@Rosie@Jules thank you all for your insight and advice. This is a lot to take in.
Are there any doctors in California that could do this surgery? What about Damrose at Stanford? Traveling out of state is literally not possible for me and my little family. The cost, the time, all of it, I wish I could do it, but there’s no way. Maybe if I wait another 5 years, but not with a hyperactive toddler, me being the sole bread-winner, having no help other than my spouse (who also needs to care for our little one), and with our finances being as tight as they are.
Ugh I feel like this is a nightmare I cannot wake up from.
@SeekingInfo you’re definitely in a tough position. I will add that ES is typically progressive because calcification continues. So the longer without surgery there is the potential of worsening symptoms. I’ve been bedridden for a year. If I had the surgery a year ago I wouldn’t be bedridden. As the sole bread-winner this is something you need to consider because it could get worse if not addressed. But it’s also possible things will remain the same. Chronic IJV compression though is not good for the brain though, with more research positing that it can increase the risk of neuropsychiatric problems like dementia. Not trying to scare you, but just trying to highlight that ES can be more of an emergency than people think.
Fortunately for you, California is one of the states with the most ES doctors. Most notably Dr. Samji.
I have a consult with Samji, but because it’s being suggested that my case is vascular- with IJV, that means I’d have to travel to Colorado, Arizona, or New York. Do I have that right?
I’ve read that Damrose may be able to help with VES but haven’t read any testimony’s from folks who had vascular.
Whoops, just read higher up in the thread where you discuss the doctors.
Dr. Osborne surgical technique does help with vES - that is, he cuts the styloid above C1. What he doesn’t do is C1 shaves. And I’m not sure you need a C1 shave or if just the styloidectomies would be enough. I believe I saw in another thread that Dr.O doesn’t think C1 shaves are necessary, in that removing the styloids allows the IJV to open up. So you don’t need a “vES” surgeon in the sense that they need to shave C1, you may just need any ES surgeon that cuts the styloids above C1. I know Dr. O does (his incisions are right below the ear), but I’m not sure about Dr. Samji.
@SeekingInfo - Skip your appointment w/ Dr. Samji & save the $600+ fee you’ll be charged. He did both of my surgeries w/ mostly good outcomes, but I later found out I had left IJV compression which he didn’t deal w/ & left my left styloid significantly longer than the right one which left the IJV compressed. Dr. Osborne or Dr. Damrose would be your best bet in CA. Dr. Damrose books out quite far as he’s in the Naval Reserves & is away serving our country several times a year so your wait to see him could be long. He trained for doing IJV decompression under Dr. Hepworth, however, I also haven’t heard of many people having him do their vES surgeries nor have I heard about outcomes. In your case, I think Dr. Osborne or Dr. Nakaji would be your best bets for a good outcome. Dr. Hepworth is also up there but is booked out pretty far.
Thank you. I think you’re right, it’s unfortunate as I was really thinking Samji was going to be my best bet for insurance purposes and location, but it doesn’t sound like it would be the wisest choice.
I’m hoping to get an exception for Stanford/Damrose, but recognize that process takes time.
I’m also open to seeing Dr. Osborne, and have sent in all my information. With that said, the out of pocket costs are terrifying.
So, I have a few questions- is Dr. Samji not the right fit simply because he doesn’t remove styloids all the way past C1?
I know that based on my scans, it looks like I may have more of a vascular component than what I originally suspected, but I really don’t have any vascular issues, besides what I attribute to my POTS (tachycardia when standing and drops in blood pressure when bending down to standing- but keeping head upright/same position).
Would Dr. O be able to take care of IJV (I’m still really unclear as to what that even entails)?
I guess my bigger question is, if I were to say, I can either do the surgery with Damrose or Dr. O, rather than any of the other surgeons that specialize in VES, is it even worth doing? My only symptoms I really fully relate to Eagles is nerve pain along the SCM and maybe some slight ear pressure. I’ve always attributed my array of other symptoms to vestibular migraines or POTS.
