Got my surgery last Friday with Dr Cognetti at Jefferson University Hospital.
I'm nervous to give any definite feedback on what it did or did not do for me. My last 2 surgeries (Shoulder, and rib resection) had me feeling Much better for the first week, followed by all the symptoms suddenly coming back much, much worse.
So far, I'm not gagging, I can look down without forgetting where I am, and there's no feeling of a bone stuck in my throat. The stroke symptoms have felt much better since I woke up from anesthesia, but again, they did the last surgery when I couldn't use my neck or do much..
I had an external approach surgery, and Dr Cognetti removed a 3cm+ calcification from my hyoid as well as severed the "thick band" that was connecting it to my styloid. He decided Not to shorten the styloid tho, stating that is was fairly small and he suspects it may not even be fully attached to my skull. This is a little concerning, but I'll just have to wait and see what happens. I'll be discussing this during my follow up this Thursday.
The staff at Jefferson was just as helpful, and patient, and kind as last time. I didn't feel rushed or pushed through the system as I was prepped for surgery. Thing were a little hectic as they were trying to squeeze everyone in before the blizzard hit, but they didn't take it out on me.
The anesthesiologist and a few other random people in scrubs stopped by to quiz me on my symptoms and watch as I turned my head and suddenly went all mush mouth and twitchy. They said they had only read about ES and were interested to see a patient with an actual diagnoses. The anesthesiologist apparently used to be in neurology and was especially excited to see it in action. Everyone was also very understanding and cautious about my limited arm use and ROM. They tagged it with a "Limb Alert" bracelet so no one would pull it or lift me by my right arm when I was unconscious. (Other hospitals have gotten frustrated with me not grabbing things with that hand, or wanted to pull and move me by my bad arm, resulting in A LOT of pain).
I didn't get put under until I was already on the operating table, and the surgical team joked with me as they prepared and answered my hundreds of questions about their equipment and what was going to happen.
For some reason, I wake up form anesthesia ready to fight. After the shoulder surgery I woke up yelling about Physical Therapy and trying to pull out my IV.
Luckily, this time I just shot up gibbering and convinced I was late for surgery. The nurse calmed me and I went back to sleep. I may have pulled an abdominal muscle during this, as my whole chest and stomach ached when I woke up later, and I found it almost impossible to sit up due to the pain in the front of my neck. I could barely roll over much less bolt upright!
The recovery staff was very kind as well (Again, really nice change of pace and very different from my last surgeries), although in a bit of a hurry to have me up and out before the snow started. Inflated airmattresses were being wheeled in for the staff to sleep on and everyone anticipated being stuck.
It was SO hard to swallow because of the pain. My neck felt out of control. I tried to get the recovery nurse to up my medication a little so I could swallow my pills later. She wasn't into that idea and instead crushed up my pills in apple sauce and told me to get my pants on.
We left the hospital just as it started snowing. It didn't stop for another day.
The first night was tough because of the trouble swallowing. It was very hard to sit up, and I had to lift my head by the hair to move it around the pillow. My back, chest, and abdomen Really ached as well. I can only guess it was due to unused muscles being worked since I was Finally able to straighten my neck without rope like muscles pulling it down. That and the brief attempt to escape from my recovery gurney.
I wound up being stuck in Philadelphia for an extra day and half, waiting for the snow to stop and for the highways to be cleared. The highways in Maryland were declared under "a state of emergency" and we couldn't have attempted escape if we wanted to! (Phillie got a little over 2 feet of snow, my house back in MD got buried under about 3 feet!)
I'm slowly regaining my voice. It's becoming less painful to swallow. The first few days I was so amazed at the change in my posture and how much better I felt. My speech is far less slurred and I'm able to keep a better tempo. I'm already off of the pain pills and starting to try and do more things. Tonight, I was even able to cook a meal for my family, which I have been unable to do for over a year now!
Unfortunately, the neck and shoulder cramps are coming back and it's becoming harder to hold my head up and straighten my back. It's still early tho, and I'm hoping I'll be able to get out of this vulture pose again soon!
Hey, it's great to hear from you. Wow, you've made a lot of progress in just a few days and already off pain meds! That's fantastic. I hope your progress continues and that the rest of the issues are resolved as much as they can be. And I'm glad you got through the blizzard ok.
Just to encourage you, healing is a bit of 3 steps forward, 2 steps back, but the net result is a positive gain. Be patient w/ your body. This surgery truly takes 6 months to a year to fully recover from. I had my second surgery last Aug. I'm having a little recurrence of neck pain at the moment but am hoping it's nerves healing as my face along my jawline is still numb as is my neck around my scar. Since these problems also occurred after my first surgery & all feeling has returned (it's been a year & 3 months), I continue to believe my current numbness & pain will resolve in time as well. The biggest issue is that you need to listen to your body and take it easy for at least the first month even if you have days where you feel good.
I'm really glad you've been able to stop the pain meds so soon! Don't be afraid to start them up again, though, if you start to have pain again. This isn't about being heroic, it's about getting well.
Sounds like you had quite an adventure on the days around your surgery. Glad you got home safely and have seen positive changes.
Gentle hug to you and prayers for healing being sent your way.
:)
Thanks for the quick and encouraging replies! I’m surprised as to how quickly the surgical pain is resolving, too. I was, and still am, ready for the long haul to recover to a point where I could accurately notice any changes at all.
