Hi all! So I have noticed in the past couple of weeks that I’m having some challenges in speaking. The word I want to say doesn’t come out like I want to say it. Like I get the tense wrong or something. Once I wanted to say “she works hard” and it came out “she work hard.” Or my pronunciation is wrong. I started digging around and saw that if the ligament is impacting the glossopharyngeal nerve, it can cause speech problems in ES patients. Just wondering if anybody else has encountered this.
I’m sure Isaiah had slurry speech after surgery, I think it was the hypoglossal nerve which has a motor function to the tongue being stretched in surgery which affected it. So maybe that’s what’s being affected? For me, the brain fog made it a bit hard at times to follow conversations & think what I wanted to say, so different to what you’re experiencing.
Good to know. My symptoms are actually not entirely different. I am also struggling with word finding, and figuring out what to say. So I think there could be some brain fog involved. I’m seeing my doctor on Monday.
And probably dictated.
Please excuse typos, misspellings and just plain weird, inappropriate words.
I like to think I am relatively eloquent.
But Siri is often a drunken, blathering idiot.
Siri & autocorrect are comrades in arms!!
Jules is correct about the tongue thing. For me it was my glossopharyngeal nerve that was angry after surgery & half my tongue was paralyzed. Eating & speaking clearly was a challenge for about 6-9 months but the nerve healed & things got better. I still have a hard time saying the word “little” (it comes out “lil”). It’s funny as I seem to use that word a lot! You’d think all the practicing I do would have made “slide off my tongue” by now.
Yes, I have had a similar thing once in a while and it’s very disturbing. I have difficulty finding the correct word to say (in medical speak it is trouble with word finding). Along the same lines, one time I said a sentence really fast and a random word “bird” popped out in the middle of the sentence that had nothing to do with what I was talking about. It was quite worrisome. The problem seemed to be stemming from my brain not working right rather than my tongue not being able to form the words (such as would be from damaged or irritated nerve). Therefore, these occurrences have been attributed to the increased intracranial pressure from the styloid pressing on my jugular vein. I recently saw the ENT surgeon who is fairly experienced with Eagle’s patients (Dr. O’Connell) and he confirmed that these strange neurologic type symptoms are due to slightly increased intracranial pressures from the compression of my jugular vein. Other symptoms along these lines are thinking I’m seeing something moving when it’s not, which again has been only a handful of times. Examples of this are when I’m looking around a room and I think I see my cat jumping out of the corner of my eye and look back and see that it is just a crumpled up sweatshirt (etc.) Also, about 5 or 6 times I have felt the ground shifting under my feet, which felt very real but was definitely not moving. Again these types of things were from the increased intracranial pressure and not another problem like MS etc. This is also sometimes associated with ear ringing and brain fog, perhaps more commonly reported symptoms caused by the venous vascular compression. Until I had it all sorted, I was starting to worry I was “loosing it” but very happy to understand the connection to the disease process that explains these bizarre symptoms and that I’m not going nuts.
Thank you, Dizzylady. Your explanation makes a lot of sense. I appreciate your input! Do you have a surgery date scheduled yet?
Yes, that makes a lot of sense. Sounds a lot like what is happening to me. Helps me a lot. Thanks so much. I hope you find solutions soon!!
Thank you for your concern and asking. Due to COVID and prior surgery cancellations there is a huge backlog of patients. They estimate my surgery by Dr. O’Connell will be in December but could be a couple months later or sooner - it’s hard to predict. They will call me about a month in advance with the date. I could consider traveling to the US to have it sooner, but I’m happy to report that my symptoms are not as bad as they were in the fall and winter, although I’m still having them some. This better in the spring and summer was true last year as well. I wish I could figure out the connection for this seasonal pattern happening in me. I wonder if the warmer weather helps the blood flow? or perhaps it is some type of positioning induced by a new activity set (yard work? or other?) that I don’t do as much of in winter. I’m fearful of the fall time, but hanging in there. Have you heard of anyone else noticing a seasonal pattern to symptoms in Eagles?
During my appointment with Dr. O’Connell I learned some interesting information. First he trained at University of Washington in Seattle for his H&N surgical fellowship. At that time, the fellow was assigned many of the Eagle’s patients and so he obtained much experience. The approach at that time was external. After doing many of these surgeries externally, he began to think there could be a better way. that’s when he started doing the intra-oral route. He feels this approach is less invasive than the external approach. He also does not remove the whole styloid in the intra-oral approach. He takes it down to a more normal length, essentially removing as much as he can safely. He also removes the entire attached ligament. He felt confident he would remove the piece that is compressing the jugular vein, but he could not promise my symptoms would improve or resolve. He was very honest and I appreciated that immensely.
