New member, surgery in september

General Eagle Syndrome Stories
21

I had my follow up with Dr Hui
He is exited to hear about plavix helping out so much and after surgery he may have me try something else.
This further confirms that flow restriction in the IJV, once it’s free and open up, we should see improvement in flow and reduction in symptoms.
Suggested a three month follow up with catheter veinogram to confirm successful decompression of the L IJV.
He said he may have to put in a stent,
I am not as exited about a stent as I have seen quite a bit of info regarding increased flow restrictions, and failures in these high mobility areas of the body.
I Will remain positive as I believe he is just informing of other possibilities.

Surgery with Dr Hepworth on the 13 of this month and I will be making the trip over to Colorado soon.
Still pretty nervous but I am a believer, this all makes sense and as far as brain blood flow and drainage are concerned
The amount of nerve interaction is still unknown and as we learn more this may show other areas of compression or irritation. Dr Hepworth seams like a great fit for the job and I am just so greatfull for connecting with these skilled and passionate doctors.
Dr Hepworth will also be doing a omahyoid resection on the right side, due to compression and potential adhesion of the right IJV in the lower neck area.
He said this is common in whiplash populations.
When I turn to the right both left and right IJV become compressed at the same time and add another layer to the flow problems.
It’s pretty crazy when I connect the dots as L styloid to calcified ligament to hyoid to omahyoid to right shoulder blade seam like a pretty well connected bunch of parts.
I can attest to waking in the night with major head ache ear ache and tinnitus event when sleeping on my stomach with head turned to the right or left.
I am still working with sleeping on my back the whole night but just have not gotten the right pillow and angle thing worked out yet,
there is a wealth of suggestions here on the site that I am working through and I am so thank full for all the input members have put out there :smiley::hugs:

Thank you @Isaiah_40_31 and @Jules for all your input into the site and all the time you spend with everyone’s journeys

@Jules and others have put out a tremendous amount of time and energy to help catalog allot of the questions that I have had on my mind and I encourage those reading to check out the newbie’s section and the search function.:hugs::pray:
I have been reading, and there is so much info here
I am getting my first ever recliner donated today :grinning: so happy,

I am still dealing with other areas as well, we also did a catheter venogram blood flow evaluation for TOS on my right side a couple of months ago. Dr Hui found another flow problem with my R brachioceplic vein area with my arm at rest I think I w 4 units and rasied it went to 36 units. He referred me out to vascular surgeon for first rib resection.:flushed: and the idea was to wait on the eagles procedure till after the rib removal and recovery.

About a year ago things peaked and I have been having loss of strength in my right arm, poor grip strength , fore arm feels like swollen or cramped most of the day and gets worse with use ,
Feel like I have hyper mobility of the right stereo-clavicular joint and increased neck pain in this area. Both at the S/C joint and the base of the scull on the right.
My tinnitus became constant daily, only varying in intensity and sound type. Headache, eye ,and ear pain and symptoms ramp up until Dr Hui’s intervention.

Does anyone else have speech difficulties?
I have strange pauses when speaking and a stuttering like at times. Seams worse when I am trying to talk about complex subjects or “speaking off the cuff” trying to answer questions one after the other, and ? Sometimes it flows smoother maybe when I am less stressed
Dr Hui said he has noticed this in some patients with IIH and cerebral venous congestion symptoms.
I am hopeful this may also be fixed, it has been terribly embarrassing to deal with at times
My wife and I laugh mostly at it now and she just calls it my accent,
Love her so much❤️

First vascular specialist said this in not a slam dunk case of TOS and sent my out to another Vascular specialist for a second opinion, that has more experience in the nerve entrapment type of TOS
She ( the second) VS, has now just confirmed it is not a classic case of TOS nerve, or vascular compression and does not believe a first rib resction is going to help.
I failed the “roose “ test and not what she normally sees.
This is great news :smiley: as I have been so overwhelmed with the new development, and researching the heck out of TOS. And loss of a rib. And upcoming eagles procedure.
So I can keep my ribs for the now and we will take care of the brain flow issues for the time being
:pray:Thank you lord
Man my heart goes out to all dealing with TOS as well.

I would like to see a 3d rendering of my area of compression and am amazed at what members have been able to show/ point out with the images that are uploaded. As well as the guide posted for doing so
I am working to get my cpu in order and some images loaded. I am hoping I can get this done before I leave to Colorado.
This has been difficult lately as the brain fog and confusion, loss of passwords and disorganization have had its tole on my day to day .
The head aches and burning feeling in my head seem to increase with critical thinking, organizing , trying to type (lol) also math, following instructions etc…

I am so thankful for everyones input and experiences, and the sharing of such deep personal struggles
:call_me_hand:
Will be updating shortly
Big hug to all those going though similar journeys
This pain is only temporary and there will be brighter days and a new tomorrow
Love and aloha :call_me_hand:

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22

Thank you for such an encouraging & optimistic post, @mekanX!

