Hello… anyone try any alternative treatments to avoid surgery? Prolotherapy? Osteopathic manipulation? Or even medications? I’m scared about surgery and the risks
I tried muscle relaxers, PT, accupuncture, chiropractor, navage for sinuses, prednisone, and exercises; surgery saved me.
It’s been 3 weeks; I woke up feeling better. I’m getting the 2nd side done next week, and I’m so so excited. My surgeon who is a head/ neck cancer surgeon and is also a plastic surgeon said he considers it a low risk surgery.
Right now there is nothing but surgery. Prolotherapy stregthens ligaments. But Eagles is a bone that has calicified and elongated and somtimes thickened. Some have gotten injections or take nerve meds, but those stop working. The calcification continues into the stylohyoid ligament down to the hyoid over time.The only cure is surgery and waiting is usually not a good idea. The pain and nerve damage justs gets worse and some of it could become permanent. If you have a diagnosis, you probably had it for awhile. You can take time to find the right surgeon, but surgery is your best option to stop the pain and damage.
Although very rare, there is documented proof that people have died from this. Manybof us feel like we are dying.
Fear stops many from having surgery, but therecis no way to know how long they go on without surgery. I waited about 3 years from diagnosis and had intraoral surgery on one side that was not especially successful and 5 more years to finally go for external on both sides 6 months apart. I wish I had done it way sooner. I may not have gotten Glaucoma, and I probably would not have suffered with Acid reflux all those years.
Yes , it is scary. You are in the right place to learn what you need and to get encouragement that you will not get from friends, family and most doctors.
Your choices will be your own and respected even if you choose alternative action. I am doing acupuncture and craniosacral therapy to help in the recovery process. It works well during recovery.
This is so good to hear! Who did your surgery?
Thanks so much for your honest response. This is so scary but you’re so right. I guess I’m just scared because of the risks and also because some people’s symptoms come back and I’m wondering if there’s something else going on? Idk, just can sleep and anxious
I wouldn’t have any alternative treatments - especially manipulation- for ES as there is a risk that they styloids could be fractured. There could possibly be more nerve damage, or worse, that a blood vessel could be blocked or torn.
I think a couple of members have seen a chiropractor & that’s helped, but most chiropractors wouldn’t be aware of ES & the potential risks.
Emma’s post is very informative, & sums it up- surgery is the only cure. But as there are risks it’s something you have to weigh up for yourself, depending on how bad your symptoms are. I put surgery off for a while as I was worried about the risks & I could live with the pain, but then I started to get some very scary vascular symptoms so I found out about a really goid surgeon on here & had surgery. The nerve pain hasn’t totally gone, but much less thsn it was, as emma says you don’t know how much damage the styloids can be doing to nerves when left in.
Not all symptoms always go completely, but most members will find their quality of life improves significantly after surgery. If you’ve read on here about members still getting symptoms then sometimes it’s because it’s still quite early days- the nerves can take months to heal, & members have found improvements even a year afterwards. Occasionally the styloids can grow back, but that’s pretty rare.
If you’re able to have surgery with an experienced surgeon, then that will minimize the risks.
Dr Andrew Coughlin, Methodist hospital ,
Omaha, Neb. He mentioned Dr Congetti several times in conversation. He agreed I had Eagles but was hesitant. I agree with what several have said, if you tell them throat pain, as one person said like getting stuck with knives, headaches… stick to basics, surgeons are more willing. I did tell him after surgery the various things I had noticed. He said as a rule he can avoid touching any nerves.
You are close to some of the best. Dr Cognetti at Thomas Jefferson in Philadelphia and Jason Newman at U of Penn in Philadelphia. I would have had surgery much sooner if I had been close to one of them. There are others in NY, Boston, and in CT that are on our 2019 updated doctors list. I am more familiar with the two I mentioned. I was preparing for a trip to U of Penn, just before I found my doc closer to home.
Others can attest that you are in a great place to get through this without worrying about finding the right doc. Breathe, you can do this.