I was concerned about the risk of re-growth if the whole thing is not removed. He said that there is no risk of regrowth because the ligament is entirely removed so there is nothing for the bone to re-grow along. This makes sense to me. He told me with the intra-oral approach about 50% of people report eventually being entirely symptom free after surgery. Then about 45% report having some improvement of their symptoms but not resolution of all of the symptoms. This is typically due to nerve damage that has occurred over many years with Eagles and the nerves just never completely heal. About 5% of people report getting worse after surgery. He feels most of these patients likely have another cause for their symptoms that is progressing, rather than complications from the surgery, which is less likely but possible. As for complications he said there is a 1% chance of hitting the carotid artery, which obviously could be a very bad complication. I’m willing to risk it. I’m also hoping I’ll be in the 50% total recovery. At this point I feel that my nerves are not permanently damaged, as I’m able to position myself out of the symptoms (i.e. I feel throat pain so I readjust my head position and the pain subsides entirely etc.).
He also said that the formation of scar tissue from this intra-oral surgery is minimal. If for some reason my symptoms did not resolve and it was clear that more of the styloid needed to be removed to resolve the problem, then he would try another surgery with external approach. This scenario is probably not very likely but I asked him about scar tissue / re-do, just in case I’m an unlucky one.
That basically summarizes the information that I gathered at the appointment, other than my prior post about the strange neurologic symptoms being caused from slightly increased intra-cranial pressure due to the jugular vein compression, that he also shared.
Thank you again for your support! It really means so much to me!!
Glad that he was helpful & you can have surgery- at some point! He sounds thorough & honest…I’m not sure about the regrowth comment; the ligament is usually detached to shorten the styloid in surgery anyway, but some members have still had regrowth, but it is rare.
I used to notice worse symptoms in the cold too- I put it down to feeling chilly & getting shivery & tense maybe? I hope that your symptoms stay more stable over summer- are you in the heatwave area?
Thank you for such a thorough explanation of Dr. O’Connell’s approach & his reasoning for doing things that way. I’m glad he’s perfected his own approach rather than riding forever on someone else’s coattails. Our members who’ve seen him for surgery have generally had good outcomes though healing times have varied.
We have had several members who’ve commented on their symptoms flaring in the colder seasons & then reducing when the weather warmed up. Jules offered a possible explanation - the way our bodies react to cold vs. heat.
I, too, hope you’re in the 50% who recover completely. I’m glad you’re in less pain now & that you’ve found ways to reduce your symptoms by changing your head positions. That is much better than having to take medication.
I hope your surgery is sooner than later. Please let us know when you have a date.
Hi Jules, yes we had a week plus of unusually hot weather- in the 90s. This is not as hot as many other areas south of here. Fortunately it cooled off and finally rained last night. I saw a neurologist today, but he had not heard of Eagle’s. He said he’d look into it if there is anything he can come up with to help with vascular compression symptoms. If he has any good suggestions, I’ll certainly share.
I’ve taken up sitting on a full body heating pad in the evenings. It will take some time to see if that helps or not. Maybe the heat causes some vasodilation helping blood flow- who knows.
I find it interesting and very helpful to know that you’ve also noticed improvement with warmer weather.
Take care and thank you again for sharing all of this information with miss!! You are wonderful!!!
Thank you so much! I’ll certainly reach out when I’m assigned a date for surgery
I have experienced speech problems too. An example would be if I want to say, “She’s a funny girl”, it might come out as, “She’s a gunny firl”. It’s so embarrassing when it happens but I think people who know me understand. Other people seem to get it if I explain what’s going on but I get tired of explaining all the time. I have a plethora of other symptoms, such as my voice changing and making me sound like a toad. Anyway, you’re definitely not alone as this syndrome can cause so many various issues for those of us who have it. Hang in there, we’ll get through it!
Funny explanation about your voice change, @mutterfly. Now that you mention it, I did notice my voice changed some when I had ES. I kept wondering what was going on as it felt & sounded kind of like I was getting laryngitis. That problem is definitely gone now.
I’m sorry about the spoonerism problem. I know we’ve had people w/ speech challenges as a symptom but I’m not sure that one, specifically, has popped up before. I can imagine it’s annoying.
Hello @Isaiah_40_31, I’ve never heard of spoonerism before now, thank you that will come in handy when I’m trying to convince strangers that I’m not drunk. I also have the brain fog mentioned above. I can’t say I’m too thrilled about anyone else going through all of this,but it’s a bit of a relief hearing others have experienced the same or similar and I’m not completely off my rocker. I was wondering if you know of anyone who has experienced bouts of anxiety and depression as I do, it’s been terrible dealing with that but today is a really good day so I am thankful for that. Thank you for your quick reply btw, I appreciate you.
I’m glad you learned something new today! When I was younger, I used to have a bit of a problem w/ switching the first letters of adjacent words & always got a laugh out of it. When it’s a chronic problem, I’m sure it’s not very funny anymore.
You can click on the magnifying glass icon above & type in “anxiety and depression” or search them separately. There will be many posts that come up on those subjects. The vagus nerve is the great influencer of anxiety & since it’s almost always affected by ES many of our members have had increased anxiety as an ES symptoms. Depression seems to go hand-in-hand w/ increased anxiety & also with chronic pain thus these two symptoms are a part of the ES symptoms “party”.
@Isaiah_40_31 , So good to know, thank you! I’ll try the magnifying glass for sure. Have a great day now!
That’s really weird that you do spoonerisms! I’m glad that you can give people an explanation now…my late father often spoke like that for fun, could take some working out sometimes!
It’s definitely been a challenge for sure.