Dharmadel,
You are an amazing person and are fighting so hard for yourself. It is completely unacceptable how you have been treated yet you continue to persevere. Continue to shine in this wacky world, you will have an incredible story to tell that, one day, will help another. Thank you!
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Jan, so you had four surgeries??? I sure hope not!
JustBreathe, Thank you, yes I am fighting because I want my life back! You know, I am very sensitive and I know my body very well. Over the last how ever many years that this has been going on, I totally stopped listening to my body because the specialists and ER Drs have continued to tell me that there is nothing wrong. And I started to believe them. Until I couldnāt ignore the health issues anymore. And then I started paying really good attention, especially when I was up late at night from the pain. Thatās how I found the styloid bone. I stuck my finger in my mouth to touch where it was and my finger went straight to the tip of L styloid.
If I told this story previously, I apologize. I know I told the one about my cervical cyst and the one about my ovary being messed up. Here is another one. In college I went to the Dr. on campus a lot. I have always been sick a lot. My entire life. Lots of strep and colds and just yuck. So, I was a Sophomore in college and I had gone out with friends for pizza and we were all talking and having fun and I went to rest my face on my right hand. My finger touched my cheek and I howled! I prodded around and felt a pea sized lump in my cheek. I called my Mom and she said go to the school clinic. So, I went to the school clinic the next day. I had been there a lot for the last year and a half that I was there. When I went that day I told the Dr about the very painful lump in my cheek. He felt my cheek and said there is no lump in your cheek. I said yes there is and asked him to feel it again. He did and he told me that I was a hypochondriac!!! I called my Mom. She said for me to go the next day to the local hospital ER. I did and I told him what the campus Dr had said to me. He was extremely pissed at the other Dr for saying what he said. He took a bunch of blood for a workup. He said hey, I am going to make you suck on a lollipop and I was like okā¦he said that by sucking the lollipop he could tell what was wrong with me. Well, it was like a lemon head pop, really sour. I was fine. He said ok, good news, you do NOT have a blocked salivary duct or that candy would have made you howl in pain. He said ready for the bad news? I said sure. He said you have the mumps! Pack your bags because I have already alerted the school and they will not allow you to stay because you could start an epidemic on campus! I did pack and I did go home and the right side of my face blew up so big and it hurt so bad! But I only got the mumps on the right side!!! I have never gotten them on the left!!! I recently read that the mumps virus may have something to do with the salivary gland swelling? I find that really interesting! I donāt know what it is about me that other people do not believe me. It is so frustrating and I know it sounds fantastical, yāall, but it is very, very true! So, I have been having people tell me that my inner voice concerning my health and my body is always wrong and it has been happening to me my whole life. I know I have several things going on at once. Again, I am scared to death because I know my local hospital will refuse me any help with this situation. HOW MESSED UP IS THAT?I think I need to get a medical attorney. I donāt see any other way to go about getting my information changed. I only have my GP to help me. I feel so relieved that he now knows what is happening to me. But I am still really sick and I need the help so bad. I am so thankful he referred me. He told my husband and I he is retiring next summer. I am devastated.
I will update as things progress. I hope I can see one of the two Drs quickly. I need some relief. I am sorry about my storiesā¦once again I could not make this stuff up! I am going to go to the hospital and ask for my records. I know, however, through research that the way they code āseekersā can be as simple as making my name all capital letters or other such tactics so that they do not have to actually write down what they think about me as a patient. It just amazes me, again, that ER Dr refused to look in my mouth and told me I had no infection when I told him I had the sinus infection on top of everything else. And then my Dr sees it immediately because of the drainage. I hope he made a phone call to the hospital and asked them why they are doing this. He might call and not tell me. Maybe he CAN help in some way. I donāt know anymore.
I should have made my screen name TOO TIRED. Cuz I am.
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I forgot to addā¦is it possible that when the ENT got the measurements from the hospital that they might have been the wrong measurements? Esp if they donāt deal with Eagleās? I do not even remember what they were but I know I posted them somewhere on the site. I think I may need new measurements? Man I hope to see someone soon!
I donāt remember if Iāve read your measurements, but theyāre not always accurate anyway. Reading a scan & understanding ES doesnāt seem to easy to get done at times, thereās still ignorance about it & also different doctors use a different āaverageā styloid length to assess them, anywhere from 1.5cms- 4cms! Plus thereās research which shows itās not just the length but also the angle & width too which can cause symptoms. I think if you click on your own icon it shoukd come up with the posts youāve done & discussions youāve started I think, you could have a look what your measurements are.
