Anyone for whom dysautonomia is the main symptom/post op recovery stories?

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Yes, I had horrible pressure headaches (Diamox was extremely helpful) and mid pulsatile tinnitus as well, but my most disabling symptoms have always been autonomic–tachycardia, temperature dysregulation, orthostatic intolerance, visual disturbances and fatigue. I have not had any trouble swallowing, throat pain or sensations of foreign objects in my throat, trouble speaking or singing, etc. I do have ME/CFS, hEDS and MCAS, along with POTS and other dysautonomias.

My IJVs were both severely compressed, the left not viable at all and the right (dominant) functioning at about 20-30% of capacity. Pressure gradients were significant enough to call for decompression.

I’ve had both styloids removed now, two months apart. In both cases, the surgeon felt that because of nerve signals, he could not remove the calcified ligaments attached to the styloids. So…styloids gone and ligaments in there somewhere, hopefully not causing mischief.

In each case, the surgeon visualized the IJV opening and also the glossopharyngeal moving freely.

Things were up and down after the first surgery, on the left. I did not feel any better in those two months post-op than I had pre-op. After the second side was done, I had a few weeks that were not great, but at about four weeks out, things really started to improve. PT is definitely gone. Pressure headaches I have not had in several months. I am grateful. In addition, at the four week mark post op #2, I began to have double, then triple, then quadruple my customary energy and ability to be upright. I was able to do things like cook that I have had to mostly give up on because it involves standing in one place for more than five minutes. I was accomplishing not one thing in a day, but four. I was able to sit at a table and eat, or sit in my living room and visit with friends. Previous to surgery, I had to do almost everything in bed.

After 2.5 wonderful weeks of that, things devolved and I am now back (at 16 and 9 weeks out) to as bad as or worse than I was (minus the headaches and PT) before surgery. I have read repeatedly that it makes sense to give the anatomy time to adjust and not to expect to be able to assess success before a year or even longer. I am being as patient as I can be, but of course I want that added functionality back really badly.

Most of us here don’t have the symptom set that I do (I know some do) and I am wondering if anyone who shared my constellation of symptoms and who had styloidectomies can speak to the course of their recovery, particularly in relation to the autonomic symptoms. Thank you!

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@jyoti - It may well be that as you noted, your brain simply needs more time to adjust to the new level of blood flow it’s experiencing which can take quite a number of months. Do you have days that are better than others now or are they all kind of the same?

Have you been checked for any other compressions i.e. TOS, MALS, May Thurner or Nutcracker Syndromes? For people w/ hEDS who have ES w/ IJV compression at the cervical level, there can be compressions lower down as well, but those are sometimes not diagnosed until the cervical compression surgery(ies) are completed & symptoms persist even though the upper level of the IJVs are open. I wouldn’t jump into looking for other compressions for a few more months, but you might want to keep those in the back of your mind just in case…

I certainly hope & will pray you get back to where you were during your 2.5 good weeks very soon.
:hugs:

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Thanks for the good wishes, @Isaiah_40_31 . And for the suggestions. I have been checked for other compressions and there definitely is a problem with my left iliac vein. It was suggested that I start with decompressing my brain, and although that emphatic suggestion was made by a neurologist, I do kinda think it made sense. So I may have to get the iliac stented at some point. I was hoping opening up the IJVs might do the trick, but I know it is so often not that easy. I agree that the moment is not yet upon me to start working on the May Thurner but you are right–it is out there (or in there) promising better times if treated. And just for fun, the angiogram I had found a cerebral aneurysm which consensus says needs coiling, so that is next on my to-do list!

