First off, I’d like to say that I’m so grateful for this group. I got the diagnosis 2 days ago, and since then I’ve been kind of walking around numbed out and scared. I’m a 44 year old single mom who’s self employed, and I’m so worried about the surgery process and the recovery time planning. I still need to figure out what’s going on with me, but from what my doctor says, the bone is pretty large and is sticking into my throat (he palpated it) and compressing and irritating my neck arteries. My symptoms are that for the past 2 months, my throat was so painful on one side and my lymph node was inflamed. I guess my tonsils and immune system have been responding to the inflammation, so they thought I had a viral syndrome, but the prednisone and nasal steroids stopped working now. They finally did a cat scan because they thought it was a neck abscess and finally my ENT found it on the films (the radiologist missed it because he wasn’t looking for it per my doctor). I’m so confused why this happened all of the sudden, and now I’m thinking my constant neck and ear pressure wasn’t just muscle tension all these years. Either way, now I’m on the quest to find a doctor to do the surgery but the one who’s here who knows how to operate on this is pretty old now, so I’m scared to use him. I’m so grateful for this group because it seems there’s a really good doctor in Penn that people talked about and I’m thinking I’d feel the best with him. But anyway, I’m sorry for my rambling. I’m just absorbing all of this and again, thanks for being here. It means so much to me.
Hi & welcome!
It’s amazing how many of us read through the symptoms of ES when we’re first diagnosed & realise that we’ve had symptoms for years! So yours could’ve been gradually coming on as the styloid process grew/ ligament calcified, & like you say, not realised neck problems were ES. But other members have had very sudden onset of symptoms- sometimes laughing or sneezing a bit violently can bring it on, or a fall, accident etc. Also with time, connective tissue loosens & that can bring the styloids into contact with nerves etc.
Also radiologists often don’t notice elongated styloids, partly because it’s so rare & they’re not looking for it! So not surprising they missed it. But very good that you have an ‘eagle eyed’ (sorry!) ENT who spotted it!
I can understand it being a bit of a shock, & being self employed & a single mum obviously makes life harder for you- have you got any family support? It can also be a worry if you think that there might be pressure on blood vessels from the styloids, but the risk of anything happening from that is very, very rare. Did you have a CT with contrast? If you did that’ll show if there is any compression.
The discussions are searchable & there’s lots of info about recovery from surgery & what to expect, but it can vary quite a bit. Some people are fine to go back to work after a couple of weeks if it’s a desk job, others longer, especially if they do any manual work.
We have a list of doctors familiar with the surgery in the Doctors Info Section, here’s the link:
There are a couple in Connecticut, it’s worth travelling to see a doctor with experience. If you see someone, check how much of the styloid process they remove, & also whether they smooth the end off. There is more detailed info in a recent discussion about what to ask if you need it nearer the time in one of the recent discussions- you can search for that.
Best wishes, hope that you can get some help soon!
Thank you! I’m still waiting to meet with the different specialists, so I’ll definitely ask them all about that. I did have a CT scan with contrast, so I’ll hopefully know more then. I’m really looking forward to being “normal,” since I really don’t think I’ve been myself for years!
Naturemama5175…you speak the language of all of us with this dreadful issue! “Don’t think I’ve been myself for years!” I often wonder what my life would have been like if I had not been battling this dreadful thing for sooooo long! Glad you are part of this crazy but very helpful group - we are all well versed in the good, bad & ugly!
Wow! Those symptoms sound EXACTLY what I had. Here’s the good news. Dr. Cognetti excised the stylohyoid, (almost 6 cm, attached to hyoid), was in n out of the hospital same day. Was back at work fully in less than a week. The only difficulty was swallowing the first few days. Likely from the intubation.
Even better news, I didn’t need any hard painkillers. Just took Tylenol p.m. the first two nights to help with sleep and the rest of the week I did something less orthodox. Weed. It helped with the pain, but more importantly it increased my appetite so I was swallowing better and more frequently
In short, my anxieties before the surgery were pretty much unwarranted and I wish and bless you with the same.
This is such good news! How do you feel now? And how long were you out of work? And thank you
There are a few other small things I did to accelerate the healing process, but I’d say one week out of work is fair. Also, I work in a school as a special ed therapist. I therefore scheduled my surgery for summer when the workload is lighter and I technically can make my own hours. Still, I changed someone’s tire on the side of the road 4days post surgery… so, still amazing recovery and all my symptoms have are pretty much GONE!
Wow this is so fantastic!! Any suggestions on pain relief methods while I wait? This throat pain and neck grinding sensation is really affecting my ability to function. I’m a psychiatric nurse practitioner who does therapy, so of course I talk all day and can’t rest my throat.
I had my left side removed on oct 4 by Dr Cognetti in Philadelphia PA, they did a great job, and will have the right side removed soon, it was sore from the surgery for about a week but not bad enough to take any pain pills, I have a 1 to 1.5 inch scar .
That’s such good news! What were your symptoms before and how are you feeling now? Did you know you needed both sides or did he find it on the catscan? And do you live close or did you have to travel to him? Sorry for all the questions!!
I had all the typical ES symptoms for the past 6 plus years I took the Doctors 3 years to find the problem then was told by one Doctor that I would feel worse if I had the surgery so I lived with for the past 3 years then decided to see Dr Cognetti after reading on here about him, I live Tennessee, so yes I did travel to see him, and a telavideo post op.
The VA did a CT 6 years ago but didn’t see it, I could feel the end of it in the back of throats and finally went to and non VA ET who was familiar with ES a knew as soon as he felt it in the back of my throats said I had ES.
So frustrating that it took so long to diagnose, but great that you’ve been able to have surgery! I hope that your 2nd surgery goes smoothly too!
I’m so happy to hear you’re doing better. It gives me hope so thank you
Thank you , I really appreciate your help.
I live in New Orleans and it took me 3 years to find a doctor I was finally comfortable with doing the surgery. The first 2 I saw discouraged me from doing surgery saying it “wasn’t worth the risk.” I think that is because they weren’t familiar with it as much and I gave up for a while. Then I found this site and a doctor about an hour away who has done many ES surgeries and I am very comfortable with. I’m supposed to get the first done by the end of October so will let you know how it goes. Best of luck!
That’s great! How are they doing it? You must be excited to finally get some relieved!
You can also play a role in how quickly you heal by listening to your body post op & taking it easy on days when you feel especially tired or sore rather than “pushing through”. Also, sticking w/ the prescribed pain med regimen for the first week post op can make a huge difference. Staying ahead of post op pain goes far toward helping w/ healing. It’s hard to play catch up. Prescription pain meds can have side effects you may not want to deal with but they are more heavy duty than OTC meds. I was thankful for what I was given. Tylenol wouldn’t have cut it for me.
Horrible that you had to wait all of those years! What’re your symptoms?
Thanks Isaiah… this is really helpful. Hope you’re feeling better!