Sorry I’ve been slow with all the responses, but I’ve been so darned sick.
I am having a complicated 9+ hour surgery next Wednesday to graft and repair my skull based CSF leak, remove my devil horns (lol) and repair/graft my jugular. The EDS causes complications in that I do not metabolize anesthesia well and any surgeries I’ve had has resulted in wound dehiscence because my tissues don’t heal.
You all have given me so much valuable information and knowing that you’ve come out the other side of this is comforting. Isaiah it sounds like you’ve had two of these surgeries…wow!
I’ve got my wedge pillow, popsicles (need more) and everything else lined up.
If you could just take a second from your day on Wednesday and send me some good, healing energy, prayers, or whatever you can it would be greatly appreciated. I’m scared crapless to be honest, but this needs to be done.
Thanks so much Isaiah, your prayers are appreciated. I know this is the beginning of taking my life back! I’ll update when the drug fog wears off. Your list for the surgery was really helpful
You are not alone. This site is a wonderful resource for information and support.
My thoughts and prayers are with you Mountain Dweller. All the best for a great outcome. You’ll be out hiking in the beautiful Colorado mountains before you know it.
Will definitely be praying for you! A major op, but hopefully they will be able to tackle everything in one go- sounds like a good plan with your EDS problems making surgery complicated. I’ll pray for peace for you in the run up to surgery too, it’s understandable you’re scared…
Wishing you all the best, thinking of you…
HOORAY FOR HIKING! If you really live in the CO mountains, you’re blessed to have wonderful hiking at your doorstep! I hope you’ll be able to get back to it very soon!
Yep, I am up here at 8500 ft and every morning I look out my window and realize how blessed I am. I’m hoping to be hiking those waterfalls and St. Mary’s Glacier again! Thanks Isaiah😃
I woke up from surgery only to find out that they found two CSF leaks, which they repaired, but they did NOT address the ES. While the angiogram showed that the elongated, calcified styloids were impinging on the jugular in two areas the venogram, done while under for CSF leak repair, showed that I still had good blood flow. As I have EDS and my tissues do not regenerate well my doctor made the call that the risk did not outweigh the benefit.
As you can imagine, I was all set to wake up and have all of my problems solved and when this didn’t happen I was not a happy camper. However, after I gathered myself (mainly after the drugs wore off) I realized that it was a good call on his part.
I will heal from the repairs of my leaks, which should take three months, and then we will assess what’s happening with the ES. The one thing that I have noticed is that my heart rate is much worse since the surgery (200+ just walking up the stairs). I took Propanolol prior to surgery but since surgery it’s not working.
So I’m back to square one in terms of the ES. Still with neck pain, tinnitus and all that good stuff.
I appreciate everyone’s prayers and good thoughts.
So sorry that they weren’t able to get everything sorted for you in one go…I hope that you do feel some benefits from ‘plugging the leaks’ . What have the doctors said about your heart rate & the medication not working? Have you had your post-op check up ?
I hope that at some point you’re able to get help for the ES- maybe the steroid / lidocaine injections would be a way forward for you while you wait? Some members have found it’s helpful with pain relief.
Thinking of you, a big hug & will keep praying for you…
My doctor said that it can take 3-6 months for the CSF leak symptoms to regulate. Because of the two leaks my body has been manufacturing an abundance of CSF fluid to keep my brain afloat and now I’m alternating between high and low pressure headaches.
Same with the heart rate…up to 6 months. I can’t take beta blockers because I’m at high risk for an optic strokebecause the leaks have caused problems with my eye discs.
I’m disheartened. My styloids are elongated and calcified and as you know this is causing me a great deal of neck pain and problems. At this point I’ll wait it out, see how this ends up and start from square one. The EDS is th wild card here. My brain understands this, but my heart is broken. Hopefully my body can regulate itself in the next few months.
I’m so sorry for your situation. I can imagine how disappointing it was to wake up post op & find out your doctor hadn’t done the ES part of your surgery. If he is still leary about doing it down the road, it might be worthwhile contacting Dr. Samji, Dr. Milligan, Dr. Cognetti or Dr. Newman to see if one of them would be willing to help you. We’ve also just acquired the name of Dr. Mendelsohn in Los Angeles area who appears to be experienced w/ ES. I’ll get him added to our ES Doctors’ List ASAP.
I’ll be praying for you to heal well & quickly from the CFS leaks so that your ES can be dealt with safely.
Hi MountainDweller,
Your story hits personal string for me as I also have a CSF leak (skull base) and was just recently diagnosed with Eagles Syndrome with your doctor. As a healthcare professional myself I can guarantee you are in the best of hands (I saw >30 specialists prior to him and he is the only one who has given me hope with an exceedingly complicated case). I understand your frustration with not having it taken care all at once of but just the leak repair alone is a massive surgery to recover from, I have no doubt his decision was worthy and in your best interests. A CSF leak with EDS is not uncommon but does increase the complication factors as you know. The skill set of our doctor is way beyond the average Otolaryngologists, his professional connections are excellent and his kindness is extraordinary.
I hope this gives you some comfort as your navigate the fluctuating intracranial pressure headaches and healing. I also hope you are surrounded by a supportive primary care physician, family and friends. If there is anything I can do to help don’t hesitate to reach out to me.
Thank you all, I appreciate the support. I’m glad that Dr. Hepworth didn’t just go ahead with the styloidectomy. We’ll be monitoring it and when/if the jugular is impinged enough to effect the blood flow then it will be addressed. He made the right call, it just upset me because I was as ready as I could be to have it all done at once. Now when it’s done my body will have been recovered from the leak and I’ll be better equipped to handle it.
I’m really lucky to have someone like Dr. Hepworth here, he’s amazing.
Great attitude, MountainDweller! I totally understand the disappointment. Sometimes we just need to regroup in order to see the good in the decision after something like that. You’ve done that very well!
If you really live in the CO mountains, you’re blessed to have wonderful hiking at your doorstep! I hope you’ll be able to get back to it very soon! 
