You can type Dr. Sale’s name in the search box & posts about him will come up. Since you have symptoms that could mean you have vascular compression, seeing Dr. Hepworth might give you the best surgical results because he specializes in vascular ES.
Which symptoms tend to be more vascular and thanks!
IJV compression symptoms include vertigo, pulsatile tinnitus (hearing your heartbeat in your ear), visual changes/loss of vision, migraines, intracranial hypertension (high blood pressure w/in your skull)., feeling drunk or out of body, etc. These symptoms occur because the blood can’t flow out of your brain at the rate it needs to when the IJV is compressed.
ICA compression is the opposite problem. Blood flow into the brain is hindered. Symptoms are more stroke-like including dizziness, visual fuzziness, facial numbness/tingling, etc. In extreme cases of ICA compression a few people have had TIAs or strokes & even more rarely died from the stroke.
I too can highly recommend Dr. Hepworth and his PA Alison Love! They are the most caring and investigative doctors I have ever encountered hands down! I have chronic health issues myself and have seen plenty of docs in my 56 yrs. However, my daughter is the patient with the extremely serious rare severe health issues that we have been dealing with for 7 years now and they are so awesome with her. They really are patient and kinds as well as delving into former scans and tests to research her case and find the root cause of the issues. It’s been a long drawn out process, like peeling an onion, to get through all the layers. So thankful for Dr. Hepworth and his team. It definitely takes a long time to schedule, especially for surgery, but I think it’s worth it.
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Based on what I’ve read I think seeing Dr. Hepworth would probably be my best option. If I knew exactly what my root problem was I think I would be fine with seeing someone local but I really like hearing that Dr. Hepworth is open minded and investigates thoroughly before taking action. The time it takes to get in is unfortunate but I’ve dealt with this for 8 years and waited six months for doctors that just turned me away.
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I wasn’t able to get in to see Dr. Hepworth’s NP until January which is a little disappointing but they did say that after visiting with her I would have the option to have a teleappointment with Dr. Hepworth so that should speed things up and save me a trip. They also have a wait list for anyone that is interested. Thanks again to everyone that chimed in. I’ll keep you posted.
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I think that’s a good idea @stuuke I’m happy to talk with you more about my experience there if it would help. Dr. H’s NP also can hopefully help tide you over in the meantime with some treatments that might help. They are a very empathetic team and in my experience did not expect me to just suffer until surgery. They’ve prescribed a few medications that helped immensely for the time being, so much so that I was actually kind of putting off surgery. If you needed a support person in Denver after your surgery I could even probably help you with that, I live super close to his office and the hospital he operates at.
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ON the good side Stuuke, air fares are low right now so if a cancellation comes up, it wont be too expensive to get a short notice airfare. I would call every Monday mid-morning to inquire about cancellations if you are so motivated.
I had a whiplash (2) early in my life which caused immediate neck problems for me. I had alot of neck instability and only got relief from chiropractors and massage. I did multiple rounds of prolotheraphy by some orthopedics who told me I was hypermobile. I later learned I had ehlers danlos - a connective tissue disorder causing lax ligaments. The prolo helped me some but the purpose of its use was to help tighten the muscles/ligaments and stabilize my neck. In hind sight, Im not so sure tightening my ligaments was helpful to all my chronic neck tension. I had TMJ starting up back then as well and major headaches all the time. Like you, I made the rounds to pain centers, PT’s, OT’s etc. Many of have on our journey thru the health system. Regular massage helps me but its benefits are short lived. I have been getting regular injections of botox, steriods and nerve blocks in my jaw, temple and occipital areas. I have found that warm water aerobics to be helpful for overall pain and takes pressure off the neck and can be gentler workout.
Ive had ES surgery which has helped but I still do struggle with the TMJ and neck instability. I chose to take care of the styloids first, then move on to the other issues. I can be complex to sort it all out. I think the whiplash sets us up for all these problems personally.
