Brain Aneurysm: I Thought I Had Meningitis

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Cindy

I Thought I Had Meningitis

12 February 2001

Hi, my name is Cindy. I'm a 39 yr. old geriatric nurse. My story starts Jan,3 2001. I woke up early as usual. My head felt like it was exploding. I thought I had meningitis because I have been having a lot of invasive dental work. So I went to the E.R. where a CAT scan was done. They noted some white spots ( thought it was MS ). There I was transported to a larger hospital where a MRI was done. That is when they hit me with the bomb. I had a cerebral aneurysm. They kept saying you'll need a operation and soon. Of course I was scared to death. Nobody in my family had this problem. My husband was in a panic. We talked and I happened to know the nurse on duty ( I worked with her many times ). She advised me to go to Ohio State University for better and quality care. My husband being distraught and not knowing what to do. Eight hours later I was at the University.

They did another CAT scan and wanted a spinal tap to make sure it wasn't bleeding. Spinal tap showed no blood. I thought, Boy, this is good. I had many Doctors come in doing Neuro checks, telling me very little. Always talking about surgery, that they didn't want to do the coil. So, after three days, a angiogram, and another spinal tap I was released home with Depakote and Percocet. The Neurologist said I want to see you in my office in three to four weeks. ( I couldn't get a appointment until Feb. 22, ten more days to wait. )

The last five weeks has been a nightmare, with severe headaches and constant worry. I go to my family doctor, whose an angel. Put me on Demerol for the severe headaches. He says they're probably migraine. He called my Neurologist about migraine medicine and the Neurologist said no way should I take this medicine that it could cause it to possible burst.

The last five days I have few headaches. But today it's a little stronger, hoping I don't have to take Demerol. I think this worry has a lot to do with it. I wanted to know if anybody else had similar experience? I know this is early in my treatment, but luckily I found this wonderful site. I've read so many narratives and it has gotten me through some of my roughest days. I felt so alone and now I know I have a wonderful family.

I'll update after my visit with my Neurologist, thinking of you all.

Update 25 Feb 2001

Went to my appointment, this is what I found out. I have a fusiform aneurysm. They don't think that is what is causing my headaches. The Neurologist thinks that my spinal fluid is leaking out and causing the severe headaches. So I'm waiting now for him to call, he says that I should get a plug where they did the two spinals and maybe it will help my headaches. ( I hope this works, the thought of being head pain free tickles me.) Well anyway, He doubts the aneurysm is the culprit. He says if this procedure doesn't work, we'll have to do another MRA to make sure the aneurysm is not enlarging. He said that they don't want to operate unless it's grows.

Just got his call, wants me at OSU at 11 today (February 23, 2001). Thanks, for your ears and pray for me. God bless you all. I'll write back in a couple days with update.

Update 27 Feb 2001

I've gotten bad news today. They finally tell me, my fusiform aneurysm is inoperable. That they would only operate as the last measure. The operation would disable me or probably kill me. They are talking like putting me on total disability. (Which kills me, I love nursing, it's in my blood. I'll miss it.) :( But the good thing is it's at the main artery that supplies the brain, They don't usually grow fast. He says. I'm not to have stress. My blood pressure has to get better. I live on a farm, so I've decided to get lots and lots of animals for me to care for. This will help me for I can still nurse. :)

Thanks for all your prayers and letters.

Update 22 Mar 2001

Hi, I'm back. My husband and I decided to get a second opinion. So, we went to Cleveland Clinic to Dr. Gretter. At first, OSU only gave us two pictures of the angiogram and Dr. Gretter thought after viewing them that there was no problem, but he said he needed the rest of them to be able to make sure. Mind you, we are three hours from Cleveland, so we had to drive from there to Columbus, get the rest of the angiograms and fed-ex them to him. Anyway,I thought the way he talked that I really didn't have a problem, so I decided that I would do what I normally would do and go on with my life. I even thought about going back to work. He never called with a update so I thought I was in the clear.

