Hi everyone!
Finally my appointment with Cognetti is days away! I’m having a really hard time breathing. It’s gotten really humid and I felt like so was blacking out and the air was too thick/humid for me to breathe. Keep my bp meds more vigilantly has helped some. I’m wondering if this is a normal thing for ES to cause where you can pass out because the air is too hard to breathe because of humidity and temperature.
Thanks!
That doesn’t sound like a usual symptom of ES, it sounds awful for you…temperature and humidity can affect the usual symptoms, pain etc, but shouldn’t affect breathing like that I wouldn’t think. It’s worth seeing your GP/ PCP if you keep getting this.
Hope that your appt with Dr Cognetti goes well & he can help you, let us know how you get on 
Thanks Jules! Yeah I took a peek in the forum search and it didn’t seem overly common. It’s fairly common in the lyme community but I’ve been on lyme treatment for many years. I was hoping I could shove it into the category of magically solvable by ES treatment. Looks like it isn’t though. Might also be mitochondrial 
.
It looks like I’ll end up seeing sort of 2 ES docs back to back. My other doc who does a lot of stuff including ES is seeing me a week after Cognetti. I’m sure I’ll be back here moaning and groaning to all you sympathetic people after the appointments.
Thanks!
@Bailey - I hope 
your breathing issue subsides. It sounds very miserable. I know we’ve got members whose symptoms get worse as the barometric pressure falls, but I don’t recall that affecting breathing.
I feel like in general, many of us with POTS/dysautonomia and other compressions tend to be very sensitive to heat, which humidity can exacerbate. lso air quality issues.
Thanks! I saw Cognetti yesterday. He said he thinks my symptoms are way too severe to be caused solely by ES. He also didn’t see the kink in the jugular Dr Henderson said he saw. Cognetti was extremely nice and seemed to genuinely care about my issues but ultimately didn’t think ES treatment would help them. I’m going to talk to a neurologist knowledgeable about these things next week, so we’ll see. I do know that the breathing issues improve when I take midodrine and get worse when it wears off.
I’m sorry Dr. Cognetti didn’t feel ES surgery would help you. In my non-medical opinion, elongated styloids/calcified stylohyoid ligaments cause such an array of symptoms that no doctor can definitively say removing all that extra calcification won’t at least reduce symptoms.
Please let us know what your neurologist thinks especially if he’s aware of all the nerves that are at risk for irritation or damage by ES. Others have seen neurologists who really don’t understand the broad scope of ES symptoms & their potential nerve related causes, so they’re sent away w/o answers.
Yeah Cognetti seemed confused why I’d want a nerve block to test to see if my nerves are angry because of the styloids/calcification.
I have pretty high confidence my neurologist knows what’s nerves can be affected given she is the one pushing me to get the bilateral glossopharyngeal nerve block. She also reads scans herself and deals with really weird patients.
Thanks Isaiah, we’ll see what She says
It’s not typical to test for which nerves might be affected by ES prior to surgery so that’s probably why Dr. C was confused. I understand your situation is more complicated so it might make sense for you.
I was wondering if you knew if Dr Hackman or other es docs on the east coast are more familiar with the nerves being affected?
@Jules put together a series of posts with answers to many questions about ES. Each one starts with ES Information: If you type that, or paste it into the search box, all her posts will come up. I’ve included links below to the two which are most likely to help you. You can save them to use during a consult.
I truly don’t know how many doctors know the number of cranial nerves ES can affect & which symptoms tie to which nerves. I’m sorry to say I think you’ll be hard pressed to find an ENT who is completely informed in that arena.
Having been to Dr. Cognetti many times, and twice for the bilateral removal of my styloids, I trust him implicitly. I had a question that another doctor thought he saw part of the left side still there and Dr. Cognetti said it was not big enough to cause any symptoms. He has been there for me so many times and always has answers that without a doubt made me happy and some not so much. But I do believe him completely. He’s absolutely excellent at this confounding rare condition.
Thanks LoriW! Yes, I asked Dr Cognetti if styloids elongate as a compensation mechanism for cci and he found the questions fascinating instead of derisively dismissing me as an idiot which is what I expected from that type of question. Knowing he’s not a power tripping doctor intent on forcing patients to bend to his preferred narrative gives him a lot of credibility in my mind. He did tell me himself that I should perhaps find a neurosurgeon for my needs though.
I’m glad you had a good experience with him. Are you doing well now?