Very interesting info about the Warheads. I ate one many years ago. Note that it was only one & I didn’t have FBS at the time. It will be very painful!! I love fresh pineapple & had to completely give it up early in my FBS journey. It doesn’t bother me too much now though. If you don’t want to eat candy, tart fruit like pineapple or citrus would probably also do the job. I expect the mouthrinse is to protect your teeth from the sugar.
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Yes about the mouthrinse. I should have added that. guessing that means rinse first then do the super sour. hmmmm bit a lemon?
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Sorry to hear your recovery has been rougher than expected! It sounds like things are improving but slowly.
Had no idea until reading your post that FBS is a thing. I’ve had this since around the same time my Eustachian tube issues started (first ES symptom I can recall). Interesting!! Just never thought much of it with everything else going on. It’s sort of fascinating watching all the pieces come together.
Reading bits of your story and your recovery, I’m wondering if you have connective tissue issues like hypermobility or EDS. Also wondering about your fatigue. New after surgery or ongoing?
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I knew nothing about FBS either Until I started reading about it here. And then I realized that that thing that I had that happened once in a while and Was relatively mild must be a mild form of it. Not so mild right now but it will go away 
or at least dim way down again. It’s amazing how much we can learn in this group and groups like it.
Thank you so much for being so thoughtful to think about and pose some suggestions for me . A lot of my doctors agree that I have some form of connective tissue disorder. But nothing that genetic testing Found. I’m too old to do anything but fail a hyper mobile EDS test. And if I do have that it’s certainly not strong as I do not have the terrible symptoms at some of my friends that have it have. I would not be surprised if I had it but in its mild form. I certainly had my party tricks when I was young, and Can still reach down and touch the floor today, but getting my palms flat on it? Heck no! 
It has been four years the actual almost 5 since the start of my journey of being unable to work. Much longer since the start of this journey. Fatigue definitely became a part of it. Nothing like I have experience post surgery though! It is starting to get a little bit better now which is wonderful, but still quite a lot more than I would think based on being 6 weeks out from surgery. Although as @Isaiah_40_31 and @Jules remind us, everybody’s journey is a little bit different there is no one path.
Curious what you were thinking re the fatigue. Were you were thinking ME or other? (I don’t think I have ME as am not mostly bed-bound from exhaustion, which I believe is the case with ME…?) but pls correct me if I’m wrong.
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It is about time that I take a few minutes and write an update. Albeit using dictation and all the messiness that comes with it. I am now Coming up to eight weeks post surgery.
After what felt like an unnecessarily rough start to my recovery, I am elated to be able to say that I have returned to pre surgery level of symptoms on most of the symptoms that have gotten worse.
In my mind this means that things are only going to continue getting better.
My handy tools and devices have made it much more comfortable for me to get around with the accessory nerve issues. I’m still having pain in that shoulder, and that trapezius is very angry, but it is nothing like it was before.
I have been tracking my symptoms that were relevant to this since a few weeks after surgery. Update this on occasion that it might be helpful for anybody to see the totality of the symptoms that I have experienced, both new, worsened, and improved. So I have included screen shots of my most recent update that I did yesterday.
The worst of those that have gotten worse today are my TOS, inability to pick up my head or keep it up and let’s not talk about looking down, physical fatigue, range of motion and pain with moving my neck around, and shoulder And sometimes the whole upper arm pain on the side with the accessory nerve stuff. To be fair, washing my hair is so horrible now that I only wash it once a week and in fact alternate with getting it done at a hairdresser. So one week the hairdresser the next week me. The day after is a full blown migraine and the rest of the day is anything but fun.
I am still on muscle relaxants day and night so this is all with those doing their thing.
When I saw doctor Hepworth for my six week update, I did share this with him, but it seems possibly overwhelming for him to look at. He focused on the accessory nerve issue which I had been calling palsy. And specified that it was paresis, because in true palsy that means that the nerve has been cut. Based on my reading, I’m not quite sure that that’s the case, but as my physical therapist said it is just a matter of semantics. He thinks that it will be resolved within another month or two… when I Google accessory nerve paresis that lines up with that timing. Given that I have not gained any more range of motion… And I’m doing physical therapy for it and really doing all the exercises that I’m told to… I’m not so sure that he is right on that one. Of course all of the feedback from this group also suggests that I’m looking at a much longer course.
He did say that because it takes up to three months for the blood to figure out what it’s doing, if I am still not having improvements over baseline at my next appointment then we will order more imaging. He also of course agreed that until the accessory nerve stuff is sufficiently improved, even if surgery on the other side might be warranted we would have to hold off. Unfortunately that means that we would not be able to get it all done in this calendar year For insurance purposes.
