Surgery with Mr Hughes London this Friday

Good to know. Was it one or both sides? Many thanks

I saw a post of yours talking about red light therapy with Thor, have you thought of buying a cheap but reliable red light pad to trial?
Also, have you read up about LIPUS, being Low intensity pulsed ultrasound? That can be helpful for post surgery inflammation and breaking up scar tissue formation.

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@jimjammer123 an interesting read, thank you!

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Based on my experience of C1 trims with Mr T (without & then with fusion), I would not worry about doing that, provided it’s clear C1 is a major factor in your JV compression problems.

I have used photobiomodulation since 2017 and do have devices for home use too. D

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Sure, your call. But I found ENt styloid recovery is slower than C1 trim. D

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@jimjammer123 - I would have a chat w/ @TheDude as I think he had his first round of ES surgeries w/ Dr. Heim & then needed revision surgeries out of country to take care of his vascular compression.

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@jimjammer123 I think there might be something else at play here. Based on the 2 slices you posted here, I do not see severe Styloid or C1 compression that would produce all these dilated veins & collaterals (Cyan circles). And if you pay a careful attention to the color of the right IJV (Red arrow) and Collaterals (Cyan circles below C1), you will notice it is brighter than the left IJV which is indicative of in-flow rather than the normal outflow of the IJV. This leads me to believe that there is some kind of Jugular reflux through right IJV and Collaterals possibly caused by central compression or DAVFs (though I can’t prove this with the limited images you shared and need to examine the whole CT to actually determine).

Do you have facial pain, breathlessness sensation, neck/face swelling, tachycardia, temperature changes and blueish lips. Normally the Jugular Veins and Collaterals carry blood from the brain/spinal cord to the heart but in cases where there is central compression/obstruction such as brachiocephalic vein/Vena cava compression, the blood refluxes back to the Jugular vein and back to the head area causing facial pain, breathlessness sensation, neck/face swelling, tachycardia, temperature changes and blueish lips due to deoxygenated blood backing up to the veins of the head and neck. You will also get all the IHH symptoms along with it.

I did talk about it here in different thread.

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I hadn’t surgery with Dr. Heim but I saw him in 2020. That time he had only done a few ES surgeries and very few revision surgeries. Additionally he didn’t recognize vascular ES that time. So I decided for Dr. Samji instead. Unfortunately there the jugular situation didn’t improve either. Eventually Dr. Samji agreed/recommended to see Dr. Hepworth for the right side surgery, where I had my last surgery in Aug '22. Since then things are slowly improving again.

But I wish I found Dr. Heim before my surgeries with the other doctor clowns here in Germany. I think if it wasn’t revisions i would have done the first surgeries with Dr. Heim. Since then Dr. Heim seems to recognize the vascular variant more. He definitely tries to remove the SP as close as possible to the skull base. Unfortunately he has no team of vascular surgeons involved in surgery. But ive learned that the most important is the liberation of jugulars from scar tissue on the outside.

Dr. Heim also only does one side at a time and you will have to stay there in hospital for approximately 5 days. Total cost for self-payment is about 9k Euros as far as I remember.

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Hi

First of all, just want to apologise for the slow reply, I’ve been not functioning very well for the past few days and wanted to be able to respond when I felt a bit perkier.

Your observations are very interesting and if possible I’d like to send you my imaging via google drive so you can get a closer look at what you feel you might be seeing. Would that be ok?

I don’t know if these symptoms would match up, but they are cognitive decline in pretty much all aspects of cognition from verbal fluency, memory recall and processing ability, visual snow, occasional eye floaters (like little moving fairy lights), apathy, ear fullness, occipital neuralgia on left side, pressure sensation at base of skull and behind nose, shortness of breath, resting tremor that gets worse with exertion like practically every other symptom, constant sympathetic overactivation & pulsatile tinnitus. So just a couple of symptoms… :smirk:

Hi @jimjammer123, your symptoms are familiar to me and can be caused by venous congestion. So I suspect couple of things. One is central vein compression (brachiocephalic vein/Vena Cava compression) causing reflux back to the brain via right Jugular Vein & Deep Cervical Veins AKA Collaterals. The other one is DAVF and is usually visible on MR Angiogram (MRA) and DAVFs can arterialize venous system and cause venous hypertension. They also show up as hyperintensities on the veins. Either way these 2 issues can cause a lot of cognitive issues along with with typical IIH symptoms.

