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Living With Facial Pain

Hospitals Full, Operations put on hold

Well, I can understand why we have to cancel all operations at hospitals in the immediate time. My hospital is currently full of patients with covid-19, and I hope they are not overwhelmed. It is really frightening.

On top of that, those of us with other health problems have been put on the back burner. After months of pestering my oncologist for a referral, I saw an oral surgeon last week who immediately wanted to biopsy new growths in my face that were on my trigeminal nerve and others that were in my mouth. The pain had been getting worse and worse, and the tumors I had removed three years ago just came right back.

Now that operation is put on hold indefinitely, my pain doctor can’t even do Botox at the pain clinic, which has nothing to do with respiratory issues. Nor will she increase my pain medication. I’m at 40 mg of oxycodone a day, with more than 6 tumors throughout the left side of my face, and she says it’s already at the limit. Of course I take other things, right Lyrica and Cymbalta, but they are not enough.

Ugh, thanks for listening people. I know I am fortunate to be in need of more immediate care, and I hope the country and my community can get a hold on this thing.

SO STAY HOME! WASH YOUR HANDS! This will take longer than one month, but we must endure, especially in urban areas. It is a huge sacrifice, but we have to do it.

If we don’t, all of our pain doctors and neurologists are going to be prevented from seeing us because they have to assume we have the virus. Be safe, meditate, exercise, stay home, and tell everyone you love them.

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Perhaps you could find another pain doctor .? Duke is using Amovig , Ketamine and CBD oil for Facial Pain

Yeah I might try to find another one. It’s hard now though, especially with insurance. They are trying to charge me for everything, and they certainly won’t let me go to Duke.

I thought of that but just thought mentioning the additional treatment with their name behind it might help you in talking to other doctors

After two denials from my insurance to get my battery replaced for my occipital nerve stimulator, the insurance company finally approved the surgery to replace the battery. They gave us a two-month window to get the surgery done. Not sure why the window amidst the outbreak. My doc’s hospital just reported 19 staff with the virus.

I hope by May the virus has calmed down and I can have the surgery. Right now I am taking the generic form of lyrica to help with the pain. I don’t like to side effects. For me, it’s weight gain, I am not stress eating but eating more than usual.

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I don’t know why they would give you such a short window either? Don’t they know that scheduling is a nightmare right now and will be for some time? Even though we don’t have covid-19, we still need access to adequate medical treatment! Hang in there Danna!

Thank you. I will.

Hi William,
I just came on for some support too. I am so sorry for what you are going through, it is super difficult to be in pain and told they can’t do anything for the pain. I am on a super cocktail at the moment since I am not able to get any injections.
The injections schedule I am on is a major part of pain management in addition to the cocktail. I get botox for TMJ and my head every three months, steroid injections for the same areas every three months. Every 4 months I get steroid injections at the back of my throat and botox every three months for the eye spasms. I was supposed to get one of the neuro stim batteries changed this month as well, so I am charging my battery twice a day.

I feel so powerless. Pain doc told me not to go to ER for a pain attack, they usually give me steroids when the pain gets that bad, it has happened twice since all of this started and it has been horrible. I hear you, why can’t we get injected at the remote offices?

I feel selfish. I know the hospital is full, I mean there is a hospital ship parked a few blocks away but for real! How are we supposed to deal with this all?

When I see people running outside I feel like shaming them with a megaphone. Can you believe people in my neighborhood are complaining about dog poo at on one of the lawns in central park, but they forget to mention the hospital and morgue that are just on the other side! Just stay home do your exercise at home, want some air? Go to your fire escape.
Don’t even get me started on the grocery store. I know its New York, but allow a certain amount of people into the store at a time, suddenly there is a long line in the aisles, we can’t social distance, and then people will not move to be accomodating. People are also being super confrontational, I don’t like confrontation anyway it makes me super nervous, but now I can’t talk back cause my voice hurts and it just sucks. I went early too during the senior and sick person hour, but there were all kinds of people there, it is when the store opens so everything is the cleanest according to the grocer’s website.

William, I hope for all our sakes they are able to get a handle on things soon. It seems unethical that they put the rest of us on hold indefinitely, there has to be a better way.

If you ever need anything just message me. Hang in there man sending good vibes your way!!