I am at a critical point in my over a decade long journey. Post physio appointment my intracranial hypertension symptoms have surged to a point where three surgeons have said I need to get JVC surgery as soon as possible. I thought I had more time…
In Australia Dr Elliot and Dr Rao can do my right decompression next month. Are there any patients who can share their experience, as it seems I need to proceed with them.
I did have consults with Dr Bolognese and Dr Aghayev who both suggested bilateral surgery would yield the best results in my case. However, given my decline I do not have the energy or ability to fundraise and travel the 25+ hours. I would if I could, but it seems insurmountable.
May I ask if any members have been with any of these surgeons and if they could share any information on their experience to help me to take my next steps forward?
With gratitude to this group and to the absolutely incredible Jules and admin team for the incredible resources - a true North Star
I’m glad you can have surgery w/ Drs. Elliot & Rao next month. I hope it’s early in the month. I would stick with them under your present circumstances. They have done bilateral surgeries for our members, but those happen one at a time not both at once. If you’re able, you should get your second surgery date set up once you have the date for the first one rather than waiting since that surgical team books pretty far in the future.
I appreciate your feedback so much. I was just concerned I may not get the full decompression including fasciotomy if needed with the Sydney team. My jugulars are unusually curved around my C1 in a C shape, which requires a decent amount of C1 resection and potentially soft tissue structure also. Have you heard anything about this aspect of the surgery?
I would ask about their plan for this, I think I saw in one of the discussions it was mentioned that they’ll deal with soft tissue compression too, so hopefully that would include fascia if they see this is involved in your IJV compression…
Interesting about your IJVs being curved around your C1 processes. It sounds like Prof Elliot & Dr. Rao may have their work cut out for them as they do your surgery. Doctors do like a challenge though. Both of those doctors have a good reputation as a team & have done many ES surgeries w/ IJV decompressions, so I hope they’ll be very thorough when doing yours.
As @Jules said, it’s good to ask for details about the expected surgical plan prior to surgery so you better understand their approach. The plan can change during surgery if things inside aren’t as they appear in imaging, but at least you’d go into surgery with a better understanding of what to expect.
@Isaiah_40_31 here are some snapshots of my angiogram showing my jugular curved around my C1. I thought this may be of interest if someone else comes along with the same issue. Or maybe I am just special!
Dr Rao says he has to take as much of the C1 as is possible (and safe) to see the jugular open up in operative imaging. Dr Elliot would be doing to soft tissue work, and my understanding is he is minimal in his approach.
My symptoms are myriad like everyone on this group, but top ones are intracranial hypertension, debilitating neck pain and pressure, occipital pressure, vertigo, nausea, POTS type symptoms, cognitive decline. @Isaiah_40_31 do you think my symptoms line up with the scans from your learnered opinion?
My surgery date is 19 June. I am so anxious about making the right surgeon decision, but ultimately, I don’t have the capacity to travel and I am grateful there are such respected doctors in Australia.
I am reading all the posts, but if there is any updated advice on pre-operative care or post operative ways to help heal, I am open to learning!
Sending light to all the ES and VES warriors - may we all find moments of peace in our journey
Not too long to wait then! It’s good that they’ve agreed to help you, a couple of other members with similar symptoms have been turned down…
I hope with surgery your vascular symptoms will go- but be prepared it’s rarely instant, when there’s been vascular compression it can take a few months for the brain to readjust to improved flow, and nerves can also take months to heal, just so you’re not disappointed…
Pre-op, I guess just make sure you’re as healthy as possible with a good diet, some of us took a Vitamin B supplement beforehand & after to help with nerve healing, but best to check if that’s okay with any medications you’re on. There’s lots of info & a link to a surgery shopping list here if you’ve not read it: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I’ve made a note of your surgery, praying it goes well
@Harry - Your symptoms definitely line up w/ your scans & now that I’ve revisited the images you posted, I can see how your IJVs wrap around the TP of C1. Since Prof. Elliott & Dr. Rao have done quite a number of these surgeries, I feel confident they’ll do the best they can to allow your IJV(s) to open while keeping you safe. I’ve forgotten, do they do bilateral styloidectomies/IJV decompressions or only one side at a time? My recollection is one side at a time. If that’s the case, there’s a good chance you won’t have optimal results until you have both sides taken care of as both Drs. Aghayev & Bolognese told you.