And lastly, is there one doctor over the other (Damrose or Osborne) that I should be placing more priority with in seeing for this surgery?
Sorry again for all the questions. You all really are my angels right now.
God that would be amazing if that was the case and my POTS would go away with the surgery. But if this is the case, would the surgery involve more than just a typical styloidectomy?
Nope! It would just be a styloidectomy above the level of C1.
Here’s research showing that stimulation of vagus nerve can treat POTS. So if compression of vagus nerve (by styloid) reduces vagal tone, than removing the styloid could result in proper stimulation of the vagus
Hi @SeekingInfo unfortunately I can’t give you any advice with regards to US surgeons as I am in the UK, but I see @Isaiah_40_31 has already come back to you . I wish you all the best in finding the right doctor to help you.
Since you have no vascular symptoms, Dr. Osborne would be the best doctor for you to see for surgery. Is he a provider for your medical insurance? If not, you’ll need to reconsider Dr. Samji due to the astronomical cost to have surgery w/ Dr. Osborne if paying out of pocket. Even with that, it would still be worthwhile getting an opinion from him.
Dr. Samji will tell you he removes the styloids close to the skull base, but my experience on this forum is that “skull base removal” has a different definition for each doctor. For some, it’s leaving styloid stubs that are .05-1.0 cm for others it can be 1.5-2 cm which is often not short enough to relieve symptoms. Dr. Samji cut my right styloid pretty short but not the left one. I did get resolution to some of the symptoms I was having which were caused by the IJV compression I didn’t know I had at the time. If you do end up having a consult w/ Dr. Samji, ask him what “cutting the styloids back to skull base” means to him i.e. how long are the stubs that are left?
Dr. Osborne cuts the styloids back very close to the skull base (i.e. the first measurements I mentioned) but my experience w/ Dr. Samji is that he leaves them a bit longer.
“Taking care of the IJV” simply means removing the sources of compression so the IJV(s) can re-open fully & allow the deoxygenated blood drain from your brain at the rate your internal carotid artery(ies) are bringing freshly oxygenated blood into your brain. Sometimes, just removing the pressure from the styloids is enough for the IJVs to re-open fully but other times the transverse process(es) of the C1 vertebra continue to compress the IJV even when the styloids have been removed. In those cases, the TPs of C1 need to be shaved a bit to provide more space for the IJVs.
All that said, we have had a number of members who had IJV compression & only had styloidectomies w/o anything being done to C1 & their outcomes were excellent. Since you don’t have any vascular symptoms, there’s a good chance that the styloidectomies alone would be enough to give you relief from your symptoms.
Initially, I think you’re on the right track i.e. get a consult with Dr. Osborne & possibly w/ Dr. Damrose, or possibly w/ Dr. Samji (I know I’m back paddling here). Getting two opinions is worthwhile.
Here’s a link to a great discussion written by @Jules regarding ES surgery that will be helpful for you. Closer to the end is a list of suggested questions to ask any doctor you interview about ES surgery. I will add that you should also ask for specifics about the doctor’s surgical approach & whether or not surgical clips are used during surgery & left in after surgery. Some doctors do use them & fail to mention it prior to or after surgery. I have one surgical clip on each side of my inner neck that Dr. Samji put in place & wasn’t aware of it for several years until they showed up on a scan I had for another issue. Thankfully they aren’t causing me any problems, however, we currently have 2 members who have surgical clips that were left in place & which are now causing pain. It can be very difficult to find a surgeon who will remove them when that happens.
I really feel for you, it’s such a difficult decision as to which doctor you see; we’ve had members who have seen 3 of the more ‘expert’ VES doctors & got slightly differing opinions from each of them…I wish that we could give you a definite answer! I only found a couple of posts by members about their ES surgeries, here’s links: My ES Journey - General - Living with Eagle Surgeon suggestion - Symptoms and Treatments / Doctor Information - Living with Eagle
There are lots about Dr Osborne, especially recently, but then there’s the cost issues… he does do video consults so if that’s easier for you with a toddler it might be worth a consultation?
