Color my day with gratitude~

General
1

I want to thank this support group, for giving me the courage to not give up. I know for everyone who is diagnosed with ES is a testimony of physical, emotional, & mental strength. My first reaction on being diagnosed with ES was great! I know what I have...... that only took six months!!!! Who knew, finding a Doctor, would be just as hard, or harder to find than getting the diagnosis? By this February, I barley could get out of bed. the pain, exhaustion, depression. Had me convinced, This is not living....

I called Dr. Milligan in Phoenix for a consult. I found him on the list of Doctor's on this site. He looked at my CT. With confidence, he didn't hesitate, on what needed to be done. The only question he asked me was, "when did I want the surgery". March 25th, I walked into the hospital, so hopeful, and desperate. I prayed to god, if this surgery didn't take away my symptoms to peacefully take this pain body to a better place. Today is March 30th I woke up, took a shower, went to lunch with my daughter in-law, and two beautiful granddaughters. I pulled some weeds, talked to my friends on the phone. My voice was strong, no hint of that never ending headache, not one ES symptom, inhibited my day. I wanted to dance, sing, cry~ It's spring, the start of a new beginning.

I was not alone on this journey, we are all connected by this esoteric syndrome. The genuine compassion, concern, & rallying we shared, to find a strength to not give up. I found it here.

If anyone wants to know about Dr. Milligan. I would be happy to tell you about my experience.

Much love & light to all of you~

2

Wow Nanners, that's fantastic news. I'm so happy for you. It's so great to hear the successful stories.

3

Great news; thanks for letting us know Nanners! Enjoy your family and your garden! Hearing how others have got through this gives us courage to face the operation!

God Bless

4

That is such great news, Nanners! I’m so happy for you! It also resolved the sensation of not having enough oxygen too, I assume? Did you have the external or intraoral approach? Thank you for sharing! It gives hope for the rest of us :slight_smile:

5

This is soooo wonderful to read! Your happiness leaps off the page! Congratulations!

6

That’s wonderful to hear!! Congrats!!

7

Such excellent news! So glad you have had such immediate results, Nanners! God is GOOD! He hears our prayers & leads us in the way we need to go. Glad you found Dr. Milligan. I'm anxiously awaiting my second surgery (only had one side done previously) & hope to be singing your same praises when I'm done!

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Nenufar said:

That is such great news, Nanners! I'm so happy for you! It also resolved the sensation of not having enough oxygen too, I assume? Did you have the external or intraoral approach? Thank you for sharing! It gives hope for the rest of us :)
I had it external, My energy level is noticeably better. I'm sure it's going to increase as the day's pass since I'm still recovering. Thank you ~
9



Isaiah 40:31 said:

Such excellent news! So glad you have had such immediate results, Nanners! God is GOOD! He hears our prayers & leads us in the way we need to go. Glad you found Dr. Milligan. I'm anxiously awaiting my second surgery (only had one side done previously) & hope to be singing your same praises when I'm done!

Yes, I agree god is good! How did your first surgery turnout. Let us know how the second surgery turns out. Who is your surgeon?

10

So happy to for you!!! I love to hear how lives are transformed!!! God bless you and thank you for sharing!!!

11

I'm in California. Dr. Samji is my surgeon. He doesn't do bilateral surgery all in one shot. He spaces the surgeries out by 6 months to allow for complete healing in between. My first surgery went well - it was in Nov. 2014. I'm still a bit sore around my right ear & struggling w/ a partially uncooperative tongue plus first bite syndrome but otherwise doing well. I anticipate these problems will continue to resolve as time passes. He removed the right side first because of the treacherous angle at which it was growing, but it's the remaining side that has caused the most pain since I was first diagnosed. I am blessed in that my discomfort is tolerable - annoying but tolerable. So many people on this site can barely function because of their ES symptoms. My heart goes out to each one!


Nanners said:



Isaiah 40:31 said:

Such excellent news! So glad you have had such immediate results, Nanners! God is GOOD! He hears our prayers & leads us in the way we need to go. Glad you found Dr. Milligan. I'm anxiously awaiting my second surgery (only had one side done previously) & hope to be singing your same praises when I'm done!

Yes, I agree god is good! How did your first surgery turnout. Let us know how the second surgery turns out. Who is your surgeon?

12

It is encouraging to hear that there can be light at the end of our sometimes dark and painful tunnel. Praying for all for resolution for our symptoms, and peace as we strive to enjoy each day. This site has kept me going…it is wonderful to connect with others who have dealt with these invisible to others, symptoms and issues…Happy Spring and Easter to all my ES friends!

13

Isaiah

Did your Dr. operate on your right side because that was the side that was bothering you the most? I don't know what first bite syndrome is? could you explain that to me? My right side is probably at some point going to have to be removed. I'm like you it's bothersome. Though, I remember that's how my left side started. Thanks

Isaiah 40:31 said:

I'm in California. Dr. Samji is my surgeon. He doesn't do bilateral surgery all in one shot. He spaces the surgeries out by 6 months to allow for complete healing in between. My first surgery went well - it was in Nov. 2014. I'm still a bit sore around my right ear & struggling w/ a partially uncooperative tongue plus first bite syndrome but otherwise doing well. I anticipate these problems will continue to resolve as time passes. He removed the right side first because of the treacherous angle at which it was growing, but it's the remaining side that has caused the most pain since I was first diagnosed. I am blessed in that my discomfort is tolerable - annoying but tolerable. So many people on this site can barely function because of their ES symptoms. My heart goes out to each one!


Nanners said:



Isaiah 40:31 said:

Such excellent news! So glad you have had such immediate results, Nanners! God is GOOD! He hears our prayers & leads us in the way we need to go. Glad you found Dr. Milligan. I'm anxiously awaiting my second surgery (only had one side done previously) & hope to be singing your same praises when I'm done!

Yes, I agree god is good! How did your first surgery turnout. Let us know how the second surgery turns out. Who is your surgeon?

14



Ivy said:

This is soooo wonderful to read! Your happiness leaps off the page! Congratulations!

Thank you! I am a happy girl~

15

Hi Nanners,

Here's a quicky internet explanation of first bite syndrome: "First Bite Syndrome (FBS) is a rare pain syndrome sometimes occurring after surgery of the upper cervical region. It presents as excruciating pain, triggered at the beginning of a meal by chewing, swallowing or even simple contact with generally acidic food, waning on subsequent bites and recurring with identical features after pausing for several minutes or at the next meal." ( I have found all food, not just acidic food, sets my FBS off).

There are several people on this forum who have experienced this problem post op, but I think for most of them it resolved over time. Mine is definitely less nasty than when it first began but it is still very present. I am hopeful it will continue to reduce in intensity as time passes. I'm also hopeful I don't get it on the other side as if I do, I'll likely put myself on a liquid diet for awhile so I don't have to chew. (Had to do this after my first surgery anyway.)

My doctor removed the right side first because he didn't like the angle it was growing even though it wasn't nearly as bothersome as my left side. I think my left side has grown more since my CT scan because I can feel it w/ my finger in the back of my mouth now as well as in my throat. I have a follow-up appointment w/ the ENT/surgeon next Tues. and will set up my next surgery then.