Personal Progress, such as it is

just letting the forum know about my (lack of) progress:

I joined the forum a couple of years ago, after several years of pain and a diagnosis in about 2016 or so - it’s been so long I barely remember.

I have bilateral Eagles and live in Auckland, New Zealand: a land of few people, many sheep, great beauty, hobbits and orcs.

While I have been under the ‘care’ of an ENT doctor here in Auckland, there are no surgeons in the country that have done any Eagles surgery. I have been sent backwards and forwards to various clinics around Auckland, had many scans and seen many doctors. Only two of them have ever heard of Eagles before I saw them, and only one had actually seen another case. They all say ‘not me’ and pass me back to my ENT doctor.

So the last time that happened, my ENT guy said that they would not pursue a surgical solution: they would only offer me a drug solution: I currently take Pregabalin which usually reduces the pain level but does not stop it, and sometimes I feel the full brunt of it regardless of the pain relief I take.

And unfortunately that is the good news :frowning:
I have put my search for a solution to the Eagles on hold because I have been recently diagnosed with lung cancer - and in the same week as my wife was diagnosed with breast cancer. The only lucky part of this nightmare is that both of our cancers have been caught early, and our prognoses are good.

After we have got through the treatments and are cancer-free I will resume my search for a permanent fix for the Eagles. I would like to try the surgeons in Melbourne, Australia but the Covid situation there precludes that for the foreseeable future.

If I make any progress I will return and let the forum know: until then to all fellow sufferers - Kia Kaha everyone.
Stay strong and stay safe

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Lofty99 -

WOW! I am so sorry to hear of your family situation but thankful that you & your wife’s cancers have been caught so early! I’m also sorry you’ve been passed around from doctor to doctor as you’ve tried to get help for ES. Generally an ENT cancer specialist who does surgery in the same part of the body where the styloids live would be willing to attempt an ES surgery. Head & Neck surgeons, Maxillofacial surgeons & Neurosurgeons have also been known to do ES surgery. Because your country is small, you may not have access to all these different specialties. I also understand that ES is not your first priority at the moment.

I’m glad you’ve been given a nerve pain med that is at least helping w/ your pain sometimes. I guess being able to “take the edge off” is better than suffering the full brunt of it continually. I hope you’re able to find a surgeon in Melbourne who’s willing to help you when the time is right for you.

I love the humor in your second paragraph. New Zealand is a place my in-laws loved to visit & I hope to see your country one day myself.

I will be praying for you & your wife for peace & healing during this very challenging time.

Sending a hug for encouragement :hugs:

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Oh poor you…at least there’s a glimmer of light that the cancer’s caught early. Do you know what treatment you’ll need- surgery, chemo, radiotherapy, all of them? Best wishes to you both for that, and I hope that the pregabalin keeps on helping you…if not there are other nerve pain medications which can help, might be worth trying otherwise?
Feel free to keep popping back on here to let us know how you’re getting on, not just the ES but the cancer treatment too.
Sending you both hugs & God Bless

Thanks for your support, and the suggestions for future courses of action. We will indeed be continuing the search for an ES solution in the future, after we win the current fight.

Live long and prosper

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Wishing you the same, Lofty99!

Gosh, I’m so, so sorry to hear this. Here’s hoping your cancer treatments are both extremely successful and that you can continue to pursue your ES treatments sooner rather than later. Completely understand that that needs to be on the back burner for now, and I’m glad that your pain has been reduced so that it is at least manageable.

While there are many advantages to living in your country (hobbitses and orcs, for one!), not having specialists who know ES is a distinct disadvantage. I hope you can at least enjoy the sheep and beauty in the meantime.


So, an update for anyone that may be interested:

I have now been referred to a new Head and Neck surgeon (after my GP asked for a second opinion) - this guy is an Australian currently working here in Auckland - and has actually performed the styloid reduction surgeries (though not yet here in Auckland). He is generally easier to talk to than my previous ENT doctor, and is much more familiar with the intricacies of ES treatments.

He has asked for a detailed CT scan of my neck after reviewing a PET scan I had for my cancer treatment: it shows a hot lymph node/gland in my neck on the left side. He wants to rule out cancer (given my lung cancer diagnosis) but admits it may be actually ‘hot’ from irritation caused by the elongated styloid (60mm+ om the left side) rather than showing high sugar burning from cancer.

He has also stated that, after the CT scan and any action arising from it, he will consider doing the surgery on my left side styloid (the longer of the two, and the one that gives me the most pain), to see if that may reduce the symptoms without adding to the neuralgic pain I am already getting.

So, that is the good news.
For anyone interested in our cancer treatments I unfortunately have both good and bad news.

My wife was diagnosed with Paget’s Disease of the Nipple, and had a partial mastectomy to remove a small (6mm or 1/4 inch) tumor, and some lymph nodes. Unfortunately the lymph nodes were positive for cancer so she has to undergo chemo (6x treatments, the last starting on Thursday - our 37th wedding anniversary :frowning:) and radio therapies (15x over 3 weeks, starting about a month from now) and then goes onto hormone therapy (way less invasive) for a couple of years.