After two weeks, he calls my husband and apologizes for the wait. Says that he didn't like what he saw on the rest of the angiograms and decided to get opinions from the Neurologist team. They have decided that I need another angiogram with a CAT. So thats to be done on April 10th in Cleveland. They say that they saw something that they didn't like. That its not really resembling a fusiform but more of a bulge. So this test will let them know for sure. I thought I would give a update to let you know and after the test I will let everyone know whats going on.

Update 24 Apr 2001

I've had my MRA and my visit with Dr. Gretter. He tells me he really thinks that I was wired this way. He doesn't feel like this would ever cause a problem. They'll keep an eye on it. He couldn't explain the explosive headache or the terrible headaches that continued for 4 months. He did say it might have something to do with the spinal taps. He put me on Doxepin at first, which caused severe nightmares. ( I had little aliens chasing me and would wake up screaming.) So he has changed the medicine to Nortriptyline 10 mg at night. So far, I haven't had any aliens in my sleep. :)

I am very thankful, for my headaches are very slight. (I was taking Oxycontins and Percocets daily.) Now a regular Tylenol is all I've had to take. He also says I could do whatever I felt like doing, like before. So, I'm thinking about going back to work in June. I still have my animals and they're still very spoiled.

I would like to thank each and everyone for their thoughts and prayers and like to thank Dr. Gretter for giving me my life back.

Update 7 Jun 2001

My Neurologist put me on 10mg Nortriptyline and this worked wonderful for 2 weeks. Then my headaches started just like before, so I called him. I thought, Please don't tease me. Haven't had a headache. Felt wonderful. I have even started working. He said," We'll double up your medicine ." So I started 25 mg of Nortriptyline. That helped again for about 2 weeks. Then my headaches started once again. They were bad I had to call my family doctor to get Percocets once again. Now he has put me 50 mg of Nortriptyline every night. ( It puts me asleep in less than 30 minutes and I'm out for the night. Just glad I haven't any babies to take care of.)

Anyway, what I'm asking is, has anyone in the family took Nortriptyline for your headaches and if so did it work. My Neurologist wants to see me June 28. I don't know why. I thought I was O.K. Just started to live again and these headaches still getting me down. Thanks for any input.

Update 30 Oct 2001

I thought I'd update on how I was doing. First of all, I have started the process of disability. My family doctor doesn't think I should go back to work. Afraid the stress of nursing may raise my blood pressure, which has been under control for 2 months. I've recently had a MRA which shows that the diameter hasn't grown. (Still 4 mm) But the length is now 1 cm. He doesn't know if was read different by a different Radiologist. Have another MRA in Dec. or Jan. If it doesn't grow then probably have one done every year. I continue to suffer severe headaches everyday. But the Oxycontins really do help take the edge off. I've started on Effexor to see if that will take my headaches away, I feel better emotionally, but I still have my daily headaches. I noticed if I don't take my pain medicine when it starts I really pay the price. (Throbbing killer, got to go to emergency room pain.)

I now have 18 cows 11 females, hoping to have some babies in Feb. or March. We're pretty sure 5 or 6 are pregnant.

I was wondering has anyone ever have a low pressure headache related to csp leak. I had one for six weeks in Jan. and they say my brain took so much pain for so long and thats the reason I have a headache now. And if you did, how long did it take for your brain to heal. I had a blood patch done at the end of Feb. I would like to thank the family for any output, you're all angels!

Update: 7 Apr 2002

Its been awhile sense I updated. A lot of stuff has been happening. I just got out of the hospital for a possible leak of my aneurysm. They are keeping my BP under 100/70. Which is making me feel exhausted. They are talking about sending me to Arizona to a Neurosurgeon, Dr. Spetzer, for a brain bypass. Has anyone heard of him and if so, can you tell me anything about him.

I continue to have severe headaches and nausea. I lost a little bit of weight this past 2 weeks. I'm a little scared and my family are so worried. Any help would be appreciated.