Isaiah-
The pain meds stopped largely because I ran out of the dose I got from surgery, although it seems wise to discuss getting more for my recovery when I talk to Dr Cognetti. I am fresh out of heroism and in escape from hell mode!
This is also good advice to take it easy, it’s very hard to not try and jump back into doing Things. Anything, cleaning, going on car rides, wearing shirts with straps, heavy coats, swiveling my head around, etc! I just want this nightmare to be Done! At the same time I’m terrified I’ll mess it up and wind up right back where I started, gagging and laying on the floor. It’s forced me to take things very very cautiously.
I’m glad to hear your symptoms are finally starting to work themselves out! And nerves are funny things. They don’t like to be rushed. The waiting to see what develops is killer.
In the “2 steps back” phase, when did this begin for you? Did you have stroke like symptoms, and did those come back?
Those are the ones I’m hoping most of all that I can get rid of. I’d like my brain to be functional enough to keep fighting for treatment, an maybe be able to drive myself to my appointments!
I am glad to read your update. I have not gone through a surgery for this area yet so I don't have any past experience to offer for comfort (I have only gone through two surgeries for Endometriosis... for which I am thinking the recover is no where near as tough as for neck), but I am inspired by your courageous spirit and humor always. Sending well wishes your way for continued healing and that no symptoms develop/come back!
Good news that you've got through surgery- shows how important it is to not give up! I hope that you continue to improve- as the others have said, don't overdo it; it's so easy to do when you've not been able to do so much for so long...
I had some funny vascular symptoms which went away within a couple of days of surgery (I think once the swelling went down) and the really nasty symptoms thankfully have not returned, although I think it's more to do with jugular compression than carotid which yours sounds like, but hopefully you won't have any return of the stroke like symptoms. I have also noticed in the last few weeks that the nerve pain has almost gone the side I had operated on- 8 months ago! I eased off on the painkillers, but found the other side became more painful- obviously how much more painful it's been getting was masked by the painkillers, but I'm hopeful after the second surgery it'll go as well! We've had members come back after a year to say that their symptoms have gradually improved, so patience is definitely needed.
Thanks for letting us know, and for sharing your experience, it's really helpful for those waiting for surgery. Keep up the sense of humour and hope that you continue to notice improvements!
I think my 2 steps back are related at least in part to stress. I just spent a month w/ my sister as we nursed our mom during her dying days though my neck stuff started before that (or maybe it never went away, but I began noticing it more when I was under stress). Now that she's gone, I'll be interested to see if my symptoms retreat. I never had stroke-like symptoms although before my first surgery, I had some weird heart stuff, breathing issues & dizziness when I did really vigorous aerobic exercise. It was pretty scary. Obviously, I cut out the really vigorous aerobic stuff. About 6 months after my first surgery, I began to have symptoms again (dizziness & heart palpitations) after riding my bike. My second surgery was scheduled for last May, but a week prior, I had a bad cycling accident (maybe due to the dizziness issue?) which resulted in a head injury & the acquisition of Meniere's Disease in my left ear (side effect of my head injury) and had to postpone my surgery for 3.5 months. Now when I try to do even light exercise, my hearing gets wonky from the Meniere's. I'm trying to learn what types of exercise I'm able to do going forward. I do feel pressure in my neck where my left styloid was whenever the Meniere's symptoms start up, but I'm having trouble convincing either of the 2 ENT docs I've seen (my surgeon & his associate who's the hearing specialist) that the neck pressure is somehow related to the Meniere's symptoms. I feel like I'm back to the "ankle bone's connected to the collar bone!"
There have been several people on this forum who've had terrible vertigo w/ their ES. At least one wrote that she went to PT for her vertigo problem & had exercises she did at home which helped the vertigo to resolve within several months after her ES surgery. I think she was in your boat prior to surgery - barely able to function. Perhaps the proper type of PT would help you to recover more completely.
I agree w/ Jules & Bella. I love the way you present your perspective on all this! You have a great sense of humor. That's a gift when life is causing despair & frustration!
SnappleofDiscord said:
Thanks for the quick and encouraging replies! I'm surprised as to how quickly the surgical pain is resolving, too. I was, and still am, ready for the long haul to recover to a point where I could accurately notice any changes at all.
Isaiah-
The pain meds stopped largely because I ran out of the dose I got from surgery, although it seems wise to discuss getting more for my recovery when I talk to Dr Cognetti. I am fresh out of heroism and in escape from hell mode!
This is also good advice to take it easy, it's very hard to not try and jump back into doing Things. Anything, cleaning, going on car rides, wearing shirts with straps, heavy coats, swiveling my head around, etc! I just want this nightmare to be Done! At the same time I'm terrified I'll mess it up and wind up right back where I started, gagging and laying on the floor. It's forced me to take things very very cautiously.
I'm glad to hear your symptoms are finally starting to work themselves out! And nerves are funny things. They don't like to be rushed. The waiting to see what develops is killer.
In the "2 steps back" phase, when did this begin for you? Did you have stroke like symptoms, and did those come back?
Those are the ones I'm hoping most of all that I can get rid of. I'd like my brain to be functional enough to keep fighting for treatment, an maybe be able to drive myself to my appointments!
Can you tell me how you’re doing now? How was the surgery with Dr. Cognetti, I’m thinking of seeing him, I’ve been diagnosed with Eagle Syndrome.