Ill effects from Coil Occlusions?

In early May, 2010, my feet went numb. My primary care couldn't think of any reason for the numbness. Several days later, I developed a terrible pain in my upper back, I went to the ER. No cause was found and I was sent home. The next day, I developed a severe headache with vomiting, I went to my primary care doctor the next morning, was admitted to the hospital. Again, my back was checked and I was sent home the next day, even though I begged and cried to be kept. I went by ambulance to our local hospital that night. I was treated for pain, sent home with a referral to a neuro-surgeon. I saw that doctor in a few days, he scheduled an out-patient MRI of my head.

The day after that MRI, his office called to tell me that I had triple cerebral brain aneurysms with a bleed (terrifying as my mother had died of an aneurysm). I was sent to a neuro-ophthamologist, then to a brain surgeon, who referred my interventional radiology.

The giant, bleeding aneurysm was coiled the next day, the next largest was done in August of 2010 and the smallest one was coiled in January of 2012. The 3rd anneurysm was not going to be treated, but I have another condition that can cause blood clots and the doctors decided that leaving it untreated was unsafe as I would not be able to be treated with blood thinners should the need arise.

After every coiling, I have suffered severe (migraine) headaches, vomiting, diarrhea, exhaustion, vertigo, and occasionally my feet go numb and I get nerve pain in my back or leg. The headaches have never gone away, not from the very start of the symptoms. My doctors tell me these symptoms are unheard of after coilings. They say patients suffer no ill effects from the procedure or stable aneurysms. I was wondering if there is anyone else out there who has suffered any similar symptoms to mine? My aneurysms sit on my optic nerves, all three are in the brain and not the sinus cavity.

I have two young children, 8 and 3. I pray continually to regain the strength to care for them properly. Any input or insights you have would be appreciated. Two weeks ago, I had to be admitted to the hospital through the ER because a virus nearly did me in. When I explained to the ER doctor why a virus could take me down so fast and the history of the coilings and the after effects, he says "have them removed, when a patient can not tolerate them, we just take them out". Then he left my room and I never saw him again. Has anyone had to have their coils removed or even heard of such a thing?

I am grateful for the chance to share with you all. I find you while searching AGAIN for symptoms after coilings. Thanks for being here.

Again, Hi and Welcome Julie...!

You will feel ...so not alone as you get responses to your post and symptoms...

~ Cyber~thoughts Colleen

Thank you, Jim. I do have a very good neurologist and she follows me for the headaches and numbness. She doesn’t seem to think the constant migraines are from the aneurysms or the coilings. I thought the ER doctor was a bit off base as “taking them out” would require surgery.

Lynne, thx for the laugh! After awhile you do just start to agree with the uninformed. The thought of completing a complicated brain surgery via the nasal passages… :slight_smile:
It was so scary to find out that I had been bleeding into my brain for almost a month before it was diagnosed. The day I was released from the hospital and begged the doctor to do more testing, he said if I had a headache to take some pain medicine and call my doctor. I wrote to the hospital after the second coiling and told them they had released me with a brain hemorrhage and three aneurysms, and, what the doctor had said. I just wanted an apology but he would not give me one. it was for the best because I was treated at a better hospital.

Hi Julie,

I had my coiling done nov 4th 2010. I had headaches every day for 15 months. Vertigo off and on for 10 months.Drs. said its not from coiling..they cannot explain it. Have been headache free for 3 weeks now

Hi Julie,
I have had multiple coilings and had occular migraines until I had three of mine clipped four years ago. Are the coils they used the coated kind? If so, I would ask your neuro if it is possible you are allergic to the coating.
Tammy

I don’t know if they are coated, all I know is they are platinum. I’ll call the surgeon and find out. I have wondered about an allergy because I can not wear metal jewelry. what was it like to have them clipped?
thanks, by the way, for your comment.

hi, Deb, thanks for your comment. I was starting to get back on my feet. The break-through headaches were starting to come further apart and not last as long, although I still had the daily headache. Then, in January, the third coiling was done and I am back at square one. I don’t understand why the doctors don’t see a cause and effect if there so many people with these symptoms.

i had my 5mm anny rupture treated with coiling in october 2009...i came out of the hospital with an extreme sensitivity to light and sound,,both of which when i would be around for too long of a period would bring on a headache,,i dont recall ever just waking upp with one,,when your recovering try to keep your surroundings as peaceful and dim as possible...just until your brain can adjust to getting you and itself better, our brains do not like to be tampered with..i believe the headaches are part of the healing process. i hope you get well very soon and have a great success in this place we call our new lives..post-anny..its not too bad,,just thanking the Lord above for allowing us to still be here...prayers n love coming your way..

Hi Julie and welcome, it is very frustrating when doctors say these things, the last time I went to see my surgeon I was told that I should not be having headaches now (I had a coiling last February with residual aneurysm and am looking to have second aneurysm coiled this spring) I wanted to scream at him you want to be in my head when they start, I also have funny digestive problems which I am not sure are related but never had them before my rupture, I wish you luck with all your answers and I hope your neurologist sorts it out for you soon xxxx

Julie, welcome, and, I so regret meeting at this site! However, we have such strong mutual connections...

We can only imagine the love, care and concern for your children; pray that you have strong support, hubby, family, friends, a nanny, part-time sitters, house-keeper, or other home health care resources.

You and I and so many many others, have the same or similar symptoms; a number of us have issues worse post-coiling, than the symptoms initiating diagnosis and/or emergency. There are a number who have been very pleased w/their coiling. Tho, the same variances in recovery occur in those who have had surgery/clip.

