As you may know, my daughter has had her constant non-stop headache for 7+ years now. She’s had many diagnoses and for the past year is seeing Dr. Hepworth. He did her sinus surgery and CSF leak repairs last year. Her IIH pressure actually increased after that.
She had ASD heart repair in Nov. 21.
Dr. H. had a cancellation this week, so her ES surgery was moved from April to this past Wednesday. The surgery went well, and he said her styloid was “extremely elongated and seriously impinging the jugular”. However, he expected immediate pressure changes but her LP following surgery showed it was still elevated.
My question is to those of you with IIH, if, when, and how long post-op did you finally get relief?
I’m so glad your daughter’s surgeries are behind her now (or at least I hope they all are!). Sometimes jugular compression continues post op because of the internal inflammation that occurs during recovery. The jugular vein itself can swell when the styloid is lifted off of it, as it recovers from the trauma it has suffered. It can take several weeks or more for the IIH to reduce or go away completely. If there is no change by 4-6 weeks, I’d say that’s cause for a discussion. If she has bilateral ES, sometimes having the second styloid removed is necessary, however, there should be at least 6 months’ healing time between surgeries to allow for recovery & for the body to adjust to its new normal. I know you & Dr. Hepworth will be conscientious to follow-up with your daughter’s IIH & ES surgery to make sure all is well as she heals.
Thanks for the info Isaiah. When she overheard that her LP pressure was still high, she commented “so the surgery didn’t work?”.
Yes, she has/had bilateral impingement, but they did internal vascular scans on both sides and Dr. Hepworth did not think he would need to do surgery on the right side. Although he did seem disappointed about the LP still being elevated.
I have confidence that she’s in the best of care with him. However, after all this time and so many specialists, procedures, diagnoses, treatments, and surgeries; she is losing hope and patience with continuing to work toward a solution.
It is really difficult watching her suffer, while still trying to be strong for her, and keeping up hope.
Thanks for all the encouragement. We really need it right now.
Sorry, to sound uninformed but what is LP pressure? Also I didn’t get to speak to Dr Hepworth after surgery and didn’t see any “scans” afterward, was that your experience? I know I meet with him tuesday.
As small a surgery as ES surgery seems to be (based on incision size), it is a major surgery & can take many months for the full benefit to gradually appear. I had symptoms that didn’t go away until 9-12 mos after surgery. At that point I figured I was stuck w/ them but they did go! ES surgical recovery is a true test of patience. I can imagine your daughter is done being patient after so many surgeries.
You are doing the best possible thing by being her advocate & the sunshine in her life right now. As hard as it is for you to see her suffer, know for sure that you are providing her the best hope of a good recovery. A positive mindset goes very far toward healing. I will be praying she will be like a phoenix & rise out of the ashes, & you’ll be there cheering her all the way.
LP = Lumbar Puncture (a.k.a. spinal tap). You might not have had one if you aren’t suffering from Intercranial High Pressure.
The scans were vascular imaging that were done internally, ultrasound and venogram. We didn’t see them ourselves, Dr. Hepworth just said they looked good and that she didn’t have to have the balloon angioplasty.
Keep in touch and we will encourage one another!
Thanks again for all of the positivity. We knew it was a complex and major surgery. It was just tough when the doctor is disappointed about the continued high pressure.
It’s very encouraging to hear your longer recovery story. I will always hang in there with her, but I must admit it is trying on the spirit, when we keep thinking, this one will be the final surgery.
We love the Phoenix imagery, that’s her little nephew’s name.
I had left side surgery with Dr. Hepworth in December. I also struggle with intracranial hypertension but did not have a LP after the procedure. I will be having my first LP in a month to see where my pressures are. I will be praying that her ICP subsides. Does she have bilateral ES? Does Dr. H plan to take out the other side since she is still experiencing high pressure? I am in the midst of this as well. Is there anything your daughter can do to try and reduce the ICP? I’ve heard of Dandelion tea, milk thistle and reduction of caffeine andsalt can help. Please let me know if you have any ideas as well, as I would greatly appreciate it! Please keep in touch! Please let your daughter know that she is not in this alone and that we will get through this.
