I’m glad that you’ve been given appointments with Dr Hepworth’s team, that’s great!
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Hello all, I had a positive appointment with Dr Hepworth’s NP Alison Love. She was so knowledgeable about EDS and comorbidities that I felt right at home. I’m curious how it will compare to my next follow-up with Costantino next week. From her assessments, my compressions on the left are from my foramen magnum (or the jugular foramen), carotid bulb, and SCM, and on my right (the dominant side, and bigger than it should be due to compensation) at C1 transverse process. I’m getting an ultrasound tomorrow to assess flow. Overall, it made a lot of sense that my CCI is playing quite a role in this, and this also explains my CSF leaks more as I’m swinging from high to low and back again with patches. She said it is surgical, and I will meet with Hepworth in 2 months. For those hoping for surgery with him, she said he’s scheduling out to May…
Do folks find that Costantino and Hepworth tend to have different assessments/opinions on things? I just hope to be able to move along this process and get to my next fusion, so then I can begin recovery. The merry-go-round, it seems!
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@mountangurl - I’m glad your appointment w/ Alison went well. Dr. Hepworth & Dr. Costantino do tend to have different opinions & different surgical strategies so it’s good you’re getting a second opinion. You’ll need to decide who’s surgical approach & overall diagnosis makes the most sense to you. Both doctors have a lot of experience & mostly good surgical outcomes.
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That’s good that she believes surgery will help, others have spoken very highly about how helpful & knowledgeable she is… But certainly worth getting a second opinion, we have had members who have been different info and opinions, & it’s a good idea to see who you feel most comfortable with.
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