The thing that I have found the most helpful has been wearing my soft collar again. As soon as I started doing it, there was a nice increase in the amount of time that I could be upright and of course in the terrible neck pain from being upright. I asked my neurologist if he would put in a prescription for a hard collar thinking that that might buy me even a little more time if I put it on toward the end of the time when my soft collar was Helping. He did not want to. I asked doctor Hepworth and he obliged
So question (Maybe I should post this as a new thread as this is not looked at by many… let me know what you think @Jules and @Isaiah_40_31 ): What hard collar has anybody here worn that has helped them who has a skinny and relatively long neck/or that seems to have so much the customizability that it would work for a really skinny long neck? And by skinny I mean that when I put my soft collar on correctly there is about half a centimeter where the Velcro Can stick together. I have heard some good things about the eclipse, but Hepworth says that it does not have as much customization ability as others. He recommended the Aspen if I recall correctly because it customized to height better. But there are so many different types of aspen collars….
I know I had more questions that I wanted to ask here but I can’t think of them now. I guess the good and wonderful news is that my head pain is back to its pre surgery level. Which for me on days that I’m not having full blown migraine all day long, means that I have some really nice or at least reasonable hours in the first part of my day before my head becomes intolerable and I need to be flocked for it.
Ohh, on a side note, one of the radiological findings on a pelvic CT that was done last year was a finding that suggests I might have SMA. Long story short it might be responsible for this significant stomach pains and bloating that I have typically while eating. I just read people that have this can show up at the ER post surgery with something that looks like small bowel obstruction but that is not it and that that is typically how SMAS is found and diagnosed. In my case they did not even think of it. To be fair it is extremely rare and therefore unknown. But putting those two pieces together, the fact that my body seems to have the right make up for it and the fact that I went to the ER after surgery for something that doctor Hepworth thought was probably small bowel obstruction… That’s kind of cool
As there has been a focus here on the things that have been new symptoms or things that are still worse, I do want to say that I’m mentally back to my old self of feeling quite OK with things and having some optimism that there will be continued improvements. I must say I am not 100% believing that I will continue to get better from a head pain perspective. And I don’t know how much that will impact results, but I do think that I am on the right path, and I do believe that there is a good chance that I will continue to see incremental improvement.
There is my book of an update thank you very much for hanging in there with me.
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@akc - I love how thorough your updates are! I’m so glad you can dictate them as writing a post this long would probably put you back in the hospital. 
It’s good to know you’re getting back to baseline with some of your symptoms but I am very sorry that your SCM & all it affects are still down & out & not improving significantly. I don’t know much about TOS but could the fact you have it be affecting your shoulder recovery? That you still have terrible headaches also makes me sad for you. It may be that those will be a part of your life until you can have your other IJV decompressed & restore your upper circulatory system “full circle”. I will continue to pray for your shoulder recovery.
I agree w/ you that your shoulder recovery may not align w/ this timing but it may be one of those things that resolves very gradually over the course of a year vs w/in a few months of surgery. Your poor accessory nerve really had it rough. Is there a part of your PT that includes either laser or TENS therapy? If not, it would be worthwhile talking to your PT about that. He might also be a good person to ask regarding the brand/type of stiffer neck collar to get as I’m sorry to say I know nothing on that topic.
This is good information. There have been recent discussions about how long it takes for the blood flow to normalize after the IJV is decompressed. The only thing that I could recall is up to 4 months, but 3 sounds like a good check-in point.
I’m guessing SMAS stands for Superior Mesenteric Artery Syndrome. I had never heard of this before, but as it’s another vascular challenge it aligns with those that have already been found in your body. Again, I’m sorry you’ve got yet another unusual & obscure health issue caused by your vascular system!
You are a real trooper! You’ve kept your head up & maintained a positive attitude throughout this tougher than tough recovery. May each month that passes bring further healing, pain reduction & higher function of your shoulder & vascular system. I hope you’re able to get the second IJV decompression this year & will also pray for that to happen.
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Thank you for the update, it’s so helpful for other members thinking about surgery…I’m amazed that you can still be positive & optimistic, it’s great that you are, you have really been through it It is still early days, especially as you have other medical issues going on, so I’m sure that you’ll see more improvements going forward, and I’m glad that Dr Hepworth is encouraging you in that regard too…
I’m not sure about a hard collar too, they’re so uncomfortable I can’t imagine them improving any pain, but maybe it does depend on the fit? It’s not something that’s been discussed alot on here, we had a brief one about Q collars for improving head pressure not so long ago that Dr Costantino was asking patients to trial before surgery, here’s a link:
Consult with Dr. Costantino - General - Living with Eagle
Know we’re thinking of you & praying for improvements soon! Take care, sending you a hug
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@Isaiah_40_31 Good thinking about the TOS possibly impacting the shoulder. For certain a part of why it is so much worse is that the shoulder is dropping down which is creating even more pressure on the nerves in the brachial plexus. So in that sense there certainly is a link. And it can be making the neck pain worse, but I honestly think that the neck pain is driven by those whiplashes and probably scar tissue from them. If I think about the amount of scar tissue that Hepworth said he found around the jugular, and I have never had surgery, then that is certainly from the whiplash. So… how much scar tissue is messing up the muscles of my neck that he could not visualize and see to fix?
