HI, Just an update on my latest journey needing IJV revision. (bilateral decompression, styloidectomy, C1 shave, may 2025 and sept 2025)
Costantino: Actually scheduled with hospital in Oct. He was ready to proceed. His staff will not put the effort into insurance auth. The one guy I spoke to is nice but wow this other woman is so unkind, I have spoke to both of them on conference. and this is not going to happen. If they wont help me prior to surgery they certainly are not going to fight with insurance post surgery. off the table! My Neuro has informed me she has had 2 patients that will pay OOP and try to get back money later.
Fargen: 2 1/2 year wait to be seen! They are so helpful, and offer transportation, housing for the out of state people. Good care! He wants to do LP and Shunt. Negative feed back on stents, and I need them even after surgery. But thoughts on stents are changing, since a lot of negative results.
Nakaji: He gave me 3 options. 1. LP and Shunt 2. Left side, bone compression, which needs a little more of C1 shaved, and would also clean out some muscle. 3. Right side could also take a small amount of C1, (although really no bone compression) but more muscle to clean out, I have dystonia, and it may relieve some pain and help with the dystonia, might help with quality of life. He also mentioned this side does need a stent up high, but feels that procedure would be very difficult. He talks fast and wish i wouldve wrote more details down with my foggy brain.
So l have a lot to think about, any thoughts are appreciated. Also dealing with drastic weight loss, Dx with gastroporesis, so GI vs vagus nerve? down to 97 lbs, so more compromised for surgery. My Neuro feels its due to the compression. Dr Nakaji said he just does not know.
@birdie1 - If you still have some bilateral IJV compression, there’s a chance your vagus nerve is still also compressed/compromised. Gastroparesis alongside ES has been known to have vagus nerve irritation/compression as its cause, & we’ve had members who’ve had gastroparesis symptoms resolve once styloids were removed & IJVs have been fully decompressed. It can take some time after surgery as you keep hearing from us. If you have revision surgery done, hopefully you’ll get some resolution then. Is there anything you can take to help reduce your gastroparesis symptoms?
Your struggles w/ Dr. Costantino’s staff continue to puzzle me as there have been good reports about their helpfulness in the past, but we’ve also had members who did pay OOP & continued their insurance battle post op. I’m sorry getting to have surgery with him has gotten so complicated.
Please let us know if you decide to go back to Dr. Nakaji (his plan does sound pretty straight forward & you already have a decent patient/doctor relationship with him) or if you decide to try a different surgeon. I’m sorry Dr. Fargen is booked so far ahead. We’ve heard good things about him, too, but I worry about his tendency toward stenting even if views on that are changing.
I’m sorry I should’ve been more clear, I saw Fargen and Nakaji in the last week, I already did the almost 3 year wait to see Fargen. So I have been flying all over in this past week. Now I need to make decisions on what to do, shunt vs what side to choose for initial surgery.
And thank you for mentioning others have had gastroporesis, because I haven’t been able to really find any stories regarding that being a problem. I am going to have a GI work up to rule that out. Then I have to assume due to compression, which I really feel that is the issue.
@birdie1 - Now I remember you’ve seen Dr. Fargen but am sorry to say I lost track. I’m glad you got his opinion (I even remember now reading what you said about it earlier). Getting diverse opinions from doctors regarding treatment of a problem does make the decision of how to proceed even more challenging.
I’m glad you’re having a GI work up for the gastroparesis. It’s important to leave no stone unturned when looking for answers.
I’ll keep praying for you to have wisdom as to the best course of action going forward.
@birdie1 I dealt with gastroparesis. It is not long after my surgery but I am hopeful I will continue feeling good but still waiting for digestion and motility to fully come back. Here is the case report I first saw that let me know it could definitely be my problem -
Thank you for sharing the article and hope your gastroporesis goes away, it is miserable! On top of all the other symptoms. Mine started 4 mos after my last surgery, hopefully due to not being fully decompressed and not injury to nerve.
Thank you Jules for sending that members story, I can relate so much. But it seems it took a while before feeling better, makes me wonder if I should be waiting, but think I will just get more sick, then big concerns with surgery. proceeding with surgery I will go back to Dr Nakaji. Other option is the shunt, will help my IIH, but I will still have bilateral compression. Is it enough? Should I try that? I still have questions. Like I said both Fargen and Nakaji would do the shunt, and it does have some after care, don’t know how often? Both providers have Oct availability, but I have gi procedures in Oct and maybe go for surgery in Nov. and hope I can keep my job thru all this, they are tired of putting up with me.
@birdie1 - If it was me, I’d want the compression to be fully dealt with before considering a shunt. If the results from full decompression didn’t provide symptoms relief, or enough symptoms relief, I would consider the shunt at that point. I know you’re weighing your options. I will pray for you to have wisdom as to which path to choose & for your job to stay put.
Thanks for your opinion, I really want opinions on what people would choose. At the moment I am leaning towards having my right side done first. He had great difficulty with that side, and I assume it needs more negative space. He was even looking at my neck and mentioning where he would make incision for better results (and I am looking at it as an advantage of having same surgeon) my anatomy on left side has a very small ijv. So if the right is opened up, more blood flow? But I do have questions why he mentioned needing stent up high on right side? Where? And he really isn’t pro stent.
Hey @birdie1 Sorry you are having to go through all of this. I agree with you about starting with the right since the left is very small. Did he say where higher up? Is there stenosis in the transverse sinus or somewhere else? Even with IJVs, the compression can be removed but that doesn’t always mean the blood flow will return to it. Veins are very plastic, unlike arteries that are very stiff, and can remain lax. Once the points of compression have been removed at the C1 level a stent can be used to keep it open if it doesn’t stay open on its own. Unless something has changed, Dr. Nakaji does not do the stent placements but works with someone who does.
I agree with @Isaiah_40_31 , that a shunt would be the last resort option, ideally the compression , in my opinion, should be fixed first if they can… We have had discussions about shunts before:
I will try to get confirmation what the placement of “higher up” means. I have had Dr Mehta do my venogram, But I would probably go back to Dr Arcot in NY for a stent. Maybe Dr Fargen, but surprisingly he was very negative about stents, his views have changed and has had some unsuccessful events and I think it has changed his opinion. He wanted shunt because the methazolamide really helped my symptoms prior to allergic reaction, so he felt a shunt might help. But I sure wish i could get a one and done surgery, this little body cant go thru too much more.
Hi I just wanted to chime in about Dr. Costantino’s office. I am having a lot of difficulty with the staff as well regarding my insurance. I was denied three times now, and the person who sent in my last appeal said he was thrown into the job without training. I know there’s a lot of staff changing right now and I hope they find some better people ugh. I was ready to do surgery with him but this whole insurance thing has been a disaster. I’m sorry you’re struggling so much, not an easy decision to make regarding doctors
Hi, I am so sorry you are going thru the prior auth with a similar experience. They had me calling my insurance to get prior auth and it just does not work that way. So i am done! I understand all of these providers are busy, and the staffing can sometimes be difficult, but his office is not helpful at all. I needed to have another provider contact Dr C to try to get this approved, and still nothing. You may want to consider other options, but continue to hang in there just in case. I don’t know what to say, disappointing And he is “in network” for me, while the other providers i had surgery with are “out of network”???
And he is “in network” for me, while the other providers i had surgery with are “out of network”???