I wish you good health! My surgery was not external so it is hard for me to compare. I feel that my recovery was excellent. The first week was a challenge and I had the same symptoms as I did prior to surgery, but as time went by they gradually went away. Hang in there.
Agnes said:
Hello to everybody,
I'm just the second day after surgery- it was external, and to be onest I don't see any results right now. My biggest problem was sinus pain and pressure and this symptoms still exist. My suregon said that the styloid was about 5,5cm, he removed 3,5 cm and still remain about 2 cm- but this is normal and can't give any pressure more. There were big pressure on internal carotid and mandible. I'm wonder if it's possible to recover with time, or the positive results should be immediately after surgery? I read Your post and You have quite immediate relief. Morover I have swollen neck and chin and have problems with mouth nerve and muscles but this should dissapear with time. My most fear is that the surgery didn't hep even if such a lot of styloid was taken off. Thank You for all Your comments, Agnes
I felt better from the intracranial hypertension symptoms quite gradually over a few days to 1 week- I'd expected that to be instant, so was surprised to not wake up feeling totally different! 4 weeks post surgery now, and the IH symptoms are so much better, and is the dizziness and temple/ ear pressure on the operated side. But the pain I've had (I presumed the styloid was pressing on some nerves giving me jaw pain and toothache) is still there. I also have some numbness, tingling and at times ear ache around the operation site, but that is gradually improving. So I hope that your symptoms do improve over the next few weeks, and try not to worry, as it's not always instant.
Like you, I don't see any improvement in my symptoms right now. My neck is swollen and I have some discomfort but have not needed any pain medication. I hope my symptoms will disappear once everything has healed, but I am not sure how long the healing process will be.
Good luck to you, and please keep us informed on your progress.
bear_al , all of us are different. Intraoral and external also pose different problems. Post op recovery can be excellent and pretty quick or much longer. It does take time to know for sure.
Each person is different and each surgery on same person is different. Those who have had bilateral issues can tell you that. My surgery was intraoral by a doctor who had only done one previous surgery. I searched for an experienced physician but could not find one. I found this site 4 days before my surgery, but was in too much pain to put it off to fly to Philadelphia. My doc had one thing going for him. He had ES himself and understood a small bit of my pain. His symptoms had been different from mine but still painful. After searching and interviewing an experienced cancer ENT who pretty much dismissed my pain and indicated that the procedure was nothing, I decided to go with the experienced ENT who had done at least one surgery, but he had researched it for himself prior to allowing his doctor to operate. I felt that we had a connection and he could empathize and he also knew the risks. I am 2.5 years past my surgery and it was successful. However, it took me 11 weeks to feel better. It took more than 4 weeks for the stitches to dissolve and the swelling to go down, and another 7 weeks for the stick in my throat feeling to go away. Then sometimes the pain would come back. My doctor had warned me that the recovery is not a smooth line forward. Nerves are difficult to predict, some of us continue to improve for 6-9 months. Most of the symptoms do improve within the first 3 months, but some take longer. I would expect some improvement after the swelling is gone and the stitches are gone within 5-6 weeks, but the improvement can be gradual or quick.
Thank you for the information, Emma. It is very useful in helping me set my expectations.
emma said:
bear_al , all of us are different. Intraoral and external also pose different problems. Post op recovery can be excellent and pretty quick or much longer. It does take time to know for sure.
Each person is different and each surgery on same person is different. Those who have had bilateral issues can tell you that. My surgery was intraoral by a doctor who had only done one previous surgery. I searched for an experienced physician but could not find one. I found this site 4 days before my surgery, but was in too much pain to put it off to fly to Philadelphia. My doc had one thing going for him. He had ES himself and understood a small bit of my pain. His symptoms had been different from mine but still painful. After searching and interviewing an experienced cancer ENT who pretty much dismissed my pain and indicated that the procedure was nothing, I decided to go with the experienced ENT who had done at least one surgery, but he had researched it for himself prior to allowing his doctor to operate. I felt that we had a connection and he could empathize and he also knew the risks. I am 2.5 years past my surgery and it was successful. However, it took me 11 weeks to feel better. It took more than 4 weeks for the stitches to dissolve and the swelling to go down, and another 7 weeks for the stick in my throat feeling to go away. Then sometimes the pain would come back. My doctor had warned me that the recovery is not a smooth line forward. Nerves are difficult to predict, some of us continue to improve for 6-9 months. Most of the symptoms do improve within the first 3 months, but some take longer. I would expect some improvement after the swelling is gone and the stitches are gone within 5-6 weeks, but the improvement can be gradual or quick.
I am nowhere near feeling normal again, two weeks after my surgery. I still have swelling in my neck, particularly near the area of the incision. I do not have pain, but am very uncomfortable. I am, however, able to eat regular meals. Hopefully I will continue to heal.
Best wishes for continued recovery and healing.
