Made it to California - Surgery on Monday -- and Follow up

I hope your appointment goes really well, Tim. Please let us know what you find out.

I’m sorry very happy for you.

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Dude,

Glad you are healing well and making good progress. My massage therapist started working on the scar tissue about 4 weeks out…very gently. About 6-8 weeks out, she had me lie on my back with head on pillow slightly off the table and did some slow stretches on the neck. I was a bit nervous to try this but it actually helped relieve alot of neck tension. Osteopaths are great at this kind of work!

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How is your recovery going, @TheDude ? 6 weeks mark I guess. Hope you are doing well!

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Hi vdm,
yes indeed it was 6 weeks ago. On the operated side, the muscles are still very tense and only slowly let up a little. The intracranial pressure symptoms are still greatly improved. I am now waiting for my osteopath to have time for me and am trying to get an inpatient neurological / orthopedic rehabilitation, which will start in the next few weeks. Until then, I’ll go swimming myself, which is slowly becoming possible again by easing the Covid measures. Swimming works pretty well again. I also take regular breaks in between. I think my body is currently working on coping with the changed tension pattern. Overall, however, it feels right and improved.

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That’s good news TheDude, very pleased that you’re seeing improvements, it’s been a long journey!

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Really glad to hear the things are improving and I hope you will sail through that rehab program. At least the plan is clear and your case gives other people hope too!

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3 (4) month follow up

Hi my friends,
meanwhile 4 months have passed since the revision surgery with Dr. Samji and I would like to give you - as promised - a small update. Please excuse that it took a little longer, because I was in a neurological-orthopedic rehab in the meantime. This was very exhausting and I was often exhausted and tired, but I was able to make further small progress. To that I also wanted to wait for the 2nd control by video call with Dr. Samji.
First of all, it should be noted that my condition has improved significantly in terms of symptoms that I attribute to IJVS. The head fullness, tinnitus, dizziness, brain fog and neck discomfort are improved.
I attribute the existing symptoms to irritation of the relevant known nerves over many years. Depending on strain and exertion, e.g. during rehabilitation sports, the nerve sensations or pain and thus also the remaining symptoms worsen for a few days in the short term. In general, a trend towards positive changes can be seen again according to my assessment. As it is always said and as I also know from multiple own experiences, the thing with the nerves is the one that requires the most patience. Even after 4 months since the surgery, my nerves are still occasionally doing “Kirmes” (“funfair” - as they say here in Germany, which actually describes it quite aptly).

Dr. Samji was very pleased with my appearance and said that I would already look better. The video filters at Zoom were also off, honestly :wink:. I do indeed also notice that the left side of my face is no longer swollen like it was before surgery. The wrinkles on the eye from laughing are really coming back this way.
The rehab has had more of a positive effect on the rest of my body. Years of tension and pain have also affected the rest. So, among other things, I also have discomfort in my thoracic spine, lumbar spine, sacroiliac joint and hip due to unhealthy relieving postures and also military neck. Here, the rehab has worked well and will hopefully now enable me to continue further rehab sports courses, strength and stretching exercises on my own in a health fitness club. Right now I am in the trial month. Since these programs are more challenging than in rehab, it comes in between being overwhelmed and “nerve funfair” again. (That’s why I had to postpone this post again).

In the rehab, both the speech therapists and the occupational therapists recommended me a massage device, NOVAFON, that on the one hand stimulates nerves by sound wave massage (in the audible range) and on the other hand can also calm them. This also works quite well with my nerve complaints and tensions, so that I have also ordered the device for home use. Dr. Samji has no objection to my using the device since 3 months have passed since the surgery. Mostly I use the 50Hz mode to calm the nerves and relax muscles. I also have a few intraoral attachments in use. If you haven’t had surgery yet, you should probably be more careful and not hold directly on the styloid with it as well as ask an ES expert doctor beforehand as the NOVAFON also works up to 6 cm deep into the tissue.
Here is the link to the manufacturer’s site: DAS NOVAFON incl. charging stand | NOVAFON
And here the US Webpage: NOVAFON

Also my osteopath says - and I can confirm this felt - that he can now work deeper into the muscle layers. We both notice that my muscles at the neck and shoulders have partly stored calcium salts due to the long time of extreme tension, so they are also calcified. You can tell by the sound when he works them. This is all a good sign, because now he also thinks to make progress again with me.

Next week I will have another control CT or two. After consultation I should do one without and one with contrast media. Dr Samji prefers without contrast medium. Since I also want to have the jugular veins re-evaluated, we then agreed that both make sense and should be done. I am a bit curious how it looks now after the surgery in my neck.

So far, I am glad that I had the surgery with Dr. Samji and would always have it done again with him and his team. Nevertheless, it is probably a somewhat longer way back to normal life and until all symptoms have subsided, if that should happen at all completely. In any case, there is still a lot training needed to get out of long term ES. Working on it.

Of course I will keep you up to date and wanted to give you a new update after half a year after the surgery, i.e. in 2 months. So long let’s continue to fight against the pain and stay strong!

Best regards

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So glad that you’re seeing real benefits from surgery; it’s good for members to know the long term effects of muscle tension & inflammation, & to understand that surgery isn’t a magic wand that’ll take all pain away overnight…sounds like you’re working hard to overcome everything left over, so I hope it keeps on helping.
Thank you for the update :grinning:

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What a healing journey you’ve been on. I hope it continues only in a positive direction. It will be interesting to know what your updated CT scans show, too.