Two members here have said they had coiling, and f/up surgery/clip; the coils were not removed.

Julie, ask your neuro-specialsits about what the ER MD said; possibly call the ER MD. We know of no stats on coils being removed later. That may also be a question for you to our site "ask the doc" ...

Hugs and prayers for you to have help at home to help you regain your strength.

Pat

Julie.

WOW! Your story sounds like what first happened to me in 1969! It's hard to believe that this sort of thing still happens.

I pray that you will have a quick and full recovery.

Carole

Lynne,

What Julie has gone thru is not at all uncommon. My persnal opinion is that they are related mostly to procedures; and, it displays specifically on variances of my third ED before admit and the procedures. This thrid ED MD was excellent; even noted problems w/my right elbow (too long a story) that the PCP and orthopedic specialists had not noted in any records.

Wow, tho, he saw my elbow as well as my brain.

The PCP I had for three ER did the initial testing/diagnosis immediately after my first; the day before the second ER, I saw her for tingling/numbness of my left hand/arm. After coil DC, she told me the numbness/tingling in my left was paresthesia, not uncommon after a stroke. And, she had not diagnosed that the day before my major second emergency.

Relax w/no concern of your PCP, or find a new one? I did.

I would find a really good neurologist as others have suggested....I don't think the er doc knew what he was talking about although as others have stated, i think there are different kinds of coils. i have platinum and titanium. There is a test, clifford materials reactivity testing that can be done for surgical materials sensitivity. (they also do dental materials as well) and can easily be ordered by your doctor. Before considering undergoing anything like redoing coils, i'd have the testing done for $295; alot of money, but it would tell you whether you were actually sensitive to the platinum and/or any other materials they might consider using if they were to redo them. It woud be a good place to start rather than having a surgeon guess as to the cause. They send you the kit, the lab draws it, sends it to them and you get the results within a few days..again, be sure to ask for the SURGICAL materials test if you go this route. I'm sorry you are going through so much and hope that you will find some answers soon! Don't give up...

Shana, grand of you to provide this Clifford materials site info.

Hi Shana,

Thanks for the information on the Clifford materials reactivity testing. I expect that I will make use of it as I am allergic/sensitive to many common materials. The most serious medical crisis that I've had since my annie ruptured was my body's rejection and extrusion of absorbable sutures after what should have been a simple hand surgery. The pain that I experienced was second only to the pain of my aneurysm rupture. (The rejection occurred 28 days after surgery.) Afterwards, I couldn't help but wonder if this experience was a way of alerting me to dangers of Vicryl sutures should I have "more serious" surgery.

A small segment of the population has allergic reactions to Vicryl sutures. These sutures are widely used in all surgeries except surgeries of the heart. When I researched this a couple of years ago, after my problem, I read that the sutures are not used in eye surgery. However, my opthamologist told me just last month that they now use these sutures in eye surgery, also. My new neurosurgeon also told me that he regularly uses this type of suture in his surgeries.

Carole: Here is a link to Clifford. Before ordering I would call and ask any questions to make sure that they test for the SURGICAL materials you are wondering about. I know the dental panel includes reactivity to metals...as far as the surgical panel, I would ask ahead of time to see what is included since these are two distinct panels. Many doctors are clueless about reactivities, so make sure to find one who is willing to listen. The test may help you have some "science" to back you up although to be perfectly honest, some doctors/dentists think this testind is a "scam" as well as the dentist who invented it. He lost his license because he did the amalgam exposure. Personally I find it to be very helpful and have switched to a dentist who is willing to incorporate the results into my care. Best of luck to you Carole and sending positive thoughts for your healing. http://www.ccrlab.com/what.html

Thanks to everyone for your thoughtful comments, prayers and concern, and information. I do have a very good neurologist who follows me for the on-going migraines and numbness. She is very compassionate and does what she can for me, but no one can find a cause for the pain and all that goes with it since the doctors I see don't feel it is an after affect of the coiling.

We do not live close to family. I am a stay at home mom, and we are now paying for childcare. Our church and our friends have been wonderful in helping us and doing all they can.

My 3 year old son has special medical needs, mostly GI problems. He is feeding tube dependent. He has come a long way and is doing pretty good these days. The grace of God and the power of prayer! My 8 year old daughter has kind of been a Pandora's box this past year. She has a severe learning disability but is wicked smart, she suffers from anxiety (imagine what a sick mommy does for her), she need OT for writing, she has two therapists who work with her. I am the parent who manages these two kids and it is hard to be sick and stay on top of things.

I will follow up on the possibility of the of the allergy. Thanks for posting the link. I can't wear even pure gold earrings without a reaction.

It is somehow empowering to know that I am not alone. To hear appointment after appointment that aneurysms and coilings do not cause headaches and all the other side affects made me start to wonder if I was making myself sick. Thank you again for being here.

Sorry Julie...why I typed Carole is beyond me....I am still having cognitive issues; my aneurysm ruptured 9 weeks ago, I apologize for the mistake. Anyway, sounds like you have a lot going on and know that we are all routing for you and sending positive thoughts and prayers to you and your family. Take good care Julie.

It's OK Shana, I get things mixed up, too. It's a good thing I am not driving, yet, or I would surely leave one of the kids in the cart at the grocery store :)

I hope you are doing OK, I'll keep you in my prayers. I can only imagine what you are going through.