Sending you a hug, & prayers for the right decision
My husband Sonny is on the calendar for the IJV Styloid surgery and after that the other side!
Referral needed! Dr. Damrose and his team are EXCELLENT to work with! So glad we went. Stanford team did 2 tests that he wanted his team to do and now waiting to be put on the schedule! Dr. Damrose told us it’s an overnight stay after a 2 1/2 hour surgery, ive already checked on hotels. Not as expensive as I thought in Palo Alto!
Go prepared for initial visit, I gave the team a list of “ALL” his symptoms and “ALL” of his medical. It makes a difference.
I’ll let everyone know when the date is set! My husband is so done with this disease!
The traffic is horrible but it’s worth it! Travel time has been 3-4 hours drive to Stanford and 4-5 hours drive home from Northern CA. I can’t imagine traveling to another State or Country! Stay safe, Cheryl
@Cherylc - That’s really good news! I’m so glad your husband’s appointment went well & I hope his surgery dates are set soon. It’s usually 3+ months between surgeries so the first side can heal.
Please be aware that surgery is NOT an instant cure for ES & vascular symptoms. It can take quite a number of months post op before significant improvement is realized. I’m telling you this so you can both mentally prepare for that. Occasionally positive results occur more quickly, but we like our members to be prepared for the long haul. Doctors who do these surgeries commonly underestimate healing time.
Things that will help your husband especially the first week post op, & possibly beyond, will be icing his neck for 20 min. every couple of hours. Gel packs that can be frozen or heated are best so they can be used later in recovery for heat if desired. He should use a thin cloth between skin & ice pack to prevent ice burns.
Sleeping with head elevation of ~30º for the first week post op will also help reduce swelling in his throat & neck. A wedge pillow can be very helpful w/ that unless you have a bed where the head can be elevated then that’s an easier solution. If opioid pain meds are Rxed, make sure he starts immediately after surgery taking a daily laxative & stool softener so he doesn’t get constipated from that. Two to three daily short walks (10-15) min. will help w/ blood circulation & healing as well. That can start as soon as the day after surgery if he’s not dizzy.
Having a stiff or sore jaw post op & a sore throat are very common so we recommend having a soft diet at the ready in case eating is difficult for the first week or two. Drinking plenty of non-sugary fluids (60-90 oz daily) also will help flush the surgery meds out of his system & staying well hydrated helps w/ healing.
First Bite Syndrome (facial pain on the operated side w/ the first few bites of food) is common & can last for several months but almost always completely resolves. A lower lip droop on the operated side post op is also not uncommon & is the result of the facial nerve needing to be moved during surgery. That will also resolve in a few weeks to several months. These are things doctors don’t generally mention when discussing surgery so we bring them up here. These side effects of surgery do not happen to everyone, but it’s good to know they can.
Please let us know your husband’s surgery dates. @Jules & I put them on our calendars & will pray for him especially then.
Isaiah, Thank you so much for the post surgery information! I just read it to my husband, Sonny. He also said to thank you.
I’ve requested Doctor Damrose to keep him over 2 nights because of his age and comorbidities will see what insurance allows. I also asked Dr. about his C1 and he said his was fine. So no shaving!
Thankful for the reminder that the symptoms might not go right away after surgery but take awhile to settle and leave. So will TRY to be patient! We are looking forward to this wavy/dizzy and symptoms to go away!
And for others “YOU HAVE TO BE YOUR OWN ADVOCATE” to get referrals, to not be dismissed, and find a doctor that will “HELP” find a cure or a way! After our visit with Dr. Lenaerts and I was at my wits end I just started crying in his office - he didn’t know what to do except to let us know he wasn’t giving up on us! And that is how we made our way! Plus your group has helped with so many questions answered!
Will be back to update soon so carry on! Prayers to all going thru Eagle Syndrome. Cheryl