I just realized you never got an answer about members who’ve seen Dr. Bolognese or Dr. Aghayev. We have a number of members who’ve seen Dr. Aghayev for surgery & one or two who’ve seen Dr. Bolognese. Some of our members who’ve been to Dr. Aghayev have had great outcomes while others not as much but that’s pretty typical for a doctor who’s operating on people who most likely have other significant health challenges w/ ES & IJV compression being only “one layer of the onion” as it were. I think the member(s) who went to Dr. Bolognese for surgery had a good outcome. We didn’t support him on our forum for a number of years because of some past “shady” medical practices on his part, but we’ve seen that he’s redeemed himself so are a little more open to entertaining discussions where he’s mentioned now. It’s my opinion that you’ll be in the very practiced hands of two well-known surgeons so I’ll be praying for a notably good outcome for you.
P.S. Your surgery date is on my calendar, too! Praying it goes perfectly.
Hi @Isaiah_40_31. Thank you for taking the time to look at my scans. I am so curious about how they will tackle the C shape. Hopefully that part of the C1 can be easily removed-do you think that is possible to remove that much?
Surgery to the right side is drawing closer. I am very anxious, but also excited. To think one day I may have an improvement in QOL is very elating. Though I appreciate your guidance on how patience in abundance is required.
My main wish is for symptoms of intracranial hypertension to be relieved… it has taken my cognitive function and caused such debilitating symptoms.
The Sydney team only do one side at a time. So considering the left side is classified as 100% compressed I am guessing the second side will need to be done.
The Sydney team do not use steroids to add in healing… is this something you know anything about? Dr A and Dr B both use steroids, but Dr Rao says there is no evidence it helps. Do you think I could ask him to reconsider? Seems steroids are pretty standard?
I’m so glad your surgery is coming up soon & agree with you that you’ll likely need to have both sides done to get optimal results. 100% compression is something we just don’t hear about on our forum so your poor brain is certainly in need of better oxygen exchange! Getting that fully closed side opened up should be helpful.
I’m sorry I don’t know what approach your surgeons will take w/ C1. I can tell you that when Dr. Costantino/Tobias operate, the whole transverse process of C1 is removed & seemingly without huge negative consequences. I don’t know if Prof. Elliot/Dr. Rao are that aggressive, but you could certain ask one or the other prior to your surgery what their approach to your IJV decompression will be.
A prescription for steroids is generally not standard for post op care, though a number of surgeons do prescribe a tapering dose or dose pack. I disagree w/ Dr. Rao’s comment that there’s no evidence it helps. It absolutely helps reduce post op inflammation for the days the steroid is taken. That can help reduce the pain, & for me, the scary feeling that my throat was closing up (even though that was a nerve sensation not an actual problem). Some surgeons won’t Rx it because it can slow recovery, however, I asked Dr. Hepworth about this, & he said a 10 day tapering dose pack of steroids won’t slow recovery. It’s only longer term use that will.
Your wealth of knowledge is so rich and varied @Isaiah_40_31 !
Really, thank you for your insight into these issues.
I will ask again about the short course of steroids, kindly and factually… I hate to annoy the surgeons, but really want more details on the C1 resection and steroids. Also the soft tissue aspect as mentioned. Prof Elliot does remove some fascia that is often woven around a compressed jugular, so that is a good start.
Surgery in 20 days. I have never been so terrified in my life! I have had 27 operations but nothing compares to the uncertainty of this surgery and how I will manage post op with my darling 9 year old. She is my ‘why’, I hope so desperately to be able to be a more active Mumma, eventually.
It’s understandable that you’re worried about the surgery and the recovery, 27 operations already though, that’s crazy, I feel for you! …Do you have any help afterwards? At least at 9 years your daughter doesn’t need lifting and can do plenty for herself, I did find my neck was too stiff to drive for 2-3 weeks after surgery, & I didn’t have the C1 shave as well, so bear this in mind if you rely on a car…
Thinking of you, and will pray for good results
@Jules & I have both been on this forum for 12 years now so we have read & learned a lot from our members & our own experiences with ES which we’re now happily sharing with our members who are newer to the “thrills & chills” of ES.
I have your surgery date on my calendar & will pray specifically that your surgical outcome will allow you to enjoy your time with your 9 year old more completely, & for now, that God will give you peace in your mind & soul regarding the upcoming surgery. I can only imagine how difficult it’s been for you to feel very ill for a long time & unable to participate more fully in her life. My children were adults & away from home by the time I was diagnosed & had my surgeries.
This is good to know, but it’s also important for you to be more clearly informed about what he does w/ C1 so I’m glad you plan to find out.
Both of those doctors have a good reputation as a team & have done many ES surgeries w/ IJV decompressions, so I hope they’ll be very thorough when doing yours.
