A little about my story

@KoolDude those two patients with occluded IJV gave me hope!!

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Just want to clarify something here. This study shows that compressed spinal accessory nerve can recover after the Styloid was removed. So theoretically, the nerve can also recover from stretching as well is what I meant here.

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This is extremely helpful! Thank you very much. Can I ask you to help me understand the table for IJV compression? Not sure I understood that part fully. Is it saying that only a low amount of people have full occlusion?

As for the accessory nerve stuff, that makes perfect sense to me on how it can heal. I am really hopeful that is will heal up in due time.

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@Millcf - I just have to say, you’re one brave person! Allowing a surgeon to do his first styloidectomy on you.

I have read about Dr. Fargen’s reputation on here & am thrilled he’s venturing into the ES surgical arena. Thank you for your fearlessness in allowing him to start with you! I’m sure he’ll become very proficient with more experience.

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Well the table is summary of the study. It is saying that patients who go through neck dissection surgery (which Styloidectomy is part of) nearly half (46%) had their IJV narrowed after surgery and only 6% had their IJV occluded after the surgery with the remaining 50% having their IJV not affected by the surgery (neither narrowed nor occluded - fully patent). 3 months after the surgery (last column), 90% had their IJV fully open (patent) and only 10% had their IJV remained narrowed with 0% occluded.

Bottom line is nearly half of patients going through neck dissection surgery, will have some narrowing on their IJV on the operated side but most of them reopen fully after 3 months post operation with only minority remaining narrowed. It is also important to note that none remained occluded (closed) after 3 months. So if your new symptoms are due to swelling, chances of recovery is very good (90%) but if it is due to other reasons (like the remaining Styloid or C1…etc) then this study has no impact on those and IJV might remain collapsed but you said it only became 100% closed (occluded) after the surgery so the chances of it reopening is great as 0% remained closed after 3 months in the study.

I hope I clarified it. Wishing you peedy recovery.

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Also if you want to see what pre/post operation IJV narrowing looks like, an excellent comparison done by our friend @M_UK (shown in the link below). Although his surgery was a combination of Styloidectomy & C1 shaving.

A picture is worth thousand words as the old adage goes.

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Interesting research. I have found after both my surgeries that swelling & fluid in early stages have meant difficult post op symptoms fir a number of weeks. This second time I am doing better than first time as learnt about/using lymph drainage to move fluid. Hope you all start to feel better soon. In your shoes I would book Dr with experience so in his queue. You can cancel nearer the time if not needed (sure others would take the slot). D

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This is great information too. And that makes sense now looking at the chart again. My biggest concern is that my compression won’t be completely gone after the swelling and everything completely dies down. These are new symptoms though so I hope they’ll at least go back to where they were beforehand. Much more bearable beforehand. I really do also fear that my remaining styloid bone in there might be causing issues. Specifically I’m having more throat issues than normal so I really think I might have to have a revision surgery unfortunately.

And I’m really wondering about C1 shaves and how realistic they are to do. I have heard lots of horror stories about those and stents in the jugular. Two things I want to avoid if I can. But I’d also like to get back to normal life if I can!

So hard to know what the true problem is through all of this. I guess time will tell though! Thanks again for your feedback and the research in pulling out articles here. Still learning how to search and find things that I’m looking for. Thanks!

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I’m booked with Dr Hepworth in March already. Hoping he’s still kept my date because I’m most likely going to need it. The other doctor I looked into was Dr cognetti in Philadelphia. Not sure if he would be a good option but I need to look a little bit more into him as well. He would be much closer, but doctor Hepworth definitely has the most experience

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@Millcf - Dr. Hackman in Chapel hill, NC, has helped a number of our members who have VES. He is also the only doctor on our list currently willing to do revision & bilateral ES surgeries. He’d be even closer for you.

@Ddmarie, @JPB & @vdm all had surgery done by Dr. Hackman w/in the last month or so. You can private message any of them to ask questions.