I will be glad to look into your Scans (CT, MRI…etc) to see if I can spot the tale tale signs of these 2 issues. for DAVF, it is better if you can get me contrast MRA/MRI. If you have a good upload speed, you can use this site (https://www.dicomlibrary.com/) to upload you images anonymously (it strips all personal info from the images before uploading). It also has a brief (5 min) tutorial on how to quickly share it.

By the way, our friend @DogLover did suffer from central vein compression (left brachiocephalic vein compression) and had similar symptoms. Based her profile, below is her symptoms. You might wanna take a look and compare with yours.

I had a look at the link and it says " Do not upload files with information written on image!" Unfortunately my CTV at the very least has my personal info on the imaging. If it’s ok with you of course, could I possibly get your email via PM and send it via google drive instead?

I’d also like to point out that I know @DogLover personally and for one I can confirm she is in fact a huge dog lover! :slight_smile: But yeah, a funny coincidence that you would reference her story to mine.

I have the following:

  • full body MRI with contrast (9-12 months ago)
  • MRA with contrast of both upper limbs and neck (done about a month ago or so)
  • MRV of head and neck down to C3 (1.5 years ago)
  • CTV of head and neck (2 years ago)
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Little bit confused as from reading your post again you say they strip personal info from imaging, but they say don’t upload imaging with info written on image… :thinking:

For all I know, they strip that info from the images (mine had info in it and is removed when I uploaded it). One way to test that, is to upload the CTV and see it yourself if the info is still on the images before sharing it.

BTW, does the MRA include the head or only limited to upper limbs & neck? For DAVF, it is important to go into the head.

I won’t mind giving my personal email to get the images too

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I think they mean if this info is imprinted to the image itself (can’t be decoupled from the image). Usually, the personal info is kept in separate file or metadata file or something and is combined with the images when using the dicom software (based on my assumption). So I think they can strip that info before uploading.

Thank you, yes I think that would be easiest to get your email so I can send it all via G drive.

Unfortunately I wasn’t able to get an MRA of my head, although I did try. I only just managed to get one of my neck as the scan was only really being done to investigate Venous Thoracic Outlet Syndrome.

Hi, I am seeing Mr Hughes again tmrw. Right side is doing well post op & JV right side is fully open.

Sadly I think left side is not ok and get bad symptoms if tilt head downwards. So just cutting styloid (with C1 trim) May have helped open JV but not fixed left side fully. Am hoping he will agree to help me. As styloid already cut away from skull am hoping this makes things easier.

Queens Sq have suggested a CT neck/head scan with contrast & head movements to help see what is going on now. Will have to see what Mr Hughes thinks tmrw. :crossed_fingers:

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@PatientD - The suggested scan would be very helpful to show if your IJV is being compressed in various head positions. Glad they recommended a dynamic CT. That’s something our members usually have to fight for.

I hope that your appt goes okay & you can get the scan done…great that your right side is healing well, a shame about the left, I hope that Dr Hughes can help. Thinking of you :hugs:

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Thank you :slightly_smiling_face:Mr Hughes agreed to help me today by removing left styloid & calcified ligament. Not looking forward to another operation but hoping this will fix ves issues. D

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@PatientD - is that the styloid that was removed during your cervical fusion? I’m sorry, I’ve lost track. At any rate, I’m so glad Mr. Hughes will help you, but am sorry you’re looking at another surgery. Hopefully you’ll be good as new after the next one! :pray:t3::hugs:

Hi,so at time of fusion right C1 tubicle was trimmed, styloid was left in May. Mr Hughes removed right styloid/ligament August.

Right C1 was trimmed Jan & styloid cut on unplanned basis. Trying to fix left styloid/ligament removal now with Mr Hughes. D