I had a year after being diagnosed where I decided to leave surgery as my pain didn’t seem too bad, it was manageable compared to the risks of surgery, but then I developed vascular symptoms & I felt really ill with it. The last few months before my surgery were particularly hard! (I’m UK, so our waits are longer…) So it’s hard to say what symptoms are ES & you can’t always compare to others’ as everyone’s experience is unique. There have been a few members whose symptoms have been so severe that they’ve been bed ridden, so hang in there & I’m sure as Isaiah says Dr Samji wouldn’t be scheduling a phone appt if he didn’t feel he could help.
Let us know how it goes!
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Thank you both. Life is so hard sometimes. I will update after my consultation. God Bless you.
I too feel like from a pain perspective I could probably take pain meds and deal with it. The symptoms that control my life are what I believe are either vagus nerve or vascular. While I had these symptoms to a mild degree for the past 9 years they have ramped up a whole lot in the past year which I am thinking could be because of my ES. I guess I’m struggling with how to know which way to go when you don’t actually know what’s causing it. If I remember correctly you had proof of compression. If I had that it would be a clear decision for me. I do plan to ask Dr. Samji today if he sees that since my scan is with contrast.
Yes, the CT showed the compression, so that did make the decision easier…lots of members have had vagus nerve symptoms, but obvs can’t give you the guarantee that surgery will cure all your symptoms, I can understand that it’s a difficult decision for you.
Hi one day
My pain was always less in the am. I think it is because my jaw was resting at night and not causing the irritation.
Before I got diagnosed i was beginning to believe i was allergic to my morning ritual of tea. Soon as I got up and started moving around I would need to clear my throat, start coughing then it went down hill from there. I was also thinking the lemon in my all day cold tea was causing my sore throat. Nope… it was the styloids rubbing up against the tissue in my mouth. My right styloid was so close to the throat in the ct scan. I am so thankful being day 6 and no sore throat.
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So odd I also thought I had become allergic to something, but I knew it was weird to be on one side only. The pain itself once I get going in the morning is probably a 5 or 6. I am used to pain and discomfort so I just live with it. I’m glad to know your sore throat is gone.
Hi one-day
I think ES makes us all try to be creative about why we are feeling what we are.
I had my zoom consultation. I really like Dr. Samji. He’s very easy to talk to and made me feel like he had plenty of time to discuss my issues. He said I’m a good candidate for surgery and advised me to sleep on it and see how I feel. He said the biggest risk is that it won’t relief my symptoms. He told me he’s done about 350 of these surgeries. I had read he did over 500 so that confused me a bit but I didn’t question it.
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I am guilty of mentioning that Dr. Samji had done 500 surgeries because someone who had consulted w/ him mentioned a number close to that. I should have verified it w/ him or his medical assistant before putting it in writing. I’m sorry about that. I actually sat in on a Dr. Samji appt. w/ one of our members last week, & at that time, he said he had done about 350 surgeries so what you learned from him is consistent w/ what he told the other forum member last week. Again, I’m sorry for my mistake. I should have posted a correction earlier.
I’m glad your consult went well.
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Oh no worries at all. I was hoping the other 150 weren’t just unfavorable outcomes lol! He seems very knowledgeable. He also informed me that he is curious about a correlation between POTS and ES. He said he has had several patients with POTS and that possibly the surgery could improve those issues for me. Of course that’s my hope as well. I think I know what I need to do it’s just hard to commit. It’s all so overwhelming.
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I completely understand your fears & being overwhelmed. This is a BIG surgery w/ a relatively small incision. It takes some months to heal & up to a year for the full picture of what’s recovered & what hasn’t, to develop. I’m actually still getting nerve recovery 6 years out from my first surgery which tells me, my body has never given up trying to fix what’s “broken”.
I tried to gauge how risky it is with Dr. Samji and he just said all surgery is risky. He said the biggest risk with ES surgery is the 10% chance that it won’t work. But he seemed to think he could help me. Obviously I would like to know that I won’t be any worse off but of course nobody can tell me that. I tend to worry a lot and being in such ill health already I can’t really afford to lose more function.
Another, more optimistic way to look at what Dr. Samji said is, there’s a 90% chance of improvement! Those seem like some pretty good odds to me. For most of us, not every symptom goes completely away, but they reduce enough that we can mostly ignore them or can take a low dose nerve pain med & function on the level we did before ES knocked us down. For me, it was worth the risk, and I’m so glad I took the chance as I came back to full function over the course of a bit over a year. Recovery is a slow process, but our bodies aim to thrive & survive especially when we give them the help they need to do that.
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I don’t take any meds for it which is what keeps making me think I don’t need to do it yet. I have taken Tylenol a few times but I don’t take anything daily.
I never took meds for my symptoms. I was debilitated by them, but I tend to shy away from OTC pain meds because I’ve had some bad side effects in the past.
Ah okay that makes me feel better. I told them I want to move forward so just waiting for a surgery date!
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That’s good you’ve made the decision! I hope that talking to Dr Samji has put your mind at rest; there are risks but seeing an experienced surgeon will give you the best outcome possible. It will be good for Dr Samji to explore a link between POTS & ES, good that he’s aware of this.
Hope you get a date soon!
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Thanks Jules. I have realized that prior to my ES symptoms I was much much more functional. It could just be a coincidence, or it could be connected. Fingers crossed all goes well and I can resume a somewhat normal life.
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I have a surgery date of May 24th. I’m very very nervous but I feel like I have to at least try to get relief.
Are you scheduled with Dr. Samji, one_day?