Hello everyone,
I have really enjoyed reading through many of your posts. Here is a little about me.
When I was 23 (2007) I had my third baby and two months later I had an untreated case of strep throat that turned into an abscessed tonsil. I was uninsured and it ended up bursting at home. It was such a relief. After that I suffered from the most severe sinus infections you can imagine. I finally get insurance about a year later and I found a dr who did minor sinus surgery and a tonsillectomy. I hadn’t felt that good in years! Unfortunately, I had lots of other symptoms. I can’t remember if they started before or after the tonsillectomy because that was a long time ago. I started having these very scary feelings of my tongue being pulled downward into my throat. I was always so very scared and I was having severe panic attacks to the point of slurred speech and completly freaking out. This lasted about nine months. It never completly went away but most of it. At least the panic. Then in 2012 I have my fourth baby not much happens. Then in 2014 I have my fifth baby and two months later the extreme feelings of something in my throat came back and the anxiety was worse than before. Once again it went away around 9 months later but not completly. In 2017 I had my sixth baby and I have not had anything extreme. Now the baby is 18 months. I forgot to mention a few years ago maybe 4 I started clicking everytime I swallowed. I went to an ENT in Charleston SC and she said my hyoid bone and thyroid cartilage are pretty close together and maybe I could have some of the thyroid cartilage shaved off but she didn’t act very serious or recomend it exactly. My insurance changed and I couldn’t see her again. So I went to two different ENT near me and they both said they saw or felt nothing. Just too bad. I guess they didn’t understand just how terribly this is ruining my life. I went home disapointed yet again, destined just to live this way. I also have extreme ear and tempal pain. This never goes away. But recently I have been feeling tightness and pain like a headache across my forehead, bridge of my nose and neck muscles. My insurance changed again and I went back to Charleston. She was a little off putting when she told me I shouldn’t have to force the click. It didn’t click for her during the three swallows I tried, because she was pushing too hard on my throat and not in the right spot. I click 90% of my swallows. Also, I forgot to mention to her that for years I have felt like my head is feeling with blood. Sometimes this happens many times a day and sometimes I go days without the feeling. So she finally says it may be Eagles and has refered me to a specialist in North Charleston. Dr. Lentsch. I have an order for a CT scan with contrast. I am very scared of needles, but I will schedule for this soon. My Dr. app is on Nov. 7th, so I’ll do it before then, so he has something to look at. Also, she very quickly measured one of my styloids from 3 year old CT scan and said it was only 27mm and the other was just a tad longer. I know this was very very long, and I apologize. Thank you for taking the time to read it.
edit to add: I also always have a feeling of something in my throat. Sometimes Ihave that painful feeling like I am holding back tears, and recently I’ve felt something jabbing me inside.
Hi brookiejunk,
Welcome to our forum. I’m glad you’ve taken the time to read some of the posts here. Everyone’s ES case is a little different & though some symptoms are typical of ES many are not & are as unique as each one of us. Your early experience w/ your tonsil sounds pretty horrific but happily you eventually were able to get the care you needed. Good for you for pursuing the cause of your other symptoms & great that you ended up seeing a doctor who is familiar with ES.
You do have symptoms that have been associated w/ ES - clicking when swallowing, headaches, earaches, feeling like something is stuck in your throat, temple pain, tight neck… Getting a CT scan will be the key to your getting a diagnosis one way or the other. If your styloids were already 2.7+ cm 3 years ago, it’s possible they’re longer now & thus the additional symptoms you’re feeling. That area of our necks contains vascular tissues & many of our cranial nerves which when irritated (by elongated styloids or calcified stylohyoid ligaments) can let us know in scary &/or painful ways.
I’m really glad you have an appointment with someone who may be able to help you. Go “armed & dangerous” - with as much information as you can about ES & especially with any research articles you can find (check the Newbies Guide on this forum) that mention the types of symptoms you have. Be prepared to “take a stand for yourself” & don’t let the doctor be dismissive of your symptoms, or of ES if you are diagnosed with it. The only “cure” is surgery though many people are able to live for a long time w/ the symptoms by getting cortisone or lidocaine shots in the styloid area of the neck &/or getting PT or chiropractic work done.
Please keep us posted as to what your CT report tells you & how the follow-up doctor’s appt. goes.
I’ll be praying for you to get a definitive diagnosis & good support from Dr. Lentsch.
P.S. Congratulations on having 6 healthy babies. You’re a super mom!!
I think you’re amazing, being a mum to 6 & having ES symptoms! & over so many years… I’m sure you’ll be strong & manage the CT with contrast easily!
As Isaiah says, go armed with as much info as possible, write down questions so that you don’t forget, & if possible take someone supportive with you. I don’t know anything about Dr Lentsch, but he is on the Doctors List, so a member must have seen him at some point & found him understanding, so that’s good. I hope that you get some answers when you see him, not too long to wait!
Thank you both for your responses. I just realized I said I was 21 when I had my third, I was 23. Not that it matters. I am so nervous that it isn’t going to be Eagles and I’m going to have to start all over on my search. I wish I knew someone on this group that has seen Dr. Lentsch.
brookiejunk,
There are 2 people who posted about Dr. Lentsch. You can either send a private email or write a post to exployergirl2002 (12/14 post) or Glahusky (6/18 post) who both saw him. Not sure what the outcome was for either of them.
You can access their posts by typing Dr. Lentsch in the search box that comes up when you click on the magnifying glass above.
