I’ve seen Mr Hughes and although he didn’t quote any definitive markers to me for diagnosing ES, he too said I do not have ES.
Nicky
I’m sorry you’re hitting a dead end regarding someone to help w/ your styloids, @NRuflove. It’s a mystery to me why the doctors you’ve seen aren’t in agreement w/ what we perceive to be your surgically fixable problems. I think @KoolDude’s suggestion to try to get in w/ Mr. Higgins for a consult is a good idea. Perhaps he will be able to give Mr. Axon reasons to reconsider surgery for you. I’ll pray for you to find the proper medical channels to help you resolve your symptoms ASAP!
Hi Nicky,
Is the swallowing issue more on the right than left side? would you say, you feel the lump in the throat on the right side?
Did you ever have examination in your throat with laryngoscope?
Yes, back in 2018, following a CT head scan that showed I had asymmetrical tonsils, I had all sorts of tube type investigations. They then decided I needed a tonsillectomy which I had in March 2019. It was absolute agony and has never been the same since.
That’s so rough for you 
It’s really tough, @NRuflove, when something that’s supposed to help us feel better does the opposite. Hopefully finding the right doctor will turn that around for you. You’re definitely in a difficult place right now. I’ll continue praying for you!
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Hi Nicky,
I have looked into the CT extensively, I must say that you indeed have abnormal venous sinuses in your brain as was found in your catheter angiogram/venogram. You practically have a drainage pattern which is difficulty to pin down where, if any, stenosis could be since the falcine sinuses drain from the superior sagittal sinus (SSS) down to the neck’s vertebral venous plexus (VVP) & deep cervical veins bypassing the transverse sinuses(TSs). These are network of small veins & sinuses and spread around the base of the neck to join deep cervical vein for drainage. So I could not find anything that will point to narrowing or blockage along their path with the limited images I have here but I am not ruling it out since you have high pressure numbers and symptoms of IIH. Since this network of veins are typically smaller than IJVs in size, they could not easily be identified. Perhaps, try lumber puncture to see if you feel better that might be another avenue for detecting an occult IIH. Or someone needs to closely observe/chase the falcine drainage all the way to the chest which is not available with this particular CT since the cutoff is above the chest. Chest veins could also cause IIH if they are narrowed (sometimes called central compression). So it is one path that you might want to pursue as well.
As far as the throat and swallowing symptoms, I find something that I suspect might contribute to your lump in the throat sensation although this can be caused by a number of other things as well. I say you need to investigate it further. I find calcified/sclerosis arytenoid cartilage which can be caused by a number of diseases and could also be normal benign calcification. So you need to investigate this further to establish if that is the case. Sometime Styloids messing with GPN nerve can also cause this as is the case with classic ES. So if calcified arytenoid are not to blame, then Styloids could be the culprit here.
Here are the CT scans: Axial, Coronal and 3D rendering showing the calcification/sclerosis of the arytenoid (Cyan arrow) - Further investigation needed to establish if it is the cause of the throat symptoms.
Here are the falcine sinuses that drain your brain since both transverse sinuses (TS) are hypoplastic and are barely draining it. Just for illustrative purposes here since I could not find anything that will point to narrowing on it. See the hypoplastic TSs (Yellow arrows) and falcine sinuses (Cyan arrow).
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@KoolDude - I still say you could make a great living doing this for people! 
We’re beyond blessed to have your help on our forum. There are no words for the gratitude I feel.
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I am very grateful for your detailed observations.
I’m having an awful start to the day today so will respond later when I’m functioning a little better.
Nicky
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Hi @KoolDude
I’m grateful you’ve been able to explain what my “abnormal venous anatomy” actually is. I did read the catheter venogram report and tried to work it out but these things are taking me time to learn. I’m also hopeful that your comment about my calcified/sclerosis arytenoid cartilage may be very useful.
So, this week I’ve had my eyes checked, as recommended by Mr Axon, and there is no sign of paps so neither he or a neurologist is interested in my high pressure readings (apparently).
I also had a consultation yesterday (18/08/23) with Mr Laurence Watkins – Neurosurgeon @ Queens Square - to discuss my abnormal venous anatomy. He had reviewed my images (past and present). He didn’t think my pressure readings were high and just spoke about my venous anatomy as ‘a little different’. All I can say, is that I feel he humoured me for a while before suggesting an MRI of my head/neck as I hadn’t had one since 2018. (There goes another £1,665) . If that shows anything of note, he would then look to do 24 hour ICP monitoring and that maybe my GP could refer me to his NHS practice as that would be a quite pricey. I’ve a better chance of being kicked by a snake! My GP is still only seeing emergencies due to staff shortage and doesn’t classify my request for a referral as urgent.
In summary, I’ve seen everyone I can see and nobody seems to understand. I’m grateful that @Kooldude has maybe found a reason for my throat issues and I will see a local ENT to ask about this. However, two ENT’s have said I do not have ES and a respected neurosurgeon isn’t really interested in my abnormal venous anatomy or high pressure readings, and, I believe, is only going to refer me to a headache specialist when the MRI doesn’t show anything.
