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Eagle Syndrome - Online Support Group

Surgery in a few weeks

Hi Kay,

Funny thing! I went to visit a friend who lives near the ocean earlier this week, & we decided that next trip we would rent kayaks & do some kayaking in the bay near her. The last time I kayaked was in 1985 in Alaska. It was beautiful so I can only imagine how wonderful your dream was!!

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Yes, it was such a peaceful and hopeful dream that I would be able to kayak more…the Eagles has prohibited my river kayaking in the last several years. I am doing pretty well today…sore throat continues some but not bad…looking forward to some lazy time today to just ice my neck and lay low…tried to do a bit more than I should have yesterday…I HATE laying around…too much fun out there to take it easy but I will! Praying for all my Eagle friends who have recently had surgery…hoping your post-op healing is going well! Get that kayak rented and enjoy a peaceful ride Isaiah!

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Thank you BrooklynGirl. I think all my prayer warriors help lead me to calm waters during surgery so I could enjoy that kayak ride! Hope you are doing well!

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May you heal quickly & with as little discomfort as possible, Kay. That kayak trip will become a reality soon!

Hi friends,

I am having the usual increased swelling at day 4 and trying to take it easy. Ice and trashy novels go well together…ha ha! I am having more pain in my upper palate than I wish I did. It feels better when I drink warm fluids but I am wondering if that might not be so great for swelling…any thoughts? Just seems to be a lot of mucous or something (sorry…too much information…). Overall though, I am thankful that I am doing as well as I am. My incision looks pretty bunchy and swollen. I may not have helped the swelling yesterday when I tried some gentle lymph drainage…always have to push the envelope a bit…I am not a patient person but I guess I may have to learn to be in this healing process. I can’t take ibuprofen or restart my aspirin until tomorrow ( I have a history of a blood clot) and I think ibuprofen will really help when I can take that. I continue to pray for all who have had surgery recently for a positive, comfortable and peaceful day and weekend!
Kay

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Good morning Kay,

So sorry to hear things are not going so smoothly…ughh. Just a thought here, you may want to limit or stop all dairy for a while, it is known to increase inflammation and mucus production - maybe that will help some if your system is sensitive like that. Also, Maybe stick to only the gentle finger tapping just above your collar bones and the “Spock V” hand placement around your ears followed by the light stroke down the side of your neck to the collar bones as a flush for the lymph drainage…if that isn’t the technique you are already doing.

Hope this is helpful, if not trash the ideas and listen to your body - it always knows best! Thinking of you today, be well and float on…

Hi Kay,

There are some people who have felt better w/ heat than ice post op. Though intuitively, heat early on doesn’t make sense, it did help them because it increased circulation to the area which helped decrease pain. I say if warm fluids feel good, go for it. Ice from the outside & warmth from the inside. Sounds like a good balance to me!

Your incision will look pretty irritated for a couple of weeks before healing begins to turn it’s appearance around. That is normal. Don’t stress. It will basically disappear as it heals. You are still in the very early days of recovery.

Trashy novels, chick flicks, whatever it takes to get your mind off of how you’re feeling, work great! My “go to” was movies. I loved East & West (British…a tiny bit reminiscent of Pride & Prejudice). It was four hours of bliss for me. I think it’s on Netflix. If you watch it I recommend subtitles as some of the actors have very strong accents.

I wasn’t patient in recovery either…began exercising at the end of 2 weeks post op & walk jogged a 15K race in San Francisco at 6 weeks post op…BIG mistake. It was just too much too fast & set healing back a bit. Find a happy place mentally that allows you to be ok with taking it easy for awhile yet. You will recover faster & be back to what you love sooner.

:hugs:

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Hi JustBreathe,

Thanks for the tips…I think my allergies are the culprit for some of my throat problems on top of the swelling. My throat is tremendously better today as is the swelling overall. Guess yesterday was my down day…thanks for listening and the encouragement. One day at a time, and yes, listen to your body…have a lovely day!

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Thanks Isaiah! I did do some warm fluids yesterday including my anti-inflammatory teas that seemed to really sooth the throat. Things are significantly better today…throat a lot better and swelling improving. Thanks for all the encouragement! Much appreciated! I will stare at my pond I dug pre-op and plan and scheme for what plants I want to plant once I am able.

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Yep, definitely looking & planning time, not planting for a while yet! :cherry_blossom::tulip::hibiscus::rose::sunflower:

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Hi friends,

I saw my surgeon Wednesday for a 2 week post-op check and he was pleased with my progress. He thought my incision was healing well. Some of the minimal persistent swelling will diminish. Some residual chin numbness will be gone given time. He said I can play my clarinet, which I already snuck and played a week ago with no issues with my mouth…only neck and throat discomfort which will improve. My CT showed my left styloid to be 3.9 cm but when they took the entire thing out with the ligament it was about 5.5 cm. I am thankful for the medial team that I chose to help me with this challenging condition and pray for continued relief of some of my vascular type symptoms. I am pleased with the improvement of a lot of my symptoms. Thank you to members here and for our wonderful moderators that provide such wonderful comments and suggestions. My thoughts and prayers to those who are struggling with this…hang in there and look for a skilled skull based surgeon is my suggestions. The heartache finding him or her through the medical maze will be worth the effort. I try to keep a positive attitude and outlook which also will help you in diverting your mind from your symptoms. I looked at some of the other various patients at the hospital when I was at my appointment who were is much more dire straights than I and I am thankful that things are not worse. I know a lot of them had cancer of some sort. Somehow the thorn in my neck did not seem as significant as the suffering I knew they must be enduring.

