Yes, Dr. Hepworth especially good with this Cali and worth the flight to see him.
I have EDS (Ehlers Danlos-Hypermobility) - cervical instability -lots of headaches, TMJ and ES. My daughter has EDS, TMJ and POTS/Dysautonomia.
I have had over 20 surgeries in my life and the ES surgery was a piece of cake. Especially in the hands of the right surgeon. Last year I had a tooth extraction that went sideways that put my TMJ into hyper-pain and an ER visit. It was horrible. I told my dentist, Id rather have my neck cut open ie: eagles surgery. Every surgery has its risks but ES surgery was very easy for me. I had it done 9 months apart - external.
Im curious what kind of specialist did the neuro tests? I currently started seeing an highly specialized ENT recently for vertigo, dizziness, etc. I tend to run low blood pressure. So does my daughter who has POTS.
Do you have EDS? There are some good docs for CFS at UCLA-Neurosurgery center. One who is expert is a Dr. Batzdorf. He is retired now but does hang out but has well trained surgeon taking over for him.
Have they done a heart rate w/ blood pressure laying down 1st, sitting 2nd, and then standing? The best thing is to do the this in 5-10 minute intervals. The most important criteria is the heart rate change especially upon standing. If you are getting a jump in the heart rate upon standing >30bpm, you might want to consider more testing for that.
It took over 8 years to diagnosis my daughters POTS…if they would have just down the simple sitting/standing heart rate test…
"Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder characterized by two factors:
A specific group of symptoms that frequently occur when standing upright*
"A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing*
POTS is diagnosed only when orthostatic hypotension is ruled out and when there is no acute dehydration or blood loss. Orthostatic hypotension is a form of low blood pressure: 20mm Hg drop in systolic or a 10mm Hg drop in diastolic blood pressure in the first three minutes of standing upright."
I’m so glad your daughter made it through surgery and sooner than planned! While I didn’t have a lumbar puncture after surgery I did have a venogram and everything was “clear,” but I did not get rid of my headaches until about two months post op. I did restart a blood thinner in that time as well, which helped me get through the worst of it. I’m doing great now with just some slight shoulder and neck pain which Dr. H referred me to physical therapy for. No dizziness, even with strenuous exercising, and really no headaches except very slight and very infrequent. I know it can be so hard not to cling to every remaining bad symptom and focus on it, but try as hard as you can to stay open minded and positive. Not that positive thinking will magically cure her, but it does help not to get so down in the dumps. Fingers crossed that her recovery goes smoothly and she will be feeling better soon!
Thanks so much, Blossom. We are beginning to see small improvements (she can’t see it yet). We are taking every one of them and counting our blessings. We are in good hands with Dr. Hepworth and will wait, even if a bit impatiently.
Thank you for the official scoop, NAWAS. I’d heard from several members who’d contacted Dr. Hepworth’s ofc that he wasn’t taking new patients. They were told to call back after May to see if that had changed. I hope so while realizing he is only one person & can’t save the world by himself. I know he’s doing all he can & gives all he can to the patients he serves. He is a radiant example of how a medicine should be practiced.
Will keep praying for improvements for your daughter, good you’ve noticed something! It’s so hard when you gear yourself up for a surgery & then don’t see a ‘cure’, good she’s got you for support
I should have also mentioned that I am praying for your daughter & am glad you’re seeing improvement in her situation no matter how small. It’s hard to be patient & wait for symptoms to disappear gradually. ES surgery is definitely a good test of patience though. I had symptoms that took 9 months to finally subside & others even longer though my worst ones were gone by 3-4 mos post op.
Thanks so very much for all the wonderful support. It feels really good to have a community rooting for us.
Long before the pandemic, we were already very isolated. So many friends and family just couldn’t see to hang in there or understand what we were dealing with. Additionally, with all the constant symptoms, specialists and procedures, we really couldn’t get out much or socialize.
Thanks again for being there, it really helps.
Even among his patients, it’s backed up too… they told me that there is usually a 10% chance Dr Hepworth does the other side, but if I needed to get it done it might not be until after November before I get in for the left removal. What this tells me is lots of people are in need of this wonderful doctor. I wish there was a 100 of him . But on the bright side the super long wait I had before I got this right styloid removed was worth it. It’s better to wait 6-8 months even if that means lots of pain, than to get this surgery done with a doctor who is not as competent as Dr Hepworth. It is rare to find a good doctor for eagles so the wait is warranted. But Dr Hepworth certainly is not the only “competent” eagles doctor out there, just one of them.
. But on the bright side the super long wait I had before I got this right styloid removed was worth it. It’s better to wait 6-8 months even if that means lots of pain, than to get this surgery done with a doctor who is not as competent as Dr Hepworth. It is rare to find a good doctor for eagles so the wait is warranted. But Dr Hepworth certainly is not the only “competent” eagles doctor out there, just one of them.