I was diagnosed with a small tumor (adenocarcinoma, 25mm or 1 inch, stage 1A3) in the lower lobe of my left lung: the biopsy taken to prove it was cancerous caused my left lung to collapse (pneumothorax) that caused the most unbelievable pain: I thought I was having a heart attack, and so did the doctors for a few minutes!
So: stage 1 cancer in one lobe of my lung, very treatable. I had laparoscopic surgery on 11th September, where they removed the lower lobe of my left lung, and some lymph nodes.

The lymph nodes were negative for cancer - but the biopsy on the lung lobe that was removed showed no cancer, so new scans were done on my chest, and it was found that the surgeon had cut down the blood supply to the lower lobe but then accidentally removed the upper lobe! So, 18th September I had a pneumonectomy: they removed the remainder of my left lung.

Recovering from a second and much more invasive operation has been slow and painful. I am working again but still getting weekly physio and pain management treatments, and have been scanned last week for my respiratory specialist, who is happy with my progress.

So: mixed results, but hopeful still of a full recovery (though I will be cutting down on the number of marathons I run :slight_smile:) for both of us.
And now it looks like there may be a way forward on the ES front as well, so can’t really complain.

Thanks for reading this far, if anyone does so: for all of us the ES is a road well travelled and progress is often slow an invariably painful.

Stay say, one and all

So good to hear from you Lofty99! WOW! What journeys you & your wife have been on & all at the same time. I remember your last post where you mentioned you were both dealing w/ cancer diagnoses. I’m glad the outcome is expected to be positive for both of you.

What a horrific experience for you that the lung surgeon made such a terrible mistake. It sounds like you took it in stride & have moved on toward your healing goal. Dealing w/ all that & w/ bilateral ES is really tough. I’m so glad you’ve found a likeable & knowledgeable surgeon to help you deal w/ ES. We would love to have his name & contact info at some point (or did you already provide it? Sorry, I can’t remember).

I will continue to pray for complete cancer healing for you & your wife & for you to be able to have surgery to get your longer styloid removed soon. Do remember that some symptoms can be caused by both styloids when they’re elongated so some symptoms that remain may stay put until the second styloid is removed. I certainly experienced that scenario in my case.

What a difficult journey for you & your wife! You sound so positive, I’m sure that’s helped you manage a scary experience…very glad to hear that the prognosis seems good for you both now.
Glad that you have someone in mind to tackle the styloids when you’re up to this!
God bless & will pray for you & your wife :pray:

You are an inspiration to all of us. You have climbed a mountain and still survived. As an FYI: when I had es surgery last year, that had to remove a lymph node in my neck. I think it is common to do this during ES surgery as they have to cut thru them to remove styloids. I noticed in the operative report that it was noted as high reactive…alot of activity. Biopsy showed benign. I would agree with your new ES doc that its likely “hot” from the irritation. It sounds like you finally found a doctor that can help you successfully walk the ES path. Wishing you and your wife the best and that you soon will be able to put all this behind you. :smiling_face_with_three_hearts:

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Lofty here again, with some more news on my personal Eagle journey:
As noted earlier I had a lung removed due to medical misadventure and after more than a year looking for drug/treatment options that would let me work effectively - i.e. with no/minimal pain and also with a clear head, as I write software) I have given up for now and have ‘retired’ at least temporarily, with benefit support due to the accidental nature of my neuropathic pain.

But the good news: I am at home after having my left styloid cut down by Dr Kevin Smith, who operates (literally) out of a hospital here in Auckland: he is an Otolaryngology Head & Neck Surgery specialist, primarily treating neck cancers. For some patients it is necessary to remove or reduce the styloid process to get at tumours, so he has done several styloidectomies - if that is the word. He has also in fact performed some specifically to treat Eagles Syndrome - but chooses his cases carefully as not all pain in the neck area is down to Eagles.
In any event he has done mine, and I am recovering at home. There are no immediate side effects (like issues swallowing or speech problems due to accidental damage to the tongue etc) so I am hopeful for a full recovery and positive outcome.
If it is successful, and I get relief from the symptoms then he will do the right side styloid as well, which is also elongated.

So, a win for me and we can add Dr Smith to the register of surgeons who have dealt with Eadles!


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So sorry that you’ve had to retire from your work, I hope that it is just temporary! That’s really good news about your surgery- I hope that you heal well & that your ES symptoms improve quickly…Very good that we have a doctor in NZ for our list!
God bless x

Hi Lofty!

Good to hear from you after such a long time! Great news about your ES surgery. Not so good about the lung removal & inability to continue working. :cry: I, too, hope you get really good results from the styloidectomy (yes it’s a word! :blush:). I do want to say that sometimes, symptoms take up to a year to go away & sometimes, symptoms from the remaining styloid cause “crossover symptoms” to the side where the styloid has already been removed, creating the deception that the surgery really didn’t help much. I had that happen. For some people to get full symptoms relief, both styloids need to be removed even if pain persists on the first surgical side. I hope you & your surgeon will consider this scenario when the time comes to decide about a second surgery or not. Hopefully, the surgery you’re recovering from will provide optimal results so a second round is unnecessary.

Take it easy for awhile so you can heal well!
:pray: :hugs:

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