Doctor who quite suddenly canceled my surgery less than 48 hours out has suddenly changed his mind! Again!
He offered my the surgery again, and said he canceled because he wanted to talk about "lowering my expectations" and how surgery may not solve anything.
I thought this was weird, considering how much I Harassed him about a Plan B and what was next if surgery didn't work.. and him telling me worry about that after surgery..
Not a real confidence builders.
Luckily, right after that Dr broke up with me the first time, I called Dr Cognetti's office!
A few Herculean tasks to get Johns Hopkins to send my and a couple weeks later, I finally had my visit with Dr Cognetti today.
I went there Absolutely ready to fight to have my concerns heard, and my symptoms believed, and get some DOCTORING! I was friggin ready for Battle!
It turned out not to be necessary.
Dr Cognetti was very patient, already familiar with my records without me having to explain it all, and even had test images cued as talking points.
I have to say, he immediately threw off my strategic attack plan with how appalled he looked when I told him he was Doctor # 58 (his associates in training with him technically #59 and 60)
He asked about symptoms, onset, etc, then shoved a scope in my nose.
(He warned me he was going to do it, then quickly grabbed my head, stuck a finger in my throat and popped it in there in the style of pilling an angry cat. I was so surprised I may have bit him as I thrashed around! It's probably a good technique tho because I didn't even have time to clench or flinch.
Ps- The lidocaine spray is just for flavor apparently, and does nothing.)
As I tried to regain my senses, Dr. Cognetti pulled up my images. He explained the calcification in my neck, and how it was abnormal, and in a combination with the connective tissue between them was a probable cause of compression and nerve irritation.
He didn't use google.
He didn't say it was mysterious.
He didn't talk down to me or question if my symptoms were real or exaggerated.
It. was. glorious.
Then he offered to do the surgery. Blam! Like that! No debating, or convincing, or me having to walk him through possible scenarios! He said my symptoms made sense for ES, my calcifications were abnormal, and treatment would be a likely success.
Dr Cognetti even, without prompting, mentioned how my shoulder could be a source of Some of the pain and warned me the surgery wouldn't be fixing that (which, he remembered, I said I was aware of in my letter) He pointed out that it was slumped forward and twitching (Something I've been fighting orthopedic docs to see for years). He said he wanted to make a plan of how to deal with it!
His surgical plan was also less than Half the time of the Johns Hopkins doctor (1 hour vs 2-3 hours), and rather than a drain in my face and 2 days in the hospital, I would be able released the same day.
Dr Cognetti also said he was familiar with this group.
When asked how I was referred to him, I said "Doctors keep telling me there is nothing they can do for me, and that I should find a support group. I Did, and they found you."
He said he didn't know how it happened, at some point someone put his name on here, and people with ES just started pouring in. Although he didn't plan it, he's seen a lot of people with ES now and it's allowed him to become very informed and specialized in the condition.
Dude has a special ES symptom checklist he has you fill out!!
Jefferson University Hospital itself was also a very refreshing experience. I got all my pre-surgical testing done there and they were able to squeeze me in a little after my appointment. Everyone from registration, to the surgical schedulers, to the NP to and phlebotomist were very professional, thorough and in good humor.
They were a little surprised I didn't have any follow up Dr's since my shoulder was never resolved, but put in motion my next steps to deal with that after surgery. YEEES!!
After being through So many offices, So many people treating me as a drug seeker, or a mental patient, or a whiner, or a burden just for showing up.. being screamed at, and sent away before I can talk to anyone, even forgotten about by 1 doc until they came back to get their things, and ultimately just swinging in the breeze with no idea where to go next.. It was so good for my soul.
Surgery is in 2 weeks and I hope it goes as well as my first visit.
Either way, if you can get to it, I Seriously recommend going to a place that is familiar with your condition and Believes your misery. The mental health aspect was reason enough to make that drive.
Bonus: The hospital is next to some very delicious Pho restaurants, and Minar Palace a few blocks away has a lunch buffet with the best Korma I've had in ages.
WOW! What a great & encouraging story! So glad you've finally gotten the diagnosis & help you need & can even look forward to potential resolution of your shoulder trouble!! I can imagine you're very relieved & looking forward to surgery. Be forewarned though that recovery from ES surgery is a bit slow (a couple of months & up to a year for nerve recovery) with the first week being the toughest. Don't be disappointed if you don't feel 100% when you wake up from your anesthesia. Also, make sure you ask for anti-nausea meds in your IV & immediately post-op cuz you don't want to be vomiting right after surgery.
Another thing to note is that pain meds are incredibly constipating. Plan ahead & have some sort of laxative product on hand at home (I recommend magnesium citrate in the form of CALM or capsules) and start taking it ASAP after surgery so you don't end up in the ER w/ a giant intestinal clog (been there, done that...very painful & embarrassing).
I'm very excited for you to be seeing "the light at the end of the tunnel" at least for the ES portion of your journey.
