Wednesday, September 30, 2015

Enough is Enough...

1.5 years it has taken me to get the courage to see an ENT again.
Thirteen days since I saw an ENT.
Thirteen days since I was told that my left ear and head pain is not an infection, but possibly a tumor
                  (but more likely me just being a crazy fruitcake or was so implied)
Thirteen days, four phone calls to the ENT office with only one return phone call where the person calling didn't leave her name and only left a message telling me to call them back. 
Two phone calls to them since then.
Zero return calls from them since.
Zero referrals for a CT scan..
A million tears shed today before work and after work from frustration with the horrible quality of mainstream doctors in America!!

Do I think it's a tumor? Probably not, but WHO KNOWS. I NEED A CT SCAN or MRI to figure that out and I have had cancer before that was bad enough that my abdominal lymph nodes were double their correct size.

My current ear and head pain, pressure, nastiness started about 1.5 years ago. In this time I have seen a family doctor once for a thyroid med refill and antibiotics for this problem. And I have had jaw surgery on the left side, but that was with a holistic dentist, so self-pay. So in 1.5 years, I have paid at least $3600.00 in insurance premiums for about $100.00 of treatment, what a waste! I don't think it is too much to ask an ENT to do what they say they will do and order a CT scan when I am the one paying the premiums and paying my deductible. I will be billed a co-pay to see him and my insurance is going to pay him...should I not get something for my money? IN A TIMELY MANNER?? It took 3 weeks to get the appointment and now two more weeks and no referral for a CT. COMPLETELY UNACCEPTABLE!!!!

So today I went to see a GP. Once again a nightmare!

I feel like I am back to square one! Six years ago or something like that (I've lost count) when this freakin nightmare started. The doctors are once again writing me off as a crazy person with "facial pain" of unknown origin. Then they wonder why I am emotional. I am so sick of wasting my hard earned money on idiots!!! The one today actually said that the holistic supplement therapy that I have taken for the parasitic based infection that I had was probably a placebo effect! REALLY..!! I was on high doses of antibiotics for well over a year and all they did for me was kill all the good bacteria in my gut, give me reflux and prevent me from dying. They didn't fix anything!  I didn't start getting better until I started the supplements for parasites.  I told him that the only reason I switched to holistic was because mainstream doctors don't listen.

I am back to the point of preferring premature death over seeing another mainstream doctor ever again in my life!!   With that said, supposedly he is going to encourage the ENT to order the CT.. So I am going to have to continue to play the game.  I'm so ready to say "GAME OVER"!!

Thursday, September 24, 2015

New Age Torture...

It has been three months since the last surgery on my jaw. My jaw has been better although I still have one spot at the angle of my jaw, a little too deep to get to through my mouth. Otherwise my jaw has been doing good.

My other symptoms are unchanged. Possibly worse. Some days worse than others. Some nights I don't think that I am going to wake up the next morning. Some nights I beg and pray to God that I don't..

I continue to have stabbing pain in my left ear. I have worked on my TMJ with ultrasound and stretching. My jaw is looser, but the pain did not subside. So I am quite sure it is not TMJ dysfunction. I have previously been put on antibiotics (twice) for the symptoms. They resolved temporarily. I have tried a lot of holistic treatments, also with temporary relief. Last week I tried a supplement that I have previously used to promote lymphatic drainage and then used Ibuprofen too (which I rarely take), it amazingly helped dramatically  Sounds great, right? NO I had finally caved and made an appointment with an ENT. And when you see an ENT, you want your symptoms to be there or they really don't believe there is a problem!!  The break from the symptoms was great, but the timing couldn't have been worse!

Where I am working right now, medical care is limited. There is one ENT that travels to this area once a month. I didn't bring my car with me, so it is not easy to leave this area. I am working 5 days a week and have my own patients to deal with, so time off is very discouraged. So like I said, I caved.

I went to the only option...he barely evaluated me. Didn't take vitals. Briefly looked in my nose, ears and mouth. I told him that my antitragus was swollen and got an anatomy lesson on the neonatal origination of the folds of the ears.

Then he told me that there is "NO way THOSE ears are infected".  Ok yes I am a Q-tip abuser and I have been trying lots of holistic remedies in my ears. You could eat out of my ears!! Then he said that I needed a temporal CT. I asked what the CT would be looking at. I was trying to find out if it included the internal auditory canal and what structures would be seen. Instead he said that he would be looking for a tumor. Well okay so whenever a CT is done, ultimately they are looking for a tumor or other abnormalities. The response did not surprise me, except it wasn't what I was asking and didn't answer the question. I pushed further about the internal auditory canal. Then he said an audiogram would find a tumor in the internal auditory canal. He then proceeded to carry on about audiograms, so I asked if he was still going to order the temporal CT. He said that yes I needed both. I told him "great this will be so much easier to deal with when I know for sure that nothing extra was growing in my head".

I left, went back to work. With in 2 hours the audiologist called me and scheduled an appointment. She seemed to know that I was going to get a CT also. I scheduled the audiogram for next week and then I waited. By Monday, I still hadn't heard from the hospital to schedule a CT. I waited until later in the day and then called the doctor's office. They told me, that the doctor's notes weren't done yet. Ok, I'm in the medical field, I understand being overwhelmed by notes. So I asked them to make a note so he would not forget to order the temporal CT.

That was Monday, this is Thursday and I still haven't heard from them.

WHAT kind of person/doctor does that?? Who tells you that they know it is not an infection, it's likely a brain tumor of sorts and then doesn't order the CT scan that could rule it out!

I am so frustrated!! How can one person have such bad luck with doctors???

So I went and made an appointment with a local family doctor for next Wednesday and I guess I will call the ENT's office tomorrow.

However, if you are a doctor and reading this, all I need is a referral for a temporal CT.

Here's my current symptoms:
-Pain, pressure and fullness in the left ear, feels deep inside
-Swelling and redness of the left antitragus
-Pressure and sometimes pain in the temporal area of my head
-Tingling in the temporal area that intermittently goes into the left eye
-Congestion and swelling of the sinus on the left, all the way around the left eye
-Intermittent blurred vision and hearing loss on the left
-Terrible memory
-Intermittent difficulty forming thoughts
-Soreness down the left side of the throat
-Itchiness of the throat and left eye
-Waves of severe nausea, that just started in the last two weeks
-Possibly a low grade temp
-Possibly swelling in the left face
-Pressure below the ear increases pressure in the ear, feels like fluid displaces into the ear or the tissues around the ear.
-Intense sensitivity to noise in the left ear
-Sensitivity to foul oders
-Left eye waters
-Fatigue that is only cured with caffeine.
-I'm miserable...

If anyone can help, get me a referral for the CT that would be great.

If anyone knows a competent ENT or neurologist in the Anacortes, WA to north Seattle area that is experienced with osteomyelitis patients it would be helpful.

If you would like to tell me your problems, please wait.  I feel for you, really I do, but I do not have the mental energy to take on your problems. I am barely dealing with my own..

Thank you for reading..