Hi all! Thank you for being there for me as I go through this ES journey. I am forever thankful for this forum. You guys have been my lifeline.
Today marks 1 month until my surgery with Dr. Hepworth and I am a complete nervous wreck. I am not so much worried about the surgery itself as I am about it helping me. I am seeing too many negative comments on the ES Facebook group and I have decided just to follow this forum for the next month in hopes you can give me some advice and reassurance. It’s been a very long 9 years and I am needing hope as I get closed to surgery.
If you have had a positive surgery for ES, please tell me about it. I would be so grateful to hear your positive outcomes…big or small! Any positive story you have personally had or other words of encouragement would be so appreciated. Thank you all. Much love.
Totallly normal to be having doubts and hesitancies. I did too. I know you’re familiar with my story but I’m a month out as of yesterday and I am already improving. I have bad days occasionally but every day was bad before surgery. It takes patience and optimism and it hasn’t been easy, but overall it went a lot better than I expected! Today I went on a two mile hike! That was hard for me to do before surgery and when not medicated, I usually felt like I was gonna pass out. Pounding in my head, etc. Today I felt weak and tired (probably from not doing much the last month or more) but I had no head symptoms or pain!
I almost didn’t go through with surgery as the time came, my nerves got more and more intense. In the end I decided I had to move forward with surgery because the thought of remaining how I was, was too unbearable… I had to try. There are risks but the risks are mitigated greatly having a surgeon as experienced as Dr H. Also, I took comfort in knowing after surgery, if not successful, Dr H was not going to leave me in a lurch. I trusted him to continue helping me even if the surgery didn’t fix my problems, so I wouldn’t be starting over at least. The longer I waited, the worse I knew recovery could be. Hang in there. Try not to let the doubts take over. Surgery is always scary and nerve racking but I have hope this one will help you a lot! And for what it’s worth, the surgery experience itself was wonderful… everyone was so helpful and kind, and my nurse stayed on top of my pain and nausea the whole time. You’ll be in great hands.
I’ve heard the same complaint about the FB ES group from another person. The only explanation I can offer is it’s possible that more of the FB members are seeing doctors who are less experienced ES surgeons and aren’t getting enough of their styloids removed. I also don’t know if the FB site has a doctors list, but I will say, we don’t add a doctor’s name to our list until we know that at least one of our members has had a successful ES surgery with that doctor.
I had many crazy symptoms from ES which made my very active lifestyle quite difficult to maintain. I, like everyone else on here, had never heard of Eagle Syndrome, a styloid process, or a stylohyoid ligament until I was diagnosed. I was shocked when I heard that surgery was the only hope I had of recovering from symptoms. My symptoms were debilitating enough that I was quick to decide on surgery so scheduled that w/ my diagnosing doctor, but then I found this forum, & other doctor recommendations, & ended up cancelling w/ my diagnosing doctor & going with Dr. Samji.
As @blossom said, we all have fears surrounding surgery, BUT the best thing you can do for yourself is face your surgery with great optimism. Don’t be unrealistic thinking you’ll wake up cured, but expect that in the months following surgery, your symptoms will disappear one by one. If you have bilateral ES, you may have some symptoms left from the remaining styloid, & they may ramp up a bit as your first side heals. This is a trend we’ve seen here & one I experienced myself.
I had wonderful results from each of my surgeries & have been back to full steam ahead w/ my physically active life for nearly 6.5 years now. I had my surgeries in 11/14 & 8/15. It took me close to a year after each surgery for the full benefits of those surgeries to be revealed. By two months post op, I had good improvement, and about each two months after that, I would notice a marked change for the better. It was a slow process but steady. I expect you will have a similar experience.
I read about a really awful experience from surgery by a member on here with the doctor I was hoping to see & it put me off having surgery for a bit. I messaged the member a while later about his experience, & am glad I did because he said the early days when he posted were awful & that was when he’d posted on here, but he’d since been doing really well- but hadn’t thought to come on & update everyone! Not saying that’s how it is on the FB group, but it’s something to consider. We have had spells on here where the balance seems to be more negative post surgery experiences than positive, but often people who aren’t feeling good come back for more support, whereas often those who are doing well don’t need us any more so leave & get on with their lives!