The mental deficits you’ve noticed are just part of the brain fog experienced w/ IJV compression/Vascular outflow obstruction. It should clear up once your IIH is relieved though it can take a few weeks to a few months after surgery. If your ES is bilateral then it may not fully resolve until both IJVs are open.

As far as getting 3D images of your CT scan, some of our members have been able to request those from the radiology lab where the CT was done. Not all labs are willing to produce them but some have been. It would save you a lot of time & effort if your lab could help with that. There are also some of our members who might be able to help if you can upload your images to dicomlibrary.com.

I’m excited that your surgery date is approaching! I will be praying for your safe journey to Denver & that your surgery goes perfectly. :hugs:

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23

I have not had any luck with the radiology labs here ,
I do wonder about the whole c1 vertebra question. “to shave or not to shave”
I have been seen by a Nucca chiropractor , in the last month to address anything we could possibly due to help the area of compression.
He did find rotation to the right and tilt up on the left, did before and after X-rays,
It has helped with posture and mid back,I feel more planted on my feet and seam to have more energy.?
I am glad it is helping and I think I will continue after healing up. Although the head aches and fog persist

In my recent searching for answers for TOS I found a really interesting approach regarding body and patterns of disfunction .
This looks to be promising and I have spent quite a few hours listening to his videos, trying to understand the concepts behind recognizing the patterns and the right exercises and therapy for individual recovery. At this point it only makes sense for me to pursue a P/T who has done the training and is certified instructor
Ron Hurska and PRI

Maybe the right therapy for keeping the C1 in place or in conjunction with uppercervicle adjustments (non high velocity)? For those who have not had a c1 shave ?And directed personal therapy for whole body alignment, “relief from tension “ patterns
The feeling of my eyes feeling crossed at times, maybe there is a connecttion to these patterns of disfunction or tension? It just so much info to go over and I am just amazed at how much info and seminars there are regarding this.
I have just learned of some folks who completed his training locally and will each out for an evaluation after healing .
Maybe there is something there that someone here can benefit from. I don’t know but the “ if “ is worth mentioning.
@smallgirlbigmoutains has mentioned a tangle of nerve and vein was discovered with the styloid during her procedure.
It sounds like a condition like this would be aggravated by the P/T intervention and the “reversal of such patterns” through this targeted P/T or any type would only make thing worse
It seams so complicated at times
My P/T has been directed at posture and correcting forward head posture in general
Nothing really targeted for eagles syndrome, but some of the exercises we did really aggravated my symptoms and I got the typical “I get sore there sometimes too” and just work though it.
Anyhow
Thank again for your input @Isaiah_40_31 :pray: to you and I wish you some extra healing today
Your in my prayers of healing and recovery

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I’m glad you’ve found some info that’s been helpful re:TOS. You truly may find the TOS type symptoms subside once your styloid is gone & IJV decompressed. We have a substantial number of members who’ve mentioned that chiropractic care &/or PT before surgery tends to aggravate symptoms. Many of the concerns you have now about post op PT & physical imbalances may also cease to exist once you’re recovered from surgery. It’s really crazy the number of symptoms ES causes & somewhat miraculous how well our nerves heal once the irritant is removed.

I will watch the video you sent. You may also be interested in the links @vdm posted yesterday as they propose an explanation about how wrong movement patterns happen in our bodies which cause pain & what is necessary to begin correcting them. I found the information quite interesting & logical.

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@mekanX

If I may present a professional opinion as a PT about this quote from your post. If at any time conservative treatment ie: PT, chiro, massage, pilates, yoga etc increases your symptoms or pain you should stop and re-evaluate, not “just work through it”. The traditional treatment to correct forward head posture will in effect bring the styloid into a more compressive position in relation to the structures exiting the jugular foramen (CN IX, X, XI, sigmoid sinus which turns into the IJV) depending on the anatomy of the styloid base and orientation (angle and curve) and length. That said, you may have more relief by letting your head come forward vs. chin tucked in until the styloidectomy is done this month. It is best to keep your symptoms as quiet as possible before the surgery and address the postural piece afterwards. Be gentle with yourself.

Hope this is helpful!

