A week out from surgery with Dr.Cognetti

General
1

Hello,

I am new here, although I have seen this forum many times during my search for relief and help. It was actually here that I came across Dr.Cognetti's name. He ended up doing surgery (the external approach) on January 10th. He and him team are great. I have been more than happy with the care I received and Dr.Cognetti is incredibly knowledgeable and skilled. I wouldn't hesitate to recommend him to anyone.

As I said, I am a week out from surgery. I actually had to have my left styloid AND a small portion of my hyoid bone removed. My styloid was very close to my spine and the hyoid bone was rubbing against my spine as well when I would turn my head to the left and swallow. Dr.Cognetti was the only doctor of many that made the connection with my hyoid bone causing problems.

For those having gone through the experience, how long was recovery time? I still have swelling right under my jaw area and around the incision. It is quite sensitive to touch and my jaw on that side is stiff and seems a little "off" like it doesn't want to open the way it used to. Yawning hurts, partly because I think I am hurting the muscles by trying NOT to open my jaw so much. I know Dr.Cognetti did not do much moving around of my jaw so it doesn't have anything to do with that. I am hoping it is just swelling and irritation on that side? Did anyone else with the external approach have jaw pain after surgery? Did it resolve? I DO have pretty bad TMJ disorder...but never had pain upon chewing, opening my mouth, or yawning prior to surgery. The other thing is my neck feels VERY tight on the side of surgery and I know the muscle near the incision feels pretty inflamed and swollen. Dr.Cognetti felt like all of this would resolve with time and I felt good about that, but it would be good to hear from others who have gone through it!!!

Has anyone else had to have their hyoid bone cut? I feel like that is something I haven't seen too often on the forum?

Thanks for any feedback you all could provide!

1 Like
2

Hi Star…congrats on having your surgery! Just a consideration…maybe you could try going for a massage, and have them work on your traps and pecs, just to relax the area in general. I haven’t had surgery yet, but I do get temporary neck relief from deep shoulder massage. All of these things are connected, and sometimes relaxing one can benefit another.
Let us know how you do as time goes on! Best wishes…

3

Hi Ang,

Thanks for the suggestion. I will definitely consider a massage as soon as I feel a little more healed. The area is still tender and I would hate for a message to make anything hurt more at this point! You're right, everything is connected. All of my problems started after a bad neck adjustment and since then I've been experiencing the Eagle type symptoms and TMJ pain. One thing that I found interesting was that any time a massage therapist would do myofacial release or stretching exercises on my neck, the muscle pain in my neck would worsen. Do you have any issues like that? I always wondered if it was due to the styloid, so I guess I will have to see once I do get a massage again!

4

Dr Cognetti removed my right styloid last march and then my left last October. I had the same issues after surgery. Jaw was very tight, hard to open my mouth, not able to chew well. But it didn’t take long for that to resolve. Seemed to be maybe a couple weeks then it got better every day. I am so happy with all he has done for me and has made my symptoms so much better. I still have some issues but it’s so much better than it was before. I will be forever indebted to Dr cognetti and his team.

As for the TMJ I’ve never had issues with this so you might want to see if that might be flaring up, I’m not sure.

I hope you are feeling better soon.

