Thank you for sharing your experience! It’s really helpful. I’ve had to delay starting the Brilinta for a little bit. When I start it it helps to know what to possibly expect and prepare for. This gives me hope, I’m hoping it will help my head pain and pressure some too. I’m so glad Brilinta helps you!
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I head to Denver next month. I am pretty sure Hepworth will order an ultrasound and a venogram for me. How was the venogram? I’m a bit nervous about it. I was diagnosed with venous outflow obstruction by Dr. Costantino in NY and seeing Hepworth for his opinion. Costantino was big on the spinal accessory nerve (that seems to be a lot of my issues) and the digastric muscle. I am having a brain MRI next week. Costantino also wants to see the dominant sigmoid sinus.
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Pentoxifylline is the prescription Dr. Fargen prescribed. I haven’t noticed a difference yet and I still feel like I’ve been having stronger pressure than before the procedure. I also got Covid last weekend so that has made things more difficult.
I emailed Dr. Fargen and asked him to send me the name of the Botox provider he mentioned and also if he thought it would be worth consulting with Dr. Hui. I also asked him to send my test results and information to Dr. Hepworth for my December appointment.
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Oh no, Covid on top of everything, I hope that you get over it soon…feeling stuffed up will definitely not help the head pressure symptoms 
Pretty much par for the course when it comes to my luck with health 
I just read a little about Pentoxifyline as I’d never heard of it. It says it helps blood flow more easily through narrowed arteries which I took to mean it’s a blood thinner. Interesting that it’s specific use is to help blood flow through narrowed vascular tissues since I would expect any blood thinner would do that.
I’m very sorry you haven’t gotten any significant help from it yet. I hope your appt. w/ Dr. Hepworth in Dec. is more enlightening as to what’s still going on for you. 
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The last image on the second link isn’t anonymized. Can you delete it or exclude it? I deleted the link pending your correction.
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That’s weird. Not sure if I can adjust it or not. I’ll just delete the comment and wait until Kool posts analysis.
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Finally getting over Covid. Still a little congestion and fatigue but I always have fatigue. Random thought but one of the worst things about this condition along with the months of waiting to see doctors is that there is just no immediate help. You can be in so much pain and even if you go to the emergency room(which I’ve tried) there’s nothing they can do for you. The only option I have when my pain is at the worst is to completely shut down work, family and everything and lie down. It doesn’t make it completely go away but it helps. I’m kind of regretting my procedure with Dr. Fargen as the pain and pressure has been worse.
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So sorry that you’re feeling worse
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Hi I am wondering about the Botox therapy, and if your docs have discussed where or what muscles the Botox would be used?
I did also have a Botox intervention after my IJV compression was found. They had injected the parraspinals and trapezius muscles.
I did not notice a change in symptoms , although in my case it had seamed to make neck more unstable. I had other shocking and sharp types of pain in neck during movement. In general more neck fatigue to being upright, that lessened with head support
Is there indication of digastric muscle involvement in the compression area noted ? And if so would that be the target muscle for Botox?
I feel for you @stukke and wish that answers come soon
Do you also have any c1 rotations or anomalies noted
Has Dr fargen or any one suggested a c1 shave?
Also wondering if you have tried “chi kung “breathing exercises?
This has been one of the things I can due to put myself at ease at times,
It does help with my anxiety and whole body tension when I feel helpless.
Praying for your veins to open up and flow, for your symptoms to resolve.
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Mekan, I had botox in my traps and part of my neck about 4 years ago. I didn’t notice much benefit. The neurologist that was doing the procedure felt that I might need it closer to my jugular but didn’t feel comfortable doing it. She referred me to another doctor. I waited six months to see him and he said he didn’t feel that there was anything wrong with me. I still think Botox might be worth checking into. When I had a large lipoma removed from the back of my skull the plastic surgeon noticed my muscle tightness even while under sedation and said I would be a good candidate for Botox. Dr. Fargen also said he noticed on my imaging that the SCM and carotid artery are compressing the jugular. I definitely feel like the SCM is pulling my jaw out of whack and keeps things tight all the way down to my shoulder.
I haven’t had anyone mention any C1 anomalies or suggest a shave. I don’t know if that is something Dr. Hepworth or Dr. Fargen do.
I’ll look into chi kung. Thanks!
