I figured at some point, considering my recent diagnosis, I am more-or-less mapping out the pathway to recovery. Because of the complex and unusual nature and varied presentations, I can see it possibly requiring multiple specialists who are informed and practiced with the condition to fully recover.
I wanted to ask you, specifically for someone whose primary symptom is Dysphagia, and pain primarily provoked by strong swallows, yawns, and high-pitch voices - Can I expect a Speech-Language-Pathologist to work with me in my road to recovery? It has been such a long time since I’ve known what a normal swallow feels like, that it’s a little bit frightening to both have to endure pain, and have to re-learn the muscular coordination when eating solid textures again.
Also,
If any of you have had experiences that required a Speech-Language Pathologist, I would like to hear them, as I am unsure whether my dysphagia is tied to the glossopharyngeal nerve, or limited base-tongue retraction/muscle atrophy caused by hyoid tethering.
Naturally, I expect to learn more as I get additional doctor’s opinions on the extent of my condition, but until I am able to get a referral to speak with them, I am in limbo.
Typically, people have not needed follow-up w/ specialists after ES surgery. Given 2-12 months for recovery, the injured nerves, which are causing the post op symptoms, usually recover.
If you have symptoms which persist at a debilitating level beyond 2 months post op, then specialized PT can be considered. I think I mentioned my glossopharyngeal nerve was irritated during my first surgery because it was wrapped around my right styloid & had to be unwrapped so the styloid could be shortened. The results were temporary paralysis of the right side of my tongue which also challenged my ability to swallow. It took 6-9 mos for my tongue to recover. At about 9 mos, I inquired about swallow therapy because I frequently choked on liquids when I’d take a drink. The PT group I wanted to work with required a referral from my PCP. He refused to refer me saying I didn’t have a swallowing issue. Perhaps being able to swallow correctly/consistently is relative in the medical world. I certainly wasn’t in the position of a recent stroke patient, but I choked often enough for it to be annoying & sometimes embarrassing. That situation has mostly resolved now though I still go through short periods where it seems to be a bit of a problem. I am going on 8 years since my first ES surgery. The encouraging news is that my nerves have continued to heal over the last 8 years thus my longer-term post op symptoms have continued to become more “invisible”.
I don’t know that seeing several different specialists prior to having ES surgery will be all that helpful either as they will assess where you are & will not be able to tell you what to expect after surgery. Many of our members have awaken from surgery w/ some symptoms already gone & others greatly diminished. Others have noted symptoms gradually decreasing over time. Healing is also a 3 steps forward, 2 steps back process with good days followed by harder days followed by good days again. It’s a process that requires patience, a positive mindset, & a willingness to listen to your body & not push yourself when you feel good as that can set healing back.
Thanks Isaiah. Your post was very helpful, and I appreciate it I understand that it would be primarily the case should I still have issues resulting post-op, but that is encouraging indeed, hearing what typically results.
It certainly was quite a revelation, that all-along, I had to listen to what my body was telling me, that there was something wrong with it. However, things like these don’t tend to be found without a focused diagnostic, nor treated if someone is asymptomatic.
I think that Isaiah’s advice & experience is excellent, & has covered everything that can be…I’d just like to second that it’s probably best to get surgery first with an experienced ES surgeon, & then see if you have swallowing issues, rather than get extra consultations beforehand…
Have you got an ES surgeon in mind?
Hi Jules, Yeah, I agree and Yes I have two surgeons in mind, since the person who discovered my ES has only had 3 instances of experience with the condition. All of which were unilateral, and none bilateral cases.
The extent of my case, and length of the stylohyoid calcification I have is longer than what was expected.
Because of this lack of experience with it, I have opted to look for second opinions to assure a successful treatment, if possible. The only concern is whether or not insurance will cover an out-of-network visit, through a referral.
The two I am looking at are based out of Boston, MA, but they are far more seasoned, I’ve heard great things about one in particular, Dr. Annino (forgive me if I butcher the last name) that he has done successful bilateral treatments in my area. I need to get my referral process going, and speak with my primary about my plans forward. I am grateful to have a good primary who listens to my concerns and is patient with me. I see the light at the end of the tunnel. I haven’t been this hopeful in the past 2.5 years, so it really makes me feel so much less-burdened.
Dr. Annino is an excellent surgeon & an excellent choice. You will be in good hands if you choose him for surgery. I understand he is also very caring toward his patients which is the “icing on the cake”. I hope your insurance will come through for you if he’s out of network. I’ll say a prayer for you to that end. You are wise to look for a more experienced surgeon.
I understand that it would be primarily the case should I still have issues resulting post-op, but that is encouraging indeed, hearing what typically results.