Its sounds like you actually have a diagnosis and know you have the compression. You also have identified an excellent doctor. That is half the battle.
Im curious on your medical travels if any doctor has given you some rounds of oral steroids? I found a 10 day high dose round of dexamethazone to knock down the swelling and inflammation when I was in major ES pain flair. Ive since moved on to injections which have helped also. It may help get some relief until you can get ES surgery.
I haven’t tried any medication. One of my doctors had mentioned putting me on some type of nerve medicine but said that the side effect was fatigue which I already have so he decided against it. I did 3-4 rounds of Botox but didn’t notice any improvement there. Most of the medical doctors I’ve seen just shrug and blow me off. That’s why I had such high hopes for Caring Medical. I picked up copies of all of my CT scans, MRIs and reports today to send to Dr. Hepworth.
Yes, I have tended to stay away from the nerve meds myself for the same reasons. As for the botox, I spoke to my neurologist about the dosage after the 1st couple rounds and he bumped it up as everyones needs are different. I went to new dentist yesterday and he checked my massetter muscles in jaw and felt the botox was working well and muscles not too tight as they have been in the past. Sometimes it doesnt always feel that way ie: that’s it working. I usually get it quarterly but the important addition with the botox is the steroid injections which help reduce the inflammation and knock down the pain. My understanding is the botox also by way of freezing the muscle also helps with the inflammation.
One thing good about the oral steroids is that it can sometimes have the side effect of making you a little hyper after a few days of it thus higher energy levels. As for docs blowing you off, Ive have gone thru several (even pain specialists) for years before I found this neurologist. He specializes in doing these injections deep into the throat, jaw, neck and skull. He goes where no pain doc would go and without ultrasound guided. Hes on the older side and very experienced. At my first visit with him, he brought up the possible Eagles diagnosis and I got a CT scan to confirm. I am thankfully I got to the right doctor. It sometimes years and alot of pain & frustration to get to a doc that actually listens. My motto is “Never give up” and dont let the B^%#%#rds get you down". You are so on the right track with Dr. Hepworth but it would be nice to have some local docs to help manage all you pain/fatigue issues. keep trying and asking around, eventually you will come across some good ones that dont blow you off. Its a little more difficult right now because of COVID overload on the medical system. I highly suggest getting oral round of steroids to get some relief if that is not contraindicated with your autoimmune issues.
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Snapple do you think Dr. Hepworth will be able to sort out what is what? The two neurologist I’ve seen here have been dead ends. The first neurologist thought I needed Botox closer to my jugular and she wasn’t comfortable doing that area so she sent me to the guy that told me he didn’t see any reason to treat me at all. There’s another neurologist I’ve heard good things about but I figured Dr. Hepworth would be my first step. I feel like my TMJ issues are caused by the dystonia pulling everything out of whack. I’ve been dealing with this crap so long I’m really sure how I’m supposed to feel at this age. I might fix all of my issues and still be tired all the time lol.
@stuuke I went in to Dr Hepworth April 2020 with throat pain on one side and an enlarged right tonsil. I thought I had tonsillitis. We tried antibiotics, they didn’t help. Then he thought maybe I had a salivary gland infection/blockage so he treated me for that and ordered a CT scan. The CT scan showed nothing wrong with my salivary glands at all but he noticed my right styloid was quite long and ligament calcified and stretched over my veins. I was also complaining of neck and shoulder pain radiating into my arm… he told me my symptoms really match with eagle syndrome. He sent me for an ultrasound of my jugular. That showed compression, and that is when he asked if I get headaches. As a matter of fact I do, I was diagnosed with migraines only on my right side when I was 25. I also have dizzy spells and feel like I’m going to pass out when exercising, when bending down, etc. We’ve also tried a neck brace to rule out TOS, a few other antibiotics, he sent me for an angiogram (that was mostly normal) and to have my optic nerve checked for signs of swelling. He put me on a blood thinner and a muscle relaxer, which took away nearly ALL of my symptoms. Eventually we settled on doing the styloid surgery.