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How frustrating to have a couple of good weeks and then to go backwards- we do see it quite often with members, sometimes it’s because they were overdoing things & set healing back, but it doesn’t sound as if you were doing that? Like @Isaiah_40_31 says, it can take a while for the brain to adjust, and it sounds like you have plenty of other conditions all having a part in your symptoms…
If you haven’t read @GrnyAny 's post about how her vagus nerve has healed since surgery it might be good to look at, as some of her symptoms sound similar, it took a while for healing though:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
I hope that things start improving soon again :hugs: :folded_hands:

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Thanks @Jules. I did look at @GrnyAny ‘s thread in the past but will revisit it today with slightly different eyes. Two, three years is a wide window, which is both discouraging and hopeful–no need to throw in the towel for a long time! In fact, I do believe that my vagus nerve is at the root of most of my problems, and I was disappointed that it wasn’t mentioned much in either surgical report. They must have made more room for it, though, if the IJV and GPN were both released. It is worthwhile to contemplate if I did overdo things. Mostly, I felt like I was expanding to fill my new envelope. I wasn’t moving past it and did not feel like I was doing too much. In fact, historically I spend so much of my days horizontal, that I would have to remind myself: you can do this in a chair now! It is ok to sit up! I have a friend whose theory is that the dexamethasone given post-op lingers for up to a couple of months, providing a false sense of well-being. I suppose that could be a factor, but my post-op taper was only three days. All is well for now–at least I am not substantively worse off–and there is time ahead for improvement. Particularly if my primary issues are moderated by nerves, they do take a while to heal. I just hope that if any of our members have had a similar course, they will share and give me some camaraderie along the road.

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My glossopharyngeal nerve (involved in First Bite Syndrome) has taken 10+ years to recover from its injury during my first ES surgery. I’m finally 99% free of my FBS symptoms. I realize you’re hoping for significant recovery in much less time than that, but this is a huge encouragement to me to know that my body has never stopped working at recovering from that injury.

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At my age, yes @Isaiah_40_31 ! I do hope for my nerves to heal faster than that, but I am fascinated to hear that you are almost there after ten years. Many people have mentioned lingering facial or neck numbness and I have assessed mine and thought–it is not so bad. I can live with this. And for the moment, what other choice do I have? It will be what it is and testaments to slow but steady improvements support my desire to patient. Thanks.

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I’m in your age group, @jyoti. I was 58 when I had my styloidectomies & 69 when I had my IJV decompression last year. I totally understand that recovery slows w-a-a-a-y down as we age!

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Good point, @Isaiah_40_31 . At a certain age, we must add significantly to estimated recovery times!

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OMG. Yes and Yes to the aging. :rofl: Isaiah, is it possible the IJV compressed again? I dont know if you had any stenting jyoti. I am so sorry to hear about relapsing symptoms.

I too have hEDS, MCAS, TOS..and working my way down to possible MALS, slipping rib, pelvic congestion. Im heading in for IJV decompression in the near future which the int ES surgeon missed. My daughter has hEDS and severe disabling POTS, hypovolemic, small fiber neuropathy. Im am now getting her evaluated for ES and IJV compression. I have hopes of seeing the improvements you describe in her although your short lived. I just hope you might have overdid it and had some regression and will bounce back. Please keep us updated. best wishes in your recovery!

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Thanks, @Snapple2020 . I am sorry to learn of all the ‘esses’ –hedS, mcaS, toS and of course eS–you have to contend with. And your daughter, oh no. That must be so heartbreaking for you. I really hope that looking into IJV compression leads to some answers AND solutions for her. Good luck with your decompression! May it lead to relief for you.

And I will definitely check back in as time goes on and update on how things are unfolding for me.

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@Snapple2020 - I don’t recall to what extent @jyoti’s s-h ligaments were calcified, but if they had significant calcification, & because they weren’t taken out, I suppose it’s possible one or both could have shifted & are causing some new vascular compression.

I expect jyoti will have a follow-up CTV at some point to see how her IJVs are doing & whether or not they’re still open. Since her surgeries were pretty close together, I think giving more time for recovery is ideal. We’ve heard of cases where it took 9-12 months for vascular symptoms to reduce/resolve post op so we know it can require significant patience & healing time for that to happen.