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Hi! Absolutely please feel free to reach out to me with any questions you may have on Dr Hackman. He would be a lot closer to you and I completely trust that he knows what he’s doing, as does the team he has with him in the operating room.

Edited for a word I misspelled

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Hi, I will comment on C1 topic you mention. I had my C1 trimmed on both sides during 2022 (but am based in UK). If C1 is a significant factor in JV compression, then provided you find the right surgeon who will take a conservative approach and just trim the amount needed I would reassure you that C1 trim is ok. I have a small scar behind bottom of ear and I did get Some swelling post op but far less than with styloid ENT neck operations. What you want to avoid is aggressive surgery that removes too much/all of C1 as I think that can cause instability if major muscles attached to C1 lose the bone they anchor to. I did need to pay attention after each surgery to check I was using neck muscles to keep head supported in right place (pushing upwards on operation side) but my body soon learnt & adapted to the slight change to C1.

I agree we all hope to avoid some surgeries but for me symptoms were so bad that it became my only way forward. Hope you find solutions/help you need soon. This journey is tough. D

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There are very few doctors in the US who will even consider a C-1 shave but we know of at least one who carved a channel in the TP of C-1 to make more room for the IJV & another who gently scoots the IJV over & attaches it nearby to hold it away from C-1. These procedures seem to have been successful in helping stop IJV compression.

I definitely will have to. Does Hackman also do the decompression of the IJV as well? I’m really hoping to get someone who will be Able to find what is slamming my IJV against my C1.

Do you know what doctors do the later and connect it away from the C1?

Hi @Isaiah_40_31, what are the names of each of those surgeons please? I’m interested in the different c1 shave techniques

Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
https://doctors.bannerhealth.com/provider/Peter+Nakaji/1103456y_source=1_MTQ4NjU5MDktNzE1LWxvY2F0aW9uLndlYnNpdGU%3D

Yes, I am here for you if you want to reach out. I am interacting regularly with Dr. Hackman’s office in light of some lingering symptoms that are requiring treatment.

I start PT on Monday and am at my 30 day mark for post-op from Dr. Hackman. Oddly, my scars started rashing out - red, and in some cases pustules, on the incision area.

Pain - still around a 5-6 on most days if I am not taking some ibuprofen, and is mostly in the ears, jaw and neck. First bite remains a remarkably interesting experience (that is my positive way to describe it) and can put me to my knees but I prepare for it now and ease my way into a meal.

JPB

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@JPB it really feels you got some reaction to the sutures?

Upd: Vicryl (used for platysma muscle closure) is usually absorbed in max 70 days, Monocryl (for skin) in up to 120 days.

FBS to me feels like having some hot drink after eating ice cream, just doesn’t last that long.

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@Millcf & @IJVCompression -

Besides Dr. Nakaji, Dr. Lawton in Phoenix has a video on YouTube showing how he cut a channel in the top of C-1 to make more room for the patient’s IJV to decompress it. We have found that he is extremely picky about which cases he takes, & he’s turned away several of our member who would have seriously benefitted from his help.
•Dr. Michael T. Lawton, Barrow Neurological Institute, 2910 North 3rd Avenue, Phoenix, AZ,
(602) 406-3181 https://www.barrowneuro.org/person/michael-lawton-md/

Dr. Hepworth is the person I’ve read who slightly move the IJV in one case & tacked it down to some surrounding tissues to help keep it away from C-1. I can’t remember who posted that though.
•Dr. Edward Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 http://www.immunoe.com

@JPB - I totally agree w/ @vdm. Sounds like you may be allergic to the dissolving sutures. I’m so sorry your recovery has been such a challenge so far!!

I think I mentioned that I learned staying very hydrated helped reduce my FBS symptoms significantly. I think drinking 60-80 oz of water & herb tea/day was the key for me. Maybe try drinking 8-12 oz of water 15 min before eating to see if that’s at all helpful. It helps keep the saliva more dilute which is what I think reduced the intensity of my symptoms.

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