in NJ. . MY CM is 2cm beneath the foreamen magnum. Its not in the first vertebrae. I have headaches here and there with some neuropathy however, not severe enough to interfere with life. I cannot speak for the syrinx or tumor. My doc said if you are living with CM and its not interfering with daily activities, do not get surgery.

#7

Thank you James that was the rule of thumb I was going by but was informed that because I’m more tolerable doesn’t mean there is not damage being done and the longer I wait the less likely the nerves are to repair. I appreciate your feedback because that’s what I was going by :blush: hope you continue to do well.

#8

Hello!

I have a Complex Chiari and a syrinx. My herniation is anywhere from 5-7mm depending on who is reading the scans. In my case, I was recommended to have surgery for decompression and cervical instability about 3 years ago. However, I chose not to go through with the surgery just yet. My symptoms of neck pain, head pain, numbness and tingling, muscle fasiculations, muscle weakness, electrical shocks, feelings of impending doom or anxiousness have subsided. I think some of this has to do with the fact that I have backed off on activity, rest when I need to, and using conservative treatments(physical therapy, aquatic exercise, sauna, heat, magnesium baths, supplements for mineral/vitamin deficiencies, massage, etc). Another thing is that I have discovered is that the “dye” used in the MRI contrast is a heavy metal-gadolinium-which can also bring on chiari like symptoms. The contrast or dye is suppose to leave your body within 24 hours- 48 hours after receiving it if you have HEALTHY kidney function. My kidney are functioning normally. But I found through a urine test in 2017 two months after my last MRI with contrast that my body was still excreting it! I was surprised to discover this. So since that time, I have requested that all my MRI’s be done without the contrast when checking for chiari and brain tumor progression.

I feel like the change in my lifestyle and allowing my body to detox from this heavy metal has allowed me to forgo the surgery for the time being. My symptoms are still there but not a constant all in one daily occurrence.

#9

Hello I haven’t been on here for a while but… I was diagnosed with Chiari in 2013 at 45 years old I had a sudden on set of symptoms that presented like a stroke. When an MRI was completed after the doctor’s thought I was a hypochondriac and it revealed I had 16mm of my brain compressed. Upon further imaging they found a syrinx in my spine. My Surgeon Dr. FRIM at the University of Chicago whom is excellent only gave me the option of waiting or decompression surgery do to the fact I could be permanently paralyzed if the syrinx continue to grow and impact my spinal canal do to the back of cerbal fluid. I choose the surgery because there was no way to know how long I had the syrinx, how fast it would grow r if it would resolve on its own which it did after surgery. All my other issues did improve such as headaches and my gait and swallowing issues but not the brain fog. Hope this helps. :pray:t5: