Headed to Denver tomorrow

General
283

The longer I’m on this forum, & the more post op scans I see, the more I realize that even the best, most experienced doctors don’tt achieve the planned goal in every surgical case. We don’t know what goes into the decisions regarding how short to cut a styloid/stylohyoid ligament & move or remove other soft tissues during surgery. I expect there are factors unknown to the doctors themselves prior to surgery that contribute to those decisions.

I feel extremely sorry & sad for our members who don’t get good surgical outcomes & who need to continue searching for the right doctor to do revision surgery or whatever might be necessary to help symptoms resolve.

I am an optimist & try to see the silver lining during life’s challenges. I’m also a fan of the saying “What doesn’t kill you, makes you stronger”. That may not seem true while in the midst of suffering, but there are good things that can come from it. I have made some amazing friends on this forum whom I would have never known without having ES. I thank God for that.

4 Likes
284

I can see from your images that your styloids are very thick, @stuuke. I’m sure that plays a role in their contribution to your continued IJV compression in addition to their angle & length. It’s curious that one curves inward & the other outward.

I’m really sorry your first round of surgeries weren’t successful. I know this has been a drain for you financiallyl & hard on your family & business. I will pray for you to have wisdom regarding your next steps. :hugs:

2 Likes
285

All that suggests that the root cause of your symptoms might not even be the IJV compression, but something in the abdominal area. There are various reasons for central venous compression, from being overweight (one of the common reasons) to having malformations/tumours/plaque.

1 Like
286

@stuuke there are a lot folks that had their Styloid not fully removed at skull base and who happen to have residual compression and only felt their symptoms disappear after revision surgery. One of them is @elijah whose remaining Styloid was about the same size as yours. He only felt his IIH symptoms disappear after bilateral removal of the styloids at skull base. Below is his image after the first surgery. You can see the remaining Styloid is still compressing his IJV. The second image is the revision/second surgery that removed the remaining Styloid. Perhaps you can try Hackman who is known to remove both at the same time as he has done for Elijah if you only want to have Styloids removed. Similarly as I suggested you can try Dr. C & Dr Lo in NYC to remove both Styloid and shave C1 instead of stenting. I am afraid your stent might fail given the bony compression of Styloid and C1.

Here is his image after 1st surgery which left portions of the Styloid on the left side.

image
image1032×1000 178 KB

Here is his image after the revision surgery that removed the remaining right Styloid at skull base. He felt tremendous improvement.

image
image635×957 69.1 KB

Please note sthe sides are different (first is left side and 2nd one is right side). This is for illustration of what skull base removal look like.

2 Likes
287

I could not agree more on this with @Isaiah_40_31. Dr. H is great doctor and has an impeccable record in terms of favorable surgery outcome but even the best of doctors can at times miss or for reasons unknown to us, leave some Styloid remnants. Perhaps facial nerve preservation or other plausible reasons. It is true that they are human beings as well who are performing multiple operations and can overlook certain things.

2 Likes
288

Would I need a referral for Dr. Constantino or Hackman? Should I share this information with Dr. Hepworth and get his opinion? Lots to take in.

289

I think you need to share this finding with Dr. Hepworth to see what he says. Hackman does a lot of revisions bilaterally only for Styloid, not sure what the procedure for referral is. Similarly for Dr. C but the advantage for Dr C is his clinic does both C1 shave and Styloid removal. Don’t know what you need to see them.

2 Likes
290

@stuuke - It is a lot to take in, & I’m sure it’s shocking information for you to receive. Kind of like an unexpected punch in the stomach. Here you thought all was well w/ your IJVs & something else was going on. In that respect, perhaps you have some sense of relief that there’s nothing that’s been missed, just no recovery from the initial problem

I agree that Dr. Hepworth should be made aware of these findings. Because you know stenting & ballooning won’t help when the IJVs are still compressed, your next step to consider is revision surgery. I don’t believe either Dr. Costantino or Dr. Hepworth require a referral. It’s probably best to contact their offices to ask though.

2 Likes
291

I finally feel like the really strong flare-ups that I felt after the procedure are calming down some. Still a little congestion but finally getting past Covid as well.

3 Likes
292

COVID has proven to be a nasty bugger for some of our members. Not necessarily the COVID symptoms themselves but the way it’s caused ES flare ups even among those who’ve had surgery somewhat recently.

I’m really glad you’re feeling better & your “adventure” with COVID seems to be on its way out. Since you already had sinus issues, it’s not surprising that the virus caused some nasty congestion.

2 Likes
293

I have a telehealth appointment with Dr. Hepworth tomorrow. I’m going to send him Kooldudes report and hopefully get some feedback. I took some time away from the Eagle’s issue and focused more on my digestive problems. After the disappointments with Dr. H and Dr. Fargen I think I needed to re-energize a bit. I’m pretty much back to where I was before my procedure with Dr. Fargen. I’ll have some bad days with strong symptoms and other days that aren’t that painful but still have fatigue, ringing in the ear and some pressure.

3 Likes
294

I hope that you get some answers, so sorry that you’re still suffering :pray: :hugs:

1 Like
295

I’m so glad you posted an update, @stuuke! I’ve been thinking about you the last few days & was going to send you a message soon since you’ve been gone awhile w/ unresolved symptoms. Your journey has definitely been among the rougher ones here (for many reasons!). I am also hoping (& praying, of course) that your next go around w/ Dr. Hepworth produces some good new information that will help you get resolution to your symptoms.

2 Likes
296

A couple of updates.

First, Dr. Yoon-Hee Cha in Minnesota got back to me. She responded to my email within one day! Dr. Fargen recommended her for Botox in my SCM area over my jugular. She said with insurance I’d have to go in for a series of visits to get approval.

  1. Fly in Wednesday. Appt with me at 4:30pm
  2. Quantitative ultrasound venous and a head CT venogram done in 2 head positions on Thursday
  3. A trial injection of anesthetic on Friday morning. Keep diary for 6 hours of injection effect. Fly out Friday evening.

I don’t know if it would be beneficial but I don’t really see the harm in trying it other than more money/time away. It’s probably the least invasive thing I can do.

I also spoke to Dr. Hepworth. He said he hadn’t received my notes/conclusions from Dr. Fargen :frowning: I logged into my portal and sent him the test results in PDF form. My symptoms are strong today so I might get some of this wrong. He thinks it’s worth looking at the right jugular as the next possible solution since there is a greater difference in closing when I turn my head than on the left side. He is going to order an ultrasound to measure the flow. He said a C1 shave is a possibility. He also wants a CT scan of my ear to see if there is thinning above one of the canals. He said that often happens during long time exposure to high pressure and that it could be causing the ear pressure. I’m going to try to get the imaging done this month so it goes on insurance for this year.

He looked at Kools report and didn’t have too much input. He said that he didn’t remove the entire styloid because of where my nerves were in relationship to the styloid. Once he gets in there and looks around he makes the determination as to how much he will remove.

I still don’t know how a whiplash caused all of this mess.

2 Likes
297

@stuuke - Kudos to Dr. Cha for her efficiency in responding to you. That’s really amazing!!

Dr. Hepworth’s recommendation of decompressing your right IJV might make the most difference for you. Even though we’ve heard, & read, that the body can function just fine w/ only one working IJV, it seems the majority of our members who’ve had bilateral IJV compression have benefitted most when both sides were decompressed. I’m glad Dr. Hepworth is starting to do C-1 shaving though I still have mixed emotions about how safe that is from a cervical stability standpoint. I’m not sure there’s a lot of evidence one way or the other on that issue, but I haven’t looked for research on the subject.

What Dr. Hep is looking for w/ the CT scan is SCDS - Semicircular Canal Dehiscence Syndrome which can be, as he noted, a side effect of long term high pressure inside the skull. It is also successfully repaired via surgery though you may have to travel west for that as the most notable surgeon is in Los Angeles from what I understand. You’ll be well acquainted w/ the U.S. from all your travels to specialists by the time you’re done, but hopefully the end result is that you feel good & can get back on track w/ your life!

2 Likes
298

I don’t know what to think about additional surgery. It’s still crazy that I haven’t noticed anything one way or another after removing a styloid and plugging a hole in my head. Hopefully the new imaging will tell something conclusive but I’m a little concerned about just cutting out more bones in the hope that it does something.

