Brain Aneurysm Support Community

3+ years out from PED still having problems

My PED was done on 12/1/16. Since that day I have had head pain in the region of where the PED is and my pain ranges from level 6 to 7 every single day, along with the stabbing pains. I have tried all pain meds to no avail. They give me fentanyl in the hospital which eases it a bit, but not completely. I have been told the pain is a Migraine. My thought about that is Migraines GO AWAY!! I have had migraines in the past that were called “Trauma Induced Migraines”, these started after a T-bone accident. This pain is nothing like that. I have done the, “is this worth it” several times since the PED was placed. I even told my surgeon if I knew the pain that I would be in I wouldn’t have had the surgery.

One month after PED was placed, I had a stroke. The only lasting problem from the stroke was right eye blurriness. My problem is since the stroke, almost every month to 2 months I have right sided weakness. I have gone through many angiograms and stent is where it should be. They have no clue what is causing these right sided weakness spells. I go through a code stroke every time I go to the hospital. I actually quit going, unless there is a lot of extra pain in my head.

When the PED was placed they told me about the placement and what could possibly happen. Where they placed the PED it covered the aneurysm and also covered an artery. We, I, knew about this from the start. The worse is now happening, this past year they have found that the artery is slowly closing. I have Neo Intiminal Hyperplasia. Eventually it will stop blood flow. I have been sent to the University of Miami a couple of times to have a Brain Bypass performed. The first visit they did not see it necessary to perform it then. The second visit, they found they cannot do it because my veins are to small. Day of discharge, July of '17, I was told I have approximately 2 years left.

I am not writing this to scare anyone, I am just wondering if there is anyone out there that is going through these same problems.

I keep reading posts that it takes 3 months to 3 years to feel normal. I am so happy to hear about the recovery that most of you are having. God Bless.

Is there anyone out there that still has some of the complications I have from your PED? Needing guidance, suggestions, emotional support.

Jen99, can’t help with the PED, sorry my experience is limited to coilings, the last with a balloon assist.

My Neurologist had prescribed Magnesium oxide for the pain. He shared he does it with all his patients as his belief is we don’t get enough magnesium in our diets here in the States. I had some embarrassing side effects, so I had to keep lowering the dosage. Make sure to ask your Neurologist or Neuro surgeon about this before taking it. The other thing I did was an SPG block, the Radiologist shoots pain killer, I’m not remembering which one. The first was fantastic and it put my daily migraines to fewer and fewer. A year or so later I had another and it hurt like the dickens. Apparently it’s not supposed to hurt that much. But I haven’t done another, I’m really not into pain. Here’s an article about one type https://www.medscape.com/viewarticle/842294

As for doctors giving us a time limit, it amazes me still to this day. Back when I was in my Junior year at college, my father and his brother were both given six months. Dad had SLE which was and is rare for males. My Uncle had a brain tumor of significant size. He had been misdiagnosed and treated for malaria. My Uncle lived about six years, my Dad didn’t die until his mid 80’s.

We never truly know when it’s our time. What we can do now is live each day as fully as possible. Tell the people you love that you love them and why they’ve been so important to you. Hug the one’s you love each and every time you see them. These are practices I started after my rupture.

The other thing we did was strengthen our wills and all the powers of attorney’s, even to the point that if either of us has to be placed in long term care, our beneficiaries must contact our attorney first. This is in case we are in an accident and neither of us can make decisions. We went to an attorney that specializes in elder law, though we are only in our 50’s. It reduced my stress dramatically.

We also have our funeral plans completed. The only thing I still need to decide is if I’m going to donate my remains to WFBH medical university or give them to a forensic medical school. I sort of want to write a letter if my remains go to a forensic university just to help guide them through my various injuries. But my brain could teach a lot of the Neuro students a thing or two…

Also, I don’t do drama with my family nor my friends. I don’t deal with it well any more, so I stopped.

Whatever time you have left, live it well.

Hi Moltroub,

Thank you for all the things I can look into. At this point, I will try anything to relieve the pain!

I am going to look into a will and power of attorney. I have a living will that was done prior to the PED put in. I am clueless when it comes to that kind of stuff. We have been working on putting everything into my husbands name to try and make it easier when it is my time.

My Primary told me the Dr. that told me that is NOT GOD!! God is the only one that knows your time.

Jen99

Jen99, I firmly believe your Primary has the correct answer, especially given my family’s and my own experience. From the day we are born, the ending of our life is guaranteed. But we never know when, so it’s best that we do the best we can while we are able. I’ve been around enough of dying to not be afraid. As Pooh says “It is what it is”.

When my Dad was at his end, the Priest was trying to console those of us in the ICU room. He used a lot of innuendos which frankly, I don’t understand anymore. He was making me confused. I looked at this man and said “Death no suck for the dead, only the living.” My Dad started laughing so hard, he choked. The poor priest didn’t have a reply, he started in again…I said “You make this tttttto ccccccomplicccated, yyooou ffforgett your cccathechischism”. I wish I could put my accent in. Even Mom started laughing, she had taught those classes for many years. Amy snorted and had to turn away, the rest just had their mouths dropped open, even the medical team. I looked at my partner and said “What”? I was completely baffled. Sometimes with a rupture, days can be very interesting…

I am sending you a virtual hug, wish I could do better.

Thank you!

Yes, I dont have PED i just had 2 stents placed one in right and one in left and all 4 aneurysms coiled. My arteries are closed and closing even 2 non stented segments. My right ica, mca and aca are closed and the left is close and mimicking the right. I developed moyamoya vessels and good posterior collateral flow. I have had 2 groups say cerebral bypass and 2 say no too risky and uncertainties. I do not want the bypass. Since I developed this issue intimal hyperplasia. My coils and stents were placed late 2016 and last procedure March 17. I had 3 strokes April 17. When I was told to stop the plavix. I am on that now forever. My stroke risk is high either way but the bypass scares the crap out of me. Living like this does too. I had aneurysms treated so I would not feel like a ticking time bomb and I am in a far worse position now. I had neuroform stents. I do understand how you feel. There is not enough info and research done to prevent intimal hyperplasia and what to do once it takes over. Stay strong! I have chronic headaches and vision issues. When the left closes off I could stroke. The moyamoya vessels are delicate and could rupture.

Thank you, I thought I was the only one that was experiencing this. I hate it! I actually told my Surgeon that if I knew then what I would be going through now, I wouldn’t have had the surgery…