I’m introducing myself…my name is Kim. I live in the mountains of Colorado. I have Ehlers-Danlos, a current CSF leak and Vascular ES. I have been beyond fortunate to find an ENT/head and neck surgeon that has been invaluable with this process.
I am awaiting my angiogram in the next few weeks and then my ENT and vascular surgeon will gather all their info and proceed with surgery. I do have narrowing of my jugular in a few areas as well as collateral veins from this. The angiogram will provide a guide and let them know if I’ll need grafts of the jugular.
The plan at this point is to fix the ES and CSF leak at the same time. Because of the Ehlers Danlos I do not metabolize anesthesia normally and that creates a problem.
The CSF leak has made me susceptible to meningitis and erratic spinal cord pressure (was in the hospital for 7 days last week).
Can anyone give me a heads up on what to expect here? Any tips on what I may need during the recovery process? Have any of you had a CSF leak or EDS on top of this crud?
I have really found this site to be a good source of information and comraderdie. Thank you for that
First, I’m so glad you’re able to have both ES & your CSF leak taken care of at once. The extent of your surgery may require a longer recovery period, but hopefully you’ll see BIG positive changes as you recover. I’m sorry you have so much to deal with all at once.
To answer your first question, there is lots of information on post op recovery in the Newbies Guide. If you click on the magnifying glass at the top right & type in “post op recovery” quite a number of discussions will come up that will give you a more complete picture of what people have experienced than I can provide in one post.
Here’s a quick run down of my experience:
The first week is the most uncomfy & painful. Days 3-5 post op are when most people experience the greatest swelling & thus pain, so it’s important to keep on your pain med regimen through that period. My surgeon also prescribed prednisone for the first 2 weeks which was very helpful keeping inflammation in my throat at bay.
You will have a sore throat even if your surgery is done externally because a breathing tube is inserted for surgery & that irritates the throat so cold shakes & smoothies, juices, water/drinks feel the best for food early on.
Covered gel ice packs to ice your neck (if you have external surgery) are very helpful (15 min. on & at least 45 min off - 3-5x/day for the first week).
Head elevation at all times. My surgeon recommended keeping the head elevated to 30+º especially when sleeping thus a wedge pillow (Bed, Bath & Beyond has a nice one that’s not too costly) w/ other pillows placed on top to increase the angle helps w/ this. Some people also find a neck pillow (like the sort you use to sleep when flying) is also a great help.
Inflammation & pain usually begin to decrease a bit in week 2, but the healing process overall takes a couple of months. For nerves & vascular tissues that have been irritated or damaged it can be up to a year +. I’m 4.5 years out from my first surgery & am still experiencing nerve recovery in numb spots on my jaw line.
My surgeon recommended Mederma w/ sunscreen for use on my neck incisions once they were sufficiently healed (about 2-3 weeks post op) to help reduce the scar. My scars are nearly invisible now for which I credit my surgeon & not the Mederma so much.
Please reach out to us on this forum for questions after surgery as we are here for you every step of the way - for “the good, the bad & the ugly”. We will do our best to encourage you & lift you up as you heal.
You can reach out to Della who has ED & had surgery in 2016 (click magnifying glass & type Della in the search box…posts involving her will come up. If you click on her name at the top of one of her posts, it will give you a link where you can send her a private email). I know there are others on here who’ve had ED & ES so hopefully someone will join in this thread to share his/her experience. I’m not sure about anyone w/ a CSF leak though.
So glad you’ve found camaraderie & info that’s been supportive for you here! That’s our goal.
Please let us know when your surgery is so I can pray for you especially that day.
I’m not sure that many of the members with ES & EDS have had surgery, or if they have we’ve not heard about it…hopefully someone will chip in.
Isaiah’s given you good advice, & there’s a ‘surgery shopping list’ you can search for that a member did with suggestions of what to get in ready.
I only know a little about EDS- I guess recovery could take longer for you? But it sounds like you have a good team around you, & that they have a good plan for your surgery, hope that all goes well! And ask if there’s anything else you think of!
I’ve had a quick look with the search function for CSF leak - there’s several mentions in past discussions, but not sure if they’re relevant to you, have a look
Hi Kim! I’m in the Denver area and have bi-lateral ES. If you don’t mind me asking - who is your doctor? I’ve been looking for one that has experience with ES as they are harder to find.
Thanks Isiah. Sorry for the delay but it’s been a rough time. All your information is very valuable. I just got the BB&B pillow that you mentioned. I probably got the popsicles too soon because they’re already gone😏
My surgery is Wednesday. They will fix the CSF leak, remove the styloids and graft the jugular. I will update when I can.
I see Dr. Hepworth in Denver. He has patients come in from all over the US for CSF leaks. When looking at my previous MRI scans he spotted the Vascular Eagle Syndrome and aneurysms…which were missed by previous doctor. Unreal. He is an ENT/head and neck surgeon. I can’t say enough good things about him. In my eyes he saved my life because had this not been discovered I would have had a dissection.
Good luck to you. It takes a month or so to get into him but he’s worth the wait.
Sounds like Dr. Hepworth has a good rep.
As someone with EDS and ES and pending surgery, we tend to lay down scar tissue really easily. Ive had to have several surgeries to take out scar tissue that was compressing nerves from ligament tears and from surgical procedues. I even had some specialized OT’s do deep tissue release in abdomen. One of my OD will be doing some tissue massage at some point to help break of the scar tissue formation. Some EDS people have very fragile skin externally and scar type products /bandaids really help.
Im curious mountain dweller what kind of anesthesia problems you have. I do as well but mostly around use of novacaines which EDS people metabolize very quickly. My hand surgeon who is an EDS expert uses carbocaine long acting and specific suture types on his patients. Good luck on the surgery
