He asked my parents (I was in recovery) if I had a history of sore throats etc, which I don’t have. He said with lymph nodes that look like mine, it suggests a history of Lyme disease which is something they see there. Good news, I suppose, is that it indicated a past infection rather than present, so I am basically left with the remnants. It showed that my body was protecting me, and this is what’s left. Not sure what’s next for that. We have a lot of questions to be answered when we see him for my one-week post op on tuesday, and I will update with the info I get then.
He also mentioned that my PFO was fine, but “double digits” but I am honestly not sure what that means…Basically, it was safe to operate on me, but I could have some issues in the future that we will want to monitor and get a second opinion on if persists. If anyone has info on either of these concerns, lymph nodes/Lyme, or PFO, please let me know- I am all ears.
Thank you so much! You are in the best hands with hep. He feels like family now. When someone like that vows to help you, and not just in the temporary, it helps ease the pain of past traumatic medical experiences. I hope that is your experience with him, too and I am confident it will be. Can not speak highly enough of him.
Small hole between left and right atria/ventricle. Everyone has it before birth and for most people it closes with the first breath. For less than 10% of the population, it doesn’t close. It was discovered when hep called in an echo cardio gram. Was still able to perform surgery, but he wants to keep an eye on it.
Baruch Hashem smallgirlbigmoutains! Good for you in telling us not to let people or doctors “gaslight” you! I had just had a baby on December 8, 1987 and on December 24th, 1987 was when I actually thought I had swallowed a chicken bone/fragment! Guess what I was told? I was told that I was going through Post Partum Depression! Really???
I was starting to give up but, because I am a praying woman, I went to my manufacturer (the Creator) and stopped believing the mechanics (doctors/others). I pursued my healing with all of my being and it was a hard surgery from hell but, I moved in faith. For me, it was a win, win because I know who I am and I had to do what I needed to do.
HE heard my cry and HE ordered my steps and I just walked through the threshold. I was one of the lucky ones because I listened and HE ordered my steps and connected me with the right physician. I hope that everything will start to heal and that the quality of your life will be better.
B’ahavah to you too!
So glad things have gone well, hope so anyway. Great to hear you like the surgeon so much and have such confidence in him. All the best for a full recovery - and from your other health issues too. Go Well,
All the very very best to you in your recovery!!! Hopefully you’ll feel even more beneftis from surgery if those nerves were all wrapped up in it as well and are now “free”
Such a beautiful beautiful post!!!I am among the scared. I am told for certain that I need this surgery. I can see it in my imaging. But the fear of knowing how bad my body takes to invasive things and what that might mean for recovery, future neck weakness, more dysfunctional (or worse) muscles, instability, scar tissue attaching… scares the bepoopies out of me… So thank you. Thank you for your courage. Thank you for your sharing. Thank you for the beautiful pictures
When you say that most with bilateral ES do need both done asap normally, do you know if that includes those of us who need the styloid removed because it’s compressing the IJV but it’s not necessarily particularly long? (That’s my case on both sides… and also with hypoplastic (or quite stenosed0 transverse sinus on my smaller side, leading Dr Hep. to say that if I need it all the order would need to be First side, then STENT in transverse sinus (that crazy scares me) then other side… and that just sounds so so so so much and so many potential risks… do I live with the evil I know in my new and very tiny world that I am now used to or do I take what seems like crazy risk to maybe have a more normal life…)
You have posed a difficult question, @akc. For me, the surgery was very worthwhile & appreciated, but my body heals well. I will admit that full recovery from my ES surgeries took a year after each surgery. Those darn nerves can be very pokey to heal. I was “up & running” by about 2 mos post op after each one but had to dial back periodically since pushing myself too hard early on brought the symptoms back to the forefront.
It is my opinion that ES surgery is worth the risks because of the potential to restore life to a body that’s become nearly lifeless due to pain. I just reread your application story & firmly believe that you will benefit significantly from surgery because I believe at minimum reduce your pain, & best case, the pain will go away completely. You may need both IJVs to be decompressed for your migraines to stop, but getting your dominant side done first should bring improvement in your situation. Sometimes styloidectomy isn’t necessary for IJV decompression, but you must remember that it’s not always styloid length that causes nerve pain &/or vascular compression. Those can be caused by a styloid that’s normal length but very thick, angled, curved, twisted or pointed. So often those features aren’t significantly visible in a CT scan but are discovered once the surgeon can see the situation in the neck w/ his/her own eyes.
I wonder if your transverse sinus might open up once your dominant IJV is open & blood is flowing better? It’s hard to know the magnitude of the effects on the body when one significant area fails. Sometimes a domino effect occurs. I have very little knowledge of the vasculature in the brain, but I know the transverse sinus & IJV are connected in some way so it seems logical that one could be affecting the other.
In the end, I would recommend the surgery for you. Even some improvement would help your world not be so tiny. Try one side to see how your healing goes. If you get decent results, perhaps moving forward w/ whatever else is recommended is worth considering.
I’ll pray for you as you’re deciding what’s best for you.
It’s a hard decision if you don’t heal well from surgeries, but leaving a styloid in to compress the IJV can lead to Intracranial Hypertension, and all the nastiness which comes with it. My case was straightforward bilateral IJV compression, I was starting to feel quite ill before surgery with IH symptoms but I felt so much better after the first surgery that it was worth doing. Although the second side wasn’t as bad, I opted for that surgery as I wanted to be the best/ as well as I could be, and also while I could get the surgery done- there aren’t too many experienced ES surgeons about, especially ones who work with VES patients, it would be awful to put off surgery and then find later the surgeon isn’t doing these surgeries as much any more. (As has happened with the UK surgeon I saw)
Praying you make the right decision
Thank you so much for the incredibly thoughtful response (to Isaiah and @Jules ). Every time I come to this page I am so impressed with the attention that you, give. That you even went back to read my story… Truly I am so grateful. I have finally gotten my images, both initial MRI (no contrast) and subsequent CTA showing the VES (with the E not necessarily being long, but as you described, crushing the vein instead). I have been playing in the radiant 3D and have scalpeled away pretty much my entire face so that I can see really clearly the veins at all angles ) It’s certainly fun to play with “Look. Here is my faceless scull” . I have yet to be able to load onto dicom in part due to speed (visiting stepfather - internet is like a sloth!) and in part as in one of the studies there are so many images and somewhere in the middle - not beginning or end - are the pictures with my pesonal info (intake stuff)… need to just sit and open image after image until I find them all… But when I do I will share (and if not I’ll take some good screenshots) here in a new post and would love your thoughts…
I am in line waiting to hear from Dr Fargen who does provocative testing via angio/venogram. Although Dr Hepworth doesn’t think I “need” it as it’s clear there is an issue, I will feel a lot more confident in making a “yes” decision when the provocative tests do replicate my issues - or a number of them… @Jules, I really hope that you did find a good surgeon that did your other side… I will have to read your story more closey when I’m back home…
Big hug and so much gratitude to you both for your thoughts and for what you do here. This really is such a tremendous resource…
I was able to get surgery done with the same surgeon, but unfortunately he’s not been able to do so many surgeries now (NHS bureaucracy we think), so I was very lucky!
Just to prepare you, dicomlibrary is slow to load large files. I uploaded one that took about 10 hrs, & I have pretty fast internet at my house. It also did a great job of anonymizing all of them though we had one member who had some personal info that didn’t get wiped from one or more of her scans so it’s a good idea to check. I guess you have your work cut out for you in that arena!
I look forward to seeing & discussing whatever you end up posting when you do.
) It’s certainly fun to play with “Look. Here is my faceless scull”