@KoolDude, thanks a lot for sharing this update with us. Double surgery in the same spot just two days apart must have been no fun, but I’m glad to hear you got top notch service, got it done properly and recovery is in progress. Take it easy, healing takes time, but I keep my fingers crossed that it has done the trick!! 
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@Kooldude Just two trips across the pond with our conditions alone is challenging much less 2 surgeries. Good that he was conservative and so sorry he had to go back in. It would seem you (we) could feel worse from post-surgical inflammation as you know. As things settle down in a bit, hoping IJV finds the new, roomier spot ideally suited for its job. Crossing fingers and toes for cessation of suffering and successful brain draining.
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Hey kooldude, how are you feeling? So happy that you are on your recovery journey - be well. Hoping for speedy resolutions of your symptoms
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Oh wow, two back to back surgeries is a lot in such a short period of time. Good thing you had the CTV before traveling home! I hope the typical surgery related swelling and inflammation diminishes and that you do begin to appreciate symptom alleviation. Wishing you all the best as you recover.
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I’ll be praying for your recovery to move along at an expedited pace & for your IJV to open fully & allow the blood flow to return to normal ASAP. Thank you for your update. We were definitely concerned about you! Glad you’re safely home. 
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Thank you for the update, have been thinking of you & you’re in my prayers…that sounds really tough, but sounds like Mr Timothy is a wise surgeon.
The flight home must’ve been rough! Hope that you’re able to rest at home now, praying that the surgery works for you & you soon feel the benefits
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I am so sorry to hear things did not go smoothly for you with Mr Timothy. Hoping you are able to recover. D
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I hope you have a quick and successful recovery.
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Hi All, I am almost 2 weeks post-op and recovery from the operation is going fine but did not notice much improvement from my symptoms such as severe hearing loss bilaterally and ear pressure (constantly popping ears as if I was in an airplane), tinnitus, after images, halos around lights, mild visual snow, facial and head pressure, facial and jaw pain (feel as though my cheeks are being pulled down, mostly towards the end of the day), Insomnia has not drastically improved either (still waking up a lot in the night, not going back to it quick enough - AVG sleep 5 - 6 hours). I also lately notice that I move a lot in my sleep. I wonder if some of my symptoms are caused by occult CSF leak as I have a lot of perineural cysts on my cervical and thoracic spine on top of the normal IIH ones though I do not have orthostatic headache. I was hopping to see some of these go but time will tell. I also can’t comment on the second surgery until the CTV is done in 2 months or so.
I think some of you might be wondering why I chose Dr. Timothy. Well in addition to seeing PatientD’s experience with him and the minimal invasiveness (2.5 CM incisions) of his surgery, I did see some promising images of jugular decompression he did in his website along with a video that attracted me to his method. So the combination of PatientD’s experience with him and the surgery Videos and Image did convince to go with him.
Here is an image of pre & post jugular vein decompression. You can see with Styloid present, the IJV looks decompressed entirely (no need to remove the styloid). Of course this patient had additional fusion surgery as well.
This image can be found at his site (Jake Timothy | Pictures). It is the 3rd image in the pictures tab.
There is also a surgery video which has attracted me since it shows that he, not only, removes the bone but also does remove fascia in the video. Although he does not remove digastric muscle or move nerves or artery as Dr. Constantino & Dr. Lo & Tobias do.
This video is the 2nd video on videos tab at (Jake Timothy | Videos). You can watch the surgery and at the end it appears that he decompressed the jugular vein in its entirety.
Although Dr. Timothy is good doctor who is really careful and patient safety is his first priority, I think now that I have seen what Dr. Lo and Dr. Tobias do to decompress the jugular vein, I am thinking I would have been a good candidate. The reason is I have digastric muscle and occipital artery compressing my jugular vein on top of the C1. It is clear now that IJV compression is complex and is not only the result of C1 & Styloid only. Perhaps, why many of us do not improve after surgery is because of these other tissue compressions (accessory nerve, Occipital artery, digastric muscle & fascia).
Here is my 3D left IJV. Digastric muscle (blue arrow) is compressing Occipital artery (cyan arrow) on IJV. Green arrow points to C1.
Here is another one that shows the Occipital artery (cyan arrow) clearly.
Will continue to update as things progress but praying for a miracle in terms of symptom relief.
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Would a short course of steroids provide a datapoint as to whether you’re not experiencing relief due to inflammation? (Higher dose steroids definitely interfere with my sleep… So there’s that to consider, of course, as well).
I have been curious all along, if this condition would be helped with a low-dose steroid as they use for autoimmune conditions.
