Living with this for at least 4 years - Ready to face surgery

General
1

I started having substantial neck and throat pain about 4 years ago. I had a neck CT where the found elongated and ossified SH. Bilateral but worse on one side. The radiologist identified it as eagles syndrome. However, my internist said “oh they just like finding these random things, it is how radiologists have fun, it is not causing your neck pain”. Not my doctor anymore, but for a while I tried to believe her. I joined this group a while back. I have had prolotherapy for neck pain, but that Dr. also didn’t really give legitimacy to eagle’s. He just thought I had unrelated nerve inflammation and damage. Went to an ENT - he said it was not the cause of my neck and throat pain and that I needed speech therapy.

At that point I had gone through enough and just focused on living my life . . . .in pain. The pain has become so bad, along with swallowing difficulty and a diagnosis of small fiber neuropathy and autonomic dysfunction that I went on disability last year, giving up my job. With the swallowing getting worse and the pain being very pronounced from my neck up, light headedness, migraines, etc, I am going back to eagle’s to see if it is possibly the root of a lot of my health issues. I am a surgery risk, so I knew that surgery was one of the only things that helps (and a few years ago a lot of people who had it done said the pain came back) and I avoid surgery unless critical. I did have surgery last year for female related issues and did great, so that gives me hope that I can get through surgery, but I was worked up pre surgery and had it done at Sloan Kettering in NYC, which was top notch.

So now I am trying to find a surgeon to pursue surgery for this. I live in the midwest but am willing to travel for a doctor that has a lot of experience and knowledge. I fear that I have arterial involvement with my bouts of lightheadedness and blackouts. I also have weird sensations in my ears, when I swallow there seems to be pressure going to my ears and a whooshing sound/sensation.

I have my original CTs from 4 years ago, I did have Brain/C spine MRIs done last year, no mention of Eagles (for migraines, pain, numbness in extremities ordered by my neurologist). There was no mention of the SH but I don’t know if they would be useful for a more recent look. I also had a plain film xray of my neck done for neck pain in March of this year, that doctor does not know of my elongated and ossified SH, but the xray came back with a note about elongated and calcified SH ligaments with nothing else identified as a cause for pain.

At the time of my CT - they noted that one side was elongated to the base of my tongue. That was 4 years ago, so I am sure that is why I am now having trouble swallowing.

I am getting ready to check into Dr. Samji and Dr. Cognetti. I also have the name of a couple of doctors in Florida, but I think they have only done a handful of these surgeries.

I would welcome any advice about how to proceed, if I would be better off getting a new CT scan or if the scans I have now are at least enough to get me scheduled with a surgeon for a consult. I really don’t want to go through the doctor mill again, I am ready to address this head on but with an experienced doctor well versed in Eagle’s.

2

Hi Tuskgirl, and sorry to hear about your very long and painful journey… sadly nothing new with ES, but that’s no consolation!
There was a useful discussion recently about what some of the docs like to see before you go to visit them:

A CT with contrast could be useful to see if there is any vascular involvement for your peace of mind etc. as you might be having some vascular symptoms- but it seems that not all the docs need them. Hope this helps and hopefully others can chip in with this! Dr Samji and Dr Cognetti certainly seem to be the most experienced with this, so it’s good if you’re able to travel to see either of them.

3

Go to Dr. Cognetti.I’m lucky my ent diagnosed me after 7 months and he immediately called Cognetti

4

Thanks Jules! I will definitely call both docs and get the ball rolling.

5

Do you know if there is a long wait in general to get into Cognetti? I have waited this long, I am just trying to plan for it. I plan on calling them to get the ball rolling.

6

I don’t know about Dr. Cognetti as Dr. Samji did my surgeries, & I can’t say enough good about him & his office staff. I had no trouble getting in for appointments (i.e. no long delays) & my surgeries were scheduled in a timely fashion (he only does 1 side at a time w/ a 6 month gap in between).

You mentioned putting off surgery because people who’d had ES surgery complained that their pain came back post op. I will agree w/ that but must say that the extremely slight amount of pain I have now is occasional & slightly annoying compared to the debilitating pain I had before surgery. For me, surgery was totally worthwhile.

Glad you’re ready to take the next step. I think you will find having your styloids & calcified ligaments removed life-changing for the better!

:slight_smile:

7

I was scheduled 6 weeks out from first call. However, I called every 3 days to check if they had a cancellation. They put me on a priority list and I was able to get in within 2 weeks. Talk to them and let them know your situation.

8

If you are willing to travel to Philadelphia, I highly recommend Dr. Newman at Penn. He does have EAgle’s experience and he is a gifted surgeon.