Going to Cancer ENT next monday

Hello, everyone. I do not post much anymore, been in too much pain. After rotator cuff surgery and a c6-c7 fusion. I am still not well. I have constant pain in neck and shoulders. It is as though my trapezius muscles all the way up my neck just freeze in the contracted position. I have ear pain, sometimes feeling like something stuck in my throat, sometimes throat pain, tinnitus, migraines eye pain. Some of it on the left, some on the right and the tightness is bilateral. As some of you know, I had a partial resection of the left intraorally in 2013. In 2016, I had a new CT showed left 3.05 cm and left 5.1 cm. Dr Samji will remove the right but no guarantee that he will redo the left, perhaps later. I sent records to Dr. Jason Newman in PA, because he has personally removed the styloids on the son of Earmom, not once but twice, so he knows they grow back. He is willing to see me, but that means a flight from Fl to PA just for an appointment. However, Monday August 13, I have an appointment with the head of the Oncoloy ENT department of our main hospital in Baton Rouge,La where I often stay to visit with family.
I ask all prayer warriors and friends to think of me over the next 6 days and keep thoughts that my appointment will not be cancelled. I have been waiting since the end of May. I understand this doctor is easy to talk to and will not be dismissive, though I have no idea if he will be able to do or be willing to do my surgery. I have been counting on him to be willing to do it, so I hope I will not be disappointed. I would love to be able to have surgery and drive 30-40 minutes to my own place and recuperate in my own environment. I may need to wait for surgery until I can see my neurosurgeon in Fl and get his approval after reviewing the fusion, Regardless, I am hoping for a yes, I will do the surgeries.
Otherwise, I will be sending records to a couple more surgeons,but none that I know of that will do external any closer than a 2 day drive or a long flight and long hotel stay to recover.
I can palpate the styloid in my upper palate now, even though it was not palpable when my CT scan was taken in 2016. I can also palpate the styloid or most likely the calcified stylohyoid on the right side way down in my jaw area between my upper and lower jaw. Though it is not nearly as thick as the one on the left, the CT scan clearly showed it in that area in 2016. I have almost constant jaw pain and though I do have a crooked jaw, I never had jaw pain before I had Eagles, and it disappeared for about 2.5 years after I had the left side partially resected.
Another symptom, I get is some sort of inflammation around those areas that feels like a big lump as a lymph node, but when I palpate the area, the very hard lump dissolves and a mucous like thick saliva begins to choke me. I wonder if the styloid and or stylohyoid put pressure on a salivary gland and keep it from draining and the lump appears. The lumps are extremely painful and when released, I get immediate relief.
As many of you know, I am no newbie, but I have been hoping and praying that all my pain was from some other source. I have been to a neurologist for neck and spine EMG and nerve conduction studies, but nothing showed up. I have been to therapy for neck and back and nothing has helped for more than a day. After the intense pain that I suffered with my C6-C7 fusion and not able to tolerate narcotics, not able to take NSAIDs because of bleeding and now off steroids because of Glaucoma, I am weary.
However, after seeing several Glaucoma specialists, I have found that they believe I can manage my Glaucoma and take steroids after surgery for swelling if my surgeon wants to do that. I believe Dr Samji does do that and that his surgeries are often easier, so I have at least one side that I can possibly do there, but it is CA and the closest place I can fly from is Louisiana.
As I said wish me luck on Monday. I would love to find a really good skull base surgeon close to home. I could not find any in Fl near me even though there are some that do the surgery, I did not feel they were right for me.
The side that needs the redo will be the one that I want to be sure I have a surgeon for. I hate to do the right side and then not have a plan for the left, because I cannot even think of being stuck with no one to redo it.
I am so hoping to move forward and at the same time so afraid that I might be in worse pain, and I am sure that it can happen, and I do not have anymore strength to bear anymore pain.
I so love you all because I really have no one with whom to share my feelings other than my spouse who is so supportive, but this can be a lonely journey as most of us know. No one knows our chronic pain even our closest friends cannot understand. Glad some of them at least sympathize and stand by us.
Hoping one day to feel able to get back on this site more often. My love to you all and you are collectively in my prayers.

