Hi everyone. I have not been on here in quite awhile. This site was so supportive and helpful when I was first diagnosed years ago so I’m hoping to get some help again as I believe I need revision surgery.
I live in North Carolina. I had surgery by a Duke doctor in NC years ago that left practice due to her own medical issues. I have since been in contact with Dr. Cognetti on a few occasions over the years and if symptoms got worse was going to have him do my revision. I recently came across Dr. Hackman and he seems to have such great reviews and more convenient to me.
I am hoping the members who have seen him and also had surgeries with him could share their stories and any information on their experience. Thanks so much!
We have noted over time that Dr. Cognetti isn’t very interested in doing revision surgeries plus he does leave about 1 cm of the styloid in place. That practice has worked well for many of our members but a few have had regrowth. Dr. Hackman has done revision surgeries, & he cuts the styloid(s) back to the skull base if possible. You’ve probably also seen that he does either intraoral or external surgery based somewhat on patient preference & also what he feels will produce the best end result.
I expect you’ll get a good response from people who’ve seen him.
Hi @Isaiah_40_31 ! Thank you for the response. I met with Dr. Cognetti in person a few years ago and have also had a couple of consults over the phone. He was willing to do the surgery on me. I liked him a lot but with Covid and travel, I’m now very apprehensive over it.
I’m thinking local is better. I’m excited to hear about others experiences with Dr. Hackman
So sorry that you’re needing revision surgery If I remember right did you have POTS also? How have you been?
I hope that you can get someone to help you…thinking of you & sending you a hug
Hi Jules! It is so good to hear from you! Yes, you have a great memory. My POTS has been pretty much under control with a few flare ups here and there. No where near what I experienced when I was first diagnosed so I will take it lol.
I’ve always needed the revision to my left side but have been so scared of surgery again that I have put it off.
My vascular symptoms went away with the first surgery but now they seem to be coming back here and there. I know I’ve had regrowth or recalcification on that side from imaging and my right side has always been long too.
I figure I better make a plan in case things turn bad quick.
I hope you are well
A good idea to be getting something in place…pleased that your POTS has been relatively controlled. We’ve had a few members who’ve had it.
Was the doctor you had surgery with Dr Donna Sharpe on our list?
Hi. I’m glad to hear your POTS is not as bad. I have POTS and it can be a living hell. It’s the one thing I want relief from more than anything and hoping getting ES surgery will do that for me. I hope you find relief for your remaining symptoms.
Hi @one_day I’m so sorry you have POTS and ES I certainly understand the frustration. Has anything helped you with the POTS? There was a period of time where I could not walk a short distance across the room without nearly passing out from dizziness (I have hyperadrenergic POTS and never pass out just feel like I’m going to). I could not tolerate any meds as they made me feel worse. Just water, salt and getting some other vitamin deficiencies under control. Have you had iron, b12 and D checked? I was deficient in all 3. Iron was so bad I was anemic at one point. I’m not anymore but my body does not retain iron so I have to go for iron infusions periodically in addition to supplements. Have you had that looked into?
Thank you for your thoughts! I hope you get some relief as well
I also can’t tolerate meds. I have vitamin d deficiency but iron and b12 have been in normal range. I honestly was hoping the eagles was causing at least some of it. The whole salt/water thing doesn’t help me. I can’t do anything without being dizzy. Nothing at all. Even sitting down I feel that way.
@one_day I’m so sorry to hear that. I do understand though because I was the same for a period of months sitting or lying down wouldn’t stop the dizziness. I really hope they find something to help you. Do you plan on trying to get surgery in the near future?
Yes I’m hoping to go ahead with surgery and then see what’s left and work it out from there. I’m meeting with Dr Samji next Friday for a consultation. Still looking for someone closer to home also.
We have a member who hasn’t had surgery yet but she found taking a blood thinner really helped relieve her dizziness. Depending on when you can get surgery scheduled & if there is one that is compatible w/ the other things you have going on, it might be worth it to ask your doctor to Rx something like that.
Sometimes we get mixed reports about doctors who have previously done ES surgery but have stopped doing it. He was on our list but may have been removed for that reason. Glad to know he’s back to doing ES surgeries.
If I remember right did you have POTS also? How have you been?
