hey guys,
I am new to this site and this is my first time posting. Back in October on my 31st birthday I had an extreme headache above my left eye, that night my vision becam blurry and I was dizzy and had tingling in my left face and hand. For 5 years I had been diagnosed with generalized anxiety and panic attacks, at first I thought it was another attack but soon it felt different. I went to the Er and they did a cr that came back normal. From there I was sent to a neurologist who looked at my charts and said I had a migraine and gave me klonopin which is for anxiety, which I’m already in a daily medication. My symptoms continued, brain fog, facial weakness, dizziness, nexk oakn, shortness of breath, pain in shoulder, chest and back. My face started to burn so I went to a dentist who thought I might have a blocked salivary gland and referred me to an oral surgeon. When I went to the oral suregon he said this is is not at all dental, I am also an MD and this I neuroligical. She requested and MRI thinking it was Ms. I got my results back Within days and it came back as chairi. I was very lucky bc his assist at had also had chiari and had the decompression surfer with a specialist here in Michigan so she wrote down her name and gave to me. Two months later I was finally able to get into the Dr. Holly Gilmer, thinking she was going to tell me my symptoms had nothing to do with the chiari I was definetly suprised when she said, you have a 5mm herniation and 4th ventricle blockage and suggested I have surgery. It has been 2 months since my visit to the ns and i think I’m going to do surgery. Reasons I second guess is bc most days I can’t fully function, work full time soon retail and raising two kids under 4. I have symptoms that don’t go away like thraot pain, lump in the throat, hand tingling at night and neck pain. I do not have the normal headaxhe that most chiarians have. I guess I’m scared I’m going to have surgery and be worse off then I am now but I would love to not get worse wil huh is why we have the surgery. Did anyone else do surgery ealry on without tons of debelitating symptoms ? I have also been told bh many others that I have R.o as well and that affects surgery ? Does anyone have insight to help me ?
Most days I am functional…sorry for the typo
Hi, KGill! Welcome to Chiari Support!
I understand how this can be very confusing. Look at yourself from this point of view: how close/far you are to/from a "normally" funcioning person? You might be used to your symptoms and think it's not that bad. I know I think mine aren't that bad, but to a "normal" person mine are unimaginably terrible. I recently had the thought that we deminish our pain(both physical and emotional) to cope.
I suggest, if you don't want to go for surgery yet, explore all other possibilities for the couses of your symptoms in the mean time. You can go for 2nd opinion.
If the surgeon thinks you are a good candidate for the surgery, it probably means your symptoms are severe enough for an experienced neurosurgeon (who has seen a lot, probably) to believe they can improve the quality of your life. If you have some kind of a blockage, chances are, it is causing some of your symptoms and the doctor would like to restore a normal flow. A quick google search showed that 4th ventricle blockage can cause symptoms like the ones you described. You should check out for yourself. I idn't get into it, but most of the search resuls were hydrocephalus related. Hydrocephalus is when the cerebrospinal fluid accumulates in the brain. Either the brain is producing too much of it, or something is blocked and it can't escape. Imagine a swelling of an arm. the skin and muscle is elastic and the swelling tissue has space to expand. Now imagine a swelling in the brain. It is covered with with the skull, which can't expand. Now the brain is squeezed, the pressure is higher tan normal. It can cause nerve damage, and if left untreated, it can become permanent. I'm not a doctor, maybe something I said isn't quite right. If I scared you, sorry- it wasn't my intension.
"While precise data is not available, about 50% of patients become symptom free after surgery, another 20%-30% improve significantly, and about 20% experience no relief or get worse" - this is a copy-paste fom this fact sheet.
These % apply only on those cases when the symptoms are Chiari related. I suspect, those who experience no relief are the ones who have permanent nerve damage, bt that is only my pesonal opinion.
Keep us posted on what you decide to do!
Best wishes,
Kristine