Jose, my mom, and myself headed to Lexington today unsure what we would find out. Both the ER doctor and the follow-up physician made us very nervous.
One of the first things that my neurologist said was she completely disagrees with both doctors! She said she read through their reports and then looked at the actual MRI herself.
ER DOCTOR: AVM, large abnormal blood vessel, follow-up MRI and cerebral angiogram, possible radiation/surgery for AVM – blames the AVM for right sided weakness, headaches,dizziness, etc
Follow-up Physician: AVM, abnormal blood vessel, possible stroke, URGENT follow-up with cerebral angiogram.
Neurologist: AVM is small. It’s also on the right side of the brain which means it cannot be responsible for the right-side of my body. The left side of the brain is responsible for the right side of the body. So even though it’s there – it’s small and not the reason I’m having these problems. The pinched nerve could be responsible for some things BUT it’s also on the wrong side of my neck.
She said that doctors always think that test findings are worse than the reality. Because it’s out of their scope of practice the smallest things look urgent and scary to them. She said it would be the same as if she saw someone who had something non-neurological happening. She would be more anxious about it because that’s not her scope of medicine. She doesn’t like the way the ER wrote up their findings as it’s overwhelming to tell a patient they may need radiation or neurosurgery when they’re not qualified to make those judgments.
Onset of Symptoms in Haiti: headache, dizziness, uncontrollable arm and leg movements, 52 blood glucose level, speech difficulty.
Symptom still present: There is still right-sided weakness, dizziness, severe headache, and mild speech delay
She told me most diagnoses in her field are based off of ruling other things out. The AVM/Abnormal Blood Vessel is not important right now. It cannot be related to these symptoms. She believes that at this point in time there is no need to do a follow-up MRI or Cerebral Angiogram because the abnormal blood vessel is not that large and she believes it’s benign. YEAH!!!!!
Pinched Nerve – The MRI shows that and taking muscle relaxers is a good thing BUT it’s not responsible for all of my symptoms.
Her thoughts were a TIA (mini-stroke) seizure, or complicated migraines. However – I don’t have any risks for it being a seizure and it doesn’t fit the typical seizures that they see.
So that leaves TIA/complicated migraines. They both basically give the same symptoms that I’ve experienced. Doing more follow-up tests to figure out exactly which one it is will result in lots of money which we don’t have and no difference in real follow-up treatment.
So they want to treat the symptoms and see where it goes. I still have these horrible headaches and my head is sore to touch. The headaches are causing a lot of the dizziness and she said that the headache could even be causing the right-sided weakness and speech delay. She said even the low glucose level that I had in Haiti could have caused the extreme tremors and dizziness.
Because TIA and migraines can so closely resemble each other we may not know until I have another episode. She believes that the episode in Haiti was more than likely brought on by stress. She believes that once we treat the headache regardless of why I have it – that the speech, dizziness, and tremors will all return to normal.
I’ve been prescribed 4 different medications including steroids and was told to REST and avoid STRESS! I told her I thought I had the rest thing down and she said – -yes, but it’s important on the medication she’s prescribing that I really don’t STRESS – don’t over-think (HA) – don’t drive – don’t do any heavy lifting – and try to truly relax. The back of my neck is still really tense and so even for the muscle relaxers to work – I need to chill-out!
I told her now that I know I don’t have to have brain surgery – it will be a lot easier to relax! 🙂 She apologized to me again for that!
I just wanted to say Thank you to Monica Reich who spent the last three days trying to call every connection she had here in Lexington. Through her efforts, she had arranged for the new MRI and angiogram to be done for free! She even met me at the neurologist’s appointment today to tell me the great news. I think she was hoping I would need one 🙂 No – I know she wasn’t. But I am so grateful for all her work and I can’t say that I’m sad I didn’t need one! God answers prayers and I’m so happy to not have to worry about that anymore.
Thank you all for your countless emails, comments, and prayers. While the symptoms are still here – it’s so encouraging to know that the worst is over and I’m sure as I start the new medication that these symptoms will just go away or get better.
Jose told me he was afraid something would happen to me and he would be left alone. I reminded him with 5 kids he would never be alone 🙂 I also reminded him that we have more family than any person could ever need!
You will never understand what your prayers and encouragement have done for my family.
WHATEVER I SAY IT WON’T BE ENOUGH BUT……
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
Categories: Personal Stories