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@stuuke - Very unfortunate that the procedure Dr. Fargen did has stirred up your symptoms. You have found the solution that many others have resorted to…rest…when all else fails. I sure hope you get some solid answers soon so real progress can be made toward your recovery.
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Here is one exercise that I like
Just remember to listen to your body and go at your own pace should you decide to do any exercise
Wishing you the best
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Still no word back from Dr. Fargen on my followup questions.
How does everyone feel about treating tendons? I’ve often felt my tendons or muscles are the causing factor for my issues. Dr. Hutcheson was the chiropractor at Caring Medical when I was treated there and it looks like he’s out on his own now. I did have a much better impression of Dr. Hutcheson than the rest of Caring Medical.
I always say, “nothing ventured, nothing gained.” However, this just looks like a very aggressive form of dry needling to me. I don’t understand how it could be helpful except that it’s irritation in our bodies that causes them to try to heal so perhaps irritating the tendons gets the body to “shore them up”.
You’ve been through a lot of testing & treatments that haven’t been wholly successful in helping you so perhaps this is something to consider. My caveat is that some time ago, I saw a video w/ Dr. Hutcheson being interviewed by Dr. Hauser. Dr. Hutcheson supposedly had/has ES, & he was singing the praises of prolotherapy for curing his ES symptoms so he didn’t need surgery. To me, this gives less credibility to Dr. Hutcheson’s claim that he can cure muscle tightness by working on the tendons because of the growing number of members on this forum who spent thousands of dollars on prolotherapy & got no relief from ES symptoms. I’m not trying to dissuade you, but you should do some research to see how effective this really is before jumping in with both feet. Have any studies been written up? Is there someone you could contact who has a success story?
I expect you’re pretty frustrated by not hearing back from Dr. Fargen yet. Be a squeaky wheel & keep after his office until you get the attention & answers you deserve.
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Probably just wishful thinking. They definitely do know how to speak to our symptoms in YouTube videos. I went through the same thing with Dr. Hauser. I had reached a point where I was desperate and felt the only way I’d come out of the pandemic was to be healthy enough to build my business back up. I just haven’t heard anything from Dr. Hepworth or Dr. Fargen that makes me hopeful that they’ll find a solution.
I actually did hear back from Dr. Fargen. He must be reading this board 
He didn’t have an answer for me on how long it takes to stabilize my pressure or what I can do to speed things up. He said if the Pentoxifylline has any effect I should see it within two weeks. He did send me the name of the Botox Neurologist.
“Dr. Yoon-Hee Cha, University of MN. She is a neurologist who offers an evaluation and PT/Botox etc. Dr. Hui is a brilliant person and could provide some useful thoughts.”
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I’m sorry that the answer was mostly a referral to other doctors for their help/opinion. You’ll have traveled the whole of the US including Hawaii by the time you’re done @stuuke! 
It’s hard to comprehend that the cause(s) of your symptoms are so discreet not even the most notable specialists can find them.
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Kooldude was amazing and took the time to look at my scans and reported the following:
I finally had the chance to review your CTV. I am glad to report that your left IJV still compressed by the remnant styloid and C1. Your left IJV is also slight compressed in between SCM and Internal Carotid artery. Similarly, your right IJV is slightly compressed by Styloid and moderately compressed by C1. I do not know why Dr H did not remove it at skull base. It is clear from the imaging that your left IJV is still compressed by the Styloid and C1.
I think you will need to to remove the remaining Styloid to skull base and shave C1 to decompress your left IJV. I also think you will need to do the same in the right side. You can contact Dr.Constantino in NYC who removes both C1 and Styloid. You can still do a revision surgery with him to remove both since Dr H really missed this one.
Here are the images to show you that your both IJVs (blue arrow) are compressed by Styloid (green arrow) and C1 (red arrow). C1 appears to be compressing more on IJV on the right side than the Styloid.
Here is your left IJV (bleu arrow) being compressed by C1 (red arrow) and Styloid remnant (green arrow)
Here is your left IJV (blue arrow) being slightly compressed in between ICA (red arrow) and SCM (green arrow)
Here is your right IJV (bleu arrow) being compressed moderately by C1 (red arrow) and to lesser degree by Styloid remnant (green arrow)
Here is also a bone fragment or calcification (green arrow) behind your vertebral. It is possible it is a remnant of the Lipoma that was removed.
Finally I found some growth in your maxial sinuses (green arrows). I guess you already know about those. It could also indicate inflammation such sinus inflammation
That is all I can find now.
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