3 Likes
5

Dear Star,
Congrats on your surgery. I pray in time the surgical pain will subside for you. Hang in there and keep posting when you feel up to it. I’m planning on seeing Dr. Cognetti and his team. I’ve been dealing with Eagles for at least 20 years and didn’t know it as I had spinal complications in my cervical vertebra. Until I had my Spinal Fusion ( C-3 through C-7), I didn’t know for sure what symptoms would be left over after healing from the neck surgery. Now I know all the MISERY of Eagles Syndrome! : ((
Finally a Soft Tissue MRI with Contrast in May 2012 showed my bilateral Styloid processes almost all the way to my Hyoid bone. I feel the Anterior approach in my spinal surgery probably exacerbated the growth of the bones? That has been known to happen? My list of Symptoms are Classic! I have Craniosacral & Acupuncture once a week. I do find it helpful. The Craniosacral Therapist also works on my shoulders and neck. My husband also has magic hands and is a Saint to have stayed by my side through all of my Nightmare! I already have problems chewing , smiling, swallowing, yawning is the worst! My voice has changed. I’m nauseated all the time, tension Headaches & Earaches 24/7 with Tinitis! Pain on turning my neck, and pain in the back of my tongue. So many symptoms, I’m sure I forgot a few? Hope for me is seeing a Respected & Competent ENT Neck Surgeon that can make me feel secure that they know what they’re doing! Thanks so much for your post and feel better every day!

1 Like
6

Hi Discouraged ,
Glad to hear from someone else who has had surgery with Dr.Cognetti. Did you also have the external approach? Did you find that your neck muscles on that side were very tight after surgery? I know my muscles on the surgery side were tight to begin with because I had a bad neck adjustment and since then they have been tight. This tightness is worse than before and I’m just hoping it’s from swelling that will subside with time. As for my jaw, I think part of my problem right now is that the neck muscles might be pulling at my jaw and creating some issues. I guess time will tell.
I’m happy to hear Dr.Cognetti has helped you so much. He seems to produce good outcomes for those who have had surgery with him. He’s definitely a very good surgeon who truly cares about his patients.




discouragedwithnoDX said:

Dr Cognetti removed my right styloid last march and then my left last October. I had the same issues after surgery. Jaw was very tight, hard to open my mouth, not able to chew well. But it didn’t take long for that to resolve. Seemed to be maybe a couple weeks then it got better every day. I am so happy with all he has done for me and has made my symptoms so much better. I still have some issues but it’s so much better than it was before. I will be forever indebted to Dr cognetti and his team.


As for the TMJ I’ve never had issues with this so you might want to see if that might be flaring up, I’m not sure.



I hope you are feeling better soon.

1 Like
7


Hi Crystal,

So sorry to hear about all of the pain and suffering you've been going through. It's so frustrating to suffer for years without an answer. That seems to be a common theme here it seems. When do you plan to see Dr.Cognetti? Do you live near Philly or will you travel? I was lucky enough to be 1.5 hrs away and feel so fortunate that such a respected doctor was close by. I can tell you that you won't be disappointed with Dr.Cognetti. He really listens to your concerns and doesn't rush the appointment. He knows his stuff and is confident in doing this surgery, which is such a relief when you are already going through something as scary as this!! I hope you get relief with the surgery, you will be in good hands with him!! Keep us updated on how things go with your appointment!!

Crystal said:

Dear Star,
Congrats on your surgery. I pray in time the surgical pain will subside for you. Hang in there and keep posting when you feel up to it. I'm planning on seeing Dr. Cognetti and his team. I've been dealing with Eagles for at least 20 years and didn't know it as I had spinal complications in my cervical vertebra. Until I had my Spinal Fusion ( C-3 through C-7), I didn't know for sure what symptoms would be left over after healing from the neck surgery. Now I know all the MISERY of Eagles Syndrome! : ((
Finally a Soft Tissue MRI with Contrast in May 2012 showed my bilateral Styloid processes almost all the way to my Hyoid bone. I feel the Anterior approach in my spinal surgery probably exacerbated the growth of the bones? That has been known to happen? My list of Symptoms are Classic! I have Craniosacral & Acupuncture once a week. I do find it helpful. The Craniosacral Therapist also works on my shoulders and neck. My husband also has magic hands and is a Saint to have stayed by my side through all of my Nightmare! I already have problems chewing , smiling, swallowing, yawning is the worst! My voice has changed. I'm nauseated all the time, tension Headaches & Earaches 24/7 with Tinitis! Pain on turning my neck, and pain in the back of my tongue. So many symptoms, I'm sure I forgot a few? Hope for me is seeing a Respected & Competent ENT Neck Surgeon that can make me feel secure that they know what they're doing! Thanks so much for your post and feel better every day!
8

