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Misdiagnosis or BAD Nuerosurgeon? HELP US!!!!! (Read 4493 times)
KYLE OSMOLINSKI
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Misdiagnosis or BAD Nuerosurgeon? HELP US!!!!!
Feb 15th, 2012 at 11:57pm
 
My husband (24yrs old with Type 1 Diabetes) had IC/EC Bypass surgery on Dec 6, 2011. The Neurosurgeon made it sound as if his very very narrowing arteries were a serious deal to us. When she explained MoyaMoya, we looked at each other like….okay? She emphasized how imperative surgery was. He only has arm and leg tremors when he smoked marijuana. That was his only symptom. After the surgery, he had persistent facial ticks on his left side (had surgery on right),  blackouts, falling down constantly, dazed stares, completely different personality, he chokes and coughs on his saliva constantly, excessive saliva production so bad he fills an 18oz coke bottle in 15 minutes and SEVERE migraines from Hell!!!! I am having a really hard time understanding how before the surgery he had symptoms .000009% of the time and now he has symptoms 100000% of the time. We are frustrated! The Neurosurgeon and neurologist say “well, with time it will get better once the arteries grow…..there are no changes!!!!! My husband is completely 1 million times worse than before the surgery and its ruining our marriage! When he complains of the migraines, they blow them off and gave him neurotin….it does nothing! He’s been on Depakote and Keppra….still having seizures and the medicine has been configured about 10 times or more! We are losing hope and confused! Is this a misdiagnosis and an unneeded surgery? Or are there others out there that have the same issues?? I cannot even take him in public, he went from being a 24 year old to a 5 year old in a 24 year olds body. We have no support no help, no ideas, no options, I am in the Army and have to take so much time off work to care for him that I am about to be discharged from the Army!!!!!!…..PLEASE Help!!!!!!
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hrsridermom
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Re: Misdiagnosis or BAD Nuerosurgeon? HELP US!!!!!
Reply #1 - Feb 16th, 2012 at 9:11am
 
Hi.  I don't know about the saliva.  I have never heard anyone mention anything like that.  I do know that Keppra can have some serious side effects.  It caused so much anger in my daughter that her doctor took her off of it.  Has he had any followup angiograms to see if the surgery worked?  Can I ask where he had it done?  Moyamoya is a progressive disease and surgery is really the only thang they have found that prevents more serious problems.  My daughter didn't have a stroke but rather suffered from bad migraines.  That's how she was diagnosed.  She still has the headaches.  She had some cognitive issues after her surgery.  We had a neuro-psych evaluation done and found that she had some slight damage to the right frontal lobe.  That controls among other things...short term memory, impulse control, emotions to some extent.  I think most people do get better with time.  We were told it was like someone that had a minor stroke...the brain had to heal.  I hope things improve for you both soon.  this disease affects more than just the patient.
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Chris D
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Re: Misdiagnosis or BAD Nuerosurgeon? HELP US!!!!!
Reply #2 - Sep 16th, 2012 at 4:01pm
 
Hi- My husband had surgery in 2010 and has alot of the same post-surgical symptoms.  The only ongoing symptom my husband had for years was sudden onset of nausea/vomiting which oddly went away about a year before he had a stroke (which is how he was diagnosed) and returned post-surgery.  Have you gone for follow up scans-SPECTs? With the strange drooling symptoms- It sounds like additional damage has been done.  We live in Cinti, OH and Dr. Zuccarello is an excellent neurosurgeon. We couldn't figure out the post-surgical symptoms either. Neurotin is an ugly drug.  I just read on the NIH website that Gabapentin (Neurotin) is generally not recommended for Absence Seizure which is what my husband is having.  Hang in there.  Another MRI in a few weeks due to increasing symptoms and speaking with the neurologist abaout Gabapentin tommorrow.  I hope all is going better for you now but I felt compelled to respond as I so can relate.  My husband was a software engineer before surgery and is a very different person due to stroke damage (which did not show up until 18 months after surgery) to his frontal lobe. We are still waiting for social security as they are saying he can still work at a less strenuous job.  I can't even predict if he's going to be able to get out of bed in the morning.
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