1 Like
299

Very glad that things are moving forward for you! I’m so pleased for you that you can try something non-invasive with the very efficient sounding Dr Cha, and pleased for you that Dr Hepworth is looking into some surgical possibilities to help resolve your symptoms… :hugs: :pray:

1 Like
300

If I may offer a suggestion. Most people don’t know that botox can cause very serious issues. It doesn’t in most people. But has a black box label for the few of us who do. One round of botox for migraine and cervical dystonia took me a year to get “over” but has left me with some potentially lifelong impacts.

I don’t say this to scare or even put you off of trying it. It helps many many more than it hurts and you need help. I am so sorry that surgery has not helped you at all.

The one bit of advice that I would offer, is to ask for a baby dose of it the first time. You may not get as much benefit in the first round because of it, but if you are going to have a bad reaction to it, it will hopefully be smaller than it otherwise would have been because of the lower amount used. And 3 months later they can increase the amount.

I hesitated to write this, but I wish someone had suggested this to me. So please take this with the good intention I send it with. I had no idea and just blindly trusted that it would be fine, or that at worst I’d feel a bit rough for the first couple of weeks (my Dr did warn me of that as a possibility - but only of that…)

3 Likes
301

Thank you for your post @akc. I think it’s important for us to share the good & bad of the many different things that we can try to help relieve symptoms. As you said, a bad reaction is pretty rare, but there’s no way to know in advance who the next “victim” will be so it’s a great benefit when starting something new to know what the possible benefits & detriments can be.

2 Likes
302

Had my CT scan today. From the report it doesn’t look like anything stands out. I’m still trying to schedule my ultrasound. It has been a little more difficult to find a place that meets his specific requests so looks like it will go on next years insurance.

CT TEMPORAL BONE WITHOUT CONTRAST:SCAN: Axial/coronal/oblique sagittal reconstructed multislice high-resolution axial acquisition.INDICATION: Superior semicircular canal dehiscence. Pulsatile tinnitus.COMPARISON: CT venogram head from 11/16/2022, CT sinus from 05/25/2022

FINDINGS:RIGHT -MIDDLE/EXTERNAL EAR:Mastoid pneumatization is developmentally normal. Mastoid/petrous air cells are clear. Areas of thinning of the tegmen mastoideum without evidence of dehiscence. Tegmen tympani and sigmoid plate are intact.Middle ear including facial/epitympanic recesses, sinus tympani, oval/round window niche is clear. The ossicles appear normal. External auditory canal, tympanic membrane and scutum appear normal.

RIGHT -INNER EAR/FORAMINA:Cochlea appears normal. No labyrinthine ossificans/otosclerosis is present.Semicircular canals appear normal. No dehiscence is present.Vestibular aqueduct appears normal.Internal auditory, carotid and facial nerve canals appear normal.Jugular foramen appears normal.

LEFT -MIDDLE/EXTERNAL EAR:Mastoid pneumatization is developmentally normal. Mastoid/petrous air cells are clear. Areas of thinning of the tegmen tympani and tegmen mastoideum without evidence of dehiscence. Sigmoid plate is intact.Middle ear including facial/epitympanic recesses, sinus tympani, oval/round window niche is clear. The ossicles appear normal. External auditory canal, tympanic membrane and scutum appear normal.

LEFT -INNER EAR/FORAMINA:Cochlea appears normal. No labyrinthine ossificans/otosclerosis is present.Semicircular canals appear normal. No dehiscence is present.Vestibular aqueduct appears normal.Internal auditory, carotid and facial nerve canals appear normal.Jugular foramen appears normal.

SINONASAL:Imaged nasal fossa, nasopharynx and parapharyngeal fascia appear normal.Partially imaged mucosal retention cyst in the right maxillary sinus. Mucosal thickening or retention cyst in the left ethmoid sinus.

CRANIOFACIAL:Visualized brainstem, cerebellum and cerebral hemispheres are unremarkable.

IMPRESSION:RIGHT TEMPORAL BONE:Normal appearing inner, middle, and external ear structures.

LEFT TEMPORAL BONE:Normal appearing inner, middle, and external ear structures.

CRANIOFACIAL:Partially imaged paranasal sinus inflammatorychanges