If it wasn’t for people like KoolDude and others on forums like these, I’d still be flailing around playing with a broken medical system.
Yours help is very much appreciated.
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I’m so sorry that you’ve not got anywhere with Mr Watkins too, & that your GP won’t help, it’s so rubbish…I hope that maybe you’ll get some help for the arytenoid cartilage & that might improve some symptoms for you. Let us know how you get on with your local ENT (if you can get a referral), thinking of you
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Hi Nicky,
I am not a doctor but there are 2 types of pressure readings. One is the pressure gradient (pressure diffrences) which indicates stenosis or narrowing between 2 points or areas in your venous system. For example, your Brain-to-hear pressure gradient (BHG) is 5 mm HG ( from superior sagittal sinus (SS) to right atrium(RA) ) using SS as the brain baseline and Right Atrium as heart baseline ( 23 - 18 = 5 ). So while I agree that the pressure difference (gradient) is not between 8 - 10 mm HG which is the baseline for diagnosing high venous pressure gradient but still the pressure readings (NOT the gradient) are high across all your veins from RA to SS in your case. Whether that is due to your venous abnormality, I do not know but I do know that my RA pressure reading , for example is 3 mm HG and my SS is 10 mm HG so my brain-to-heart pressure gradient (BHG) is 7 mm HG which is close to the cut off (8 to10 mm HG). So while my pressure readings ( RA = 3, & SS = 10) are lower than yours (RA = 18, & SS=23), my BHG (7 vs 5 ) is higher than yours although mine is also considered low because my pressure gradient is not between 8 to 10 mm HG. That, however, does not mean you do not have an occult raised intercranial pressure. There are number of studies that show that without papilledema or Lumber Puncture less than 25 CM H2O or having venous pressure gradient less than ( 8 - 10) do not mean you do not suffer from IIH. As matter of fact, they have a name for it - Idiopathic intracranial hypertension without papilledema (IIHWOP). You can read it up here (Idiopathic Intracranial Hypertension Without Papilledema (IIHWOP) in Chronic Refractory Headache - PMC). So there are other neuroimaging signs that can tell us whether you have occult raised ICP. The signs are, partial empty sella, Dilated Optic Nerve Sheath, Optic Nerve Tortuosity and Flattening of the posterior aspect of the globe. I was able to find partial empty sella on your CT which indicates that you might have IIHWOP. It is hard to find the Optic nerve related signs on CT so if you have an MRI, it might show the other optic related signs I listed above. So do not despair. The fact that your pressure readings are deemed normal does not preclude your from pursuing other ways of proving it so that you can get it treated.
Your pressure readings
SS - 23
Confluence 21
Torcular 23
****L Tran/Sig ****
L Mid Transverse sinus 24
L Sigmoid sinus 24
L Jugular bulb 20
L Mid Cervical Jugular 24
L Brachiocephalic vein 22
Jugular bulb 20
R Lower cervical Jugular 18
SVC 19
RA 18
IVC 17
Although CT is not as clear as MRI, I see partial empty Sella (red arrow) which is a sign of raised intercranial pressure. What this means, is that your raised CSF fluid is crushing the Sella. The CSF fluid is dark on CT and the grayish concave shape at bottom is the sella turcica crushed by the dark CSF fluid. Need an MRI to see the other IIH signs.
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@NRuflove i would like to know if you feel any of the following symptoms along with your other symptoms.
Cough
Face or neck swelling.
Feeling of fullness in your upper body.
Swelling in your arms and hands.
Shortness of breath
feeling of fullness in the head or ears.
Hoarseness
Blueish Skin
Chest pain
Thank you again @KoolDude . Your message has given me a good understanding of the difference between the pressure and the gradients. I’ve also read the link to the IIHWOP study which certainly gives me hope that I will find help.
I have a head/neck MRI scheduled in a few weeks so will ensure I have this ready when I have my follow-up consultation with Mr Watkins.
Thanks also for the marked-up partially empty sella screenshots. I have looked back at an MRI image from 2016 (undertaken due to almost daily headaches) and I believe it looks as though I had a partially empty sella then – I’ll attach screensheets.
For info, following this scan back in 2016, an incidental finding was a small right side acoustic neuroma. I’ve subsequently had gamma knife treatment which has stopped growth and is reviewed every two years. Therefore, I’ve had my fair share of head MRI’s since 2016 so there’s been plenty of opportunity for any other findings to have been reported.
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@KoolDude in response to your questions:
Cough - No
Face or neck swelling - No
Feeling of fullness in your upper body - No
Swelling in your arms and hands – Yes. I’ve had a lot of swelling of my hands and feet for 15 years. Discussed with GP 15 years ago (when I was fit and relatively healthy) and was told it was perfectly okay. I’m now told its because I’m unfit and overweight.
Shortness of breath – Yes, sometimes but have put it down to now being so unfit.
Feeling of fullness in the head or ears – No. I feel pressure in the head but not fullness.
Hoarseness – Yes. Terribly so and an inability to raise my voice.
Blueish Skin – No.
