Sorry to hear you had such a long wait…so did I!
Swedish is the top hospital in the state for diagnostics and treatment for stroke and head injury. Mine procedure was delayed 4 hours due to an emergency stroke flown in for my NIR (partner of Kaminsky) had to take. They were lucky to have him. I. just saw it as a different quarantine spot
@JustBreathe Dr Hepworth had me wearing a neck brace for periods of time throughout the day. It made my pain worse, even after experimenting with it quite a bit, and that is when he set me on this new course to have the angiogram. Previously had talked about a muscle block, but that was off the table after the neck brace failed. I’m open to trying physical therapy but it just isn’t something that’s been brought up.
I agree with you despite my frustration. It is fine and good to be open about disagreements and new perspectives especially when it comes to medicine and science but sometimes I feel like I’m stuck in the middle. I’m happy to be part of the learning experience with these issues but also my primary concern is to feel better.
Truth. The “Doctor Wars” comment was definitely hyperbole on my part. These two clearly work together and refer back and forth. And they are clearly both brilliant. I’m disappointed right now, but looking forward to what Dr. Hepworth has to say about this latest development.
Yeah, I obviously couldn’t be upset with them, and I was thankful that this guy had such a great stroke team available to him. It just messed with my nerves to have to wait six hours for the procedure. I was pretty calm while waiting, but kinda crashed into a little crying spell when I finally got down there. Fortunately it didn’t last . . .
Thanks. I have had TMJ issues for years, so I’m already seeing one of the top neck PTs in town. I think all of the neck work is probably part of the reason my symptoms have improved over the past 2.5 years.
So true…there is nothing easy about being the one on the table while medicine advances
I’m assuming Dr. Kaminsky knows that your head would have needed to be in the position where you feel the dizziness most severely if he was checking for vascular compression. If he did the angiography w/ your head in a comfy neutral position, the styloid won’t be compressing the jugular or carotid & obviously blood flow isn’t disrupted. Did he, by chance, move your head into different positions during the test to see if blood flow changed in certain positions?
It may be that your styloids weren’t commented on because no one was looking at them specifically. They are often overlooked when other issues are being investigated.
You’re also right that the vagus nerve could be causing at least some of the trouble. Because it can affect blood pressure levels & low bp can cause dizziness, perhaps that’s the next thing to consider.
I assume he would know that as well. Dr. Hepworth is the one who referred me. I assume he sent over whatever information he needed to know. When I had my preliminary appointment, I brought the ultrasound and the reports, and I told him what Dr. Hepworth said about the blocked jugular. We specifically talked about the possibility of ballooning the jugular. And before the procedure yesterday, he asked me a question about leaky cerebral spinal fluid. I told him that that has never been mentioned, and that the problem we had been discussing was jugular compression. So there’s no question that jugular compression was on the table. But no, he did not move my head at all. It was in a neutral position the entire time.
I have had low blood pressure my entire adult life. But the dizziness I’ve experienced in the past seven months is not the same as the lightheaded feeling that comes from low blood pressure. It’s difficult to describe. At any rate, we will see what Dr. Hepworth has to say in a couple of weeks. It will be interesting!
Bopper, Dr Kaminsky asked me, “has Dr. Hepworth brought up the possibility of a CSF leak?” As well… At my consult. But it has never been mentioned by Dr. Hepworth. It’s really eerie how nearly identical this process has been for us.
Bopper & blossom ~
Often there is physical evidence when a person has a CSF leak besides dizziness/headaches. One of those symptoms is clear fluid dripping from your nose. This is different than the usual nasal mucus you see when you blow your nose or have a cold. I’m not sure of it’s consistency but maybe one of our members who has or has had that symptom will comment on this.
I would question Dr. Hepworth abt the neutral head position during the test when you see him next. Seriously, vascular constriction seems to occur more often when the head is out of neutral position than when it’s in. I’m a bit surprised that Dr. Kaminsky wouldn’t have talked to you about whether you notice worse symptoms in certain head positions & then checked your blood flow w/ your head in those positions. That only makes sense. I am not a doctor though so maybe I don’t fully understand the process.
I agree, and I will definitely talk to him about it. When he first told me about it, there was no discussion about it being positional. They didn’t move my head when they did the ultrasound. So I just assumed that it was just perpetually occluded. I never felt like Dr. Kaminsky took it all that seriously. He didn’t ask me about it, didn’t really have any conversation about it beyond me repeatedly telling him about it.
I was just recently told that the muscle is pressing on my IJV on the side that I had a styloidectomy. The neurologist didn’t know what to do about it. Is the therapy for it something most therapists would be familiar with? Is there something specific I should ask for, or just say I want therapy to relax and lengthen my muscle and they will know what I need? Sorry to ask so many questions, but if I could get this and it works, I might be able to avoid getting a stent and/or surgery on my other side. It appears the muscle is only pushing on the jugular in certain position - not neutral, but flexion and extension, worse with head turning.
Crazy, isn’t it? I’m glad we get to “go through this together”
You will want someone who is familiar with ES, this article i posted recently would be very helpful to give them if they are not:
Typical conservative care would possibly include very gentle soft tissue work and/or dry needling (may or may not be available in your state) to help lengthen and resolve trigger points in the muscles. This is parallel to treatment for Thoracic Outlet Syndrome (TOS) so if you can find a provider with experience there and then add the ES education that would be helpful as well.
I do know of a few people who are looking into surgical thinning of the omohyoid muscle by a vascular surgeon. This is of course a last resort when all other conservative care fails.
Sometimes the process of C1 (the first cervical vertebrae) can be pressing on the jugular as well as the styloid. This can make things a bit more complicated but that process can be shaved down to mitigate this if it is present.
Hope this is helpful! Sending you every good!
Actually, JustBreathe, I WILL take that PT’s name. If it’s somebody who is specifically familiar with ES, it might be worth checking out. Thanks!
Thank you so much! I will try to get the full article. Hopefully I will be able to find someone local who is familiar with this. I already had the styloidectomy and my C1 shaved. The neurologist thought the soft tissue is moving around in my neck due to the empty space caused by the surgery. If by any chance you know anyone in the Phoenix area familiar with this, please let me know, thanks!
I am sorry, do not know anyone personally in the Phoenix area. A great resource to use in finding a PT is on the APTA.org website, click on the “find a PT” link and enter your zip code. I do believe PT’s in AZ can dry needle (and treat TOS) which would likely be listed in the bio of PT’s listed nearest to you (who are APTA members anyways). At least it narrows your search!
I would venture that the more plausible reason for your muscle reaction is related to having to work differently vs. “moving around in your neck” and are overcompensating, especially if you have only had one side addressed. Muscles in our body are very firmly attached and surrounded by fascia, they don’t go moving around unless they are cut on purpose Maybe he was just giving you that answer vs. saying he did not know. That can be very hard for doctors to admit.
Best of luck to you!
Thank you so very much! I saw that the PT place I went to for balance issues treats TOS and they do dry needling. Hopefully they will be able to help me. Again, thank you so much for sharing your knowledge!
So spaced out and a spaced draining feeling in my brain and pulling on the eyes. I feel like I have a plug in the base of my neck cutting off flow to my brain and I’m about to go in to a woozy coma. So hard to describe.
I intermittently leak clear fluid from my nose. I’ve never had it tested for csf. It started leaking around 8 months after symptom onset.
Did either of you have a Doppler ultrasound with flow volume calculation?