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Hi @jyoti , I have dysautonomia as well as my main symptoms, in addition to MCAS and CFS that are perhaps byproducts of my generalized dysautonomia. I had surgery for my dominant (R) IJV in July, followed by the left side in December. I noticed some slight autonomic gain during the month or two before my December surgery, but that has since been wiped out. I’m hoping that additional time and rest + graded activity can lead to a prolonged rebound like I had in months 4 & 5 post-op from surgery #1.

I very recently tried a stellate ganglion block for the dysautonomia and am hopeful I can report back with some positive trends after a bit of time. I’m also considering trying LDN once the SGB initial period is over. I don’t have any other compressions that I am aware of but perhaps that’s also something to look into as well.

I also did want to point out I had a similar pattern of recovery during my first surgery – I improved pretty markedly around weeks 4-6, but then declined pretty sharply until week 14/15, where I started a small but steady improvement that lasted until I went in for my other side. Hopefully you start seeing the benefits return along that timeline and perhaps even sooner!

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This is great to hear about @dreamliner . Not great that you are still awaiting results from your second side (my second side was in December as well), but great to hear from someone with similar manifestations. I too think that my strangled vagus nerves have led to dysautonomia which have either caused or wildly exacerbated ME/CFS and MCAS. So it makes a lot of sense to do all we can to free up and heal the vagus, since it seems like it could well be the root of all our sorrows! I am really interested to know that you had an improvement in your symptoms at about 4-6 weeks after side #1, then things went downhill till you got four months out. I am just approaching 4 months since my own first side. I wonder how any potential ups may dance with the downs of the second side’s progress? If your experience is a template. I guess we just wait and see. Nothing else to do. But it is reassuring to hear that you did have some upswing prior to the second surgery.

Do you think you might have CCI as well?

Do let us know about the SGB. I looked into that a few years ago but it seemed to be working better for people who had Long Covid and had had it for months, not years. I hope it helps you. It is an elegant idea. Definitely try LDN! For some people it is a game changer. I am sadly not one of them, but it is really important to find out if you are.

Keep us posted on your progress, please. May there be a lot of it!

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Good to read your update, @dreamliner! I’m sorry your second surgery set you back again but it’s good you had the experience you did w/ your first surgery as hopefully it has set the precedence for the timeline of your second recovery.

I hope the SGB is very helpful & if you eventually follow it w/ LDN that’s also beneficial. More than that, I hope your surgeries allow your vagus nerve & IJVs to get back to full function so you feel better & can get back into a more normal life. :hugs:

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Jyoti, I recently returned from an evaluation for pelvic venous congestion and there is suspicion I might have Nutcrackers that needs stenting. This doc wants to see my daughter who has severe POTS as he did a study on this and they are starting to see patterns emerge in EDS/POTS patients. I also saw another doc for slipped rib and suspects also MALS or SMA. Im in the early stages of evaluations which was brought on by severe left flank pain and left kidney issues. This is in addition to my IJV compression in neck. Im on a dual track with vascular compressions. This was an easy to read explanation of some of these vascular issues:

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I’m sorry that you’re having to look at all these other issues @Snapple2020, such a long journey for you, and trying to help your daughter too :hugs: :hugs:

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Definitely worth checking out @Snapple2020 ! I have had these looked at and in my cast MT is clear but the others not showing up on imaging. It is so difficult to know how to fix all these things, and sometimes it seems like a game of whack-a-mole, doesn’t it? I hope your daughter’s situation is simpler and maybe (maybe?) in catching it earlier there may be less progression? Wishing you all the best with the evaluations. I know that some people actually just need one decompression to have symptom relief from a number of compressions. Fingers crossed. Collecting the info seems to be the most important step now

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Whack-a-mole is right! Im interested in the SGB as well. I saw a video by a doc on vascular compression re: Nutcracker and May-Thurman last night as it was suggested for pain while you are pending surgery.

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If you do it, let us know how it goes!

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