Sorry I wasn’t clear on that. My next consult is October 11. Surgery isn’t scheduled yet. I’m hoping early November.
About how long before people start eating more normally?
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If you feel comfortable doing this (and feel free not to) during consultation with him please ask if he does do the surgery if the jugular is compressed . You can tell him there are people interested in the midwest. Hopefully, you won’t have the jugular problem!!!
Dr Michael Sim in Indianapolis, IN appears to only do the intraoral. Since I never talked to him I don’t know but that is what the Nurse Practitioner said.
Good luck.
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@paul15 - Some people come out of surgery being able to eat normally whereas others have a sore throat & stiff jaw. For some with the jaw stiffness it’s a few days to a week but can be up to a couple of weeks before eating normally is comfy. I had my first ES surgery on 11/17/14 & traveled 3-4 hrs by car for Thanksgiving that year (was a passenger). My jaw was still very sore on Thanksgiving so my husband took my TG meal & put the whole thing in a blender w/ some almond milk & made it into a thick stew like substance. It looked awful, but it tasted delicious!!
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@JugularEagle - Have you asked your medical insurance for a case manager? Some companies offer that service. Because you have a more difficult to treat form of ES, you can appeal to your insurance company to allow you to see an out of network/out of state specialist. It’s a bit of a process but we’ve had several members who’ve been successful in seeing the doctor who would be best able to help them that way. You can send a PM to @lilwider to get some details on her journey in that regard though she shared much of it on the forum. The link below shares the positive outcome she got.
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I just got off the phone with Dr Lamarre’s office at Cleveland Clinic. I asked if he does Jugular Eagles. The office called me back and said he does do it. His license doesn’t let him do televisit for the first visit. I forgot to ask if after that visit can his visits cross state line. Of course, we don’t know how many he has done and I didn’t ask. I was lucky just to find out he does them.
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As @Isaiah_40_31 says, the eating does vary…I couldn’t eat solid stuff or open my mouth wide enough to clean my teeth properly for 7-10 days I think with my first surgery, but didn’t have any trouble at all after my second surgery! But if you’re in company it’s best to be prepared!
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That’s good news! Have you been able to schedule an in person appointment?
I am pretty freaked out about this whole thing and trying to find the best approach. Is there a way to get Doctors to do peer to peer consultation with someone not in their group to see if a Doctor can handle a particular case. In Indianapolis, IN it seems that Cleveland Clinic in OH is their go to for cases they can’t handle no matter the case even if Cleveland Clinic doesn’t even do it.
I know for sure that I don’t want to use a Surgeon who has only done a few surgeries that involves the Jugular.
I would really like to follow Hepworth’s protocol for tests but getting anyone to do them is going to be a challenge.
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That’s really helpfu! Thanks!
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The best plan is to have a consult with Dr. Lamarre, ask the questions you have regarding his experience, surgical approach, outpatient/inpatient surgery, etc. & see what you think of his answers. He may be quite experienced, & we’ll be able to add a note by his name that he’s experienced w/ VES surgery!!
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I saw Dr. Lamarre yesterday. He was really kind and took his time with me. After asking a lot of questions, he showed me my CT scan and said that my styloid, though calcified, is not hitting any major arteries or nerves. He thinks that my symptoms are more likely coming from the flat neck. He said because I have pain on both sides of my neck that it’s not likely the styloid that is causing the issue. He is referring me to an Upper Cervical neurologist as well as a TMJ and another neurologist. If those three doctors do not find anything, he wants me to come back in six months and then possibly see about surgery.
Not exactly the answer I wanted, but I’m glad not to have to go through surgery if that will not bring any relief. I’m thankful for his honesty and more conservative approach.
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I’m glad that you found him kind, I’m not sure how he could say about the styloids not hitting any nerves; as far as I’m aware they don’t show on CT scans?! But as there is a risk with surgery, & it shouldn’t be undertaken easily, it sounds like it’s worth following his advice to try & get your neck curve improved…you could always get a second opinion otherwise, but restoring the curve might help with symptoms if the styloids are irritating nerves…
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I also question this comment. I wonder if the upper cervical neurologist can order something for you that will show the nerves and to assess whether Dr Lamarre is correct.
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@paul15 - The type of scan that shows nerves is called a FIESTA MRI. We’ve learned w/ ES that sometimes an elongated styloid irritates a nerve or several nerves all the time but others the irritation is based on head position so symptoms can get worse & better. I think any nerve after it’s irritated for long enough will start to cause pain/symptoms more consistently. I agree w/ @Jules & @JugularEagle in that, Dr. Lawrence can’t say for sure your styloid isn’t causing the pain you have, however, I also agree w/ Jules that starting with a more conservative treatment is a good plan as losing the lordotic curve in your neck absolutely can cause the type of pain you have & working to restore that curve can reduce or complete resolve symptoms.
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