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Of course we’ll pray for you Emma; you’ve been through so much I will be praying that you will be guided to the right doctor & the right decision, & that you will have an end to your pain. You’ve done so much to help others on this site with the doctors list, it’s so frustrating that you’ve not had a successful surgery yourself…
Just a note- if you’re fight & the styloid is blocking a salivary gland, the salivary glands can be massaged regularly to make sure they don’t get blocked. It’s only a small thing with all your other symptoms, but might help- there’s clips on youtube showing how to do it, might help a bit to try that regularly?
Let us know how you get on, & thinking of you! :pray: :hugs:

Hi Emma ~

I completely second all that Jules said regarding your situation. I know you are familiar with many details of ES but I’m wondering if your shoulder pain/spasms are also related. The axillary nerve is one that sometimes becomes irritated by elongated or angled styloids, & it affects some of the shoulder muscles. Resolution of your shoulder pain post op would be fantastic!

I will also be praying for you especially on 8/13.
:blush:

Hi emma!
I had that trouble with my right parotid in the early days of all of this. A cause was never diagnosed despite all the tests! Yes, it is painful - similar to the 1st bite syndrome every one talks about here. I was always able to put a warm moist wash cloth over the lump and massage it away or drain it basically. Never knew what was causing it, but my right parotid is basically atrophied now. The left one has only recently began to give me problems.
I sure hope you have a productive upcoming visit with the doc - got my fingers crossed this is the one!!!

_I think I have found the right doctor for me in Louisiana. I finally saw the ENT oncologist here in Baton Rouge, La. He does, indeed ,remove styloids for cancer reasons, in fact, he will be doing so this week. He made sure that I am aware of the issues and the fact that sometimes neuralgia does not go away and that there are complications like facial paralysis and vocal cord paralysis. He said that long time issues maybe will not go away, but he is willing to do surgery. First though, he wants to get a **NEW 3D CT scan as the one I did 2 years ago could have changed some and he wants to do an MRI in my neck to locate all the nerves and veins etc, and to rule out any other issues. I am so ready for him to do that. I did not ask him how many times he had operated on Eagles patients, but he was familiar and he was kind and thorough and comfortable. I know he has done it before and he can operate where he needs to. Also, I was impressed with his examination, he already saw the pictures, so he started his evaluation at finding the stylohyoids at the hyoid area.
I did not push him to understand my back and shoulder pain, but at some point he mentioned that kind of pain. I told him that those pains are also a problem for me,but I will never know how many pains will be eliminated unless I do the surgery, therefore, I am sticking with the ear pain, face pain, and inability to lie on either side of my face and the fact that I have addressed all known possibilites for my neck pain except eagles and nothing has helped.
He definitely noticed my very out of line jaw. I was thinking he would blame that. I told him that my jaw has been that way since childhood. I have never had any issues with pain until I had Eagles. After my first surgey, for about 2 years, I had no pain, it is coming back. I also said that I realize that I may need jaw surgery,but I would not find it appropriate to do jaw surgery as long as the eagles had not been addressed. It would not make sense. He did not argue.
Before, I do the surgery, I will ask a few more pertinent questions that I may have forgotten to ask so this is not an absolute, but I am encouraged and relieved.
My left styloid is still partially there and attached to the hyoid, which I already knew because my doctor had done an internal surgery. I am so glad to have found him. So now I wait for his nurse to set up the scans. Then we will make an appointment.
This doctor thanked me for the previous surgery report especially the pictures of the part that was removed and the 3D slicer image that we made of the CT scan. He was impressed even though our skills were very crude. Thanks to those of you who gave me the idea. I found this website only 4 days before my previous surgery and I found that others got pictures of the surgery and what was removed. Also, thanks to the member who posted the tutorial for the 3D slicer. I have made copies for several doctors and though they do not even know what Eagles is, they have now seen it and learned a bit. Every contact with every doctor may be helpful to another patient in the future. What I really liked is that my doctor had a 4th year medical student with him.

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Oh Emma, I’m so glad for your great news! How wonderful that you found someone closer to home for you & especially a doctor who is both compassionate & competent. It will be interesting for you to see what your new CT scan & MRI show.

I hope you’re able to have surgery soon. Good job in persisting in the search for the right surgeon to take care of you. Due diligence pays off once again.

:hugs::sunflower:

That’s good news, so glad he’ll help you & you felt confident with him. Let us know how the scans go & when you get a surgery date. Hang in there in the meantime…

I hope they schedule the scans soon. Once I get them, and have a second appointment, I will have more specific questions to ask? I was overwhelmed and on edge on Monday. I know that I have a lot of questions and concerns to be addressed, but I have not been able to remember them lately. Perhaps a sign of submission or exhaustion or denial, not sure which? I am ever so grateful to all of you and to BensFriends. I have looked at some of the other forums and we are a very active forum. For that I am ever so thankful. I believe for us to have found each other, all of us, is an amazing blessing.

emma - If you search julianeagle’s posts, you’ll find that she had cognition issues as part of her ES symptoms. Once her elongated styloid was removed her mental clarity returned. Thus, it could be your brain fog is an ES symptom.

