My experience with venous stenting for intracranial hypertension
In September of 2018, I had 2 stents placed in my right transverse sinus for treatment of intracranial hypertension (IIH). My stents were performed by Dr. Patsiledes at Weill Cornell hospital in New York City.
Prior to stent placement, I had 3 spinal taps done, which showed pressures of 34, 25, and 30. Normal spinal fluid pressure is around 8-15, so mine were quite elevated...especially because of my small size.
Based off of an MRV scan done of my brain, Dr. Patsiledes determined that I had stenosis in my right transverse sinus, and could benefit from stenting. Before stents are placed, a cerebral angiogram needs to be performed to check pressure differentials across your veins to verify you’re a candidate for stenting.
The day of my stent placements
Some doctors perform the angiogram on a different day prior to the stent placement, but others will place the stents immediately following if you are a candidate. My neuroradiologist does both at the same time.
Before the procedure, they did some blood/urine testing in pre-op and placed my IV. My doctor came and went over the details of the angiogram/stenting procedures. The angiogram needed to be done while I was still awake, as that ensured the most accurate results.
I was only nervous for the angiogram, as I knew they’d be going up into my brain while I was awake. They gave me some “calming” medication, and I don’t remember many details of the angiogram.
I remember my doctor saying “you’re about to feel a lot of pressure in your head” while doing the angiogram, and I did feel that. Not too long after, he said “we’re doing it” (meaning placing the stents), and they gave me general anesthesia to place the stents. It turned out that my stenosis was actually much worse than he had thought based off the MRV.
When I woke up, I had significant pain behind my right eye through to the back of my head. My doctor said this pain occurs in about ⅓ of patients. I was also quite nauseous. But other than that things went okay.
The points of entry for placing the stents were through my wrist and groin. Because an artery was accessed, I had to wear an inflatable brace on my wrist to prevent bleeding. I don’t remember having much pain/soreness at the puncture sites,though I had massive bruises.
Most doctors have patients stay in the ICU or elevated care neuro units overnight after stent placement. Don’t be too worried about that. They came in and did neuro checks every few hours through the night, but other than that it was just like any other hospital stay.
Here's me after my stent placement eating a taco, haha!
How long did recovery take?
Doctors will tell you recovery takes about a week, but many patients will tell you it takes weeks or even months to recover. It really depends on the patient.
For me, my “stent pains” were really bad for about a week, and they gradually started to decrease over the following 3-4 weeks. For the most part, my stent pains are gone, though I occasionally get a stabbing pain through my right eye to the back of my head that I know is from my stents. Of course, recovery is very uncomfortable, but it wasn't terrible. Especially when you’re used to being in pain 24/7.
About a week after my stent placement, I developed a serious infection that landed me in the hospital for about 5 days, so that slowed down my recovery quite a bit as well.
I had to be on plavix (a blood thinner) for 5 weeks, and am on 325mg asprin daily for the year following my stent placement. Other that easy bruising/bleeding, these blood thinners usually don’t have too many side effects.
Were my symptoms resolved?
Please don’t let my experience with stenting affect your decision, as many/most people that have stents placed do see improvements or complete resolution of their symptoms. Whether or not you decide to get a stent is up to you and your doctor.
Unfortunately, my symptoms were not improved much as a result of my stenting. I did get some relief from pulsatile tinnitus on my right side, but now experience it on the left. My neck/back of head pain hasn’t been resolved, but the pain behind my eyes has been slightly improved.
My situation is a bit unique, because I also have something called chiari malformation which causes very similar symptoms to IH and often impairment of csf flow (so IH and chiari are related). I also have POTS and my doctors are suspecting a connective tissue disorder called EDS (Ehler’s Danlos Syndrome). All of these other problems are likely why I didn’t see the relief we were hoping for with this stenting. I am travelling back to Cornell in January to be seen for chiari.
I did have a spinal tap performed 3 months after my stent placement, and my pressure had come down quite a bit, though still mildly elevated. The severe stenosis in my right transverse/sigmoid junction has been resolved, and my stents are working just as they should, which is great.
Do I regret getting stents placed?
I don't. Having stents placed is a much less invasive surgery than having a shunt placed, and there are generally less long-term complications. I did have severe stenosis of my right transverse sinus, and virtually no function of the left, so you could argue that the procedure was necessary.
Those that suffer from intracranial hypertension aren’t strangers to pain, so recovery from stenting hopefully won't be too difficult. Of course, there are risks with stenting, and every person heals differently, but if you have a highly qualified doctor perform the surgery, chances are you’ll be just fine!
If you have any questions or comments, leave them below. I’d love to hear about others experiences with stenting for intracranial hypertension!