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Stroke Caregiver - male
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About DarrellF

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  • Birthday 06/10/1967

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  1. DarrellF

    The first two neurologists looked at her for about 5 minutes and said they couldn't help and she would remain in this condition permanently. Our first visit with the new neurologist commented that Anne's walk was "spastic" and prescribed Bacoflen as a muscle relaxer and told us to come back in 3 months. We did finally get an MRI and we had a TELE-VISIT the other day with her (virus shutdown). She regurgitated what the MRI said and said that damage is causing her symptoms. duh! She recommended to continue therapy and that was it. I asked her about Micro Current Neuro Feedback (MCN) and she had never heard of it. I asked about Deep Brain Stimulation and she believed that would only help for Essential Tremor. I asked about Transcranial magnetic stimulation (TMS) and she said she would research it. Later that day I emailed her about the syndromes I posted, but don't expect to hear back from her soon. We have our next appoint in ... You guessed it. 3 months. I feel like we just keep kicking this can down the road because no one will invest the time into Anne. Maybe time and therapy are the only solutions. I just don't know and it frustrates me. Sorry for ranting.. Darrell
  2. DarrellF

    Thank you for sharing this. Darrell
  3. DarrellF

    The Neurologist (our third one) hasn't been very helpful. All of them have indicated that there isn't anything that can be done either by surgery or medicine. Anne has two lesions, involving the midbrain tegmentum and right superior cerebellar hemisphere. I'm researching these syndromes hoping that there might be "treatments" for something specific. I'm not expecting a miracle cure, but something specific that might help, i.e. Deep Brain Stimulation, TMS, etc. I just feel like I'm not doing enough.
  4. Has anyone here been diagnosed with any specific "syndrome" pertaining to their stroke? I'm trying to get a more specific diagnoses to hopefully get a better plan for my wife Anne. I'm looking at these... Wallenberg syndrome https://en.wikipedia.org/wiki/Lateral_medullary_syndrome Benedikt syndrome, https://en.wikipedia.org/wiki/Benedikt_syndrome Claude's syndrome, https://en.wikipedia.org/wiki/Claude%27s_syndrome Just wondering if anyone here has heard of these or know anything about them. Thanks, Darrell
  5. DarrellF

    Thank you so much for sharing your story. There are many similarities with my wife and its hard to read your post without tearing up. The last couple of months have been pretty frustrating. We've seen three Neurologists and no one will do an MRI. Anne only had one MRI, which was two days after her stroke last April. The doctors all feel that Anne won't recover which I refuse to believe. I just want confirmation as to where her injury is and how severe (Brain Stem / Cerebellum). She has been doing PT/OT/ST for months. We tried Acupuncture in October. We started vision therapy in December and now have a prism in her right lens that is helping her work on the double vision, however she can't look up or down and the doctor says the paralysis is likely permanent. Although her eyes are getting better and they are finally reacting to light, albeit just a little. Anne has just stopped using thickener but still has issues with coughing and chocking. The right vocal cord is still paralyzed and hasn't improved although Anne is managing it better. Anne still has "fogginess" and is confused at times. It "feels" like it has gotten a little worse, but that may just be me. Anne is so angry, frustrated and hopeless. She wants to die and says I should put her in a home and forget about her. She doesn't want to be a burden to me or our boys. God, it is so maddening. Physically she is so strong. Just doesn't have any balance and shaking in her right hand, head and left leg. I keep pushing her and hoping we can catch a break. We are now trying Micro Current Nuero Feedback (MCN). Its like a custom EEG and very low signal. I have no idea if it will work but we feel we are running out of options. I don't come online here much. Just really busy. Way too many bills, etc. But I do appreciate all the comments and stories. Thank you everyone.
  6. DarrellF

    I want to thank everyone for all the messages of support and hope. I read all these posts to Anne and we cried a little, but there is hope. Anne can speak although it is difficult to understand her, although her speech has gotten louder over the past three months. She does attend rehab but we are expecting to change providers in January. Her work and insurance has been pretty darn good. She will transition to Social Security Disability and Medicare over the next few months so hopefully that won't be too painful. Many of the rehab specialty programs here do NOT take Medicare. Her eye therapy doesn't accept insurance at all, but I can submit claims on our own. I'm learning to navigate (and argue) with the system. Anne's shaking, coughing and choking are the worst symptoms. I do believe that she can overcome the swallowing issues. We have a neighbor whose right vocal cord was paralyzed during an operation. It took three years to get his voice back and now (12 years) you can't tell it is paralyzed. I hope and pray the shaking can go away. That is driving her crazy. Her memory and thought process are intact but she is constantly clouded and distracted by the shaking. Anne has a LOT of anxiety and can't be left alone for very long. I am with her from 6am - 8pm and rarely leave her side. I've told her we need to find a way for her to be alone for periods of time but that is a tough battle at the moment. Thank you again for all the kind words of support. I hope we can interact with the members here more often as the months go by. Darrell
  7. Hello and thank you for allowing me to join. My wife suffered a stroke in April 2019, just over 8 months ago. She had an AVM in the Brain Stem / Cerebellum area. She has a paralyzed right vocal cord, her right eye is fixed and doesn't respond to light, although she does have vision but has double vision if she has both eyes open. My wife, Anne, has no balance and requires a wheelchair and cannot transfer on her own. She constantly says her brain is "foggy" and has feelings of extreme cold in her mouth and face. We have seen two Neurologists and they have both said Anne has no chance of recovery. The news is devastating and we feel we have no where to turn. My wife is only 49 yrs old but she is loosing hope and a will to live. I am hoping to hear from others and find encouragement in their stories. Any advice would be appreciated. Thank you in advance, Darrell
  8. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.