It is interesting that my PT has not yet talked about any of those ads jumped therapies like laser. He knows not to bring up a TENS, because even just lightly touching my trapezius is it still extremely painful. So a 10s unit would be horrible on me right now.
Yes, SMAS does stand for Superior mesenteric artery syndrome. It is ridiculously rare and I don’t think that there is a doctor in Colorado that works with it or with patients of it or understands it well. I am still hunting now. You have an appointment with a GI in a couple of weeks because the diarrhea has gone on for long enough and my PCP agrees it’s time to see someone. I will definitely show them or bring the imaging, points out the physical angle that is one degree off of SMAS, share with them the information that I have read and about my ERT trip and what was going on there. I will tell them that I am suspicious of SNAS and hope that they are not one of those doctors who automatically go on the defensive when a patient comes with their own ideas.
@Jules Thank you both for the appreciation of my lengthy posts. With my brain as it is I cannot be more concise and I often feel badly about its. I have received negative feedback on it which does not help of course. It is wonderful to receive positive feedback from the both of you
I am so curious about Dr Constantino recommending the Q Caller. That caller specifically is intended to compress the jugular veins in order to create a buildup of CSF fluid in the brain to further protect the brain from TBI’s in sports people where they are doing aggressive things like football where they hit and slam and are at high risk of percussion or TBI. So it would literally be the opposite thing of what anybody with jugular compression would need. There was some significant research done that specifically pointed to And flagged that there are risks as yet unknown of intentionally building up CSF fluid and not allowing blood to drain from the brain at the velocity that it would otherwise. I wonder if somehow Constantino may have been involved in that research? Because it just makes no sense to me that he would be asking high pressure patients to wear something that would further increase their pressure. The only other thought that I have is that he might have been giving them to people where he suspected that they might actually be in low pressure.
I did end up asking in the Facebook group late last night and got a few recommendations there one is a collar that I have seen mentioned before called the Eclipse. It looks like it might not be terribly uncomfortable to wear for short amounts of time. I am thinking of things like when I am sitting at the dinner table eating. My head would naturally and but incorrectly Jet forward. Or other times when it would more likely jam forward… like when I am doing some fun training with my dog Although that might be totally impossible to wear them as I would simply not be able to look down. And then of course to just be able to extend the amount of time that I can be upright in times when I really want or need to stay up for a little bit longer but my neck is screaming that I need to get flat.
I could see my laptop making some mistakes as I dictated, but I don’t have it in me to go back and reread and fix any of them. Thank you both for understanding
And more, thank you both for being here. I know that mine is possibly the least viewed and certainly least commented on of the posts where people are preparing for having or had surgery. So it is even more valuable to me that the two of you do pop in and read what I share and share back thoughts and ideas and comments that are so meaningful and validating. Big hugs to the both of you
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@akc - [quote=“akc, post:88, topic:15891”]
I am so curious about Dr Constantino recommending the Q Caller.
[/quote]
Dr. C’s intention in recommending the Q Collar was for diagnostic purposes. Even when some of his patients had clear compression on scans, he wanted to further justify surgery utilizing the Q Collar to see if it made their symptoms worse when they wore it for a short time. I recall only a couple of our members tried it, & at least one could only handle it for about 5 min. She didn’t buy it, just went to a sports store that sold them & tried one on. Smart tactic I thought! Saved her some $.
For what it’s worth, you’re not the only person who makes long posts on this forum, & I am sorry you’ve gotten negative input for sharing your experiences & thoughts in long form. Even though you may not get many responses, I expect there are members who have benefitted from reading what you’re going through. There is always something new to learn about the human body & learning from someone who is dealing w/ several “interesting” health challenges is the best teacher. That said, I’m sorry you’re the teacher & not the student.
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Teacher and student, oh sensei 
ps now THAT makes sense why Dr C was recommending it. Mind they are nutty expensive so hope he advised people to just try in store
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@Itsanewdawn has just posted a new discussion asking about collars, I found a few mentions in past discussions for her and posted links, I didn’t have time to look any up for you over the weekend, I’m sorry…I don’t know how easy it is for you to look things up and read posts, but here’s a link in case you’re able to:
Cervical collar recommendations - Symptoms and Treatments - Living with Eagle
I think your posts have been really informative and helpful; we’re here for everyone who needs us, and @Isaiah_40_31 & I have both benefitted from advice on here before our surgeries, so are happy to pay it back. Of course we’d rather yours was a great story about how amazingly surgery has helped you (for your sake!) but we’re here to support you
Sadly we’re seeing more members now with complicated medical situations, so it’s not as cut and dried as it used to be when people had surgery 
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