I don't want to sound ungrateful. I am a lucky lady to have gotten surgery relatively quickly after I self-diagnosed. I traveled cross-country to Dr. Cognetti in Philadelphia. I was thrilled with the results of the surgery. I still am very happy that I had the surgery, and very thankful to Dr. Cognetti for taking my case.
There is no doubt in my mind that I'd have the surgery again. The results were miraculous- I went from horrible, intense pain and an overall sense of being very sick to feeling practically normal. Surgery was definitely the answer for me.
Unfortunately, I do still have symptoms. I want to feel 100% perfect, and I don't. Some of the symptoms are probably unrelated (neck pain, over-tight muscles in neck and shoulders, due to herniated discs). But, whenever I do physical work, I pay for it. My body doesn't tolerate physical activity and work. Things that bother me are simple, like vacuuming, cleaning the house, going on a walk, etc. Basically, anything other than sitting around all day will bring back my symptoms.
The eagle related symptoms that I get are ear pain and sore throat, with a feeling of swollen glands (not sure if they're actually swollen). The symptoms are extremely mild compared to what I used to experience. They're almost more of an annoyance than anything, but they do make me feel like I have a cold and like all I want to do is sit around at home. Eating popsicles helps, but I really don't want to sit around eating popsicles forever.
I'm not sure if I'm still in the recovery period, or if this is it. Even if I'm stuck with this from now on, it's wonderful compared to pre-surgery. I just really don't want to be sickly and always sitting out. I'm 36. Is this really it for the rest of my life?
I hope it isn't either. You've been through a lot. I know pain just wears you down. Even when it gets better, the fact that you're STILL in pain is hard to take. It's hard for other people to understand that too, from what I've found. I know it has to be super hard to go from a really active person to one who can't do much physical activity at all.
I sure hope you can find more relief and can get a somewhat normal life again. I wish I knew what to tell you - pain is just so hard to take over a long period of time. Can Dr. Cognetti give you any insight on the type of pain you're having and if that's common after surgery? My best to you Eagleheart.
Thanks for the kind words, Heidemt. You've been a strength to me throughout this unwelcome adventure. I hesitated to complain because most people on this site are still in the terrible, horrendous pain that I have escaped. I also wondered, though, how many people who had successful surgeries might be in the same boat I'm in.
You're right, too, that it is hard for other people to understand. I think my friends and family are sick of it. So am I.
Unfortunately, I don't think Dr. Cognetti will have much to say about it. I got the impression that he's a genius when it comes to the surgery, but he stays focused on that aspect of it.
I'll try to come on here every 3-6 months and give updates just in case I eventually completely recover and can share that good news with the people who follow me.
I feel exactly the same way! I realize my second surgery was only 2 weeks ago and the results have been tremendous. But I don’t feel great. The lump feeling is there (intermittent now) still have a stiff neck. Tongue feels “sprained” sometimes. I do have bulging discs in my neck that may be part of the problem but I am just tired of the pain, too.
I, too, would go back to Dr Cognetti in a heartbeat and do the surgery all over again. I truly believe he is a genius in his field. He has helped me so much and I am very very grateful.
Wish I had some miracle cure for all of us, but I guess we will have to settle for being able to vent to people that we know really do understand since most of our families (while trying to be supportive) just don’t get it.
I'm sorry you are still not 100%! How frustrating :( I want to thank you for posting this, though. I want to hear these experiences, good or bad! It ALL helps!!!!
Discouraged, I'm sorry to hear that you're still not 100%, either. I really hope that as time passes you'll feel better and better and not be left feeling like I do. You're right, though, that it's nice to vent to people who actually understand. My family is definitely sick of this. ("Sick" of this. Kind of ironic, right? I'm sick of this, too.)
Tee, I'm glad that you appreciate this post. I was hoping that people would find it informative and useful. I really hope that I'm the exception, though, and not the rule. Hopefully most people on this site will get to 100% and forget all about this nasty condition. Also, I hope my post won't discourage people from having the surgery. There is no doubt that it worked a miracle for me.
Discouraged, I hope you just need a little more time to recover.
Eagleheart, I wish we could find a way to properly communicate to relatives how badly we feel in a way that they can truly understand. I am doing well now, and have energy though my ear still has shadow pain that sometimes comes back, but I think it seems to be getting less with time 8 months out.(You know my history) Lucky for me my spouse understands and is patient. The rest of the family not so much, but at least they don't live with me.
