I mentioned this in one of the posts but thought I would throw it out for the group as well. A friend of mine who has an auto immune disease asked why I couldn’t take a course of low-dose steroids as she does. I did have a steroid pack, prescribed by my internist, and it absolutely was helpful. It seems with these long wait times for surgery that this might be a good idea, very specifically for me because I do think I have a fair bit of swelling in around that area in my neck.
I will talk to my internist about it, but I think there may be resistance, since this is technically only prescribed through rheumatologist in this format (?)… I certainly don’t want to add anything to the mix, but for my head pain, from vascular compression, I think, wondering if this would help me get through.
@Leah, I’m glad the steroid pack helped you. A better solution for your head pain may be getting an Rx for a blood thinner such as Plavix. Dr. Hepworth routinely prescribes blood thinners for his VES patients to help keep them more comfortable as they await surgery. In most cases, the blood thinner has been very helpful for our members who took it. It would be a safer option than being on steroids until surgery plus, @Duckie makes a good point, you should check to see how long prior to surgery you’d have to stop taking something like prednisone. With some blood thinners, you can take them close to surgery day.
Yes, did just see about plavix and will ask next week when seeing Dr. Gupta, who is a vascular neurologist. @isaiah … happy to pull down this post so as not to give a potentially bad idea to anyone (?).
It’s something members could discuss with their doctor at least, obvs steroids do have side effects & a good idea to check if they can be used prior to surgery also…the injections which some members have had into the tonsillar region are usually steroids with lidocaine, but that doesn’t help everyone…
No worries about the discussion @Leah. It’s good for our members to see what others are exploring by way of solutions for pain/symptoms & to see the potential pros & cons.
I have a question, they want to make me surgery of both sides by the neck. My right styloid is next to my aorta ( main vein ) I am really scared. Has anyone had a both side neck surgery. Another thing that is really scary is that will be the first surgery that my doctor has done. In Peru no one has.
I’m so sorry! I’m new here and learning … and can only imagine how scared you are. Others will chime in for sure. What I have learned is researching this is best to learn as much as you can. We unfortunately have to be our own advocates ((.
I call it that, but is likely called a course of steroids. It starts with a 50 mg dose and you reduce by 10 mg each day. It is used to reduce an acute case of inflammation.
It would be similar (in method of tapering down) to a z-pac which is an antibiotic pack that reduces in milligrams each day (which is why I call it a steroid pack but that may not be the correct term).
I AM SO GLAD YOU FOUND A DOCTOR TO HELP YOU!! @analiadelcas!! I have prayed for that & God has answered. It is concerning that the doctor hasn’t done this surgery before, but if he is an experienced skull based surgeon or head & neck surgeon, he will be experienced with surgeries in the area where the styloids are.
In answer to your question about bilateral surgery (both sides removed in one surgery), there are pros & cons. I only know of one doctor in the US that does this but his surgeries are very successful. All other doctors prefer to do one side at a time because swelling in the throat can be bad after surgery. That is where steroids (Cortisone/Prednisone) can be helpful - after surgery to reduce swelling in the throat. The dose given usually covers 10-12 days & is reduced gradually over that time as @Leah mentioned. It helps reduce the swelling in the throat. You should be able to tell your surgeon that you only want one side done at a time if you feel doing both at once is unsafe for you. I hope he would honor your concern & be willing to do two surgeries instead of one.
Your styloids are not close to your aorta, but they are close to your internal jugular veins & sometimes your internal carotid arteries. The carotids take blood to your brain, & the jugulars allow blood to flow back out of your brain. The styloids can sometimes cause either the carotids or jugulars to become compressed so blood flow to or from the brain isn’t like it should be. This problem can cause very severe symptoms besides the pain caused by the elongated styloid processes.
Do you know if you have any compression of your jugular veins or carotid arteries from your styloids? What symptoms do you have from ES?
The most important thing for you to discuss with your surgeon is how much of the styloid processes he plans to remove. It is important for the styloids to be cut off as close as possible to the base of your skull. If he only removes a little off the tips that will not help you feel better. He will also need to smooth off the cut tip of the styloid that he leaves attached so it isn’t sharp as that can also cause problems for you.
You also need to know if he will do the surgery through your neck or through your throat. Through your neck is much safer and the styloids can be cut shorter than through the throat. The doctor can also help protect the veins, arteries, muscles, tendons, ligaments & nerves when he goes through your neck so he can help protect them during surgery. He cannot see those if he operates through your throat.
