Hello, all. I am so grateful to have found this forum. I have been reading through so many threads. It has been so helpful in understanding all of this and calming a lot of my fears. Thank you all!
I was referred to Dr. Hackman for a bilateral styloidectomy by Dr. Ross Hauser in Florida. I had 3 rounds of prolotherapy (which did make a slight difference in my symptoms), but he was the one who noticed the styloids and ordered CTV’s and CTA’s which confirmed elongated styloids (4.2 and 4.7 cm), “significant” compression of my left IJV (also confirmed with ultrasound), benign intracranial hypertension, and I believe a calcified stylomandibular ligament. My main symptom is a left-sided tremor (arm and leg), along with other symptoms that would probably be more noticeable to me if I wasn’t experiencing the constant daytime tremor (it settles while I sleep).
As I plan this, I have a couple questions that come to mind first. Marsela at Dr. Hackman’s office (who is amazing, by the way!) mentioned that many of the patients will travel home on day 2, saying (like many here have said) that the pain and swelling are worse on days 3-5. My travel home would involve flying with a layover in Chicago or Minneapolis. I’m wondering if traveling that soon would increase pain and swelling. I was initially planning on staying in NC for a week. I would love to hear others’ experience and recommendations!
Another question… if most of my issues are on the left side, what do you all think about doing a bilateral? Will the right styloid, which is the longer of the two, eventually cause issues?
Marsela and Nicole are going to try to schedule my initial visit with Dr. Hackman and the surgery in the same week, so I don’t have to travel twice. Although it sounds like I’ll have to wait longer if we do that. I am ready to get this done! Hope to know more soon.
Thank you all
I’ll try to add a couple images from the CT scans.
Your styloids look very long & the right one is really something! Your right IJV appears to be dominant as it’s much larger than your left one. Did you get any feedback regarding whether it is also compressed?
I’m concerned about your comment regarding having “significant” compression of your left IJV as Dr. Hackman will remove your styloid(s) as close to the skull base as possible which may help relieve the pressure on the left IJV, but sometimes, the transverse process of C-1 is also playing a significant role in the compression in which case, removing the styloid isn’t all that’s needed to allow the IJV to re-open. Dr. Hackman doesn’t work at all w/ compression caused by C-1, therefore, it would be a good idea for you to get a second opinion from Dr. Costantino in NY as he does do IJV decompressions that involve C-1. I know this will put off your surgery, but you don’t want to have to get revision surgery if the first one doesn’t help with your IJV compression. Decompressing the IJV(s) should stop the benign intracranial hypertension which is a common symptom of IJV compression.
If you choose to stay w/ Dr. Hackman (he is an ES excellent surgeon), then I would recommend getting bilateral surgery because your right styloid is so long & is most likely causing at least part of your current symptoms. We’ve noted that most of our members who have bilateral ES, & who only have one removed at a time, end up w/ worsening symptoms from the remaining styloid as they recover from their first styloidectomy. I can speak from experience here.
Regarding travel home, if you have someone along with you to help you, you could probably do the flight home two days post op but you will definitely want to arrange for a wheelchair to take you to & from the gates at each airport. You will be exhausted the next day & possibly have more pain due to the stress of travel & extra post op swelling. I’d recommend staying for a week after surgery if that’s doable.
Hopefully others will chip in about their experiences travelling; it’s tricky because recovery is so much nicer at home, but flying isn’t easy! If you do decide to stay, some members have used the SECU housing, & others have mentioned where they stopped, @HappyBear , @Elena , @slekeille & @vdm all stayed locally…
I agree with @Isaiah_40_31 that you could well find that the other side does start to cause more symptoms after the first surgery, so that’s a decision only you can make- recovery from bilateral surgery is obviously harder, but you only do it once!
Yes… Dr. Hauser also mentioned the C-1 involvement and also stated that the right IJV is dominant. No mention of IJV compression on the right side.
I would love to contact Dr. Constantino, but he is out of network for my insurance. I’ll have to take a serious look at that, though. Do you know if others with C-1 issues have had any luck with Atlas Orthogonal treatments after styloidectomy? I’m also continuing curve correction techniques suggested by Hauser. I definitely want to do this right… I’m mentally prepared for surgery, and I’d rather go through it once.
Thank you for the travel advice. My gut feeling has been that a week would be best. Makes me a little nervous thinking about traveling that much on day 2!
Thanks, Jules! I would love to hear about others’ experience with SECU housing. It appears that you get placed on a waiting list and call the day you arrive to find out if there is a room available. Is that the case?
It has been SO helpful to read recovery stories from bilateral surgery. I feel like I’m ready to take this on!
I believe most of our members who’ve tried AO treatments did it before surgery as opposed to after, and it didn’t make enough difference that it prevented the need for a C-1 shave or IJV relocation (different approaches by different doctors) during the styloidectomy.
We have several members who have insurance where Dr. Costantino is out of network, but because they needed surgery with an unusual twist (i.e. jugular vein decompression along w/ styloidectomy), they’ve appealed for surgery to be covered anyway. Most have been successful in getting surgery approved by their insurance, however, the process can take a bit of extra time. @lilwider just went through this process.
On a more encouraging note, we have a number of members who had vascular symptoms which went away after Dr. Hackman did their styloidectomy(ies). We also have a few who had to have revision surgery by another surgeon later. I’ll pray you are in the former group, not the latter.
