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.
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.
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.
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!
@blossom@Bopper I feel for you both. I am going through the similar and have felt chronically unwell for 2.5 years.
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?
@Natty04, wow – I know exactly what you mean about the spaced out feeling. It really is hard to describe. I had an ultrasound, but I don’t know if it was Doppler. HI think it did calculate flow volume, though. He gave me numbers. On the left side the number was “zero.”
I’m no doctor, but the clear fluid leak sounds suspiciously like a CSF leak to me. I would definitely try to find someone to check into that!
Yes it’s awful and when It gets severe I always have a cola to try and give me more energy.
I feel like my heart is heavy when this happens like I’m slipping away. But there is this sucking trapped air in my head but it feels like it’s imploding and when I move around I get more spacey. Also my eyes pulse sometimes upon exertion and when I stand at times I get this rise in pressure up to my neck and everything goes severely restricted then I hear the whooshing and it’s like my whole blood system in my torso, neck and head pulse. So so hard to describe but I try my best.
I leak intermittently so it’s really hard to test.
Did they give you the readings. That’s odd to say zero. Normally when you have compression you have high volume calculations like a hose being stood on with two much water trying to push through
The zero was because he said the jugular was completely compressed, with no flow whatsoever. But the cerebral angiography indicated otherwise. So who knows?
I think there are ways to test your brain for CSF leakage. I don’t think they have to test the fluid. I know when I had my angiography, he asked me as CSF leak. So I think it’s something they are looking at there. I know Dr. Hepworth here in Denver specializes in CSF leaks.
Ah ok. I know that Dr Hepworth in the US says that anything above 50cm/min of flow is pathalogical.
Do you know what your jugular diameters go down to at the area of compression?
Thanks for this info. They wanted to do nuclear pledglet test but it’s only 4 hours so as I leak intermittently would be hard to see. They say they can see a tracer in the bladder if a cranial leak is present
I don’t know anything about the jugular diameters. But since the latest test showed no compression, I guess there’s no compression to look at right now! I’m glad you are talking to someone about ways to figure out your CSF situation!
Hi @Natty04 I did have an ultrasound and my flow was 160 or so on both sides. Only having pain on my right side though. My symptoms are more just severe pain all the time and dizziness and pulsatile tinnitus when exerting myself, I don’t know that I have the spacey feeling. Not sure where you are in the world but Dr Hepworth also specializes in CSF leaks I believe. Good luck and I hope you find some answers soon!
I would agree with justbreath. Our bodies going into protection modes and muscles adapt. I have been getting some soft tissue massage since about 8 weeks after surgery. You could have some bands of scar tissue in there that needs to get broken up and stretched.I know I have some of that going on. I would also look for Occupational Therapists as well as regular PT’s. Sometimes OT’s have a higher level of knowledge when you get into body movement.