I met with Dr. Costantino finally to review my venogram done in the hospital. At first, he was like, surgery will not help. No pressure gradients. I reminded him of our previous conversation and what he said in person as well as his medical summary. He then went back to the CTA I did in Denver last Summer. Hold on… He said my issue based on my symptoms are my huge collaterals. They always show up on imaging reports and Dr. Hepworth had stated right side was profound. My collaterals are causing most of my problems with occipital neurologia and coat hanger pain. He said they are the same size in diameter as my jugular vein. Spinal accessory involvement. He told me he has gotten very good at this in the 5 years performing these surgeries. He also stated there was a population of us unicorns that have normal cerebral venogram/angiograms but are very symptomatic. My imaging continues to show a problem. Based on my symptoms of severe occipital neurologia, coat hanger pain and imaging showing such large collaterals, surgery is scheduled. I did indicate to him I got some other serious diagnoses just recently and need answers on those and to get myself in a bit better shape for surgery. I ended up getting a very rare Disaccharidases deficiency in 3 of 4 enzymes from colon biopsy and also a Hill Grade IV non functioning gastroesophogeal flap/valve. It never ends. Anyway, for now, surgery is scheduled. Not sure if the date will hold.
@Brandy -
Good job advocating for your self when Dr. C tried to turn you down! I’m so glad he was willing to re-visit your earlier imaging & re-consider his position resulting in offering you surgery!
Interesting about your engorged collaterals. I can’t imagine how much pain they’re causing. I had very large collaterals at one point & significant occipital pain, but thankfully it’s gone now. I hope that’s the result of your surgery as well as ending your coat hanger pain.
Frustrating for you having further rare diagnoses to deal with beyond those you already knew about. I hope everything comes together for you within the next year for resolution of these problems & a return to a significantly higher quality of life.
Please let us know your surgery date when you settle on one that seems permanent.
Mind boggling isn’t it? I wish I did not have to repeat that venogram. They tortured me and I ended up with severe bruising at the catheter site of the radial artery. He told me last year I still had severe compression but needed more data with the venogram. My body is still in recovery mode from it. Thanks for all your help and support.
WOW! I’m sooo sorry that happened to you with the venogram! I hope your recovery from the venogram hurries along!
@Brandy I’m so sorry you are going through so much. I had terrible suboccipital pain from the collaterals prior to surgery. What is the surgical plan? I remember Dr. Nakaji telling me that opening up the IJVs isn’t a 100% guarantee that the blood outflow will choose the IJV route over the collaterals. Is there any talk about possibly reducing the collaterals? You have been through so much.
I’m sorry that you’re facing more surgery, but glad that Dr Costantino agreed to have another look at your venogram, & to try to help surgically. So sorry too for these other diagnoses, it must seem never ending 
I hope that you do feel strong enough and are able to have the surgery, have you got a possible date? Gentle hugs and ongoing prayers for you 
The surgery plan is a right decompression and resectioning of C1. I used to be a patient of Dr. Hepworths. He made no mention of any of this with the same imaging. His summary notes actually spoke of stenting the left side. That is not happening. My imaging always showed bilateral compression and the worse of the collaterals being on the right side. It seems severe based on all imaging and what Hepworth had put in his original notes and based on Dr. Costantino’s comments. My left side was done, but my right side is dominant.
March 1 tentatively. I do not feel strong enough for surgery. I also have a nurse coming to my home every 3 weeks for IVIG infusions. I have profound muscle mass loss and my shortness of breath and swallowing issues have gotten worse. I am hoping to get more answers prior to surgery. Dr. Ruhoy could not help much even with her muscle biopsy. I am under the care now of a different neurologist.
Do you find the IVIG treatments are helping you, @Brandy? I know of several other of our members who are also getting that & have felt it’s improved their health. I don’t know much about it though.
I’m sad to learn your health has deteriorated so much but am glad you’re able to have a nurse come in so you don’t have to go out for the IVIG.
You’re in a vicious circle knowing that surgery could help reduce your symptoms but feeling too ill to have the surgery. @Harrisonboy is in the same situation.
I will pray for your body to rally so you can keep the March 1 surgery date.
I am so sorry for anyone in this nightmare. I am leaving Saturday to go straight to the ER at Copperman Barnabus per Dr. Liu’s instructuons. My condition is so bad I can no longer go on like this. He is going to do a through evaluation, but unfortunately, I already feel he will tell me I am too sick to even do surgery. May JESUS touch you and everyone fighting this battle.
Thank you. I was on IVIG prior from 2022-2024. I did not think it helped much. I just started again but under a different brand of which I had the reaction. So, I cannot answer that currently.
My illness is not related to my jugulars. I am holding off on surgery until my health is better. So sorry you are suffering…
I’m sorry that you’re going through all this, you are so strong to keep searching and advocating for yourself @Brandy , thinking of you
@harrisonboy I hope that Dr Lui will still be able to help you, I’m so sorry that your health has deteriorated so badly, I pray that you would feel Jesus’ peace over your situation
Thank you. Although, it is getting harder and harder with all my other crappy health issues. Thanks for all your support.
Praying and sending you good thoughts @harrisonboy. Please keep us updated!
I am so sorry you have been through so much! Praying for you 
I’m so glad you’re finally making the trip to NJ, @harrisonboy! May God provide you with peace & symptoms reduction as you travel & prayers that Dr. Liu sees a way to help you.
I am praying with all my heart this isn’t a mistake. I won’t recover from this without symptom relief. I so appreciate all of your support and that you have been there for me. Be blessed.
@harrisonboy This is the best news I could have heard! I have been so worried and sad for you, and I am honestly so relieved I could cry! 
Keep your faith, this could be the blessing you have been praying for. Dr. Liu is a master at his craft, and if there is a way, he is the one to make it happen.
Sending prayers and positive energy your way, to make it through this journey.