Dr.C is well worth the fight! Do not take no from your insurance for an answer. Appeal , jump through the hoops they want you to, see the Drs they suggest. Keep good notes keep symptoms tracked. Question and challenge their knowledge on eagles. File for an advocate and file a complaint with the state that your health needs are being ignored and you have been denied quality health care. You can do this. Be patient and don’t give up. AO had helped somewhat but has not given me relief I need to get my life back. I have already been warned by my AO Dr. He will not treat me after surgery. Sending good thoughts.
Thank you for this info. It’s interesting that my insurance covers Dr. Cosantino’s clinic, but not him specifically. Definitely worth some phone calls. Question, though… Will he do a bilateral? Would I still possibly be looking at 2 surgeries?
I don’t recall seeing anyone have bilateral with Dr. Costantino… It may be that Dr. Hackman is the only one who does bilateral, although doesn’t treat IJV specifically… some with mild IJV compression have received benefit from styloid removal alone (with Dr. Hackman).
@DeeCeeNorth - Dr. Costantino doesn’t do bilateral surgery. It would require 2 surgeries. Most surgeons are in that camp with bilateral ES patients because amount of post op swelling in the throat & neck can sometimes be unpredictable & varies from patient to patient, thus they err on the side of caution. Dr. Hackman used to put a “neck bra” on his bilateral surgery patients after surgery was complete. This was a type of compression bandage that helped prevent swelling from becoming excessive. He doesn’t seem to use that device anymore but I’m not sure why. Maybe he’s determined it’s not really necessary.
I’m on the waitlist for the SECU, but I didn’t feel comfortable calling that day and hoping for the best. I booked through Medstay.com, which gives you a discount, although not as much as the SECU. I’ll probably check with the SECU that morning because it’s still about half the price. I’ll let everyone know once I get up there on the 19th how it worked out with SECU and/or Medstay.
The cool thing about SECU is that you can still use their free transportation even if you don’t stay with them. If they cannot accommodate you, they will help you find a room at a discount. You will need a referral from Dr. Hackman’s office.
Yes… the reduced rate and proximity of SECU would be nice, but I don’t want to worry about last minute housing! I’ve also been thinking about a VRBO/Airbnb so we can cook our own food… especially if we stay for a week.
Are you scheduled for surgery with Dr. Hackman on the 19th? Bilateral?
My insurance includes First Health Network. Seems that if C-1 is an issue, I’d be headed for 2 surgeries either way… if I go with Dr. Hackman (bilateral and then C-1) or Dr. Costantino (left styloid and C-1, then right). Am I thinking about that correctly?
Got an appointment with Dr. Hackman… but not until mid-May. They are able to schedule the initial appointment and surgery the same week, which is awesome, but I couldn’t help but feel so bummed when I heard I have to wait until May. This has been challenging, and I am so ready to do this. I am on his cancellation list, but they won’t know if we can do both in the same week. At this point, I’m willing to travel there twice. I’ve read enough posts in the forum to know the frustrations that many have had in scheduling, and I know others have had more debilitating symptoms for longer than my two years dealing with this. Ugh. I’m just ready to get this done.
Do I count my blessings and wait, or try to schedule with another surgeon? Dr. Hepworth and Dr. Annino are in-network for my insurance, but I need both styloids removed, so that would mean two surgeries. I also know there are surgeons who are closer in MN and WI, but because of the IJV compression, other issues (including the tremors), I kind of prefer to have someone with a lot of experience.
I trust and know this will work out… just had to vent. Tired and frustrated.
My suggestion is to call Dr. Hackman’s office several times a week to check for a cancellation. We’ve had several members do this who have gotten their appointments moved up quite significantly. The downside of this approach is you need to be able to go at a moment’s notice as sometimes the cancellations are the same week or the following week. If you have that kind of flexibility, it’s worthwhile to try this.
Dr. Hepworth is probably booked out to June or beyond at this point. You could try Dr. Costantino in NY as he is the other surgeon who specifically does VES surgeries. Someone posted today they just got an appt. in Feb w/ him.
It’s frustrating to wait, but like you’ve said, if you saw someone else it would be 2 surgeries, and most doctors want you to wait at least 3 months between them. If you’re able to go at short notice, as @Isaiah_40_31 says it’s worth ringing to try and get a cancellation…
I thought I responded to you. My mind lately I am scheduled for my right side only with the potential to have bilateral. My symptoms on my left have kicked up after having a bad cold with lots of coughing. I messaged Dr. Hackman, and he said he wasn’t opposed to doing both sides and we could discuss it more when I arrived.
I’m scared to do bilateral because it seems like the recovery is much more intense. But I’m also scared of going through the procedure twice. The left side is being removed, which is about 5cm off the styloid and almost 3cm growing off the hyoid. They are poking things they shouldn’t be and need to come out first. This side is usually so painful when he asked about pain in my right I couldn’t think of it.
My right side is 8.9cm and fused from styloid to hyoid. I can feel it crunch and roll over things it shouldn’t but generally it doesn’t hurt. Who knows what it could be doing neurologically or vascularly. After my cold, I started experiencing pain behind my right ear and I imagine it’s from jarring the styloid around so much while sick.
I am scheduled for my right side only with the potential to have bilateral. My symptoms on my left have kicked up after having a bad cold with lots of coughing. I messaged Dr. Hackman, and he said he wasn’t opposed to doing both sides and we could discuss it more when I arrived.