Is there an advocate at the hospital who you can speak to about your surgery and options? Like a patient health advocate, ombudsmen, or licensing board? If you feel you are being neglected by your doctor post-op then these may be options to get attention. In Canada we can go to the College of Physicians and Surgeons to file a complaint, but I’m not sure if you have that equivalent. Either way, your situation sounds dire and so it may mean escalating your complaint to a higher authority.
It’s such a pity. If I remember correctly the doctor fast-tracked you because of your situation. It sounded like he was going to follow through and this is a sad result, leaving you with zero options.
I am sure the hospital will tell me to contact him, but I can try.
He swore to my wife and I that he was going to stick with me to make sure we figured out what issues were causing me the most problem. He convinced us that he was not going to stop until he got me some relief.
I had a televisit about 3 weeks ago, and he was supposed to meet with me again in december, call in some testing here at my area in Arkansas, and some prescriptions, and none of it was true.
Now since I have had the surgery, no other doctors of hospitals want to get involved.
I pray no one else makes this life ending mistake.
Hi @harrisonboy, I’m relatively new on here so haven’t seen all of your posts prior to surgery and after, but wonder if you have had an ultrasound on your jugulars post surgery? I am 16 days post surgery unilaterally and in that time felt a lot of pressure/swelling/fluid I guess in the area around the skull base. The removal of the styloid is very invasive so imagine it’s all relative. Could it be possible that you still have swelling back there compressing the IJV?
Also, I had/have intense shoulder/neck pain that is exacerbated by using my arm on the same side. Post surgery I’ve basically tried not to use it at all, to try to help the muscles in the area relax as I think es also created a positional TOS for me. My IJV was also very dilated near the collarbone in pre-op imaging.
I guess I’m just wondering if your JV is still compressed and causing you issues…
Ibfinally spoke to Hepworth today after 8 weeks out from surgery.
I just had an MRUI done at MAYO and just sent that to him.
I have not had a new ultrasound, but he has asked me to come out in January. To be honest, I don’t know how I can get out there. So sick and no money or anyone to take me.
I don’t believe this is swelling. I am having intense headaches that are severe, facial neck and back pain and I have so much dizziness and vertigo, I can barely stand. My eyes won’t hardly focus. My theory is that the surgery and my severe reaction to the anesthesia had triggered something else in my body.
@harrisonboy im so glad to hear you were able to speak to your doctor and that you’ve had some additional imaging done. Did he say how long it would take him to get back to you about the results? Or did he imply he’d discuss the findings in January?
Are you caring for yourself at home or do you have someone there with you?
Though I’m much earlier in the process than you, I have having real trouble with my swelling due to the movement of my neck and jaw with minimal use. The compression on the incision/general swelling when tilting my chin even the slightest bit or talking too much, chewing too much, is flaring up the inflammation and setting off the symptoms I found the most troubling pre-op. So I’ve made a makeshift neck support - a little bit of memory foam wrapped in a pillowcase and then softly held in place with a soft fabric strap that has a Velcro closure. It’s really helping to avoid aggravating the area, while also allowing me to support my own neck so that I don’t lose too much muscle tone in the back of my neck.
Are you finding anything aggregates your symptoms more? Is there anything you could do in the meantime to help reduce the intensity of your symptoms?
Believe it or not. I had almoat no issues from the surgery. They had to hospitalize me from the reaction from anesthesia.
I have been getting worse as the weeks go buy.
It is my opinion that the surgery and reaction have set off a mojor issue of some kind. The surgery may have worked, but my body feels like itnis shutting down. I can barely stand up.
Dr. Hepworth’s thinks i have a leak in my spinal cord, but MAYO doesnt. They did say I have all the symptoms of parkinson’s.
Im sorry that you’re feeling like the surgery experience has set off another condition. Please know that it is not your fault, that you weren’t to know this might happen and went down the surgery path for es because you couldn’t find any other reasonable explanation. I don’t have any medical knowledge but I do know how scary it can feel to have pain/disability and not feel like you are being seen or heard. Please know that we are all with you, regardless of how long it takes and what the diagnosis might be.
I screengrabbed this still below from a video by Caring Medical in Florida regarding JV compression and find it so interesting the number of conditions where JV compression has been found. Parkinson’s is on the list.
Prior to my es diagnosis, I thought that I ticked quite a few boxes of the Parkinson’s symptoms. But I think the one that appears the most noticeable in early stage Parkinson (which I don’t have) is slow movement or limping. Do you have this?
Oh I just thought of something, I have been lightly watching the story of ‘That Tilly Rose’ a young female who has had chronic illness for much of her life. She recently had surgery for both nutcracker and JV decompression. Unfortunately she continued to have issues (not sure of the exact symptoms but dystonia was one of them). She finally found out that because of her longterm nutcracker issue, her kidney had not been able to remove the heavy metal from the MRIs with contrast performed throughout her life. So she had severe heavy metal poisoning. Are you on instagram? You could read more about her story and see if anything sounds familiar to you.
Have you had a lot of MRIs with contrasf in the past? Could it be something to look into considering your nutcracker diagnosis.
I don’t know anything about gadolinium poisoning - was there treatment for it?
I would imagine if you had JV compression than you did need the surgery. Perhaps it’s not the only thing going on, but at least you were able to tick that off the list and start the process of putting that behind you. It would be ideal though to know if the vein has opened up in the most minimally invasive way for you - which I imagine would be US, unless that can be seen on your recent MRI. Are you able to reach out to your doctor and get some feedback?
In the meantime, taking off your shoes and walking on the grass barefoot, touching leaves on a tree, getting some sensory feedback…these things have helped me when I’ve been at my lowest.
@harrisonboy sorry here is a photo of the blood filtering process that ‘That Tilly Rose’ just had done. She had it done in Germany along with her decompression surgeries. If you haven’t had the metals excreted, could this be something you look into next?
I’m not in the US and doubt this type of thing would be available in NZ but it should be in America…
@harrisonboy , re the jugular ultrasound, some people have been able to get it locally, but many radiologists aren’t skilled enough to do the proper testing that Dr Hepworth would need. All I can suggest is that if you do have a good hospital near you, that you speak to Dr Hepworth or his assistant (if you can get through to the office!) and explain the travelling issues you’re having, then see if he could send a protocol for how he wants the ultrasound done to your local hospital?
I am so sorry, it’s awful for you, the way your body reacts to all the drugs, surgery etc. I agree with @BraveKat that surgery seemed at the time your only option, with hindsight it may well have not been the best thing to do, but what choice did you have but to try it? I’m sorry, I can’t remember all the diagnoses you have & investigations etc, have they looked into dysautonomia?
I wish I had the answers for you…
Have you had a blood test more recently to check your levels? I recall @JugularEagle (sorry if I’m remembering wrong) said they offer one at MAYO for it. Could be worth checking your current level.
I hope this is something you are able to pursue further.
Have you tried lymphatic drainage massage? I’m a bit nervous to try it personally but hear good things about it.