Al
Feel almost normal again!! said:
I had surgery in March 2013 and the second one in October 2013. I have to be honest I did not rest very well after surgery. I stayed with a friend I hadn't seen in over 10 years and we honestly just did the tourist thing. After I had surgery #1 I felt so much better immediately after that we ran around and toured some museums and shops in philly. We had a great time, although I felt quite tired! Took a few weeks off after I got back home and began to slowly feel better every day. I still wasn't back to "normal" tho and wanted to get the 2nd surgery over. I went back to philly dr Cognetti for surgery #2. Will admit the 2nd surgery was a lot rougher than the first, this one took me a few weeks to feel like getting out and doing things, but it did gradually get better every week. Honestly in that time I had a lot of family stressors going on and I think that kept me less focused on getting well. Things settled in life and about a yr after my 2nd surgery I honestly can say I feel very little of the ES symptoms. My scars are not even visible unless I lift my neck and point them out to people (and I don't have a lot of "extra skin" to hide them!) Dr Cognetti did a phenomenal job. All the hospital staff were amazing. I never felt like just another patient or person off the street. I always felt they sincerely cared and wanted to help ME! I will warn you the ONLY part of the entire thing that is not painless is the preop lab work. That is the slowest process and both times we were there it took Us FIVE hours to get thru it. It seemed to be a long wait times between people we needed to see. Maybe they have streamlined that process. I am hopeful for all future patients this is remedied, but despite this I would certainly return to Jefferson and Dr Cognetti. They treated me better than any doctor or hospital ever has and I would trust them with my life. So be confident with the hospital and the surgeon. I try to not place Dr Cognetti on a pedestal but he is almost "godlike" in his skill to help people with eagle syndrome get their lives back. But when it's time for preop testing....just saying... bring a lunch.... If you have any other questions please feel free to add me as a friend and send PM. I am an open book about this stuff!! (no I am not a family member of dr. Cognetti. I am a real patient that he really fixed!!) any questions, please let me know. I'll do my best to answer. Hope your surgery goes well.
I have had mvd surgery, knee surgery, and major ovarian cancer survery. I have been given the go ahead to get the eagle’s surgery.
two things…we are an impatient species. we want to be all better the day after surgery. recovery is a slow process…our bidies are not machines. eat v ery nutrious foods, get lots of rest (some of us need more than oth8ers), and take your pain meds if you need them especially the first couple of weeks.
If you are not having complications your swelling will go down. IF you feel a little tiny bit better everyday then you are healing. I always find it takes a good year to feel totally recovered…there was something in there that is gone and all of your nerves and tissues have to adjust. be patient with yourself.
QUESTION: If you have TN and have had MVD surgery and still have “atypical” pain, would you risk the es surgery knowing it might or might not help?
I do realize I need to be patient. I do have some improvement in the swelling, but the pinching feeling I had prior to the surgery has not yet been alleviated. Hopefully it will, once everything heals.
I do not know the answer to your question, since I have not had the other major surgeries as you have. It all comes down to your faith and trust in your doctor, and his assessment on how likely the ES surgery will help with your symptoms.
he said the only real way to diagnose eagle’s is to do the surgery and see if the pain goes away, so I feel like I am playing another “wait and see game”. I hope you do start feeling better soon. I didn’t mean to sound rude, was trying to be supportive…recovery is always hard.
I did not feel that you were being rude. Since we are all supporting one another in what is relatively uncharted territory, it is important for us to share our feelings openly, and I truly appreciate your candor.
Hope said:
he said the only real way to diagnose eagle's is to do the surgery and see if the pain goes away, so I feel like I am playing another "wait and see game". I hope you do start feeling better soon. I didn't mean to sound rude, was trying to be supportive...recovery is always hard.
I wish I could go to the dr. you went to but I am in an insurance HMO so have to stay in my area. and I would never be able to pay for a surgery like that out of pocket.
I'm no expert, and don't know fully what MVD entails, but I would presume the risk of that surgery is the same if not greater than ES surgery, which is often a reason for putting people off surgery. But you've gone through that, and although it hasn't worked, presumably you don't feel worse off for trying it?... It's a hard decision, as with both these types of surgery, there's no guarantee of success either... it's a dilemma everyone who's had surgery has had to face. You're the one who lives with the pain daily, only you know how bad it is. If it's very bad, then any chance of an improvement pushes us into the surgery. Mine wasn't so bad, but it was the scary vascular symptoms which made my mind up. I have GPN and TN type pain- not the 'electric shock' pain, but constant aching. I'm not quite 6 weeks post-surgery and am still on the painkillers for that; I had a week where it was worse, and I was really worried, but it has settled down again now, and is okay. I think some nerves were stretched in surgery too, but that's improving daily. I'm really glad that I had surgery. Only you can make the decision, but we're happy to listen and support you in your decision here, if we can!
You mentioned that you'd read a lot of scare stories- there have been some members on here who have been through surgery only to find no improvement, and possibly a couple I can think of who were worse as their surgeon wasn't experienced, but there haven't been that many I've read. Maybe the stories you've read might be people who posted early after surgery, so you don't get the full picture- they could be a lot better off later. And often people are quick to post in panic needing support, when those who've had successful surgery just quietly get on with their life, I don't know, but certainly that picture of lots of scary stories doesn't seem to be repeated on here- not by people posting anyway.
Praying that you make the right decision about surgery, and that you have a doctor you feel confident with.
thanks Jules. That’s kind of how online support sites seems to go. yes sure, I believe MVD surgery is more dangerous as they make a hole in your skull and work right inside your skull in the brain stem. It will be hard to go through that if there is no relief at the ohther end, but nothing ventured nothing gained right? I wonder if it will resolve my TN or just the atypical TN…the constant stuff. guess I’ll find out. My doctor has done about two a year for ten years, sounds like he knows what to do. fingers crossed.
Sorry Hope- I might have misunderstood- have you had MVD already, or are you waiting for it? Be good if they could do the styloidectomy at the same time!
The styloid is a boney process coming from the base of the skull, and it has ligaments attached to it going to the hyoid bone and to the tongue muscles. Either the styloid process can be elongated, the ligaments attached to it calcified, or both.