Personally I felt better quite quickly after surgery, the vascular symptoms improved loads, & I got my life back! The surgery was nothing like as bad as I expected , but I know it’s not always the case…as long as you don’t expect to be healed instantly & realise that you may well still have bad days, keep up with the pain relief & get lots of rest then hopefully all will be well! You are in very good hands with Dr Hepworth , we’ve heard only good things about him!
So sounds like a good idea to keep off the FB group, & hope we can help reassure you while you wait, sending you a hug
Thank you so much for your response! It is much appreciated during this time. Any words of encouragement etc. will help me as I wait and pray for better days ahead.
I am so glad to see you are noticing improvements even though there are still tough days. You make a good point about everyday being a bad day before and now you are seeing some days with relief. So wonderful! I am so thrilled for you! A two mile hike without head pain or vertigo would be so amazing!
It’s true that the risks are mitigated when having an experienced surgeon. I just need to keep reminding myself that I am blessed to have Dr. Hepworth.
I will be working on facing my surgery with great optimism! Just thinking of symptoms disappearing one by one brings a smile to my face. This would be so wonderful! I do have bilateral ES, so I will try and keep that in mind as I am healing from the 1st surgery. This will help me not to panic if I am not noticing improvements etc.
I absolutely love hearing that you had wonderful results from your surgeries! This helps me in a couple ways…
That surgery could potentially help me feel better, and more like my old self.
That even though this surgery is not well known, if it is performed by specialists it can have good outcomes.
The unknowns of it all is what causes me the most anxiety. I just need to keep reminding myself that ES may be rare, but it is not rare to Dr. Hepworth.
Thank you so much for the reminder that we may be reading what was once the worst part of someone’s recovery, but we didn’t get to see the entire picture. I think this is a really great point and I need to remind myself of this. Many people recover and no longer need the groups for support. Many times we just see the worst part of their ES journey, or we don’t see all that their journey entails and we get a skewed view. This is why I am sticking to the forum where I can get a more well rounded view of someone’s recovery. For an example, I believe I have all the same symptoms you had, and you have shared that surgery gave you your life back. These are the things I need to set my focus on! I can’t even explain the joy and peace I would feel if my vascular symptoms improve/disappear! This is something positive to focus on for sure. I worry about my veins bouncing back etc. since it has been over 9 years from when my vascular symptoms started. I am praying that this will not make a negative difference. Since it is a rare condition, I am sure many ppl have gone longer than 9 years and still have been helped with surgery. It would be great if they could give any insight.
Thank you so much for reaching out to me during this time!
I was nervous before my surgery as well. This is very normal. I had surgery on July 20, 2021. I woke up without a burning sore throat for the first time in almost two years. I had no issues at all after my surgery except for some swelling. I feel like I have my life back again and I’m so glad that I had the surgery. Good luck to you and stay strong. You can do this! Getting it fixed instead of taking medicine for the rest of your life is the way to go. Also, it sounds like you have an excellent doctor. I had an amazing doctor as well in Florida and I knew I did so that helped me with my pre op worries.
This forum is a much happier place than the Facebook page! I haven’t had surgery, but I can tell you that Dr. Hepworth is wonderful, you are in good hands, and I will be praying. Can’t wait to hear how great things are on the other side!!!
Look at it as though it was a couple of rotty teeth you were having pulled out, they are both , after all bones in the jaw
Say if I told you that when I had my rotty teeth removed my left eyeball fell out and I got lock jaw, would you still get the rotty teeth pulled? Of course you would, because they have to come out! Sooner they come out the sooner you get back to eating ice cream or whatever food or drink you may overindulge in( strong cheese for me )
It’s bones causing trouble, if I get drunk enough I will snap my right one and suffer the consequences
The left is getting my hunting knife!
