I am sorry your fusion choices are so difficult. My only knowledge relates to C1/C2 fusion. Take care. D
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I have several functional Upright MRI and DX through the mouth. There is no DMX where I life but I m going to get a CBCT done.
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This is my issue. Who is your neurosurgeon? I am meeting with Dr. Henderson in a few weeks. My styloids are in very close proximity to my C1 process, RT 3mm and left 2.4 mm. I believe the average is supposed to be between 8-10 mm. Dr. Patsalides did my cerebral angiogram: venogram and he recommended against a styloid decompression. He said see a neurosurgeon instead. I have a lot of pain from my collateral veins. Dr. Hepworth’s office (who referred me), disagrees with this, no surprise. His office is in chaos and continues to reschedule surgeries and communication is horrendous. That’s a big problem for me. Onward I go……
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Hi @Brandy
I am sorry that you have to deal with the same issue. Do you have CCI as well?
3mm? This is really very close. Mine are about 7mm apart from each other , but the jugular vein seems to be compressed down to 3-4 mm at the height of c1.
I keep my fingers crossed that Dr Hepworth can and will help you. Would you decide for the styloidectomy?
My neurosurgeon is Dr Oliver from Spain.
I would appreciate it, if you let me know how you proceed. I wish you all the best!
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@Brandy if you still have any concerns about the styloids in general, you may want to talk with Dr. Henderson about it. I had sent in my records to his office because they had on their website that he performs styloidectomy. They called me a couple of days later to let me know he no longer does this procedure and have been meaning to take it down from the website. I am not sure if this was a decision to keep his practice to his core neurosurgical duties… I’m sure you know that he is 100% OOP, does not accept insurance for payment. However, perhaps if you would already be having another surgery with him, he may address the styloids at the same time?
I am also considering having testing done with Dr. P… do you mind if I keep in touch with you?
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Hi,
Yes, I do plan on speaking with Dr. Henderson regarding this. He also works and communicates with Dr. Hepworth.
He does work with some insurance providers with out of network coverage. You have to put down a cash payment. I’m aware of all of this. Hopefully he can help guide me on this.
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My anatomy is very tight and constricted. Hepworth thought because of this my thyroid was being squished as well. Unfortunately, his office is not in a good state and that is weighing heavily on my future decisions.
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Dr. Hepworth’s ofc seems less of a mess than it was when you first started with him, @Brandy. He’s now got two NPs & at least one MA plus a couple of front desk gals. I can’t say for sure that appointments & surgeries don’t get changed last minute, but my sense is that things aren’t as discombobulated as they were last fall/early winter.
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Oh, no, still the same if not worse. No return phone calls or messages in portals. I am still waiting to hear back from an abnormal report on imaging that he ordered in October. I was supposed to have surgery this month. They never sent over my referral to the vascular institute to be evaluated. He’s having a hard time with getting a vascular surgeon since his main doctor retired last year so he’s canceling many or telling patients they don’t need one anymore. Even the last telahealth they had another patients name and information pop up on my screen. Then, they had no idea what meds they had changed on me. I’ve heard many scary stories of patients trying to reach out with very real and concerning medical issues and getting nowhere. That’s not better.
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Oh no, I’m sorry that the office is still being chaotic, it’s so frustrating, especially when he’s a good doctor and very much in demand…
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Yes, unfortunately, it just adds more stress to an already stressful situation.
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So it sounds like you need a head/neck surgeon for the styloidectomy and a neurosurgeon for possible venous decompression?
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As of now, I have a consultation with Dr. Henderson who is a neurosurgeon who specializes in CCI/AAI, specifically with EDS patients. He used to perform styloidectomies so I plan on getting his take. He is familiar with Dr. Hepworth and I really want his opinion on the why Hepworth feels one way and Patsalides another. Based on that, I may revisit Costantino.
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Hi @Psalm73_26
how are you?
I still have not decided yet about the styloidectomy. Just today I saw a video from Dr Centeno in which he explained a possible IJV compression by C1 when you have CCI. The C1 can slide a little forward and push the Vein. Removing the styloid might not help in this case, only destabilize C1 even more.
Do you have any plans on how to get a hold of all of this?
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I will send you a message! Still uncertain and still praying…
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@Brandy - Thx for the update. I guess my response was to superficial evidence. I am so sorry for the problems you’ve had with Dr. Hepworth’s ofc. I know we have at least one other member who lives out of state who is waiting for results from tests done last year & isn’t getting any response from the ofc. SO FRUSTRATING!
I’m glad you’re going to see Dr. Henderson for his opinion. He has a fantastic reputation.
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Thx. I had a consult yesterday with another neurosurgeon who believes fusion is needed but wants more testing. He further went over the results of my cerebral venogram/angiogram that Dr. Patsalides did and indicated surgery was not warranted that Hepworth was proposing. It just makes me wonder as he and Annino were wanting surgery, how many of these surgeries are actually justified? I cannot wait to get Henderson’s take as he used to do these as well. As much as I know the seriousness of a brainstem fusion, my quality of life is extremely poor and impacted greatly. As far as Hepworth’s office goes, it’s a dumpster fire.
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Hi Brandy, I am sorry to hear, that Dr Hepworth´s office is so “chaotic”. I try to get a second opinion from another neurosurgeon… At the moment I believe, that my styloid causes problems because of C1 and C2. If they were stable and stayed in the correct position, the styloid would probably not cause any trouble just as it did the last 10/20 years… but I don’t know if this is correct. I am just trying to make up my mind. So maybe it is fusion or stem cells for me…
I totally feel you…brainstem compression is the worst and I just want my life back or at least more life quality. When is your appointment with dr Hepworth? What helps you to get through the days?
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I am a current patient of Dr. Hepworths and have been to Denver. Bottom line: He’s only as good as his staff. His practice has caused me a tremendous amount of stress and unnecessary anxiety. He continues to cancel appointments last minute. To get a text while flying cross country at 6 am to say your appointment is being canceled that day after being canceled 3 months earlier without informing me then is horrendous. It continues and I will not bear you with all the other mistakes. I am getting a second opinion on surgery.
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this is really intolerable.
I keep my fingers crossed, that you quickly get a 2nd opinion that is trustworthy.
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