With the digastric muscle, don’t know if anyone has tried Botox again as a datapoint and/or a long-term treatment.
Regarding insomnia, I have been on low-dose Elavil for years (25 mg)… It has been an easy, no side effect drug that I think I’ve received benefit from.
With moving a lot during sleep, if not taking, magnesium in higher doses could make a positive impact. I prefer Natural Calm and will sip during the day, with a larger dose towards bed time. Also if not contraindicated, slow release iron… which I take if I know I’ve not eaten ‘well’.
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@KoolDude I hope the current digastric muscle-related compression is just because of the inflammation (I am pretty sure the surgeon had to move it aside to reach the C1, so it got some degree of injury/irritation), but you might want to look into stretching/strengthening of this muscle.
I’d guess your hyoid bone “by default” (in the relaxed position) might be sitting “too high” due to the imbalance of the muscles and loss of neck curvature, causing the anterior part of the neck to shorten and provide less space for the structures, as well as making the flexors taking more space too (“military neck”). Consequently, the other hyoid-attached muscles are unable to sufficiently pull the hyoid bone down in its relaxed position (because those muscles like sternohyoid, omohyoid can only pull so much, so if the distance between the hyoid bone and the sternum is decreased due to the military neck, the sternohyoid muscle simply reaches its maximum contraction and cannot pull the hyoid bone any more down, leaving the hyoid sitting “too high”).
Thus, I speculate, the posterior belly of dig.muscle might take up as much space as it is available because it’s simply contracting due to the lack of pulling force from the antagonist muscles. Or it also might be some sort of atrophy affecting the dig.muscle.
For me it took a long time to retrain this apparatus (long story short - while I never loudly mentioned that, I used to have slightly, occasionally clicking hyoid/thyroid cartilage too, which I eventually managed to fix, hopefully for good. I mostly didn’t want to talk about it too much while there was one forum member in the UK suffering from similar hyoid clicking, and there were multiple discussions going around it mostly related to the surgical treatment. I didn’t want to discourage him from seeing surgeons by pushing him to explore the non-surgical methods, and also wasn’t sure myself of the muscular method retraining effectiveness before I have seen any significant results by myself).
What I noticed in my own case, I used to have very sharp-looking angle between the mandible and the neck, just under the chin. I should say, I liked it because I assumed that the alternative is so called double chin.
What I was missing, though, that it means the hyoid isn’t able to “drop” freely when relaxed, and after retraining, I realised the natural, relaxed state of the jaw and the hyoid bone is very different from what I thought was the normal one. There is some more smooth angle now which visually might look less “perfect” (no double chin, however), but functionally it feels much more natural and relaxed, as it has more room to move freely without friction into surrounding tissue.
So I’d encourage you to check these options too before pursuing digastric muscle resection or other surgical solutions.
Below I’ll add a chapter from the book mentioning some technique to stretch the digastric muscle.
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@vdm according to Dr. T, he just pushes aside the IJV on retractor in order to shave the C1 and does not reach the digastric muscle since it is behind the IJV. I think this is the limitation of the minimally invasive technique he uses. If you watched the video you see what I mean. He does not see beyond C1 that much. My incision is way smaller than the ones I saw here by Dr C and Dr Lo & Tobias.
Well this might be the case but I was hoping if the C1 is trimmed enough at least I would have gotten partial expansion of the IJV on the space created.
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You are right, just watched - it seems the Digastricus is too far from any tool.
Btw did he went through with you after the surgery what exactly he had done? I remember with Dr Hackman, he told me quite a lot about which structures were moved, cut through, released or sewn back together during post-op consultation. I found them very interesting at that time though now I can barely remember them.
It might happen during the soft tissue remodelling phase. I’d say if you can do your best to prevent “bad” excessive scar tissue from forming, eventually it might make more space as the swelling goes down.
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Hey @KoolDude,
Somehow I missed this thread completely. Must have been very busy weeks for you. I’m sorry for all the difficulties you had to go through again. Best wishes for a quick recovery. Hopefully your symptoms will improve over the next weeks to your satisfaction. You would definitely deserve that. Thinking of you and sending positive vibes. 
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Praying too that once the swelling has gone down & everything settles that symptoms improve
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Did Dr. Timothy tell you he noted the IJV open up after the C-1 shave? I know Dr. Hepworth tells his patients, post op, when he sees this happen in the course of his procedures.
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Yes he did. He said he saw the jugular vein open up but we will see if that is the case.
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I’m glad he saw it open. I expect it’s being re-smooshed by swelling at the moment. As you know that’s somewhat common post op. I hope/pray, as you are, that once the swelling is gone it will spring back open & the blood will flow with proper gusto through the vein.
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