Passing it Forward After surgery

Hi everyone, I have been searching for information from those who have had surgeries. I am noticing that many members who have surgery, will leave a note about how they are doing a few days to a week or two after surgery and then we never hear from you again. Many of us search for answers, get support, advice, then when we are in a position to give support and advice we just go about our lives. The thing is, new people come and are searching and you have not given your story. The end result is important. 3 months, 6 months, a year, 2 years. These healings take time. Some get well, and leave, but did you have more complications after? Did you hurt a lot for months after and not tell us your story. We as a forum need to hear from you whether you did well or not so well. People want to know the end result and the pitfalls and relief. I have been searching for some information from people who asked many questions and immediately after surgery, they left. I can understand staying off for several weeks to even a few months, but new members are searching for support and answers. Even if you, had problems, have problems, you do not need to be dramatic, but just let us know how you are doing. Do not disrespect the doctors, but just leave people a clue as to how you are doing. Come back over time find your last post and add a comment because the nerves are funny, they heal overtime, and sometimes the pain comes back over time. Please leave some information. Pass on the love that you have received. Some of us, like myself, have had to leave occasionally because of pain, but at least stay on long enough to give back. That would be very nice. I am searching because my pain is back in the previously operated area. I am searching for cases that grew back and doctors who redid old ones, how, what city, did you travel, if so how did you and the doctor handle it. Those are soooo important. I have some contacts that I have been able to reach personally from the past. 4 years ago, and they have had to move on, but they left their stories first. We messaged and we became friends, but only after we were able to compare our stories on this forum. I have found several interesting stories lately, and the story ends with the surgery, but the surgery is not the story, the recovery time, the journey is the hope for the rest left behind. If you leave something in the discussions, they can be located long term by searching for member and retrieving a post. The information can be found so please leave the journey even if you only post biannually for 2 years, it would help. Thank you.

I hear you! I’ve just had my second surgery a week ago. The other was two months ago. I’m busy but will try to do as you are asking in the next couple weeks and continue after that. You’re point is so valid!!! Thank you. This moved me and I hope others to make time. God Bless!!

I do agree, Emma! It’s why I decided I wanted to help out moderating, and I guess like you doing the original doctors lists Emma. But it doesn’t need to be as involved as that as many are busy getting on with their lives- just a quick update. But to be fair, the whole battle to get diagnosed and to get treated can take years, so maybe people just want to enjoy living again and try to forget some of this!
The thing is, if people only come back on when they have problems, it can give a biased impression of surgery- if members only read negative posts and not positive ones after surgery, it doesn’t give a balanced view.
I hope that you can find the info you need!
And Aking- I hope that you heal well and soon recover!

Hi, very good email! I had surgery 5months ago so not that long but the main headaches and numb tongue have almost gone. The op site is starting to come back to life and is very sore to touch and my throat feels very hot. My GP is not sure if its nerves coming back to life or the styloid the other side. I had to really fight and pay for my mother to get an X-ray and consultation with 3 ENT. I could see the styloid fractured on it.All her symptoms were spot on. 3 of them didn’t want to or know if she had it but finally got one to admit it was there. He said that the styloid only causes jaw pain opening and closing the mouth. I was angry as this is not the case. Local ENT uk weren’t helpful. For me the pain of the recovery was worth the pain before and the stress of just not being believed. I have to give it a year before I have the other side done. I will keep posting.

My surgery was 7 years ago I only had it on the right side It cured alot of pain I would push on my jaw all day or look like I as trying to chew my ear ,those symptoms are gone ,but other symptoms such as fatigue,cool sensation when I breathe in and swollen lymphnode all on the right side are still present

9 months out, I still have some symptoms, such as tenderness and tinnitus. I’m sensitive to that area

I’m 2.5 years out from removal of my right styloid & s-h ligament & 1.75 years out from removal of those on my left side. I continue to be asymptomatic as far as my ES symptoms go, however, I did suffer some facial nerve damage near my right jaw joint which causes pain when I poke the area. If I don’t poke it, it doesn’t hurt. I have a little residual numbness along my lower left jaw line & first bite syndrome on the right. As bad as all this may sound, it’s NOTHING compared to what I suffered from having elongated styloids & partially calcified ligaments. I am one happy camper and so thankful for the choice I made to have surgery.

Thank you for responding

You are most welcome! I hope you continue to heal & feel good about your choice to have surgery.

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I’m 8 months post external surgery on left side (4.0 cm removed). Before surgery I had dizziness, heart palpitations, dull achy pain in my left neck, facial tingling on my left cheek, a catch in my throat, all of which evolved over 2 years. Post-surgery I have had little to no symptoms return, and the surgery was truly life saving compared to before the surgery. I get an occasional twinge deep in the neck from time-to-time, which I think is from scar tissue. Both my ENT and PT said that moving the neck and massaging the scar are crucial to prevent internal scarring. I also feel it’s really, really important to keep your neck and shoulders strong with exercises (I have a pretty thin neck) to prevent any long term complications: people shrink with age, and spines compress, why chance it? I also a really long calcified styloid on the right side (4.6 cm) but the symptoms are manageable compared to how the left was - some slight occ. ear pain.

That’s good news, CPR, so glad to hear you’re doing well! :grinning:

I am happy I had both fully removed. Still have a little bit of symptoms 1 month on my rt. side, but symptom free on my left [5 months ago]