Hey everyone! Really glad that they have this website set up, as this is one of the weirdest diseases out there! I’m 32 years old with two little kids so this whole thing has been very difficult.
My story starts 3 years ago when I was trying to go to bed one night and my body just had a burning jolting feeling down it. I felt like I was struggling to breathe, had real bad chest pain, some real funny feelings in my throat and neck, and felt like my body was just on fire. Had no idea what was going on. This happened three additional nights in a row and I ended up in the ER. Of course they didn’t find anything but I started seeing specialists from there. Went to a good 30 doctors before looking into a CSF leak.
My symptoms progressed to where I had real bad headaches went upright especially, neck pain, heart palpitations, difficulty breathing, choking sensation in my neck, and digestive issues. I met with the doctors at Duke University about a CSF leak. They found multiple CSF Venus fistulas which drain my CSF through veins down my spine. Those are obviously not supposed to be there. Typically those are because of IIH and ultimately they determined I must be in high pressure, not low pressure like I initially thought.
They did a CTV and realized that both of my jugular veins were extremely compressed at my C1 level. Left side was 80% compressed, all my right side was around 60% compressed. I went to see Dr fragen here in North Carolina and got my pressure testing done. They found high pressure gradients in my left side which they immediately deemed was the cause of my symptoms. Also it was noted that I have around 4 cm long styloids. Not super long by any means, but long enough to cause weird symptoms of course.
After that, I went out and saw Dr Hepworth out in Colorado to discuss getting a styloidectomy done. Meeting with him went great and really learned a lot from him. The only thing I was really frustrated about was it would take 7 months to get me in for surgery. I was in a lot of pain and couldn’t wait that time.
Dr Fargen had been training with him for some time and said he was going to begin doing the surgeries. I volunteered to be the first in order to get on the schedule earlier than I would have otherwise. I went in for surgery on October 12th of this year. I am currently about 7 weeks out post op. He was able to shave down my styloid pretty close to the skull base, but he did leave a little piece, about 1.2 cm, of styloid in my neck because he couldn’t get to it. Really hoping that’s not going to cause problems in the future.
Since my surgery, I have had worse headaches than before. I had around six out of 10 headaches normally, and now my headaches are around 9 out of 10. A few days after my surgery I went back to meet with Dr Fargen and got another CTV done to see why my headaches might be worse. Now my left jugular vein is 100% closed up starting around my C1 joint. I’m assuming that the swelling has caused things to push up on my jugular vein and what not. I’m going again in mid-December for another CTV.
Another thing that happened is my accessory nerve was stretched out during the surgery for much longer since it was his first time. I left shoulder now is in pain and I have difficulties raising it past my head. My left arm is drooping really bad, and my shoulder blade “winging” and not functioning properly. Hoping that time will heal it up just fine. I will be doing physical therapy here shortly as well and hoping that’ll help.
Overall, my symptoms currently are headaches on the left side mainly, and a little bit on the right, next stiffness, something in my throat feeling, first bite syndrome, ear pain, and sometimes get some throat pain. Really has me down because of how many people experience immediate relief of their symptoms after their surgery. I definitely did not have that relief. Hoping it’ll come with time.
Next steps with me or I might look to do a provision surgery with Dr Hepworth if things don’t heal up. I feel like Dr Fargen did a great job in the surgery, but I think he was so focused on the styloid that he might have missed other things that could be causing the compression inside my neck. He also did not do the ballooning that a lot of doctors will do after the surgery to open up the vein. It has me worried and I want to make sure that it was done correctly. Thinking I might have just should have waited until Hepworth was available. I’m still feeling hopeful that things will heal up but only time will tell.
Would be curious to know if anybody else has had similar symptoms to me. Glad to have found you all here and hoping for a better life for everyone on this page! This has been the longest 3 years of my life and I just really want my life back like most of you do! Also would love to know everyone’s success stories with jugular vein compression. TIA!