It went so incredibly well. He is one of the most compassionate doctors I’ve ever met, let alone surgeons. His bedside manner is superb. I addressed my concerns and he had all the right answers. He wants to do surgery to remove my right sided styloid (leaving the left for now because it isn’t causing pain) asap — which is looking like early January.
The issue is I’m terrified. His scheduler finally called me yesterday and left a voicemail while I was sleeping and I didn’t call her back when I woke up. I am so afraid of this surgery. I’m afraid of dying. I know I have trauma from my last near death experience due to a dissection and I know this is minimally invasive and will improve my life. I also know he said he’s done the same surgery on other vEDS patients. I ALSO know he even notated my fear of inadequate pain control in the hospital those first 24-48 hours post op (the last surgery I had resulted in a severe pain crisis and being under medicated due to residents that didn’t understand I’m a palliative patient) and promised it won’t happen to me at this hospital with this team.
Everything has aligned. All my self advocacy has paid off. I can schedule surgery. Why haven’t I?
Sometimes it can be really hard to move past medical trauma especially when a situation feels like it’s being replicated: surgery and the possibility of unmanaged post-op pain. It’s wonderful that you shared your concerns clearly and direct, and that Dr. Hackman reassured you that pain management will be an absolute priority in your post-op care. Maybe you can be gentle with yourself. It may take a few days for those reassurances to sink in. It’s okay if you give yourself a few more days to schedule the surgery. Remember too that once the surgery is scheduled there’s a good amount of time before January.
If you’re someone who uses affirmations perhaps you could create one for this.
Perhaps something like: I am safe in a refuge of light, responsive care, and compassion. My pain is well-controlled. All my needs are met. My healing has begun!
I like these words of Julian of Norwich, a woman in the 1300s who herself was extremely ill. Whenever I think of them I can feel the prayers of so many who’ve recited or written these words over centuries.
“All shall be well, and all shall be well, and all manner of things shall be well.”
I feel for you for what you’ve been through with your health and can only begin to imagine how scary it must have been for you
There are risks with this surgery, and especially for you, but it sounds as if in Dr Hackman you have a very skilled surgeon who is also very caring, has noted your concerns and will ensure that you have better pain control this time…but for you particularly having your styloid left in is a significant risk, so I encourage you to balance that with the risk of the surgery. I know my situation is nothing like yours, but for me what prompted the decision to go ahead with surgery despite my fears was that leaving the styloid in to compress my IJV was causing a significant risk, and significant ill health.
Know that when you go ahead with surgery, you’ll have the support of us here, and we will be praying for you to have a successful outcome
I’m so glad to know Dr. Hackman is such a compassionate doctor & especially in your case that he has experience doing surgery for vEDS patients.
It’s really difficult to overcome fears from past bad experiences especially in your case where your life truly hangs in the balance. Both @KimberlyNYC & @Jules have given you good thoughts to help propel you forward in setting up your surgery appointment. Also remember your surgery date isn’t “cast in concrete”. Should you feel the need it can be postponed or put off entirely until you do feel ready, but making an appointment now will at least put you on Dr. Hackman’s calendar sooner than if you wait.