Your troublesome teeth will be removed by a top notch dental expert, not by someone with false papers, who fell out of a container in London docks🤣yes of course there will be some pain and discomfort, but you can do this, and we are sure you have some good folk around you at home who will make soup
Blossom mentioned being more optimistic
She is right,and the others are too
Optimistic thinking is not caring about negative thoughts ,you here or listen them but take no notice
It’s about making assumptions that you will be fine in the end,
And you will be🤗
Thank you so much for reaching out with encouragement! The closer my surgery gets the more I have many different emotions. I am hopeful and extremely excited that this could possibly help me feel better again. I am terrified that the opposite will happen. The more positive insights I can get, the better! I LOVE hearing that you have your life back! This is what I am praying for everyday. Thank you so much for the words of encouragement. It is so appreciated during this time.
Thanks so much, Bopper! Dr. Hepworth truly is so wonderful! I am beyond blessed to be in his care. I hope and pray that I will be telling you how AMAZING things are on the other side!
Thank you, Optimistic! I am totally going to look at them as rotten teeth that are only causing mayhem in my head and need to come out. They measure around 4.7 cm so I thinks it’s safe to say these rotten teeth need out. I have no idea why it took so many years to find these dang rotten teeth! Thank you, again.
So sorry but I’m feel that I must say something I think some people are lucky, in that they have confirmed operations by the best surgeons and then feel they need to be talked into going for it,when others are waiting for operations due to their geographical locations, personal circumstances ,wealth or whatever.
I don’t to think they realise how turning down food feels to someone so hungry
I was homeless once ,due to crash which wasn’t my fault.
I lost a job,a flat and a year of my life ,I know what it is like to struggle and have only a dog for company, I know what poverty is.
I know what hunger is.
I need these bones out of my neck and as you know I wait ,and wait and wait
I have no idea how good my surgeon is,I have nothing confirmed, we have only said not even a dozen words to each other
Maybe I am oversensitive but I find that kind of talk as offensive as my racism comment which was deleted.
Why do I feel like I am having my face rubbed in the dirt?
You’re definitely in a difficult position, and your wait has been much longer than anyone I know of on this forum. This time in your life has been one excruciating setback after another - first for your only ES appointment & now for word about when you might be able to have surgery. I wish you could whisk over to the US & get your surgery done & go home a new man, but at the moment that’s not the way the world is turning. COVID has messed things up for everyone but for some a lot more than others & you fall into that category. The only thing I can do is pray that this nightmare will be over before long & you are able to say that you’re a stronger person because of what you’ve experienced.
Sending you a strong dose of hope & patience as you continue to wait.
I think I am seriously frustrated,my empathy has turned into jealousy and anger, covid has damaged my lungs, my immune system has gone hay wire , I have nummular dermatitis and am on steroids which aren’t helping, it’s interference with mechanic duty ,so is the shattered femur ,and the bones I can’t get removed,even with medical insurance.
Over 1 million people in Ireland waiting for surgery,and we are told only cancer patients will be operated on
I am being punished.Its like a kid of hell, and we are facing another lock down
I would walk across hot coals to be seen by a ES specialist , I find it offensive that someone suffering who has a surgery planed need encouragement to go ,but this is only how I feel and as much as I know I should not say this or think this ,I do.
Never have I been so low as I am now.
A friend of mine tore his crucial ligament in February this year,he hasn’t even seen his surgeon yet,he is still on crutches, he can’t work.
He is also at his wits end.
If my styloids cause internal bleeding again ,they still won’t operate.
I think if I can’t say anything positive,then it’s best to day nothing at all
I am sick of thinking about suicide, sick of feeling neglected, despite paying medical insurance
Sick of my GP’s
Several times I called them yesterday,and it is impossible to get through,and then you here radio campaigns stressing how important mental health is?
I am sorry if I offended anyone
Endurance is like petrol in a fuel tank, eventually it runs out,I am running on fumes
Could you delete from the forum I got to go it alone from here on🤗
A two mile hike without head pain or vertigo would be so amazing!
Of course you would, because they have to come out! Sooner they come out the sooner you get back to eating ice cream or whatever food or drink you may overindulge in( strong cheese for me )