I’m glad that there are some improvements @lilwider , & I’m sure you’re right that some symptoms are flaring/ returning as you start to do more…I hope that your shoulder particularly improves soon, glad that you’re patient & optimistic about healing, hugs and prayers 
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I’ve had my extensive vestibular testing done, and it appears that I have a fairly significant unilateral vestibular hypo function.
What is Unilateral Vestibular Hypo Function?
Unilateral Vestibular Hypofunction (UVH) is a term used when the
balance system in your inner ear (vestibular) is not working properly.
There is a vestibular system in each inner ear, so unilateral means that only one system is impaired, while the other is working normally.
In my case the left side only functions at 45%
I’m awaiting confirmation fro m a Dr. at Yale, then, hopefully we will come up with some kind of treatment plan, which may involve pharmaceuticals, TBD. Just figured I would let the group know what’s going on.
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Interesting, so you’re having dizziness? I just started getting some bats and dizziness about 2 weeks ago Dr C was thinking it’s bppv, I’ve been tested for that and the maneuver doesn’t help his pharmaceutical treatment diagnostic didn’t help, I am thinking it is tight muscles and positional when I lay my head down and to the right that’s when the dizziness starts or if I bend over. Interesting to see what your doctor comes up with
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@Barrootz & @lilwider - I’m sorry you’re both experiencing problems that your ES surgery didn’t help. I hope the treatments that are prescribed stop your dizziness & help you be able to function at your normal level on a daily basis. The vestibular system is another very complicated area of our bodies (are there any that aren’t?!). Thankfully, we live in a time when doctors know a vast amount more than even 10 years ago.
Barrootz, please give us an update after you meet w/ the doctor from Yale.
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So sorry you are going through this. I had a terrible case of vertigo when I was in high school. It lasted most of the year and damaged the vestibular system in one ear. More recently I had all that testing done and now I have bilateral hypo function. They speculate that over time the other ear downgraded to match to gain equilibrium. I went to neurorehab which was pretty helpful. You should also look at the book, The brain that changes itself. The first chapter is about a women who has no vestibular function due to a certain antibiotic being overused. She is able to develop vestibular function by retraining her brain with some specific neuro feedback equipment. It’s fascinating and may be something that can help you.
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Oh I’m not saying mine surgery was unsuccessful but any means… Just a hiccup. I truly believe it’s tight muscles right now causing this. It’s not all the time dizziness. An annoyance that I’m aware of. I know it takes time. I’m only 8 weeks out. And I feel doing quite well . I’ve been reading up and doing research-as we all do, and seems that SCM can cause the symptoms I’m having. My SCM was manipulated during surgery along with accessory nerve disecction so there is a lot going on. Dr C thinks I’m ahead of the curve and happy with my progress. I just have to give it time and listen to my body.
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Thank you for your thoughts. I do keep up on my vestibular therapy exercises- though light stretching - throwing the softball, and hot and cold have been a big help I think. It helps keep my muscles loose. When they are tight it gets worse.
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I’m glad that you’re okay about having the surgery…the patience thing is hard though!
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@lilwider - I think I didn’t word my post well. I know you’ve had some good results from surgery but I’m sorry there’s still dizziness. As you say, you’re still in early recovery so it will take more time for your SCM & accessory nerve & other nerves to recover. Hopefully as they do, your intermittent dizziness will also begin to subside.
Throwing a softball sounds like an interesting form of PT but I can see the benefits it could give if done w/o a lot of force. I played softball for years when I was younger. Love that sport!!
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Of course everyone wants instant gratification but I went into this knowing 6-12 months to recover. This is just a hiccup. If may 2025 rolls around and it’s still bothersome then I panicked
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I just needed to clarify and wasn’t trying to correct you. There have been many bad stories and people complaining on this and other eagle sites about the surgery and Dr C. I just feel I have to be as transparent as possible so others will not be scared or skeptical of the process. It’s a marathon you have to have faith and patience in the process
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Preach it, Sister!! I LOVE your optimism & attitude, @lilwider. I hope what you’ve written is encouraging to others who are struggling a bit w/ surgical recovery.
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Checking in on you @Barrootz - how are you doing? Have you and Dr C come up with a plan or have you seen the specialist at Yale?
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Funny thing, @Barrootz, I was also thinking about you today & hoping you’re making progress toward resolving your dizziness, etc.
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Hey, thanks to both of you for reaching out……believe it or not my appointment with the Yale Ent guru isn’t until mid October….he is booked out THAT far.
So many things got better after the IJV decompression….the only thing that didn’t was the dizziness.
So, we’re doing a deep dive into possible CCI cranial cervical instability….more imaging to be done.AND the Yale Otolaryngologist in October…….it is a very long and slow process….and I wish I had a case manager / coordinator to help me.
Again, thanks for thinking of me, I really appreciate it.
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@Barrootz - Good to hear from you! I’m really glad you have appointments coming up and hope they are very fruitful in helping define what’s causing your dizziness. I also hope you don’t have CCI & it’s something less complex than that causing your symptoms.
Please continue to keep us updated as you have time.
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I think the waiting times in the US seem to be getting more like the UK! I hope that the next round of imaging can show what’s causing your dizziness
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Yikes that’s a wait! But as long as someone is going to address your concerns. Yes me too with the dizziness but mine is not horrible. I did have a few episodes that was concerning but now it’s an annoyance of course still concerning it’s more when I lay down and turn. But I’m wondering if it’s right SCM? Dr c said he did have to manipulate it. So you get the tug in the head behind the ear at the SCM attachment point and it clavicle? Dr C has me seeing a specialist in the city for dizziness, pulsatile tinnitus is coming back on surgery side, but I also have symptoms creeping on my left including diminished hearing on my left. So we will see what the future holds
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So sorry that your pulsatile tinnitus is coming back, & getting symptoms on the other side now…I hope that the specialist can help with the dizziness
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@lilwider - I have hearing loss on the left side & have discovered I have IJV compression on that side. Several years ago I was sent a link to a research paper that was written about a study on a small number of people who had hearing loss & IJV compression. All the people in the study had IJV decompression surgery & only one didn’t have hearing improvement after the surgery. I’m hoping to have hearing improvement after my decompression surgery at the end of Oct. & will report back on the forum whether I notice improvement or not.
I’m very sorry your pulsatile tinnitus is returning. If it continues to ramp up, it would be worthwhile asking for a repeat CT scan to check to see if your IJV is still as open as it should be.
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