Now my question…he said I could use any of the over-the-counter scar treatments to reduce inflammation and the look of the scar. I bought some Mederma cream but am now wondering if I should use the silicone patches?? It looks like there is more research out there saying that is a good product to use. I see others have used vitamin E and Bio oil. Your thoughts and experience appreciated, thanks. And how far post op did you start using them?

Have a wonderful day!
Kay

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Kay,

I am so grateful to hear about how well you are doing, spectacular! And to be back playing your clarinet, it must be such a wonderful feeling (I grately appreciate anyone with musical talent of any kind as I am a life long spectator at best :grin:) I hope you continue to find relief from your vascular symptoms and get back on the river soon.

I am only using a natural face cream that I like on my incision which has been fine but know others have used the Mederma and silicon patches. Once I did a self study for viatamin E on a long knee incision, using it on only the top half and nothing on the bottom…no difference. That said everyone has a different collagen makeup and heal differently. Good luck!

Have a lovely day

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Big fan of silicon patches here. At 9 months my scar is very faint. At 4 months, my second one is turning from red to light pink. I wear them 24/7 only taking them off to massage some with a hemp/coconut oil I found at Walmart. I rinse my neck off with soap before trying to stick the patch back on! I stared all that at week 4.

Thank you JustBreathe! I am fortunate to have learned to play the clarinet starting at age 10 and picked it up again as an adult. I too hope I can get on the river again…I was hoping maybe this fall yet but I think that is a bit ambitious. Thanks for information on your self-study…interesting. I would have thought the vitamin E would have been beneficial. How are you doing?

Kay

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Thank you Sew Momma,

I see pictures of the before and after using silicone patches and did a little more research and I think I will use those. My incision still is shedding some dissolvable sutures and a few scabbed areas so I just started a little Mederma yesterday but did buy some silicone patches but will wait a bit to start them. I hope that each day finds you closer to your normal. Thanks for your thoughts! Have a great day!

Kay

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My Vit E study of one was fun to do. It was a very nice moisturizer but did not make any difference as far as how the incision looked or healed. It definitely was not harmful in any way :wink:
I am seeing my surgeon for the 4 week post op visit later this week, will give an update then. Be well!

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Wow, Kay…what an awesome success story! Of course there will be little bumps along the healing pathway but sounds like you are off to a good start. There are so many crazy things happening to us with this nasty eagle and I am in agreement that the healing certainly beats the suffering prior to the surgery. Thank you for sharing your journey and yes, the folks here are fabulous people without whom I’m not sure I would still be here. Many thanks to all who share here! :smiling_face_with_three_hearts:

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Thanks KiZe6159-thought I would give an update on my progress. Overall I am very happy to be rid of my “evil bone” and ligament. I tried the silicone sheets on my incision and the adhesive really bothered me so quit those and have been just using Mederma cream with some good success. Mederma also have a very nice oil that I found that I use sometimes and even use it on some other areas on my face and am pleased with that too. I am neutral on BioOil…not sure I noticed much going on when I used that one. I now have some scar tissue issues that I am dealing with…I am doing massage several times a day and a little cupping devise several times a day. My best massage seems to be pinching up and gently twisting the problem area. There are several good massage or PT videos on line on how to do scar massage. My non-physician scar tissue treatment recommended by the health food store and an on line naturalist are enzymes…check with your doctor before using though…(there are some drug interactions mostly related to blood thinning so beware of that if you are on a blood thinning medicine or supplement). I have a serrapeptase one that I have only been taking for a few days but have noticed a difference-not only on the ES scar but some other scars I have from previous surgeries so I don’t think I am imagining the progress. I was also reading that castor oil massage/applicaton may help break up scar tissue so will do a bit more research on that one. Anyone ever use that? I thought I was rid of some nerve pain but it flared itself again in the last few days so for that I use some capsaicin VERY sparingly (at the worst site by my ear) because it will burn some and when massaging you don’t want to accidentally transfer it to your face or by your eyes. I think the lidocaine actually works better and apply that several times a day. I am taking Vitamin B also. I use some magnesium supplement for some muscular discomfort. Again, check with your doctor before using these OTC products to be sure they are safe for you based on your other health issues. Overall, I think I am doing pretty well but hope get a little closer to normal in the near future as the nerve pain and scar tissue issues abate. I think some of my impatience in getting back to normal and pushing my body to do more may not have been in my best interest…so my recommendation is not to over do it and listen to your body! Your mind may be telling you to go full steam but your neck might not be ready for it! The post surgical experience has given me time to “smell the roses” and enjoy some of the great fall weather. Hoping my fellow ES friends are doing well and wishing you all a great day! :maple_leaf::sunflower:

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Thanks for the update Kay! Some set backs are to be expected as you learn what you can or can’t do…the info on scar tissue is really helpful!

Great update, Kay!

Thank you for your scar tissue info. Always helpful to have new advice on that front! I’m sorry your nerves are still letting you know they’re healing, but they should feel better with time. I always imagined a nerve pain flare up was steps in the healing direction as the injured/irritated nerve began to “feel” again during the healing process. Hoping yours calm down fast.

So glad you’re taking this opportunity to “smell the roses”. I need to slow down & do that, too. When I was in high school, I commented to my best friend’s brother that I “didn’t have time for…” He wisely returned, “You ‘make’ time for the things that are important to you.” I needed to hear that & have never forgotten it.

:heart::hugs:

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