I really pray for all of us, especially for those of you who are young with young families. You are truly the warriors. I don't know what I would have done had I had this when I was younger with children to raise and an awful first marriage to deal with. I also pray that one day surgery will be more accessible, reliable and if not maybe there will be a safe medication or procedure that blocks the pain. discouragedwithnoDX said:
I feel exactly the same way! I realize my second surgery was only 2 weeks ago and the results have been tremendous. But I don't feel great. The lump feeling is there (intermittent now) still have a stiff neck. Tongue feels "sprained" sometimes. I do have bulging discs in my neck that may be part of the problem but I am just tired of the pain, too.
I, too, would go back to Dr Cognetti in a heartbeat and do the surgery all over again. I truly believe he is a genius in his field. He has helped me so much and I am very very grateful.
Wish I had some miracle cure for all of us, but I guess we will have to settle for being able to vent to people that we know really do understand since most of our families (while trying to be supportive) just don't get it.
Emma, I'm so glad that your spouse is understanding and patient. That really does make a huge difference.
I do have children at home but I must say that they are very good kids and quite helpful. I am blessed.
Discouraged, I really think and hope that you will continue to feel a lot better. Time helps. I still have hope that maybe I'm still recovering, too, and that in a year this will all be just a memory. I'm not sure whether or not that's realistic, but for now it keeps me happy.
Here's a funny question: Anyone knowingly have a cold?
I wasn't aware of myself having a single cold the whole time I had eagle syndrome. I think the cold symptoms just blended in with the everyday symptoms.
I just got a stuffy nose today and I'm hoping that my rotten past week was just a virus and not eagle syndrome. The symptoms were in the same areas, but that's common for a virus: sore throat, ear pain, muscle aches.
I am so very happy that a least you did find some relief from your styloid surgery 8 months ago. Hang in there and fight with us! I am 3 months post-op and am still struggling with some residual pain like right ear deep pain, tinnitus, right sided eye, mouth and facial pain. Of course, I have been dealing with excessive sinus and allergy problems for the past two months and I feel that may have aggravated the other issues. After an inconclusive RAST test, I am scheduled for the shoulder and back allergy scratch test. I hope treating these issues calms my other problems down. I was told it takes months and months for the nerves in the throat to heal. Like you, I pray that in a year's time this is resolved to a tolerable level. I also don't regret having the surgery because it seemed logical that this thing was causing my problems; I saw it on the scan as an actual physical cause of my pains; and it did fit the pattern. My surgeon did tell me some nerve damage may have already happened, so I was prepared to possibly have continued problems after surgery. So, that is where I am. Of course that is not to say that the herniated cervical discs and slipped lumbar disc may also be the cause of my misery. Sometimes I am so confused about having to deal with whole ball of painful wax and how these things may be irritating or be the actual root cause of my symptoms.
I agree with you, it is a really battle to function everyday with those lingering pain problems. So energy sapping and discouraging that you don't quite feel normal and the average person has absolutely no idea of what you are going through because they don't see the physical ailment. Sometimes I feel like a freak with these crazy symptoms but I try to calm myself down and do my best with what I have been given to function at my pace and tolerance in the ordinary world. May all of us still suffering with residual pain find some solution to treating and managing our continued medical issues. Take care and God bless us all and give us the strength to keep fighting!
Viperbone, thanks for the very effective pep talk. I actually feel much better now. You're right that it could still be nerve damage healing, and that can take a very long time. I'm sorry that you're having a lot of pain still. Feel free to complain to me anytime. Heaven knows I do more than my share of complaining. :)
Eagleheart, something just dawned on me. I've been preoccupied lately because I've had 3 surgeries (1 for Eagles) in the last 8 months so I haven't really been paying attention to other things.
After my second Eagles surgery at the Cleveland Clinic, I had pain around my jaw/neck area that kind of felt like a burning, tingly type pain. It wasn't horrible, but I figured it was just something I had to live with. I've had it since the surgery in March 2012, so I thought it was permanent. Anyway, I've just noticed this past week or so that it's lessened quite a bit. It's still there some, but much less than before. This is a year and 8 months ago that I had that surgery - so there's hope. Nerves can take a long, long time to heal.
Wow yes I feel the same.I’m 39 and four kids and a husband.everyday activities have gotten to be a chore. I loved working out and cleaning…I also have a very physical job.the symptoms seem to get worse everyday.
Hopefully you will feel better soon
I know your pain man, my surgery took away the worst symptom I had which was extreme jaw tension, I too felt that I was completely fixed but was back on pain meds after about 7-9 months. I can work but like you said, you tend to pay for it...still better than pre surgery but not "fixed" ..