I will see if ballooning first works even temporarily and if I see some relief from ballooning…then I will think about options. Obviously I prefer surgery (clipping of digastric muscle and relocation of occipital artery) over the stent as the complications from the stent is not only being crashed but clotting risk as well and as mentioned stent migration since the neck is highly mobile.
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I did see few folks use it but at best it is temporary fix and does not last long. I really prefer something permanent.
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I do agree with you although I prefer surgery, I have had 2 surgeries on left side of my neck and I am afraid a third surgery might cause a lot of scar tissue and my muscles might not work very well since they will have been dissected multiple times. As of now, I feel tightness from the previous 2 surgeries. Will explore my options but stenting is my last very last option. My vascular doctor is big on stents.
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@KoolDude - I’m also not a proponent of stents in highly mobile areas for the reasons @PatientD & you mentioned.
I think your neck muscles would regenerate perhaps w/ the help of PT if you had another surgery. Existing scar tissue can be removed during surgery, & scar tissue can be reduced using massage as the incision heals. I believe laser therapy is also being used now to help reduce scar tissue. I know this is a non-issue at the moment since you’re awaiting the ballooning & weighing the results from that prior to making the decision about the next step.
The biggest culprit in my case is Occipital artery, second is digastric muscle. I think the surgeon will need to remove some digastric muscle to make a space for the occipital artery relocation if I were to go through surgery again. I have a few more images (the 4 axial images are slices to show how the occipital artery dissects the IJV as it moves across). It is basically choking my left IJV below (cyan arrow points Occipital arrow and red digastric muscle). The 3D images show the degree of strangulation better.
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The bottom 3D picture is actually a bit scary to look at! The IJV looks like it has a rubber band around it!!
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On improving scar tissue not just on surface but up to 8cm inside I highly recommend finding a Vodder trained lymphatic therapist who has a deep oscillation machine (in Europe Hivamat brand). It is a very gentle treatment as just stroking of skin involved with different frequencies but highly effective for internal & external scar tissue. Plus inflammation/lymph fluid swelling post surgeries. Vodder school in Canada is in Vancouver & they have tool on website to find therapists by country. In Germany it’s used a lot post op. In UK used in hospice settings & fir cancer patients after lymph node removal causes swelling. Appreciate we have to be careful about our necks, but this treatment in hands of Vodder trained expert is safe. Some may not know you can also use it on skull (eg. it helps horses). Worth trying to see if helps ease scar tissue concerns? Take care. D
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Thank you, @PatientD. You’ve reminded us of this device & therapy often & yet I don’t think to refer our members to it or to your posts. I really appreciate that you continue to mention about the Vodder therapists & therapy.
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It has really helped me. I am reducing frequency now (at month 4 to 5) but my neck is still healing & it still helps. D
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Yeah definitely. It is chocking it
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Hi, you sound similar to me , I’ve had multiple decompressions with some limited success , now have one jugular fully re occluded and my dominant still stenosed over the c1 section , but over all it’s opened up better either side of the c1
My last surgery was a c1 resection also
All that’s left is for me to have ballooning and a stent has been mentioned
May I ask did you have your angioplasty?
How did it all go ?
I hope your a moving in the right direction
Kind regards
Phil
I have not had the venoplasty yet as it is being scheduled with the doctor. I will share once I go through it. Can I ask you what your symptoms are? I am wondering if you are suffering from the same symptoms as mine. How was the CSF leak diagnosed? Specially the CSF Fistula which is hard to diagnose.
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Sorry, I don’t think I replied
Well, I had classic high-pressure symptoms which changed once my jugulars were slowly decompressed, although they have recompressed due to scar tissue for the most part
So then went into low pressure symptoms
In my case, it wasn’t so much pain, but more neurological, almost dementia like symptoms the longer I’m upright
I’m very lucky that the Interventional radiologist Dr Parker here in Australia, reviewed my imaging and understood that not likelihood my jugular compression caused high-pressure at sometime which then possibly caused the fistula
So the first I had was an MRI myleogram, which at the time The best of finding fistulas
And he found it
I will also add I had a cranial leak which was positive to a pledget test
So that help build my possible eitology , history and clinical Picture
I’ve just had surgery for my fistula
And I’m awaiting venoplasty Next week
Have you had yours yet?
Hope you’re going okay
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what a long drawn out process for you @Philcole , I hope you recover okay from the fistula surgery and the venoplasty next week…
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Thanks , yes it is a long road but we have to keep walking I think
Did you have angioplasty/ venoplasty / stent?
If so how are you doing?
I’m particularly interested in any feedback re stenting
Really appreciate it
P
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I was very lucky and having my styloids removed was enough to decompress the IJVs, so I didn’t need any of the other procedures. The surgeon who removed my styloids said that he didn’t recommend stenting as it can cause pain…but I guess everyone’s situation is different, and quality of life can affect the decision…
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Hi Philcole, glad you had the surgery on the fistula. I am just wondering, were there are signs on your MRIs showing CSF leak? You said you had cranial leak? where did you have it? Does CSF come out of your nose or ears? Secondly if you can elaborate the dementia like symptoms that you get while being upright., I would love it hear it. Do you have any facial or ear symptoms?
Was it an invasive MRI myleogram or non-invasive one? I think I am suffering from CSF leak in my ears which have caused me to have bilateral snhl hearing loss which getting worse. I get muffled/ear fullness all the time and I feel the need to pop the ears. sometimes they feel wet but I do not see any CSF coming of it.
Nope, it is going to be done in April. Will let you know how it goes. hoping for a miracle here.
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I’m so sorry to read that your symptoms are getting worse, @KoolDude. 
I really hope the April testing produces tangible evidence of what’s going on so you can FINALLY get treatment that will resolve your symptoms or dramatically reduce them. 
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Hoping for a miracle for you too @KoolDude 
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