Crystal, if voice has changed that may also be telltale sign of Thyroid disorder (I'd had Thyroid ablation done in '05 with Nodules popping up every chest xray I happened to get for ER visits for Pneumonia just by chance)...I asked for FNA Thanksgiving week and by Christmas Evethey found cancer-don't want to scare you but get Free T 3 and Free T 4 checked as wel;l NOT just TSH! here is a good site on Thyroid info: https://www.facebook.com/thyroidsupport

you aso mentioned MRI contrast...I had quite a few myself for Undiagnosed Lyme, which may have led to the Thryoid problems initially; anyways but thing is, I STILL HAVE HIGH AMOUNTS OF GADOLINIUM IN ME! 6 years AFTER MY LAST MRI WITH CONTRAST, I do NOT have Kidney disease or if I did/do, they missed it!
IF YOU HAVE HAD IMAGING WITH CONTRAST MRI'S AND FEEL SOME DERMAL OR ODD ISSUES THAT CONTINUE AND HAVE NOT BEEN DIAGNOSED-GET THESE LABS DONE, THEN IF POSITIVE GET THE DERMAL BIOPSIES DONE-NOTE THAT THESE ARE SENDOUTS FROM A LOCAL HOSPITAL NEAR YOU THAT HAS ACCOUNT WITH MAYO, TO GO TO MAYO-YOU DO NOT HAVE TO TRAVEL TO MAYO IN MN, FL OR AZ:
http://en.wikipedia.org/wiki/Gadolinium
http://en.wikipedia.org/wiki/Sclerosis_(medicine)
THIS CONDITION IS NOT ONLY HAPPENING IN THOSE WITH KIDNEY DISEASE; IT HAS HAPPENED IN THOSE WHO'VE HAD ! OR MORE THAN 1 OR MANY MRIS WITH CONTRAST-IT IS OUT THERE IT IS UNDER-DIAGNOSED AND NEEDS TO BE ADDRESSED! THERE are way more than 350+ peopel worldwide affected by the Gadolinium contrast
http://www.mayomedicallaboratories.com/test-catalog/alphabetical/G
http://www.auntminnie.com/index.aspx?sec=prtf&sub=def&pag=d...
also be forewarned that Gadolinium from MRI's may be causing brain abnormalities themselves, be safe and always ask docs is it truly necessary?! in my own case it is total overkill, they shouldv'e diagnosed my Lyme (causing the neuro issues, as well as the Eagle's) from the rashes and symtpoms, instead they filled me full with a lot of MRI Gadolinium contrast and now that I have digestive/bowel/craniofacial abnormalities, my throat is CLOSING!! I got this from a toxicologist recently:
the ultimate in advice..."you came to us you, found us to help you,there's just nothing theyare going to help you with; You HAVE to come to grips with that it ENDS here, you are not getting any further testing; you you've gotten several professional opinion and you dont need to get tests done!" They called in two psychiatrists to TALK to me as if THAT was goign to help physical manifestations of THMP (Toxic Heavy Metal Poisoning) and di NTO want my husband in the room, I put the kibbosh on that-we have the right to have ANYONE accompany us to a doctor visit!
this tells me they do not care if they harm us with contrast, I wish you the best, just research EVERYTHING before you let them do anything! I am still awaiting Eagles' opinions, I'd believe an xray/panorax before I'd believe someone just palpating the area, just sayin'! Good luck!
Cathy
1 Like
9

HI Star, THANKS for sharing...Just wondering how you are doing at the present time??

I am considering traveling to Dr. Cognetti as I have read such good things about him on this site.