Iām sorry that youāve had such a tough time from a young age with your healthā¦I can totally understand that youāre tired when youāve had to fight for so longā¦I hope that you can get some answers & help very soon 
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Thank you, Jules. I started migraine at age five so I am assuming that I possibly had this already? Although I still think it grew from irritation and became worse. It has been a long life for me and I had to do the best I could with what I had. My Mom and Dad chain smoked and I know that played into my health as well. I am wondering if there are any organizations where people like me can go and upload or send images and ask for advice or where to turn. I am pretty certain that I am one of the unusual cases as I can feel when it is pushing on my arteries and facial nerves. Pain, numb, tingleā¦parts of my face āfall asleepā is the best way to describe. Again, I have horrid headache/migraine with crazy nausea. When this started to get bad I would projectile vomit no matter where we were or what we were doing with no warning. After my meltdown the other night I think my husband finally gets it. He knows what exacerbates it now. My mother-in-law thinks I am just flat out lazy. It is hell to have a syndrome no one can see except now I CAN see on my scans and so can my hubby. My parents and brother donāt believe me and it stings. Sometimes my voice is horse, sometimes not. I was throbbing all night last night in so many places. I know I get fever from infection as well. I appreciate the good thoughts and prayers, I know they help! I wish I could be helpful to someone else but I need to get a handle on me first. I truly hope some day in the future I can help someone else on this very board feel hope. Again, I will keep my story updated. My Dr sent the referral in but I am trying to see if there are any Drs that are looking for people with this issue in the meantime. Things move slowly in the south. I would gladly share my case for some feedback! There HAS to be somewhere I can go and ask a Dr these medical questions. Iāll try and stop whining.
I have lost a lot of weight since it got worse. I found that drinking supplemental drinks with vitamins and protein helps. Also, there is a brand of allergy meds that come in a chewable tablet. I find if I suck on it instead of chew that it numbs up the left side pretty well so I can get something down my throat. Iāll have to figure out which brand and maybe that would help someone.
HUGS to everyone up late checking in to the board like I am. I have a lot more reading to do!!!
XOXO
Just got online to my health portal where my GP puts test results and notes. I have a really bad UTI. It is e-coli. SO, I have PROOF that I had a raging sinus infection and a raging UTI and that man in the ER stood there and told me that nothing was wrong with me that there was nothing that would cause the pain scale 9 in my head and face.
WOW.
dharmadel,
Iām glad you were right & am sorry the ER doc was a total jerk. There must be someplace on the hospital website where you could email a complaint & include a copy of your current test results to prove you were not a hypochondriac & he was negligent. A doctor like that should be fired. Some doctors are quick to prejudge patients based on what they see in a chart rather than getting to know the patient themselves & drawing their own conclusions. That would be a very sad situation indeed.
I hope your referral helps you get an appointment quickly so you can begin moving forward toward recovery. Please let us know when you have a date w/ the ES doctor.
I continue to pray for you.
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Thank you so very much. I am too emotional about this and need to step back and proceed with clarity. I ABSOLUTELY have backup showing the sinus infection and the UTI! I keep saying I am flabbergasted, dumbstruck, just was made to feel like a dirty piece of trash. The number 1. rule of their hospital is to treat everyone with dignity and respect. I donāt know what the neck surgeon put in my file but it is causing me great harm. I am going to try and have a consult with an attorney and at the very least I am challenging my charges for that visit. Even telling them I have lost 13 pounds couldnāt swallow talking with half a mouth no food or liquid for 24 hours. The CT dieā¦I have never ever had that much dye in my system they must have lit me like a Christmas tree. This is not the first time I have been treated this way but for him to say nothing wrong just blows my mind. And he brought someone with a clipboard to be a witness. Guess what? She witnessed him tell me no five times when I asked him to look in my mouth for evidence of a sinus infection. Respect and dignity, right? Every single nurse that came in also had an attitude towards me as if I hasnāt said ANYTHING. Like the first nurse asked me to pee. No problem! I always let them check it! But I had taken URO MP for my interstitial Cystitis the day before and because I had nothing to drink my pee came out very blue. She said yeah, Interstitial Cystitis, THATāS A ANOTHER GOOD ONE.
I am so sorry. This is not what I wanted to join this board for. I thank you all for your thoughts and prayers again. I hope you all are having a pain free night!
Edited by Isaiah_40_31
Edited by Isaiah_40_31