Thanks Isaiah!!
And this is a good warning. I've had 2 dead-end surgeries for the same pain issue, one of my shoulder and a rib resection. I know logically I feel ready for this and all the after anesthesia trouble. (I've found that anesthesia makes me itch like my skin is full of bugs too!!) But being there, with a wound, having finally found your "Solution" and still suffering is something else entirely!
The shoulder surgery was post op 3 months in a sling, day and night, which made the arm and neck pain Worse and worse every day. Followed by 12 weeks of failed PT which gave me stroke symptoms likely because of the spike.
My mind thinks that, comparatively, this will be fairly simple. Although my heart knows when I get there I'm probably going to flip out and panic a little. Your sound warning to CHILL is very helpful and grounding.
And UGH that's a terrible ER visit! I'm so sorry. I remember seriously questioning my life choices when I needed to ask my elderly mother to help me with the enema bag because I couldn't move my arm after surgery 1, your ER visit had to be a special kind of torture.
Despite that, I hope that you're recovering well and everything was successful!
OMG, how fantastic!! Congratulations! Dr. Cognetti is very experienced with Eagles, so you are in good hands. I can imagine how relieved and excited you must feel. It's so frustrating going to doctor after doctor and having them treat you like you're crazy just because you have something they don't know about. And finally someone understood. And he's going to help you. Please keep us posted on how you're doing.
That's great news!! (Sorry- I must've missed your discussion earlier!) It really takes the wind out of your sails when you steam in all ready to do battle, and they agree, easy as anything, but in a really good way! And 2 weeks is not too long to wait... Hope that it all goes well for you!
Can they give you Benedryl in your IV to help w/ the itching? There must be something that can be added to help you not itch post op!
I'm sure you know this already w/ several surgeries under your belt, but LISTEN TO YOUR BODY. If it says rest, then do it! If it says move then do it gently. Days 3-5 post op will most likely be the worst as far as pain goes so stick w/ the prescribed pain med regimen solidly for the first week unless you truly feel fine w/o it. My surgeon said I needed to start taking 2-3 slow 15 minute daily walks 24-48 hours after surgery to get the blood moving - even if that means walking circles in your home. I was terribly loopy from the Percocet I was taking so my sister walked w/ me. I was very blessed to have younger family members around to help. How wonderful that your mom has been able to help you in spite of her age!! My sister & I are currently caring for our elderly mother as she dies from cancer. Hospice is a God-send!! I'm so thankful to feel good enough to take on this current challenge!
I sympathize w/ what you've been through with your shoulder. A good friend of mine went through a pretty rugged shoulder surgery recovery as well, so I'm familiar with what you've been through. Sure hope round 2 is easier!!
I had no fear going into either surgery because I trusted God for whatever the outcome would be. I also trusted my surgeon and knew I was in good hands. Though I'm not totally pain free after more than a year post op, I feel fantastic compared to before surgery. I am so thankful for the care I have received! I hope you will have the same or better results than I have had!
I'll send up prayers for you especially in the days around your surgical date.
I'm sending lots of hope & a hug your way.
SnappleofDiscord said:
Thanks Isaiah!!
And this is a good warning. I've had 2 dead-end surgeries for the same pain issue, one of my shoulder and a rib resection. I know logically I feel ready for this and all the after anesthesia trouble. (I've found that anesthesia makes me itch like my skin is full of bugs too!!) But being there, with a wound, having finally found your "Solution" and still suffering is something else entirely!
The shoulder surgery was post op 3 months in a sling, day and night, which made the arm and neck pain Worse and worse every day. Followed by 12 weeks of failed PT which gave me stroke symptoms likely because of the spike.
My mind thinks that, comparatively, this will be fairly simple. Although my heart knows when I get there I'm probably going to flip out and panic a little. Your sound warning to CHILL is very helpful and grounding.
And UGH that's a terrible ER visit! I'm so sorry. I remember seriously questioning my life choices when I needed to ask my elderly mother to help me with the enema bag because I couldn't move my arm after surgery 1, your ER visit had to be a special kind of torture.
Despite that, I hope that you're recovering well and everything was successful!
This is really great encouraging news! I wish you will have the relief you have been fighting so hard for. Will be thinking of you and wishing you a smooth surgery and speedy recovery.
I am just beginning my journey in all these, but very thankful to have found you guys who are so kind in sharing experience and supporting each other. I especially appreciate your posts about the 3D Slicer program. I played with it earlier tonight and got to see the fracture on my hyoid bone better... it's really amazing to see all the angles... I think all patients could benefit from learning this to have better knowledge of his/her condition. Thank you for sharing this with us!
Btw, I was curious and a little nervous... I think you were the one who also sent the scans to Dr. Samji's office shortly before the holidays? I don't know if he's that first doctor you mentioned above who decided to back out of the surgery? I got the reply from Dr. Samji's office saying radiographically I am a good candidate, but that he would like to physically evaluate me in the clinic before making a final determination on possible surgical intervention. So I am looking into flying up to get seen. Lots of anxiety...