Update: 20 May 2002

Hello Everyone, I got a call from my neurosurgeon (regarding Dr. Spetzler) looking at my angio. He has informed me that he can not do the surgery. Something like, I'd be better off with debilitating headaches then undergo any kind of surgery. I will be going to my neurosurgeon on June 4 to go over what he stated.

I really don't know how to feel. I'm glad in a way, but also saddened to think, I'll have to live with these terrible headaches. I'm going to a different neurologist may 28, a follow-up appointment from being in ICU with that possible bleed. I hope we can do something that will help my pain. It's a constant everyday struggle. But, I am trying to go on and to live as normal of a life I can.

I have so many restrictions. I've got to try to keep my BP under 100/60, I can only drive to town and back and only if I have a cell phone at my side. I have been denied SSDI, something like, I can sit for 6 hours. ??? Well, anyway I appealled.

I'm on anti-seizure meds and anti-depressants and oxycontin and hypertention meds and the only thing that continues to work is the oxtcontin. I feel like everything that I use to love was grabbed away from me. But, I'm thankful to be here and thankful for this site. Oh, By the way I have a little boy and girl calf. Both born in early march.

Update: 11 December 2004

Gosh, It's been So long since I've updated! There has been so much going on the first thing are my headaches continue and will be 4 years this January I now have been on morphine and methadone and topamax to be able to smile every once in awhile. It's been a struggle. I have also struggled with SSDI for 3 years and had my ALJ hearing in February 2004 and finally in August they tell me I'm denied. That month I found out that my inoperable aneurysm I've been living with is growing. It had growed 2mm. So the worse news, that could happened — did.

So, I had a mini nervous breakdown. I appealled that sorry judges opinion and went to my Neurosurgeon to see what we could do. He sent me to Cincinnatti, Ohio and I met a neurosurgeon and found out I could not have a operation, but I went to another Neuro who thinks he may be able to place Neuroforms in my fusiform aneurysm. Which in turn, there is a 50% chance it could take my pain away. Oh BTW — we found out, the pain is from the aneurysm! It just took a really good doc to figure it out. He actually showed me and my husband how and why on the angiogram. If I had this doc in the beginnig of my SSDI I would have not been denied. Oh well.

I will be having my surgery January 4, 2005 at University of Cincinnatti. A Dr, Ringer will be doing the the Neuroform if everything goes well. I'm very nervous, but positive. He gives me 50% chance to get my life back 10-% chance of dying with a bleed. I have 50% that the surgery will not help my headaches but at least I will be happy that it will be fixed and the worry of it being a time bomb and ready to explode at any given moment won't be there. There is also a chance he gets in there and he may not be able to get to it. It's deep within the brain. He says there is some bends he'll have to overcome.. But if everthing goes good like planned with the stent he may even place some coils. So if the family will send some prayers for me that day, I would appreciate. There is nothing more powerful! Thank you guys and hugs to you all, Cindy

Update: 9 January 2005

First off, I'd like to thank everyone for all the positive vibes and prayers, they are So powerful !! They were able to put the stent in but there was still 3 mm not stented, hoping that doesn't cause any problems. He feels it shouldn't. So I feel very lucky so far.

The surgery was a nightmare, and contiues to be a nightmare. It lasted about 5 -6 hours and I was awake the whole time. Unable to put me asleep due to location of aneurysm, which it turned out first hand why, I had a stroke. It was a horrible. They started asking me my name and I heard myself slurr it. My left arm felt like it had a ton of bricks on it and I couldn't feel my left leg. The NS team went into action and used TPA (I believe) to reverse the blood clot that had formed. This was very scary for me, my mind felt very clear. He had not put the stent in yet. After I seltered that was next.

It went really good until He got the stent up to my aneurysm and started to push into. I felt incredible pain, I started to tell them how bad it hurts and moaning and it seemed like no one was listening at the time. So the only thing I could do was lay there tied down to this operating bed with tears streaming down my face for minutes which seemed like hours.