Because my jugular veins were compressed, it was causing Intracranial Hypertension- one of the symptoms is ‘brain fog’- my thinking was definitely impaired, I’d feel a bit like I was drunk, & had to really concentrate to follow conversations etc. So it is possible with ES! I had to write everything down so I wouldn’t forget, & have you got anyone who could come with you to the appt. to hep take everything in?
Glad you find the site helpful- you’ve done your share to help others on this site!

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Emma, we’re so glad that you find being here helpful. Yes, this is a very active community with very nice people like you, who share and support others. The moderators here are top-notch, and we’re proud to have this community part of the Ben’s Friends network.

We hope things work out well for you! Do stay in touch.

Seenie from Moderator Support

Update, my surgeon did MRI of brain and neck and CT scan of neck. I have history of benign tumors and thyroid cancer. All of it is normal except for some fat tissue where I should have strong muscle in my left jaw. That is from congenital defect that I have. My jaw is misaligned and I cannot chew on the left side. However, I do have the ability to open my mouth and clench. I guess it is just weaker. I have several muscles that are weak, but I am 67 years old.
This doctor knows Dr. Cognetti is friends with him and just came back from a trip to PA as a guest lecturer at Thomas Jefferson Hospital. How blessed can I be?
He is very kind, very informed, very cautious and he will do my surgeries. His idea was to start on the left side and complete the surgery that was partially done 5 years ago because that styloid is very thick and I have most of my Eagles symptoms on that side and in my neck. However, the stylohyoid on the right is most painful upon touch at this point. I agree and I know as you all do that we have to start somewhere. He will also remove the stylohyoid ligament and anything that is affected. He explained how he tags the nerves and has some sort of electrical impulse on them. I know some of you have mentioned that.
I am ready to do this. I just have to wait for the nurse to call me with a surgery date. I may actually call her today and leave a message as she was not around when we left.
Our first doctor in Louisiana. Dr Daniel Nuss, The Lake Head and Neck Center Baton Rouge, La. He works out of Mary Bird Perkins Cancer Center and he is a skull base physician.

I’m really pleased that you’ve found someone you feel confident in, & with him being friendly with Dr Cognetti, that’s a bonus! I guess it’s best to go along with whatever side they’re comfortable doing first. I hope that you get a date very soon, & keep us posted!

Oh emma! What FANTASTIC news!!! I’m so thankful that God is answering your (our) prayers for you in such a clear way. I also hope your first surgery date is ASAP so you can begin the healing journey. You need to be able to enjoy your family & your “golden” years - not be suffering through them.
:heart:

I hope to be the bearer of more good news. In the meantime, thanks Jules and Isaiah_40_31. Thanks to everyone who has shared information since the inception of this forum. I have been encouraged and learned so much from so many on this group. I hope to pass something good on to others.

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Emma-

You already have passed on good things to people on this forum over the years you’ve been here! Going forward will be the “icing on the cake”! WE APPRECIATE YOU!!

:clap: :bouquet: :two_hearts:

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Surgery is scheduled for Sept 5, I replied a few days ago,but did not send the reply. Just hope all my pre-op went okay, and nothing shows up to prevent it… Throat pain, and hoping it is just the Eagles and not an infection. Nothing to indicate an infection, just stress, I believe, hope.
We have a tropical depression, maybe tropical storm supposed to hit on the same day. Praying, the surgery is not cancelled or moved, but I have no control over that. I do not want to come home to no power, so we just have to go with the flow.
Today is a holiday, so we only have one business day left before the surgery. I am hoping to have it done and over with. I do not handle recovery well, because of medication side effects, so I know that will be another hill to climb, but my goal now is to relax and deal with that once I wake up from surgery.

Hope that all goes well, & that the surgery doesn’t have to be postponed, & that you’re able to get home safely to power in your home. In know you care for others, do you have someone to take care of you afterwards?

Emma,
I’m so glad to read that your surgery date is soon! I’m praying the tropical storm diverts to another location, or even better, dissipates completely. I know this has been a long haul for you. I will also be praying for a textbook surgery & seamless recovery for you.

:pray: :heart:

Hopefully TS Gordon will come in fast and stay east so as not to mess up your surgery. I just got home from my surgery in San Jose, CA late Saturday night and now we’re looking at a TS or small hurricane coming in. I’m in Slidell, LA but as long as it stays east of us we shouldn’t get too much of it. This is not another Katrina:pray::pray::pray:

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