10

Hi art4u,

I still have some post op discomfort as it’s still been less than 2 weeks. I’m not in a lot of pain, there are just things that are still healing. My jaw us still sore on the surgery side, I still have tenderness around the incision…I think from the muscle that’s underneath it being swollen. I have also noticed a lot of tightness in that same muscle. I think there’s swelling internally that may be causing it all. But it’s to be expected at this stage of healing. I have to start icing because I haven’t been good about doing that.
I would absolutely recommend Dr.Cognetti. He knows his stuff and is very confident in the surgery.

1 Like
11

I just posted on the main forum and then saw this … My surgery was 2 months today and still having some trouble nothing like before!!!
Swelling bad taste in mouth and ear discomfort . I was wondering if I was expecting healing to be too quick . Plus I wondered if I over did cause some of it got worse when I was extremely busy. Anyone have a thought ?

1 Like
12

Hi neckpainc,

I can’t answer based on experience since I am just under two weeks out from surgery, but I’ve seen on here that a lot of people still have residual pain for a while because of nerves taking a while to heal. Hopefully things settle down for you soon.

13

"I still have some issues but" can you elaborate?

discouragedwithnoDX said:

Dr Cognetti removed my right styloid last march and then my left last October. I had the same issues after surgery. Jaw was very tight, hard to open my mouth, not able to chew well. But it didn't take long for that to resolve. Seemed to be maybe a couple weeks then it got better every day. I am so happy with all he has done for me and has made my symptoms so much better. I still have some issues but it's so much better than it was before. I will be forever indebted to Dr cognetti and his team.

As for the TMJ I've never had issues with this so you might want to see if that might be flaring up, I'm not sure.

I hope you are feeling better soon.
14

http://en.wikipedia.org/wiki/Nerve_guidance_conduit some info on nerve regrowth, My own parotid gland surgery incision took many months to have normal feeling again.(negative for Sjogren's but diganosed nonetheless on sign and symptoms) Hang in there! It doesn't mean anything is wrong with the area, it just takes time to heal!

15

I always had a very large lump feeling in my throat. Sometimes felt like I was being strangled. That was constant before surgery and now is intermittent. Seems to bother me when I am very active. Bothers me everyday at work but not to the point it was before surgery. I still feel a few sharp pains on my left side (that surgery was in October). But again it’s nothing like it was before. Sometimes my jaw still aches. I don’t know if I expected all the pains to be gone or what but I’m definely happy with the surgery. I do have some spine issues so maybe I’m feeling more degeneration from that in my neck, I’m not sure.

I hope this answers your questions. I have pics posted on my profile if you want to look at them. If you have more questions feel free to ask. I’m willing to share all I can in regards to ES. We can all relate to each other in ways not one of our friends or family can no matter how hard they try. Unless you live this you really have no idea!

I hope you are feeling better every day.

16

If throat issues are still happening it would be wise to also have thyroid checked not just TSH but Free T 3 & Free T 4, IF nodules found, then an FNA (they found my cancer this way!)

Cat

17

What Doctor would check for that Cat?

18

Thanks I think I had all thyroid checked last yr when not feeling well and all was good . But I see dr cognetti for my 2 month check Thursday jan 30th. My family dr did all my thyroid tests. It is so great having support

19

I know they have checked my thyroid frequently due to all my complaints (throat lump, fatigue) but I don’t know what exact tests they ran. I’ll have to check. May be due to have more done. Thanks for the suggestion!

20

Deleone, either general/PCP or endocrinologist, just make sure to run every test past the websites devoted to Thryoid, like Thyroid Sexy and Mary Shomon's sites, like Eagels' Syndrome unfortunately there are discrepanceis within the Thyroid Community to getting good care!

https://www.facebook.com/thyroidsexy (gene lee nolin's site, Former Baywatch star Gena Lee Nolin released her book Beautiful Inside and Out: Conquering Thyroid Disease with a Healthy, Happy, “Thyroid Sexy” Life on October 8, 2013, and it’s a definite must-read)

https://www.facebook.com/thyroidsupport (Mary Shomon's site, very informative)

Cat