@juliezuber I’m the sole caregiver for my husband who has multiple medical conditions that I advocate and join in all his appointments (his drs ask Mrs “ how are you doing I always smile and say I’m good but on the inside I’m screaming help, but I don’t want to tangle his issues with mine with same drs), with medications, his special diets, and handling household affairs. oh and caring for my 2 little furry boys that brings a world of joy in this 2 member family! During in between times I do as much as I can to help myself. With that being said, Do you think Dr Hepworth would order an ultrasound to be done here in NC? I would be able to travel anywhere if it’s not for a long period of time and hopefully not multiple trips. I’m going to contact MSK Neurology, and Borg and Ide that @Jules mentioned also, to see if they’ll view and discuss my scans, I’m not sure how to begin explaining my situation to either or anyone. This past Monday I asked my GP to order a scan that would be sufficient to learn about my veins and arteries and also my thyroid tongue situation as well, I’m waiting to hear from them but now after gratefully reading @vdm favorite resources on iodine in CT scans, I’m thinking I really need to see a dr more specialized like Dr Hepworth before allowing more CT iodine into my thyroid.
I was thinking about the possibe TOS and came across these images from 2019 thyroid ultrasound. I read it could be Graves Disease or thyroiditis or toxic thyroid or rupture of sorts or is this normal? It’s on other ultrasounds of mine but nothing like these. Do you know if this a normal view in the carotid jugular vein area on color Doppler ultrasounds?
I talked with BCBS health support told them my story and they’re going to be here for me to assist with locating drs and making suggestions if need. It’s not quite what I was hoping for but it feels great to be able to talk with someone and have their support. She suggested I contact a cardiologist then maybe they’d refer me to Vascular Dr. If at all possible I sure would love to have one Dr who knew what’s happening with me and could diagnose and treat themselves , like Hepworth. Each and every suggestion is thoroughly appreciated. Thank you so much!!!
@Jules thank you for sharing! Funny thing is I was reading that particular post when I came across the share with me. I’m going to reach out to them to see if they’d be willing to review the scans I have. Thanks again!
@juliezuber you are well informed with your thyroid gland!! Happy you’ve learned how to treat your thyroid issues!! I’m not sure what levels make me feel better I’m guessing because of the pains I experience also. I took Armor Thyroid for a couple years then thought maybe I was allergic to pork I still say there’s something wrong with my thyroid that maybe I’d be better off without part or all?? Thank you!!!
I can’t begin to know the scans like you do. I’ve never ventured there. I applaud your thoroughness.
Maybe a phone consult with Hepworth would be a good first step to go over scans you already have?
He has trained a few places to do the jugular ultrasound as he likes them. I’m not sure if one from somewhere else would be the same (as useful to him). That would be a good question for him.
Sorry I’m not more help. Sorry about your husband. That is a lot of stress.
@MandS - You have to be persistent to get through to a live person at Dr. Hepworth’s ofc. It often takes a number of tries at various times of the day as leaving a message doesn’t usually result in a call back.
Dr. Fargen is in NC & is Dr. Hepworth’s go to for patients who have serious vascular issues. He has also done a few styloidectomies but I’m not sure how well they’ve turned out. I know the very first one he did ended up w/ a revision surgery being done by Dr. Hackman. Dr. Fargen trained for doing ES surgeries under the auspices of Dr. Hepworth & as with any procedure, practice will make perfect. You might want to at least consult with him & ask what scans/tests can be used to ID vascular compression. Certainly the US is one that isn’t invasive. Dr. Fargen may even do those or at least would know someone in the area that can do it the way Dr. Hepworth likes.
I also want to commend you for being such an amazing & selfless caregiver for your husband. I’m glad you have “furry children” to help keep you both entertained. They are such great company!
I’m not sure if he’s still doing surgeries, or if it’s just ES surgeries he’s stopped doing, but one of our members ( @emma ) saw Dr Daniel Nuss in Louisiana for her thyroid and said how helpful he was…maybe worth looking into? Dr Daniel Nuss Department Chairman Faculty Page (lsuhsc.edu)
Several members tried to see him for styloidectomies but he wasn’t able to do the surgery then, so not sure if this is any good to you, just a thought!
@Isaiah_40_31@Jules@vdm and so many others. Kudos!! I commend you as well! I don’t know how you do it. You take the time to read, research and respond to all these posts with care and respect, day after day. Thank you for being who you are!
You’re welcome, @MandS. There were other moderators & members who did that for us in our time of need. @Jules once said she felt this was a way she could give back for what she’d received. I’m in that same camp.
Dr Nuss did my eagles surgeries, bc I had what looked like an osteoma and zi had previous thyroid cancer. He concentrates on cancer. I do not think he is actively doing eagles. The cancer centers in our area have been in flux. Not sure what is going on, but major changes in cancer groups.
Go to an ENT in New Orleans or Baton Rouge, get a referral to a skull base doctor if you have
Sorry, my message was dropped. If you have Eagles or think you do, to get into see a doctor associated with Dr Nuss, you need a referral. I think there is at least one other younger skull base physician in the area, but not sure what it takes to see them now with all the changes that were made.
Emma, Thank you for the references! I googled Dr. Nuss and have him noted. I can’t say for sure but I don’t think I have ES and hope that doesn’t come back to bite me. I’m going to see a heart and vascular dr locally. I’ve never been to a heart dr. and at the age of 60s it’s about time anyway. I keep looking at others dicoms on this forum comparing to mine. My veins are really weird. Like I’ve got more going on even in the throat/hyoid area. Hoping the heart dr. will be a good start. Also seeing my GYN to follow up on an adenoma in my left breast. I see what looks like a cyst or lesion below the left thyroid gland that made me think about the place on breast same side. Between the 2 of them I’m hoping that I will be able to get good referrals if I need them. Again thank you so much.
Kyphotic curve
Isaiah, I was going through files and saw a re-review from an online radiologist that said my neck is Kyphotic in lieu of lordotic. You were spot on!! I’m not sure what I’m going to do about the curve at this moment but it’s noted in my to do list. Gonna see a local heart and vascular dr. first and take from there.
Yes, I would say it’s more important to figure out the cause of your chest pain & take care of your Gyne issues & thyroid than worry about your cervical spine curvature at the moment. That can certainly wait. PT might be a place to start once you’re ready to work on your neck.
Dr Nuss is for sure not your best option. I think there is someone else at Mary Bird Perkins or Our Lady of the Lake that does akull base sugeries. Hope it is not eagles, but if you get that diagnosis, you will need a refrrral from a physician to see anyone who might do the surgery.
I pray you have something less difficult.
@emma it was because of @MandS 's concerns about the thyroid I suggested Dr Nuss, I thought you’d had treatment from him with that in the past, or am I remembering wrong?
@emma@Jules you both are deeply appreciated for the thoughts and recommendations! I totally appreciate any concerns that someone may have regarding a dr and his/her abilities and specialties. I’m awaiting visits with cardiologist and gyn then take from there.
You guys are awesome keeping up with all the concerns people have!!
I’m going to reach out to them to see if they’d be willing to review the scans I have. Thanks again!
I still say there’s something wrong with my thyroid that maybe I’d be better off without part or all?? Thank you!!!
I’m not sure what I’m going to do about the curve at this moment but it’s noted in my to do list. Gonna see a local heart and vascular dr. first and take from there.