The info about calcification in your muscles is a little scary but makes sense since the body is continually trying to strengthen the areas that are most load bearing especially when they’re doing a job they weren’t meant to do.

Keep up the hard, good work and look forward to the day when you can do the things you are passionate about again. :hugs: :heart:

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Dude,
Glad to hear you are making progress. I will check out this massage device! I personally feel better when I have weekly massage although cannot afford that often now that I am on medicare and limited benefits. I sometimes feel my neck being tight and more numbness from the surgery areas. Good stretching of the neck manually works wonders for this tightness. I also had some acupuncture in my neck and jaw and had a tens unit attached to the needles. I found it to be helpful.
One thing I have not tried that has been suggested here is cold laser light therapy. Ive attached an article on it. Many hugs Dude :smiling_face_with_three_hearts:

Lasertheraphy.pdf (555.3 KB)

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I have had some laser therapy but it’s been warm laser. I think it did help wake my nerves up after surgery & it definitely helps relax tight muscles. I mostly get laser therapy for my jaw area now after the chiropractor does his magic on my TMJ issues. It helps temporarily but doesn’t seem to be a permanent fix for me.

I have found a program for self body work through yamunausa.com to help permanently relieve TMJ symptoms, but it’s an expensive course to take. I may invest, & if I do, I’ll report back. I imagine it requires ongoing self-care for the TMJ after the initial work. If it helps, it will sure pay off as I won’t need regular chiropractic visits.

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The thought of permanently getting relief from TMJ would be a miracle to me! I think the cold laser helps reduce inflammation. Since I have osteoarthritis in my jaw and bone loss, not much more I can do short of going on an extreme anti-inflammation diet. I have been using a new appliance for the TMJ and have yet to notice a huge benefit yet. Massage generally helps my muscle relax but it is short lived too. I really need to have weekly massage to stay fully out of pain and tight muscles. It makes a huge difference for me and improves my mood as well. Sadly medicare which I am new to, only allows for 6 massages a year…down from my employer benefits of 70-99 PT visits per year. I have 18 combined chiropractor /acupuncture visits. Out of pocket costs for treating TMJ in general are what has prevented me from getting treatment sooner in my life. Ill be curious to see about this course and how effective it is.

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That’s still a lot issues you are dealing with. I’m sorry to hear that.
Maybe the Novafon is good for you then. It feels a bit similar to tens and works very good on my face and jaw. Actually better then tens and easier to use. The company has a 30 day money back guarantee so you can try without financial risk.
I don’t want to miss that device anymore though it mostly works on symptoms and not on the root cause directly.
Hope you can find some quicker and affordable relief. Please tell us your experiences with that. Would be fantastic und interesting if it works as positive for you too. :hugs:

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So glad to hear that your surgery was successful! I’m thinking of trying to fly to the US for surgery with Dr. Samji or another doctor soon. Been on the waiting list up here in Canada for months and with the pandemic, Alberta has closed many of the ORs, so probably would not get any help until next year. Your insights about nerve damage and damage to surrounding tissue from prolonged delays seem to suggest I should jump on this and have surgery sooner rather than later and this may save much difficulty down the road. Have you ran across any information about adverse impacts in Eagle’s patients who’s treatment was delayed? I really appreciate reading your posts - super helpful!! Hope you keep feeling better each day :slight_smile:

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Update after new CT-A

Hi guys,

This week I had a new follow up CT-A. It was a litte bit surprising i.e. disappointing because the IJV on the left opened only a litte bit. There is still severe compression, the radiologist told me, and the C1 TP is a bit prominent but there might also be scar tissue. Though the symptoms are improved I’m a bit unhappy with that, because I had hope the jugular vein will open up completely or at least up to 50%.
Hard to determine now what remaining problems come from what. I think I have to be patient again and wait a bit more to evaluate the right side for surgery and then maybe care about the compression. And I don’t know if they would treat IJVC here in Germany.
Already told Isaiah, that I’ll probably see the whole US before they get me to health again. :stuck_out_tongue_winking_eye:
Not the badest thing, but I would prefer traveling for pleasure.

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It’s rotten that the vein hasn’t opened up fully- I was warned by my surgeon that sometimes they don’t, & stenting may be needed, I don’t know if that’s a possibility? I guess it depends on how you feel, what symptoms remain, & like ES surgery, whether you think further surgery risks are out weighed by the potential benefits…Others have found benefits with cold laser therapy for scar tissue, I don’t know if that might help you or is even possible?

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Dude,
Sorry to hear about compression issues. I spoke to another ES patient that had to have revision surgery because of this. She also had 4cm of calcifications left in one side after 1st ES surgery that once removed did relieve the compression - this was last week. Someone else did her other revision on other side and original ES surgeries who doesn’t seem to focus on compression issues and it appears a 3rd surgery may be needed to be done as that compression is till there. There was some talk of going in with a balloon to open up the compression vs another surgery? This patient has post-op appt this week and will see what doc says and pass on the info.

Maybe you need a neurosurgeon / vascular team to get in there and remove scar tissue? I have had a long history of nerve compression primarily from ehlers danlos. I have had multiple surgeries to decompress nerves but not veins. You need a highly specialized surgeon for this kind of work. We would love to see you back in the US…hopefully better circumstances.

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