This is the official report, including measurements.
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@Brandy -
I’m sorry but I’ve forgotten, even after all your posting, did Dr. Hepworth decompression your right IJV? If it he did, it looks like you had some benefit from it. If it was the left, then not so much.
Based on the results of your venogram what’s your plan for the next step?
Oh no, it was the left. He told me everything looked fine and started speaking about a leak and went back to the veins in my head being the primary issue. They are not. I pushed for post op imaging. It was then Dr. Lo who did a side by side of imaging prior to and then after surgery. He pointed out to me in the side by side, looks exactly the same. As if nothing was done. Dr. Costantino then told me I still had substantial compression from surgery side and ordered another venogram to get more data. Honestly, I think having a neurosurgeon involved with C1 should be mandatory.
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I have a follow up with Dr. Costantino on Oct. 2.
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Thank you for the reminder. I know you’ve talked about this a lot on the forum & I’m sorry I can’t keep track of everyone’s details. I’m glad your right side is more functional than the left but since you have collateral veins on both sides, I imagine that you’ll need to have both done for the best results.
A wise doctor once told me that doctors learn from their patients. I think if you haven’t contacted Dr. Hepworth w/ your before & after imaging, you should do so & let him know that the way he did your surgery wasn’t aggressive enough thus there were no positive results & now you’re facing round 2. That could help a future patient receive a more successful surgery.
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He saw my before and after imaging. He ordered it. He made no mention and started talking about a leak and the veins in my head being of most concern. Neither is a concern. I also messaged one of his PA’s in the portal when Dr. Lo pointed out there was no change in imaging from before surgery. She claimed imaging would not show it due to how he treats C1. There are plenty more who are dealing with similar issues with C1. What would help a future patient receive a more successful surgery is for him not to be doing spinal surgery and have a neurosurgeon on board to do this part. I have on record where his PA told me he does not do C1 by himself and would bring in a neurosurgeon. That never happened. My sinus surgery was not needed and did not help at all except give me more scar tissue. Another procedure which was approved by my insurance was not even done. I had also asked for a culture done in his office for my nasal passages. He refused. I had to get that done elsewhere and it was positive for mold and candida. I also had surgery with an active sinus infection and no pre surgery clearance labs were ever ordered. I have PTSD from my entire experience.
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I’m sorry that you’ve had a bad experience, and were given misleading info in your discussions before surgery… Unfortunately we have seen with the VES doctors that not everyone does great, and that members have to go for revision surgeries with one of the others, and also we’ve seen differing opinions when members have had consultations with several! I guess that C1 shaving is fairly new in the scheme of things & they are all learning, but there are certainly some concerning things altogether from your experience. Have you made official complaints? 
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Who am I going to complain to? When I mentioned I had surgery with an active infection and no pre clearance labs were ever ordered, the reply was “We will be sure to order pre surgery labs on your next surgery”. I spent a whole lot of money traveling as well as hiring a private caregiver to only have gotten worse.
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Obviously as I’m UK, it’s a different system, @MGORNEAU has mentioned the State Medical board?
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I do not know who that is and when I clicked on the email, it said it was private??
@Brandy Thank you for mentioning that about my profile. I did not realize it was private and will change that. My name is Michelle, I live in New Hampshire, I’m 57, and all of this started for me seven years ago. I have definitely had my share of bad experiences with the medical world.
You can file a complaint with the State Medical Board in the state where the incident occurred and where the provider is licensed. If disciplinary action is taken, it may also be reported to other states where that provider is licensed.
If the complaint is against a facility, you can file with the organization that accredits that facility. The Joint Commission accredits many hospitals and medical facilities, although not all of them. Depending on what happened, you may also have the option of filing a complaint with the U.S. Department of Health and Human Services. You can also file a grievance directly with the hospital or facility if the provider works for or is affiliated with one.
I have found it is best to keep complaints as factual and unemotional as possible and include any supporting documentation you have. I rely on ChatGPT to help me organize and write mine. They can be time-consuming, but to me it is worth it if it possibly helps change the way patients are treated or prevents someone else from having the same experience.
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Thanks @MGORNEAU for your advice
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