So sorry that you’re really suffering still, I hope that you improve soon. A sensible decision to stay put a bit longer, of course you’re concerned about needing a breathing tube! It’s very unusual to have that much swelling & bruising- that much pain swallowing is unusual too with an external surgery, it sounds like you’ve been really unlucky.
Will keep praying for you & hope that Dr C can give you answers tomorrow. Hugs & prayers, God bless
Hi Tikimon I don’t have any additional advice to add from what @Jules and @Isaiah_40_31 have stated except I just wanted to reach out and let you know I’m thinking of you and wishing nothing but better days ahead! I hope the dr can get you squared away quickly.
How are you doing now @Tikimon? Thinking of you…
Jules, thanks so much for reaching out. I have been planning on getting back with you and others on this forum. Recovery has been interesting to say the least with me having lightheadedness still going on 10 days out from surgery, but I must say that Dr. Cognetti is a great doctor. I had an in office visit with him prior to me leaving Philadelphia, over my amount of swelling and swallowing concerns and he addressed those. Those have gotten much better. As far as me being lightheaded it is not due to anything related to me being dehydrated or low RBC count, etc, as I just had a lot of bloodwork done yesterday. It could be coming from the my stent opening or closing from the swelling or just closing on it’s own.
For my condition I will need to follow-up with my neurosurgeon hopefully he can open up my IJV stent that was being compressed by the styloid and C1. For me, the removal of the styloid did not solve my issues of headaches and other neurological issues, nosebleeds, etc., but it is definately a start in the right direction.
Thanks again for following up with me. It means a LOT!
I’m really glad that the swallowing & swelling have improved, and that Dr Cognetti was helpful…at least now that the styloid is gone hopefully your neuro can improve the IJV blood flow for you. Re the lightheadedness, it could be that the vagus nerve has been irritated during surgery & is affecting your blood pressure? We have had a couple of members who’ve had vagus nerve irritation post-surgery, & many have had issues from the styloids before surgery. Will keep praying for you
My blood pressure is normal to high actually. I checked a few times myself and in my PCP doctor’s office yesterday. Definitely not low, but thanks for the suggestion. Could still be playing a role.
Thanks again for the follow-up and help.
@Tikimon - It can take some months for symptoms to disappear after ES surgery. It’s still too soon to know what difference it has made.
Your lightheadedness might still be a result of the lack of jugular flow so your follow-up w/ the neurosurgeon is important.
I’m glad the ES surgery is behind you. We have heard a lot of good things about Dr. Cognetti so I’m glad your experience concurs.
I just want to give an update and I appreciate so much of the support thay each of you who answered my questions and supported me along the way. Since my styloidectomy by Dr. Cognetti (which I highly recommend), I have since been to Wake Forest to have anothe stent placement to try and open up the original stent thay was placed BEFORE the removal of my styloid that was pressing against my internal jugular vein. Unfortunately with my luck I had the two issues of the C1 AND styloid pressing up against the internal jugular vein at the same time. So unfortunately I am in a situation where the C1 may need to be shaved off, as my headches, nose bleeds still signs of intracranial hypertension are still bithering me after removal of the styloid and a second stent in the internal jugular vein right at the C1 location. When I move my neck to the left, there is immediate contact with the C1 so, compression of the stent, unfortunately for me is unavoidable and therefore blood flow is compromised.
Anyway I just want to give an update and agin I apprecite ALL who have helped me up to this point. And again Dr. Cognetti did an outstanding removal of my styloid, as I had no first bite syndrome that I had seen a few others experience. So that in itself was/is a relief.
Thanks to all again. Not sure if I can upload a CT view of what I am experiencing to show what my unfortunate situation is. May be helpful to some to compare your situations.
So the styloid on the left was removed by Dr. Cognetti and is not shown in the CT, but basically was (prior to removal) compressing the stent into the C1.
FYI, Dr. Fargen is an outstanding neurosurgeon if you are needing one. I have seen him and both he and his team are very knowledgeable and have some of the best bedside manner that I have every come across.
Currently I am having followup CTs/CTVs to see if the stent has collapsed due to my recent falling asleep unintentionally at a 45 degree angle against the C1 and to see if the stent is now compressed to almost complete closure and what bloodflow may be going through the stent (if any) now after waking up several times unintentionally with my head bent at a 45 degree angle on the recliner.
So sorry that you’re still having issues, I hope that the stent hasn’t collapsed…a C1 shave sounds like it might be an idea for you- if you can find someone to do it!
Thanks Jules! I did consult one of the best doctors in the US (in Arizona) that does the shaving of the C1 and at the time prior to the removal of my styloid, he thought it was a little too risky or whatever words he used.
Oh no, I was going to suggest him, although it would be a long way for you to travel…sending you a hug
Thanks Jules! I hope you are doing well!
I’m so sorry for your troubles w/ the stent(s) @Tikimon but am glad your surgery w/ Dr. Cognetti went well. It’s also great to know you have Dr. Fargen on your team as we’ve heard good reports about him on our forum.
I also hope your stent isn’t closed. Your C-1 transverse process is quite pronounced on the left compared to the right & it does seem like shaving a bit off could make a big difference. If Dr. Nakaji is unwilling to do the shave, perhaps Dr. Fargen knows of someone else you could contact.