New images from the latest CTA CTV

Here are a few images from the latest CTA CTV that Dr. Liu has asked for. The right jugular sure looks strange to me.

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It looks more like an artifact (noise in the image, image distortion)

Need all the images in all projections (2D)

@harrisonboy - It’s hard to tell what’s going on in the images you posted. Do you have anyone who could help you convert your CTA/CTV to 3D using radiantviewer.com for PCs or Bee Dicom Viewer App for Macs? That would be helpful for you & for us.

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Dr. Liu called me Wednesday night at 9 pm. He said that the new CTA CTV shows significant compression. Those are not artifacts, but where tgere is so little dye in the vein, becuase of the compressions, the computer cannot detect it. He indicated that i have significant pressure in my brain and there are a lot of collateral veins in the back of my head trying to compensate. He was very confused about my PET scan results as well as my significant neurological deficits. He is theorizing that becuasenof how severe the preasure is in my system, that I most likely have a spinal csf leak as well. He also thinks this condition may be causing the Alzheimer’s/lewy body dimentia issues I am having. He wants to do surgery as soon as possible on my right side and also said he may have to do the left. He said my casenis very cery complex and difficult. Honestly though, I am so sick and weak, I am going to have to really decide if I can handle another surgery or if it is just too late.

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I’m glad that Dr Lui wats to help you and agrees that your compression is significant. I understand how grim you must be feeling, and that more surgery is daunting, but keep fighting for your health, praying that you can go forwards with this :hugs: :folded_hands:

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I honestly don’t know if this is the right thing to do. I had testing done yesterday and just the tiny amount of anesthesia made me so much worse. My brain isn’t processing anesthesia coreectly, just like someone who has lewy body dimentia or Alzheimer’s. I wish this was 2 years ago and I would do it.

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@harrisonboy my heart goes out to you. I can’t imagine how overwhelming this must be after advocating for yourself for seven years and reaching the point where it feels hopeless. But the fact that Dr. Liu took the time to call you late in the evening and wants to help as soon as possible tells me he believes there is still something meaningful he can do to improve your quality of life.

I like @jules , am praying that you can move forward with this. He is top-notch, and if he sees hope in moving forward, I pray you will too. Sending you strength and prayers that this will be a path toward recovery. :heart:

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I so appreciate everyone encouraging me. I do have to be realistic that with all of the other issues I am having, doing this surgery could actually be the end for me. I am near housebound now and every test or procedure i have done makes me worse. He was certain that the atlantostyloid Jugular Venous Compression I have is significant and that it has to be fixed or I just am not going to survive, but It may just be too late for me. Everyone knows their own body and limitations and 7 years of tumor, head surgeries, CSF tests, and countless shots, tests and drugs have destroyed me. I just honestly can’t see how I can even get there let alone get there have the surgery and get 18 hours back to arkansas. I am by myself at home most of the time, so I would be doing this by myself. Just so many red flags to just ride out the time I have left. I do encourage everyone to give Dr. Liu a chance. He truly cares about us who have been mistreated amd forgotten. Bless you all.

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@harrisonboy, my heart goes out to you. Thank you for sharing your journey so far. I will praying for you!

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@harrisonboy maybe it’s not my place to say this, but I don’t want you to give up when you are so close to the help you’ve been advocating and fighting for all these years.

Before you make a final decision, I just hope you’ll let Dr. Liu’s team know everything you’re worried about, including the travel and logistics. They may have ideas or know of resources that could help, especially given your health and the fact that you’d be doing this alone.

I’ll be praying for you. :heart:

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@harrisonboy - I’m wondering if your body might tolerate the surgery better than it has all the testing/other surgeries because it will address the problem causing you so much trouble i.e. your vascular compression. I think it’s possible that once your IJV is open, & there’s some normalization of blood flow through your brain, your response to the anesthesia could be much more minimal, & the reduction in symptoms would be significant though it will take time/patience. Your brain is currently being “poisoned” by the toxins that have built up in it. Once the blood & toxins can flow out of your brain more normally, the toxins will be able to “wash out” more freely & that will give your brain a chance to recover.

You fought long & hard to get the tests done that Dr. Liu needed. You now have answers & know what the solution to your symptoms could be. You’re so close to the finish line! I hope & will pray for you to have the strength & desire to “finish the race”. I will also pray that if Dr. Liu is God’s answer to your prayers of several years, you will have the energy & desire you need to travel to see him for surgery.

Here’s a link to a post from @EagleinSEA that showed up after yours yesterday that I hope is encouraging: One month post op - Dr. Liu

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All I know is that I have had several near close calls just from routine anesthesia treatments becasue my pet scan is exactly like someone with Alzheimer’s or levy body dimentia and those patients are instructed to not have any surgeries unless itnis life or death. The anesthesia damage is irreversible. It only accelerates the brain damage I have. I need a miracle from above.

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I’m praying for you, and so sorry that you’re facing this alone, it’s a massive decision to make, and yours alone to do… the only thing I would add is that doctors are often (understandably) unwilling to do surgery for a patient who’s outcome isn’t positive, or who might never recover properly from the surgery itself, so he must feel that you would be helped by the surgery to have offered it to you?

But only you know what you can cope with and when enough is enough, I pray the you would know Jesus’ peace with whatever decision you make, and that He would comfort you :folded_hands: :hugs:

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Praying for a miracle for all.of us. Just so tired and want peace for all of us.

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Thinking of you, Harrisonboy and your hugely challenging situation. You’re an amazing person having gone through so much. Sending all best wishes and positive thoughts through the ether for the best to come for you XXX

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Love you much a d grateful for the prayers.

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Hang on in there, Harrisonboy.
THinking of you and sending all the Best vibes.
Take care .

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