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I hope that your trip for surgery goes smoothly, and of course the surgery itself! I’m so pleased that you’re able to have it soon, and hope that it resolves many of your symptoms…will of course be praying for you :pray:
Re PT, one of our members wrote an article on this which you might find interesting, here’s a link:
WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article - General / Research Papers - Living with Eagle

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This is an excellent article. I have spoken with the author, the case study presented is from her personal experience. This should be a widespread basic evaluation prior to any manipulation of the CCJ in any practice. Thanks for posting this @Jules !

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Terrific, thanks for links I will look into those today
Boy I do hope they will subside after the slyloid and calcified ligament removal
The right side is just so sensitive to weight loading and overhead ,and reaching movements, the right s/c joint and area of neck .I had always thought there was just something missed, hoping for the best outcome and clear answers .
Thank you so much for your input, time and energy :pray::hugs::heart:

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Boy thank you for that, and coming from a P/T who is knowledgeable about eagles really means a lot to me.
Yes the “chin tuck “ you know all to well, the first line in posture correction from my multiple attempts with PT

@JustBreathe “The traditional treatment to correct forward head posture will in effect bring the styloid into a more compressive position in relation to the structures exiting the jugular foramen (CN IX, X, XI, sigmoid sinus which turns into the IJV) depending on the anatomy of the styloid base and orientation (angle and curve) and length.”
This really makes sense to me and seams so straight forward
Thank you for your suggestions it is very helpful
Although I have kind of been in a panic to get more done before the trip, it has only added to my frustrations. I need to be forgiving to myself and just roll with it for now. I will take your words to heart and try not aggravate things before I go, to take it easy for now and save my strength for recovery
:pray::hugs::heart:
At some point I also wonder if maybe a artery may also be affected, as when I side bend to the left I get these black out spells, I loose my ability to stand and fall to the ground, feels like I will pass out but then I get major whooshing event in my head and ears and then I feel fine after a min or so. Is that a synoscope type of event ? I also have major whoosing events after I yawn.

@Jules thank you so much for your positive thoughts, support and prayers
What a great link I will be reading it today, I have so much info to catch up on

@CoHDa
Oh boy you are right we have had quite a bit of similarities with our journeys

I am working on catching up with members stories and it is allot to take in, we have all been though so much
I do hope that though all this there will be others that have an easier time navigating the heath system, and come to there diagnosis and therapy sooner than most of us have had.
I am so thankful for all the input and resources
Thank you all so much
Big hug going out to you all
Best wishes :pray::hugs::heart:

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It does sound as if you could be right, that there might be arterial compression. Keep strong!

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The black out spells when you lean right are definitely concerning. I agree w/ you & @Jules.

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@Jules thank you
@Isaiah_40_31 thank you
Giving my warmest and heart filled thanks for keeping this site up and providing direction and most of all your prayers
I give thanks to all the members that share there stories and provide support and prayers
You folks are the best people

My day is today and I walk foreword and lay all my fears aside and put my life in the hands of my lord and savior
I put my faith in god to guide all those involved in my care today
This has been a ruff road and I pray that the worst part of my life will be over soon
Unwaivering faith
:pray: love and aloha to you all
Will see you all on the other side

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Let us know how you are when you can :hugs: :pray:

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@mekanX - You’re in my prayers today & going forward as you heal. May this journey deepen your faith. I agree w/ @Jules, please let us know how you are & what Dr. Hepworth says about your surgery when you’re able. :hugs:

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Well first off Dr Hepworth is just amazing. His demeanor and energy was so comforting to me. His ability to make me feel at ease and to explain the procedure instilled such a confidence in his ability.
The staff at st Luke’s was welcoming and made me feel comfortable during my intake and recovery
I was told the procedure went well and with out complications
I was in recovery room for about an hour and able to take ice chips and my favorite treat of popsicle’s was also a nice surprise that felt great on the throat before discharge.

I was not able to speak with dr Hepworth after the procedure, but understand he was out doing what he does best and providing great care of another patient. My sincerest gratitude and thanks go out to him. I am just so fortunate to have come into his care.

There was some throat irritation from the air tube that was in there as well as some swallowing back of throat pain (maybe some muscles)
Surprisingly I did not feel a lot of pain to the incision sight or area around the left styloidectomy at first
I did also have an omahyoid resection procedure at the same time to free up the right side IJV on the lower area of my neck and was feeling some discomfort there with movement and swallowing.

The drive back to our abnb was little bumpy and I had some tenderness, stiffness and tinnitus for about 30 mins but no head aches.

I did not get much sleep and although I have some sleep meds I chose not to take them yet
I am taking norco for pain relief at the moment, it is most likely working but I am really not sure how painless it should make me feel. The pain is tolerable but increases when talking a lot or neck movements.

