Really sorry to hear that, Seamom, especially as you’ve been approved my Dr Samji for surgery. I hope that your appeal is successful- thinking of you.
Blessu2- how long ago was your surgery? Nerves can take a while to heal- even up to a year, and the surgery itself can aggravate them, so hopefully things will settle in time. A little while ago, one of our ‘older’ members who’d not had great results from surgery posted to say that she was over a year post-op, and that things were still improving, and that she was really glad she’d had surgery after all. It’s very frustrating I know if you don’t have complete healing, but try to focus on what has improved, and hopefully there will be more improvements over time.
Blessu2,
As far as disability goes, I cannot answer that. It would depend on how debilitating your symptoms are. If you have bilateral ES and are able to afford the second surgery to shorten your other styloid, you might have a complete turn around health-wise. ES surgery was transformational for me as my most severe symptoms did go away after surgery, some immediately and some over time. I can function as well now as I did before my ES symptoms began.
ES surgery is a major surgery, and as Jules noted, it takes time to completely heal after surgery. It was a gradual process over the period of a year after my first surgery for my nerve pain to settle down (it’s not completely gone but very tolerable now) & I’m still noticing changes in a positive direction since my second surgery which was in August 2015. When did you have your surgery?
I’m glad you like my “name”. God has been so very faithful to me over many years. The Bible verses that helped me a lot during my ES journey & which reminded me of God’s care & constant presence are Psalm 139:13-16. Perhaps they will encourage you, too:
“For You created my inmost being; You knit me together in my mother’s womb.
I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.
My frame was not hidden from You when I was made in the secret place, when I was woven together in the depths of the earth.
Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be.”
Lean hard, Look up & Pray often. Our heavenly Father is always there for us.
Seamom,
I’m so sorry to hear about the denial as well. Dr. Samji does offer a cash price for doing surgery which is much lower than his insurance billed rate. I know you really want to get this surgery over with. I’m sure Camino ENT would work with you financially if you chose to go outside of Kaiser and do this on your own.
I hope the state medical review doesn’t take long and provides you with the support you need to have your insurance cover the surgery with Dr. Samji.
Blessu2 -
I just saw on another post that you had your surgery on 11/29. You are still in the really early stages of healing. That said, if you’re still having heart trouble, it may be coming from your other styloid (or from the heart itself). What your doctor(s) need to determine is whether your heart issue is a failure in your cardiac system or whether the remaining styloid is pressing on vascular tissues & intermittently preventing blood flow to the heart which causes your heart to quit.
MRI scans aren’t good for looking at styloid involvment. A CT scan w/ contrast would be better as the docs can see the styloid/ligament & their potential vascular involvement. A pacemaker will relieve the symptoms but if an elongated styloid or calcified ligaments or both are causing your troubles, then having them removed will possibly prevent the need for a pacemaker.
I’m going to borrow money from my parents to pay for Dr Samji until I get the approval from my HMO. Either way I’m having Dr Samji do my surgery. I have so much more faith in him. Thanks for thinking of me…less than a month till I get one side out!
Jules you are soooo right. I am getting there. My main issue is not wanting take my meds but as of today, I am. After my appointment today, I plan to excercise more gratitude for what God has done for me. Because I now realize that I could still be in pain.
The doctor I saw today said my 4.5 inch bone was too short to be ES. He said I have Fybermyalgia? or Arthritis. He even took me to he internet and told me to look up TMJ and try those options. But wrote in his report that I had agreed to let him do surgery on my right ear. WHICH WAS A MAJOR LIE. I don’t know who to trust or believe anymore. i’m at peace.
Isaiah it sounds good but, I quit. The last pacemaker I had on me didn’t go well. It started sending false fires to my heart. My thoughtare that when my heart stopped, it restarted on its own and the pacemaker didnt catch the hint. It aint God’s will for me to live in fear. or to go broke trying to find help. My days on this earth are in his hands not mans. I WILL not purposely let them kill me.
The doctor I saw today said my bones 4.5 are not long enough to be a problem. Everyone has long bones.
No disrespect to your encouragement, I simply declare war against SATAN!
I have come tooo far to be limited and lifeless. I beat ostoearthritis at 37, I WILL BEAT/ overcome this. I have things to do. People will not keep looking at me like I’m going to drop. Or be afraid to be around me. NO MA"AM. I have feelings. God let my heart stop I could ge help. My heart is fine. As you said, once my nerves heal, I will be fine.
Seamom,
I’m so glad your parents are supportive and can help you. It sounds like it’s imperative you have the surgery soon w/ the vascular symptoms you’re having. Dr. Samji used to require 6 months between surgeries for bilateral ES. He has changed that to 3-4 months now. That will be better for you.
Blessu2,
No disrespect to your doctor but he/she is wrong. Anything longer than 3 cm is considered to be ES. It is NOT the length of the styloid that matters but the angle at which it is growing. There have been people on this forum whose styloid(s) were barely long enough to be considered as ES but who had severe symptoms because of the angle the styloids were growing. There is documentation to that effect. Jules knows better where to find this sort of info. Hopefully she’ll be able to offer you more precise info in this arena.
I give you kudos for your good attitude. YOU GO, GIRL! I’m glad you know that God still has good works for you to do for Him. That in itself will help you heal.
I will be praying for you.
I’m glad that you’re still able to get your surgery! Let us know the date when you have it!
Jules etal
My first surgery is scheduled for January 16th. Then I hope to have my next 4 months later!
Great that you have that date- not too long away! I hope that you can manage your symptoms and enjoy Christmas!
Merry Christmas to you and happy holidays to all!
And Merry Christmas to you, too! I hope it’s a happy, peaceful and painless day for you!
Thanks Isaiah. I went for my last second opinion today. I’m done. When God says its time to receive my breakthrough, so be it. But, he has not equipped me to be a financial blessing to unfertile ground.
The doctor at Duke didn’t even know that I had been diagnosed with Vestibular neuritis. (even though I showed him my test resuls. He too said that losing hearing in my right ear is not a big thing and that the margin from my test results was small. It is supposed to be 25% but it is 31%. SMH. But I guess because it too is rare…
Note from Seenie of modsupport: negative doctor report redacted per site guidelines.
Merry Christmas How was your surgery?
Blessu2,
I am very sorry you seem to be hitting dead ends as far as finding help & proper diagnoses for your symptoms. I’m sure you feel frustrated & discouraged. I will continue to pray that God will provide you the medical expertise you need at just the right time. He puts these challenges in our lives to keep us on our knees & looking to Him in faith for strength & healing. Even if He doesn’t heal, He NEVER leaves our side & ALWAYS walks with us through the “shadowy valley”.
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