Recently diagnosed with Chiari 1 Malformation (11mm), by MRI a few months ago. Scan ordered to diagnose severe migranes. Long story short, had consultations with Neurologist, Neurosurgeon, and ENT (diagnosis of maxillary cyst, secondary finding on MRI, having balloon sinusplasty in 2 weeks to drain~gross!). All, including the ENT, say that I should have the decompression surgery. Neurologist concerned, due to the extent of the compression, and stated that he believes the spinal cord is "buckling". I am symptomatic, not just headaches. I have numbness in my hands, feet, pain across neck, shoulders, back of skull, black floaters in right eye, flashing lights, unbalance, vertigo, hard time associating words at times with what I want to say, and other wierd things, such as swelling in right ankle and pain in hips. I feel like I can deal with these sypmtoms, but am concerned about condition progressing, and additional damage being done to my cord. Does anyone know if this happens? Neurosurgeon states that it can be over time, or sudden. Don't want to be foolish and end up with paralysis, but not thrilled about surgery either. Thanks!
Surgery is definitely not a decision to take lightly, so good for you for being skeptical. I went through four neurosurgeons telling me I needed decompression before I finally decided it was time (that and the symptoms became unbearable). I also agree with Selma that you need to consult with a Chiari specialist that is well-versed in Chiari and related conditions because they can affect your future well-being. As for whether the compression can damage the cord? We're not doctors, but I can confirm that I was told the same thing by several surgeons. So learn all you can, ask questions, get a second opinion by a Chiari NS, and don't have the surgery until you're comfortable with it. But also don't avoid it out of fear.
Thank you for taking time to share with me. Are you happy that you had the surgery? I am concerned about the amount of time that I am waiting to decide. It is such a strange thing, one day I feel completely fine, and then other days I have episodes. Like last night, I had a monsterous headache, felt nausious, and my legs and arms had random pain and numbness. I guess I don't want to pro-long and allow more damage to be done, yet at the same time, don't want to suffer outcomes of a bad decision. Hope you had a wonderful Easter!
Thank you for your reply Selma. I think that he just used the term buckling due to the extent of the chiari, how it was crowding the spinal cord, and putting pressure on it. Luckily, all my ventricles look open, so the CSF flow is good. I am kind of at a disadvantage with my insurance. I work for a healthcare corporation, and can only go to their physicians. I live in St. Louis, and do not know of any true Chiari specialists. But your advice has prompted me to look further into this.
Short answer to your question- yes things can progress- sometimes quickly. The decision of surgery should not be taken lightly. The one thing you really should consider is how your symptoms are progressing (rapidly/slowly) and how they are impacting your life. I was told I should have surgery since I have a syrinx but it was my decision if I did or did not. I waited to see how things went. I also got a second opinion at the urging of my Neurologist. I could see that I was probably not going to get better without the surgery and my symptoms were progressively getting worse so I scheduled surgery. I do not know of any NS that is considered a Chiari specialist in St Louis. I considered going to Chicago to see Dr Frimm or Colorado to see Dr Oro. I ultimately had the surgery done by a NS here in St Louis. He was knowledgeable and did not pressure me into surgery. He also did not make any promises that I would be cured. Although I am still dealing with issues, I am glad I had the surgery. It has made a big difference as far as my balance and breathing issues.
I am with STL about everything can progress quickly. I did not know what was happening to me cause i jsut put off as age and dealt with it.I had alot of your symptoms and some others. I was dignosed in May and when I went to the doctor he said yes and a few other things. So mine was needed. So look at what you can deal with and what can happen.
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