It is now the day after surgery and Ice chips have been good for the throat and smoothies so far for food
Ice packs for the neck have been relieving and I have found crushed ice in a soft felt bag (that was given at the hospital ) has been the most comfortable on the neck. 20 min on 20 min off was recommended
The larger pieces of ice have been a little pokey at first and the plastic bag “soft “ice packs that I bought feel stiff and uncomfortable.

Tinnitus has been present since the evening, through the night and into the morning
Some numbness of the chin and around the jaw area is present
Some head ache while I am typing but light pressure

My anxiety was flaring up after my pre-op appointment the day before surgery, but I decided to take the opportunity to take a country road drive to Nederland with my son. Was truly a great way to just live in the moment and enjoy life.

I just kept telling my self to “let go and let god” when my thoughts drifted.

The support I have received from my family has been incredible and brings me to tears again and again when I think of them all and what we have been through for the last 6 years.

I understand this is just the beginning of recovery and the road to getting my life back on track is just beginning.
The body needs time to heal and I don’t yet know what challenges I will encounter along the way.
Just working to spell and typing is causing a good amount a head ache pain at the moment so I’ll update again soon
And provide surgery report when I get it
Time to rest up

@Isaiah_40_31 and @Jules Thank you for your support and prayers
thank you for all you and the other members have done and continue to due to inform and support and maintain this site.

All my love and prayers of healing go out to those people and family’s dealing with eagles syndrome

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I’m impressed @mekanX! What a thorough post so soon after surgery. It’s really great that you’re doing so well. The next 4-5 days may see your pain increasing, but it should start settling down a bit during the 2nd week post op.

Prescription pain meds don’t erase pain but do as you noted - make it more tolerable so the Norco is doing its job.
I’m sorry your gel ice packs are stiff & uncomfy. Some brands are more pliable than others when frozen. I’m glad yoi’ve found a workable solution & are continuing to us the icing system provided by the hospital.

You didn’t mention that you’re doing this so I will bring it up - head elevation while resting or sleeping lying down is very helpful in reducing throat/neck swelling. Definitely not super comfy but it is helpful. It took me a couple of weeks to start sleeping through the night.

I hope you begin to notice positive improvements soon. It can take a few weeks for that to start. :heart::sunflower::hugs:

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Yes I am sitting up resting and while trying to sleep ,I have a bunch of pillows on the couch
Takes a little to get comfortable , getting up every hour to walk around for 10 min was recommended to prevent blood clots in my legs ?

I am getting some strange sharp pin prick type pain in my left heel that comes and goes , I guess maybe during the procedure it was on something? Not sure why but strange
I am expecting the 3~5 day increase of swelling and pain ramp up, so for the moment just trying to take it easy when moving, and trying not to turn or bend my neck to much , but that seams hard to not turn and bend
Definitely feel some type of muscle pain involvement in the neck while eating some soup today too much chewin. I don’t want to over due it
Thanks for suggestions :call_me_hand::heart::pray:

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Pin prick pain in your heel could be coming from your low back (L-5/S-1) The nerves may be a bit aggravated from not sleeping in a normal position. You could try icing your low back, too, if the pin pricks in you heel don’t stop in a couple of days. That might help calm the nerves.

Yes, walking frequently is meant to help prevent blood clots in your legs. You don’t need to hold your neck perfectly still. Some movement is good to help keep the muscles from getting too tight. You can judge how much to move by how it feels when you turn your head. As you noted, just keep trying not to overdo it. :blush:

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Take care of yourself, it’s great to hear how you’re doing but don’t worry about typing too much if that’s making you feel worse! So pleased that you have family support, praying that you’ll heal well and can enjoy family life again…‘let go & let God’ is great advice indeed :hugs: :pray:

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@mekanX I have been away from the forum for the past 2 weeks or so and missed your big day, but I am so thrilled to see from your posts that you’ve come through the worst with great faith and hope!

I had to chuckle a bit about your “accent,” because I had one for awhile too. I never thought of it as an accent, but maybe if I had I wouldn’t have been so anxious and embarrassed by it. Mine began in the fall of 2017 and was diagnosed as vocal fold paresis, edema of the larynx, and laryngospasm episodes with talking. An MRI also found asymmetrical lingual tonsils. Looking back I highly suspect that all of it was due to inflammation caused by ES and the positioning of the styloid likely leaning on some nerves. Hopefully, now that you’ve had the surgery, your accent has gone the way of that pesky styloid, into the operating room trash can.

Enjoy your popsicles and continue to rest. You’ve made it to the other side of the mountain.

Wishing you peace and wellness…

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