I’m really sorry to hear about the lack of communication from Dr. Bunnell’s ofc. We’ve had similar complaints about Dr. Hepworth’s ofc & have found that he is suffering from a severe front ofc staffing shortage at the moment. That may hold true for Dr. Bunnell as well.
What Jules said about Dr. Hepworth is correct - first in person meeting is with his NP Allison Love. The unanimous verdict about her is that she is TOTALLY AWESOME so the trip doesn’t feel wasted. You can schedule your surgery after seeing Allison (usually 4-6 mos out). After you’ve seen her she will schedule a follow-up video appt for you & Dr. Hepworth so you can “meet” him & discuss your questions & other relevant issues. As noted, he will require you to get some vascular testing from Vascular Institute of the Rockies. I think that can be scheduled at the same time you’re there to see Allison or if you go a few days early for your surgery. You shouldn’t have to make an extra trip just for that.
Dr. Hackman in NC has also helped a number of our patients who have vascular ES though he doesn’t have a vascular surgeon present in the OR as does Dr. Hepworth. Dr. Hackman doesn’t book out as far as Dr. Hepworth & he will do bilateral surgery so both styloids can be removed at once. That can cause a more difficult recovery initially, but at least you only have to go through it once. I had wished for bilateral surgery when I had mine done, but I saw a surgeon who required two surgeries for that (as does Dr. Hepworth & most of the other doctors on our list).
I’m glad you’ve gotten some helpful info. from our forum & am very happy you’ve joined the discussions now.
Thank you, Isaiah. You are a blessing. Jules let me know how to create a new thread, and I believe I did that successfully. Having this communication makes me feel less alone in this process.
I will work to schedule with Allison and learn about the vascular testing. I truly appreciate the responses from you and Jules.
The process does start with Allison. She is wonderful! It was worth the trip to finally hear someone speak “the language” and understand all the symptoms and explain why for most of them. We first spoke with his practice Nov of 21 seeking a revision and ballooning surgery. He is still working with us.
I’m glad you’re continuing to seek Dr. Hepworth’s expertise @Samom.4 but I’m sorry that revision surgery & follow-up ballooning is necessary. I will be praying these are the final pieces of the puzzle that will bring complete healing for your husband.
I’m planning for surgery, live alone with a dog and am trying to understand my needs for home health care post op. I’ve already been told I cannot bend over for at least one month and unfortunately my freezer and dishwasher, giving food and water to my dog etc. all require bending over.
I’m in a high risk category for Covid and have another health condition that already has me in a depleted state with an extremely limited energy envelope.
I’m hopeful about the possible relief from surgery (Vascular ES) and doing one side at a time to keep recovery a bit easier. But also feeling incredibly overwhelmed - incredibly overwhelmed - by wanting to plan for all post-op contingencies/recovery challenges/durations.
I know I’ll need an aide, but it feels daunting to find one and decide how many hours a day etc.
I’d rather be over prepared than regret being underprepared.
I’ve not heard of anyone being told they can’t bend over for a month before, although don’t want to go against the advice you’ve been given…have a look at how you can adapt things to avoid bending down, could you wash up rather than use the dishwasher so you’re standing at the sink, maybe get a raised platform for your dog’s bowls to avoid bending too far? I was lucky post surgery & didn’t find bending down an issue, things like hoovering, sweeping, ironing were for a couple of weeks.
Have you seen the We’re In This Together scheme, it might be helpful for you to get support from friends or relatives, here’s a link: Latest We’re In This Together topics - Living with Eagle
Very good that you’re preparing ahead for your surgery though!
Thanks Jules, that’s encouraging. I was given that clear instruction but will re-confirm with head/neck surgeon and neurosurgeon when I consult with him.
Unfortunately due to muscle weakness/pain and joint issues hand washing in a sink is not viable for me right now. Loading and unloading my dishwasher only happens a few times a week due to pain/energy limitations. I also have POTS like orthostatic intolerance so changing positions is already difficult for me unless I’m fluid loaded with water and electrolytes + medication. I think those aspects of recovery make it feel more daunting for me.
I have not yet gotten complete post-op care instructions. Still working on getting my insurance to cover the head/neck surgeon who is out-of-network. Luckily neurosurgeon is in network.
Yes, it’s been difficult. But I’m optimistic that removing the styloids and relieving the IJV compression will, eventually, improve my quality of life!