All that to say… yes! He will sort out what is what. I went in with what I thought was tonsillitis. I thought I needed my tonsils taken out. Dr H told me a less discerning ENT likely would have just recommended that. He got to the root of the issue and connected other symptoms I was having that I did not realize were related at all. He also worked very hard to rule out other issues before recommending surgery. If you go in with scans already, that should expedite the process. It seems like he does more testing than other eagle syndrome doctors I’ve read about on here but that just makes me more confident we are on the right path. Seriously, can’t recommend him enough!
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It sure sounds like you are in excellent hand with Dr. Hepworth and blossom has had alot of experience to back that up as well as others. Of all the docs patients talk about here, he appears to be in the top 5 for good outcomes. Cant promise he can figure it all out but your chances of success are way higher with him that most anyone else as he appears to know alot about compressions,etc.
As for getting botox closer to jugular…so funny…before I found the neurologist I have, the pain doc didnt want to venture into certain areas and was a bit of a weeny. I was only lucky to get referred to someone who was experienced going into this area. Sounds like you need to keep looking for right neurologist re: for right injections.
The neurologist said I have dystonia too and I’m with you on everything getting pulled out of whack. Ive been dealing with it to for so many years and it is chronic, Im exhausted as well but not in the same way as you. Im 65 and just plain tired of dealing with chronic pain. You have identified already compressions that could be a source of alot of your symptoms and I would be very hopeful Dr. Hepworth can help you.
As for the dystonia and all, I know if I really focused in on some regular weekly PT/OT and some suggested pilates to strengthen my core and neck, it might improve. The PT was kicking up my ES symptoms prior to surgery so I backed off from it and due to COVID havent been able to get back on a strengthing program. Hang in there stuuke. I think there is a light at the end of this tunnel for you.
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I take Amitriptyline for nerve pain, I don’t get too fatigued with it, it does help me sleep though. That was a bonus for me as the pain used to wake me up!
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His NPs are great and Dr. Hepworth is definitely worth the wait. 
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I’ve noticed that I really have bad flare-ups involving pain and pressure in my head when I have a rough night of sleep. It typically happens if one of the kids sleeps with me and I’m in an odd position or just don’t get good sleep. I have trouble sleeping without melatonin and other sleep aids but I’ve never been able to figure out why a bad night of sleep causes such an increase in pressure.
I have found similar issues. I think it is exactly what you say, the odd position. I find if I am not supporting my neck and positioning my head just right then I will often wake up with increased pressure. My PT did show me a great maneuver that can help, standing against a wall backward and gently tipping your head up to look slightly to the right and hold it that way a bit then the left. I that you have to move tiny bits at a time when looking up before you will feel things moving down. this is a really slight tipping not extreme. don’t overextend your neck. It has helped me so many times. Also when you go to bed, sleeping and a slight incline and if you have pulsing and can find a position that minimizes that I have found I sleep better. Hope that helps
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I have noticed the very same. My level of chronic pain the next day is how much I woke up and the quality of my sleep. The more unstable my neck is and whether I sleep in contorted positions make a hige difference. i have so much neck instability, that my neck will go out if I sleep wrong. I am a side sleeper and move back and forth from side to side all night long. I have tried every pillow imaginable over decades and purchased many new mattresses. Before ES surgery I bought a wedge pillow from Medcline. It also has one that has higher incline for GERD which I also have, so I got that one. It wasnt cheap about $250. I also bough a u-shaped pillow (by Contours) which Jules recommended. These have been the best choices I have made for pillows and have stabilized my neck alot…I still have my days I wake up with headaches and feel like the pressure in my head is bad if I have slipped out of position.
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Is the Contours pillow on Amazon?
Yes. I think there are a couple brands that make U-shaped pillows. Ive bought several and was happy with “Contours”