Really need someone to talk to!

That is GREAT!!! I am so happy you did so well!!! I can’t get mine coiled because of the same reason, wide neck!!! Please keep me updated when you go back for your scan and thank you for sharing a positive story, it gives me hope!!!

Hi Jennifer,

It is good you have it scheduled! Mine was in the Circle of Willis pressing on the optic nerve and was coiled in 1998 at age 40. My vision was not affected at all. The only lasting effect I have is a loss of smell & consequently taste is muted a bit. It sort of got smashed when they were in there. But I can see & am alive! As you will be too!!!

The angiogram is easy. The worst was waiting for hours after it before they would let me go home until they were sure the groin cut was sealed. They really didn’t like it when I turned my head to see it on the screen when they got to it though! So they left the pic up on the screen until they were done and showed it to me. I was out of the hospital in 4 days, no blood thinners needed & minimal pain meds for a couple of weeks. The stitches hurt/itched more than anything! I did nap often after the surgery.

It is normal to be nervous. It’s not exactly something everyone strives to do in their life! It did change me though–for the better! I am much more appreciative of the little joys in life, probably more tolerant of others too. Stay in touch through this website, it is a great source of support and information! Good luck!

Linda

I would recommend a coil surgery through Spectrum Health in Grand Rapids, MI. Clips can be scary. My son has about 40 feet of coils in his aneurysm. His was repaired at Cincinnati Children’s. Hospital. I look at it this way, I would rather be here and have the chance not to see and to hear mt kids/family laugh and giggle than not be here at all. Look at it from that persective. Don’t take any mortrin either, that increases blood pressure which increases blood flow. Keep me posted. Good luck with your surgery. Brain surgery can be scary but you will do just fine.

Amber Jensen, Charlevoix, MI

I spelled Motrin wrong.:slight_smile: OOPPSS

Neurofibromatosis is usually diagnosed in childhood. These children present with brown café au lait spots. They develop tumors on their nerves in their bodies or under their skin. I believe the tumors are usually benign although they can turn malignant. Hope this helps you to understand this disease.

No I was not clipped. When they got in they determined it was not safe for me. I am ok with that. That chose what was best for me. They assured my husband after surgery that annie was going no where. I truly believe they don’t know for sure what is going on until they get in there. They will do what is safe for you. Nothing is life is 100 percent. They took me back to surgery because I ended up with a CSF leak. It had to be repaired. Don’t worry about anesthesia. You will be monitored closely. Hang in there.

mine was a 3mm in Circle of Willis once in they found it was a bit worse and said it was great i had the clipping.i was a little sick to my tummy from the anesthesia but they gave me meds to cure it .the pain is controled with the meds i wont lie and say there is no pain but it not bad and mine was controled easy with meds. i dont even need them now i can go all day with no meds at all sometimes at nite i do still need something to help with pain/sleep.i was able to get up as soon as i left icu which was 24 hrs later a little lite headed at frist and very slow alittle week but not to bad i walk alone to and from the bathroom no problem.i was in the hosp. a total of 3 days no problem with talking or thinking or anything like that i did sleep alot.most of the time in icu i was asleep.my mom stayed with me the whole time.my surgery took like 5 hrs.but it felt like 5 mins they put u to sleep and then it is like 5 mins later your awake .i think it was worse on my family i joked that they should put them out til i am done to save on stress. the tiredness i belive is from healing i was told before hand this is normal .just listen to your body it lets you know when it is time to rest.thank you so much for your prayers. anything else i can help with feel free to ask i dont mind a bit we all need each other :slight_smile: hug and prayers nancy

Just checking in on you to see how you are feeling??? Did you get your staples removed yet??? Are you sleeping a lot?? Let me know how you are doing!! Thinking about you!!

That is why I don’t want to wait, I have heard too many stories that once they got in they were glad they did because even though it was small it could have ruptured anytime!! I am glad you were up walking around and everything shortly after… That is encouraging to me!! You are right about the anesthesia but I have only been put to sleep one time and that was only for 45 minutes for a kidney scope for kidney stones. I have had twilight for my wisdom teeth and stuff but only once with general anesthetia!! I am worried about that more than anything!! Thanks for talking to me and helping me through all this!! How are you feeling??

Thanks Donna for the explanation!! My sister died of a pontine glioma in her brainstem but I never heard of the other mentioned disease!! How are you and what is your story?? I would love to hear about it!!

Thanks Linda!! I am super happy to see you never got anymore also!!! That is wonderful!!! You are very encouraging and I thank you for your kindness and time to talk to me!! I appreciate it so very much!!!

I am so vey sorry that your son has had such a hard time, but I am happy to see he is doing well!!! What a strong mom you are!!! I lost my 7 year old sister to a brain tumor when I was 17. We were ten years apart so she felt almost like my own child!! I took care of her all the time!! It is never easy to see a child suffer so I understand your pain. I can’t have mine coiled, they actually said that in my case it would be safer to clip it. I appreciate you talking to me and give your son a big hug for me!! God bless!!

yes, I got my staples out. Instant relief! Yeah! on to healing.

I am hanging in there. I have good days and bad days but I have to be grateful that I was given the gift of life. My story is that I woke up at 3 am with “the worst headache of my life,” along with nausea, sensitivity to light, stiff neck. I laid in bed for 13 hours, unable to move, to stand up and in the dark with no TV, radio, lights, phone. I never had headaches so I thought that I was having a migraine because I was changing life. I should have known better because I am the second generation. Instead of laying there, I should have gone to the ER. My neuro suspects that I leaked that day. The next day I called my opthalmologist and he brought me right in. My eyes checked out fine. He told me that I needed an MRI/MRA. I had an aneurysm on the Anterior Communicating Artery. I was admitted to the hospital from Dr. R’s office. My aneurysm was coiled the next day. Six months later on my follow up angiogram, I was told that my aneurysm was 30% compressed and that I needed a craniotomy. I went into the OR to have my aneurysm clipped and Dr. R. found a second aneurysm which he also clipped. This one was a Posterior Communicating Artery aneurysm. Well the story doesn’t end there. Four weeks later I was readmitted with a post operative bleed, papiledema but thank God I did not need a shunt. I was three years out in May.

What were your other options? I will find out on monday what my options are. As of right now all I know is that I have a 3 mm aneurysm in the anterior communicating artery. I have the same exact fear as you. I love being me and I want to continue being me. Nobody will fully understand how you feel except for people who have a brain aneurysm. I will pray for you. There are many people who have come out of it completely normal. I read the book “The Secret” and it says if you imagine yourself as you want to be, you will summon it to be that way. So you need to see a vivid picture in your mind of what you want your future to be like. It can only help you. I made up a story for myself. I can’t believe this is happening to me, I am never sick, I thought I was the healthiest girl in the world. I do believe everything happens for a reason. So maybe the reason for this nightmare is because I’m going to meet my future husband at the hospital and he is an extremely handsome, wealthy doctor lol.

Hi Nancy, I was given the option of watching it but with me only being 33 they said it is probably a good idea I take care of it!! Plus it is wearing me down!! I would rather have surgery now when it is a calm controlled environment rather than an emergency situation where I won’t even be able to pick my docs or hospitals or who knows if I will even make it to a hospital in time!! Please keep me posted as to what your docs tell you!! All I know is I am determined to heal and get this behind me no matter how hard it is!! My little girl needs me!!! Thanks for your support and I am here to support you too!!