For jugular vein decompression surgery, with shaving down of the C1 and removing the styloid, how long did it take for you to get back to your pre-surgical activity level?
I am new to the forum, and am so grateful for all the information others have posted.
My 18 year old daughter was recently diagnosed with jugular vein compression on her right side with 50-90% stenosis. We are looking at surgery with either Dr Hepworth or Dr Costantino. I would like to get it scheduled for this summer, so she can go back to college in the fall. However, I am wondering how much recovery time she will likely need?
Also, any tips on what helps with surgery recovery would be greatly appreciated!
@Jwshackel - Recovery times vary by the patient, but in general, especially w/ IJV decompressions, recovery takes a couple of months with full recovery taking up to a year. I would expect that your daughter should be able to go back to school in the fall if she had her surgery in the May/June timeframe. That said, I don’t know if you’d be able to get surgery scheduled that quickly with either Dr. Costantino or Dr. Hepworth. Have you contacted either office yet for a consult?
Has your daughter been diagnosed with Ehlers Danlos Syndrome by chance?
Thank you so much! Yes, my daughter was diagnosed (at age 13) with EDS. We have been very lucky to know that piece of the puzzle, and have been working with specialists. However, the JVC is a new diagnosis and likely a big part of her symptoms.
And yes, we already had our first consult with Hepworth, and have an upcoming consult with Costantino. We are hoping to get surgery scheduled ASAP but I realize it is super hard.
Do you know if most people feel WORSE after surgery for a few months, up to a year? Or does it just take that long to notice improvements? We are very lucky in that my daughter is able to maintain some activity level currently, and are hoping she can get back to this activity level within 2 months post surgery, but that may be wishful thinking. She would love to be able to stay with her class at school. If she misses a semester, she likely will be moved down a whole year. I realize a lot of people have had to give up a lot more, I just would like to keep as much of a normal life intact for her as possible.
Thank you! I read through these recovery stories and they were very helpful! I am hopeful she can get back to her current level of activity within 4-6 weeks post surgery, realizing it may take a lot longer for her to notice improvements. My older daughter has been through two surgeries, so we have experience with varied recovery times and understand that everyone’s body is different.
I had my first IJV decompression with styloid removal and C-1 resection almost exactly 2 months ago. While I still need the second decompression on the other side, I will say that it took me about 6-8 weeks to get back to a point where I would consider myself back to pre-surgery activity.
That said, I also noticed great benefits around week 6 from the success of the surgery. So even though I felt tired or otherwise had some healing going on (and still do), many of my debilitating symptoms from prior to surgery are about 50% less than they were prior. And the only things I really can’t quite yet do to the level before surgery was running and weight lifting. My stamina and strength have diminished, but that’s from non-use - not from surgery damage or anything.
If I was in your daughter’s position (assuming similar symptoms and success of surgery), I would say that I could go back to school at about the 5-6 week mark, but would ideally have liked the 6-8 weeks.
@Jwshackel - Because your daughter is on the younger side, she may recover faster than some of our members who were diagnosed at older ages. I hope that for her.
Many people feel a bit worse during the first week or two post op because of all the inflammation in the throat & neck from the surgery. The internal inflammation further irritates already irritated nerves & can cause vascular symptoms to flare. It can take 1-2 months for that post op swelling to fully subside, but usually by a month post op there are some definite positive changes. Even w/ symptoms resolving, physical energy can remain low for a couple of months which I think is the body’s way of putting energy into healing vs into other activities.
Thank you! This information is very helpful and makes a lot of sense. I am trying to be as proactive as possible and learn as much as I can knowing there will be things I can’t completely control.
Thank you! This helps a lot! My daughter currently can’t workout or do much in the way of physically demanding activities. She is able to attend classes, get her homework done, and occasionally see friends. Hoping she can return to this activity level about 6 weeks after surgery, but we shall see! I hope you continue to improve!