Isaiah- So much Benadryl, but I have a similar skin crawly reaction to that instead of the normal sedative, hahaha! It’s just a squirmy couple of days, but I tend to sleep through most of it.
And more excellent advice, thank you! And thanks for that timeline. It will be a good reality check later on.
How frustrating you’re still not 100%, but this is amazing and very fortunate that you’re better enough to help out with your mom. That’s sad news about her and it’s gotta be really hard and you and your family. I’m glad you’re able to all be there for her tho.
Bella- Horray! I’m glad it helped you out. It’s kind of awesome just to be able to see and play with an image of your bones even without the spikes!
This is great news about Dr Samji too!
I never wound up sending them my scans, I had to wait until after the holidays to get another copy of my CT (it would Not burn to my blank disks, ugh!), and by that time Dr Cognetti’s office called me back and told me to come in for an exam.
I know the whole process is pretty nerve wracking. I was so stressed about something not working out , and not being able to see the Dr, or getting denied for surgery pretty much every minute until I walked out of the office. But just try and trust that Dr Samji will know what he’s doing, and the fact he says your a good candidate is already one step closer to being Done.
Hi Bella,
Dr. Samji was my surgeon. He shortened both of my styloids. He's AMAZING! He did a fantastic job. Not only is he professional but he's also compassionate. He makes eye contact with you when you're talking to him and gives you the time you need to talk about how you feel and what your hopes are. I highly recommend him. I hope you have a good appointment.
bella said:
This is really great encouraging news! I wish you will have the relief you have been fighting so hard for. Will be thinking of you and wishing you a smooth surgery and speedy recovery.
I am just beginning my journey in all these, but very thankful to have found you guys who are so kind in sharing experience and supporting each other. I especially appreciate your posts about the 3D Slicer program. I played with it earlier tonight and got to see the fracture on my hyoid bone better... it's really amazing to see all the angles... I think all patients could benefit from learning this to have better knowledge of his/her condition. Thank you for sharing this with us!Btw, I was curious and a little nervous... I think you were the one who also sent the scans to Dr. Samji's office shortly before the holidays? I don't know if he's that first doctor you mentioned above who decided to back out of the surgery? I got the reply from Dr. Samji's office saying radiographically I am a good candidate, but that he would like to physically evaluate me in the clinic before making a final determination on possible surgical intervention. So I am looking into flying up to get seen. Lots of anxiety...
Snapple of Discord,
Is your surgery coming up this week? How are you doing? Sending you healing vibes and best wishes.
Stuck in bed, the Gags have been Really awful this week. I seem to be able to make it through breakfast, then down all day, then up long enough for dinner, and That's It. soooo tedious.
Surgery is Friday tho! 
What a wonderful narrative, Snapple! It's amazing, isn't it, when you finally find the right doctor. Well worth the effort and frustration (although 50+ doctors is way too many)!
I'm really happy for you. Best of luck with the surgery.
Let us know how you're doing when you get a chance. Are you going to stay in Philadelphia for a while or can you go right home? I'm so excited for you.
Thanks!
And I will, trying to document a lot of what’s going on before and any symptoms resolution I notice so my stroke brain can remember it later. I wanna be prepared if I have to keep chasing solutions.
Staying in Philadelphia the night before and day of surgery, although doc says I can go home right away. Want to be near the hospital is anything weird crops up. Not to mention the area is supposed to get over a foot of snow on Friday. May be there a lot longer than anticipated!
Good luck and thank for keeping us posted. I plan on doing sending Dr. cognetti as soon as I get my scan done I’m going to forward everything to him and get his opinion on my case. I hope you find relief real soon!!!
Kcannady- I hope this works out! He's Definitely worth the travel time, and his staff is awesome and familiar with people coming in from far and wide. The phone staff can be a little terse and hard to get through, but don't be put off.
I followed Heidemt's advice on how to be seen sooner and scheduled an appointment first, then followed protocol to have my records reviewed. She's been through A LOT of these doctor-travel shenanigans, and I think it made a big difference in Who I spoke to and How my records were received.
I also wrote Dr Cognetti a summary cover letter to go with my scans, and he made it clear during my appointment that he read and remembered it. It seems to help aim the provider toward the symptoms your are most concerned about if you have a long record of issues, like you do.
Hope all goes well on Friday for you, and that there's not too much snow!
God Bless, Jules
DR. Cognetti is doing my surgery on August 5th ! He didn’t believe my severe dizziness was connected to ES, however my ENT absolutely believes it is connected as I do also. Some of the dizziness has gone. Thank God.
Wow - fantastic news! Less than a month! I’m happy for you. You’ll be in our thoughts. Please keep us posted on how you’re doing.
Did you go see Dr. Cognetti or did you send your scans?
I saw him in person and scheduled surgery. Hoping my recovery is quick