Of course! Your daughter and I are surgery buddies! I haven’t had a non-stop headache for 7 years, but I have had 10 surgeries in my lifetime and know how difficult pain, in general, can be. My parents have been my biggest supporters and I could not have gotten where I am today without them. It’s very cool to see how you are advocating on behalf of your daughter. I think we are very lucky to have found Dr. Hepworth and I believe he is going to do everything he can for your daughter and me. I haven’t quite had this positive experience with other doctors as I have had with him. We can do this (:
I was very lucky & my vascular symptoms eased really quickly after surgery- I had bilateral jugular compression but had the worst side done first. I never had an LP so can’t comment on that but it does seem from hearing more post-surgery stories on here that I was in the minority, we’ve had quite a few members now who’ve taken a little while to improve. As Isaiah says, there can be swelling which will keep the pressure up, and also the other side may be contributing. Plus if your daughter’s had IH potentially for 7 years, maybe that will take longer for it to improve? Just a guess, I’d only had the symptoms for a year…
Just make sure she keeps semi-upright as much as possible, and takes it easy, thinking of you both & will keep praying for her, God Bless
Thanks so much for all your encouragement! Dr. Hepworth is the greatest, most compassionate, doctor I have ever met in my entire life. I have health issues too and have had many surgeries (17), so I have seen my fair share. My daughter has deal with a dozen surgeries already! I think you both are in good hands with a fantastic doc that’s definitely going to get to the bottom of all this.
Thanks for the positive reply and support. She’s had 4 LP’s now and all of them were high pressure and when tested high proteins as well. The whole ES jugular compression certainly explains both. I am trying to stay positive. It’s just tough when the doctor seemed disappointed post-op. Although, I am confident he will keep exploring options. I also agree that it may take longer, considering her body has been living in such serious pain for so long. It will probably take a while for her systems to just accept that things are potentially better now. Thanks again!
Thanks for the support, I really need it. Yes, she does have bilateral, but according to the venograms, Dr. Hepworth did not think he would do the right side. For now, he wants to wait 6-8 weeks to see how recovery goes. She has been on diuretics for years and is to continue. She usually avoids caffeine, salt is tough though. She was diagnosed with POTS years ago, had multiple daily saline infusions for Dysautonmia, and craves salt now. We are trying to reduce it. Although, it’s also hard to not give in to her post-op rewards (snacks+). Thanks again for hanging in there together with us.
From what others have said about Dr Hepworth he sounds very caring & thorough, & so hopefully will keep exploring options if this doesn’t resolve for your daughter. Must be hard for you trying to keep positive, thinking of you
@Snapple2020 has much experience with POTS, dysautonomia, & ES both for herself & her daughter (daughter has not has ES but Snapple has) who, like yours, has multiple serious health issues. Connecting w/ Snapple via private message might be helpful. I think you’d be a good support for each other.
I was reading your recent posts about your daughter’s surgeries, tests. Would you mind sharing with me the results of her LP? I’ve been dealing with pressure, headaches, balance issues and other weird symptoms upon standing from seated position. Done a bunch of neuro tests. Had an LP done 3 weeks ago. They saw slightly elevated pressure but did not even bother calling me back. I am trying to figure out what’s next. More tests for CFS leak or other stuff. I do have elongated styloids but am afraid of surgery, especially after reading about recovery.
@CaliEagle, Another member who would be good to “talk” to about your balance & & other symptoms is @Snapple2020. She has encyclopedic knowledge because of all she & her daughter have been through.
If you have pressure headaches, you could possibly have vascular compression, & the doctor you should try to work w/ is Dr. Hepworth in Denver. It might take awhile to see him, but he specializes in vascular ES & has helped many of our members who have it. Unfortunately, the only way to resolve the symptoms is to remove the styloids. Surgical recovery really isn’t as bad as it may sound. It can be slow for nerves to heal but that doesn’t mean you’ll be debilitated over that time. Most people are able to start back to work & into life a week to two weeks after surgery.
Isaiah, just wanted to let you and everyone know, while we LOVE Dr. Hepworth, we found out while we were at his office on Wednesday, that he is not taking new patients.
We were there waiting for our daughter’s suture removal and heard the receptionist tell callers “sorry, but Dr. Hepworth is not taking new patients at this time”.
While I know this is sad to hear, hopefully as all his current patients recover and hopefully don’t need his services anymore (my optimism), maybe he will have room for more new patients.