I understand why I was awake if I wasn't they were not able to tell I had the stroke and I'd be not very good. He told me the reason I hurt so bad when he placed the stent (and for 4 years before) because was that a nerve ran along side my artery. (So please don't let NO ONE tell you Annies don't hurt !! They do and bad.)

I'm writing this hoping it helps me, I've been having problems since I've come home with sleeping and dreams (I think from the surgery) and hoping writing this and seeing it will help my fears. My poor husband has been waking me up every hour sometimes cause I'm crying.

I'm writing a book ! !

I'm still having alot of pain at the same location as before. That may get better or it may not, There is a 50% either way and I'm hoping for the better. My NS did save my life and I don't have to wake up and worry if today is today it is gonna burst. Oh and BTW it had grown double by last check since august. Yes, I did say I was lucky. Thank you guys for the prayers and positive energy. Hugs, Cindy

Update: 11 February 2005

It's been about 5 weeks since surgery and the pain hasn't decreased any. But my dreams have! It's like every thing else about my brain, it forgot it ! Like everthing else in my life. Which is fine with me. I never thought I'd be happy about forgetting things, but this, Oh , Yeah !

I had my post op appointment and my NS is not to happy about my headaches. He says if they don't get better in the next 2 months I'll have to have a angiogram to check things out. He says there isn't a whole bunch he could do but he would like to know what he is up against. He also told me, I was very lucky to be alive and that he almost lost me. ( Yeah, I so vividly remember.) So, 2 more months of restrictions. If my head doesn't get better a angiogram to see what's wrong.

I don't need this !!! I've went to my pain doc and we are trying everything to get my headaches down. So far - corticosteroids injections and maybe a Medrol Pak (after my sinunitis goes away) He says I might need a Demerol shot to rewire my brain. When I say my headaches get better, I mean back to what they were before surgery (which was bad). But now they have been worse since.

Has anyone had experience with stents and coils (I don't know how many if any he put in - coils) He never mentions them, only before surgery. Then had SO many problems during surgery??? I just want my headaches to get better, I don't even want to think the other way.

Hugs, Cindy

Update: 16 June 2006

Hi Everyone, Gosh, It has been so long since I updated. Not a lot have has happened except I finally won my SSDI. I had to go to the federal courts to win. And they seemed pretty upset that the ALJ had denied my case. But I finally won on severe pain (head pain ) related to inoperable brain aneurysm...On March 29 , 2006.

I still have this horrible head pain everyday...It has continued now for over 5 years. My Neurosurgeon believes that my aneurysm is pulsating with every heartbeat and hitting the 5th cranial nerve or the trigeminal nerve. And might as well done some damage after all these years. The pain is constant. relentless. Thank heaven for great pain Doctors. I do have a fantastic one. Otherwise, It just wouldn't be worth living.

My surgery, unfortunately, was a failure. It didn't work and blood is reaching my aneurysm with every heartbeat. So I can't do a whole lot or it increases my head pain or my blood pressure.

But I 'm still here and have a very loving and supporting family. And I take one day at a time. Ya know things could have been worse. I've had some people wanting a update and so sorry it took me so long.

Hugs guys...Cindy

Update 9 November 2008

There isn't alot to update, I am still having horrible head pain daily..If I forget a pain pill,,I suffer even more,,My memory is even more worse than ever..I still go every year to have my aneurysm checked,,Now they do not even check for growth..they just check to see if the stent they placed is patent..Which it is,,of course...I think I would know if it wasn't.

Ya know, it will be 8 years in Jan, I didn't think someone could have such a long headache...But I feel I have done everything in my knowledge to fix this, it just doesn't seem to be what is for me..I will be loosing my very good pain doc in Jan,,That depresses me very much..He says he has a good replacement,,I hope he does,,Because he has truly helped me so very much..Without him, I'll feel lost..Thanks all again , Hugs, Cindy

Discussion, comments, or questions: Cindy Studebaker

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