Chest pain – Yes. Have been told my chest pain is caused by a medium size hiatus hernia that I’ve had for about 10 years (again, from when I was fit and relatively healthy). I’m not a doctor but don’t believe this is the case as I can feel my hernia when I bend etc. and the chest pain I have is a very sharp stabbing that takes my breath away.
Can you please include the chest as well? or at least the upper part of the chest where the major veins & arteries are visible. That is the only part that is not included in your current CT so we do not know if there is compression on your Brachiocephalic veins & Vena Cava which could explain the high pressure readings.
Partial empty sella (PE) is better viewed on T1Saggital MRI with typical 60 slices series. I see the one you had on 2016 had only limited 25 slices which might not capture the whole pituitary gland as the slices are limited. It appears the CT scan had more slices and shows that the PE is more prominent now than it was 2016. Don’t know whether it is due to the limited 25 slices T1 Sagittal or PE has gotten worse a bit.
The reason why I asked these questions is because I suspect that there may be compression of the Vena Cava which can induce those symptoms. What made me suspicious are 2 things;
-
The high pressure reading from the chest to all the way in the brain can NOT be explained the venous abnormality in brain alone. I also do not see any meaningful compression/stenosis on your IJVs or the falcine sinus to explain high pressure reading. So a compression on the major veins such as brachiocephalic veins or Vena Cava on the chest could explain the cascaded high pressure reading all the way to the brain if indeed it exists.
-
Secondly, your swallowing difficulties could also be explained by it as well hence my list of questions to you. So the fact that you at least have close to half of the symptoms of Superior Vena Cava Syndrome (Vena Cava compression by a Cyst/tumor…etc) gives me a good clue. Additionally, this condition gets worse on lying down and bending forward which you also have confirmed to have.
Not a doctor either but I agree with you on this. I have Hiatal Hernia and I never had sharp stabbing pain when I bend forward. So this even makes me more suspicious on occult chest pathology that could be compressing your major veins or arteries. So we need to rule out any chest pathology so I would say include Ches MRI or CT. If nothing can be found on the chest, then you can pursue other causes.
Finally, I agree with Dr Axon. your pressure readings are high although your pressure gradients are not high in any 2 points. Something other than venous abnormality in the brain should explain this. Unless you also have venous abnormalities in the IJV, Brachiocephalic veins and Vena Cava, their pressure readings should have been lower than reported. I can’t see any abnormality in your IJVs and Brachiocephalic veins and Vena Cava remain to be seen.
Here are the symptoms of Superior vena cava syndrome (SVCS) according to webmd : Superior Vena Cava Syndrome
Superior Vena Cava Syndrome
Written by Paul Frysh
Medically Reviewed by Sabrina Felson, MD on November 11, 2022
Superior vena cava syndrome (SVCS) is when something – usually a cancerous tumor – blocks or pinches the superior vena cava, a major vein that carries blood from your chest, neck, and head to your heart.
Symptoms
One sign of superior vena cava syndrome is swelling in your face, arms, neck, head, or upper body. It may get worse when you bend forward or lie down. You might start to cough or have trouble breathing.
Less common symptoms include:
- Trouble swallowing
- Coughing up blood
- Fluid buildup in arms
- Chest pain
- Bluish skin (from lack of oxygen)
- Scratchy voice and other vocal changes
- Horner’s syndrome: A smaller pupil, sagging eyelid, and little or no sweat on one side of your face
Source : Superior Vena Cava Syndrome.
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Another piece of evidence that something is not right around left Brachiocephalic Vein (BC) is that I see very enlarged left Anterior Jugular Vein (AJV) ( Red arrow) and left Deep Cervical Vein (DCV) (light blue arrow). These veins are dilated 3 or 4 times their normal size so something is blocking their blood flow. These Veins ultimately drain into left Brachiocephalic vein and I suspect their dilation has to do with some narrowing/blockage/compression…etc of the left Brachiocephalic Vein. So no wonder your complaints/symptoms are more on the left side than right side. Something is up on BC vein or Vena Cava since BC drains into Vena Cava. Another reason to have your chest Veins imaged.
Here is the 3D version of the above Axial image. Dilated AJV (Red arrow) and Dilated DCV (Light blue arrow)
Here is diagram from the internet. This is to show you the Anterior Jugular Vein (AJV) drainage pattern (AJV drains into left External Jugular Vein which in turn drains into left Subclavian Vein which drains into BC Vein) see the the light blue arrows for drainage pattern.
Here is a diagram from the internet. This is to show you the Deep Cervical Vein (DCV) drainage pattern (DCV drains into left Vertebral Vein which in turn drains into left Subclavian Vein which drains into left BC Vein) see the the light blue arrows for drainage pattern.
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@NRuflove I just remembered that since they measured left Brachiocephalic vein (BC) and Vena Cava (VC) pressures in the Catheter Angiogram/Venogram, they should have images similar to mine below ( I do have a dynamic compression on BC by the Collarbone when my arms are not raised). If you can get me a similar sequence of your recent Angiogram in the venous phase, we can examine the BC & VC and see if we can get any clues of partial narrowing or blockage or compression…etc. In the absence of CTV of the chest which would have been the best, may be the angiogram can give us clues. Note that VC in the my image below is not clearly visible because it is behind the lung
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