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December 4, 2002
Hi, my name is Nicole and I am 25 years old. I am from Tom's River, New Jersey and just had brain surgery a week ago. My story is...
I was sitting at home after work talking to my husband and father in-law when all of a sudden out of the clear blue I got this headache that felt like someone was banging my head against a brick wall, it lasted about 5 minutes and slightly went away. I felt very nauseous and all I wanted to do was go to sleep. I went upstairs and went into the bathroom because I felt like I was going to vomit, I did non stop and the next thing I knew I was in bed. I lost consciousness and I did not remember anything. My husband found me passed out on the bathroom floor and had to put me in the shower and then to bed because I did not want to go to the hospital, I never was in the hospital and was not going. I actually thought I had a really bad migraine but little did I know my AVM had just burst.
A few days went on until I figured I'll go see my family Dr. maybe I just have a flu since all I did was sleep and I had a very bad stiff neck. I went to my Dr. who diagnosed me with viral meningitis. I thought ok great what the hell is this. He told me if my symptoms got any worse to go tho the ER, yeah ok. I went home and back to bed until 2 days later I was getting worse still sleeping. I had not eaten in 5 days still vomiting and my husband made me go to the ER. We got there and they did a head CT scan right away and the Dr. came and explained to us that there was bleeding in the right frontal lobe of my brain. I thought to myself "this cannot be happening, I have never been really sick, he must have the wrong person, no way." Well, I was wrong...he had the right person.
The local hospital then transported me by ambulance to another hospital about 20 minutes away that dealt more with this. I saw a neurosurgeon there who right away told me he was going to send me to Columbia Presbyterian Hospital in New York. I thought to myself "this is not good..." I was then transported to New York which is about an hour and a half away. I was so scared because I still really was not understanding what was happening to me. They bring me to Neuro ICU and I have all these doctors around me asking me questions people sticking things in my arms, my hands...what a mess. My parents flew in from Florida that's when I knew something was bad, they came right away.
I had CT scans, MRI's and an angiogram which showed I was born with this AVM. I never even heard of this but when they tell you bleeding in your brain of course you only think the worst. All the doctors kept telling me was that where mine was is the best place to have it and it was the size of a ping-pong ball and that I was going to have to have brain surgery. I have never even had stitches before now I have to have brain surgery.
I was in the hospital for a few days they could not do the surgery right away because of the swelling and they had to wait for the excess blood to dissolve into my body so now I have to wait and god knows how long this will be. Well, in the mist of all this I was in and out of the hospital about 12 times. I have a bad reaction to Dilantin then Tegretol then I had to have a shunt put in my spinal sack because they found I had to 2 blind spots in my eyes and I was diagnosed with " BENIGN INTERCRANIAL HYPERTENSION". I have too much spinal fluid and it build up behind my eye. I also have a papillary edema so now I have to see an eye doctor a neuro-ophthalmologist. Well the shunt was doing it's job but there were some days I couldn't even walk, it was hurting my legs and hips. My neurosurgeon decides that when I have the craniotomy done he will just take the shunt out while I'm under.
Finally, on November 21 I had my embolization done and it went well. On November 22 I had the craniotomy which also went well. I went home 3 days later and I felt great I just had a black eye and a little bit of a shaved head but I felt so good... I was home a day and had to go back into the hospital because where the incision is on my back where they took the shunt out was leaking spinal fluid. They had to put a spinal drain in and the doctor was hoping it was just excess from the shunt removal. I was on my back for 4 days and I was stuck in the hospital for Thanksgiving. I was not a happy camper. Anyway they pulled the drain out and just had to cross our fingers it would not leak. Well it didn't and they let me go home. So far so good.
I have to go back to the doctor in 2 days to get the stitches out of my back and I really hope it does not leak because if it does he wants to then put a shunt in my brain which I really do not want to have to have my head cut open again. So at this point I just have to hope it does not leak.
As far as having brain surgery I am amazed how fast I recovered... I never felt better just a little jaw pain which will go away and I have to work on my short term memory but nothing other than that. It is very scary when you are told you need brain surgery but it really is not all that bad. You just have to think positive...and you'll be fine.
I now realize I am a very lucky person and I am very thankful I am alive. According to the doctors I really am lucky because I could have died. I have a wonderful husband Danny who has been so supportive through all of this and by my side every time I was stuck in the hospital. My family has also been supportive and always there to cheer me up. My sister and brother-in-law have been great through it all, if I needed them, they were there. It's a tough thing for someone and their family to go through but just keep your spirits up and only think of the best.
Update: 8 Dec 2002
Well, I went back to my Dr. and he took the stitches out of my back and he is so happy no more leaking of spinal fluid. I have to see him in 1 year for a follow up, I have to stay on the keppra for a year to prevent seizures and in 3 years have another angiogram just to make sure everything is still ok. So, my visit went well.
Update: 17 Jan 2003
It has been almost 2 months since my craniotomy and I am coming along well just the usual feeling tired. I had a visit to my eye dr. at Columbia Presbyterian Hospital in New York (where all my doctors are and where I had my surgery) and since my AVM was removed, my papilledema is gone and I no longer have a pressure build up behind my eyes and the blind spots are gone so great news.
I now have found out I have kidney stones and in October I had 7 so since then I have passed 5 because I only have 2 left to pass. And I also come to find out I have a cyst on my liver which just has to be watched. So, pretty much good news all around and every day I get better.
Update: 20 Feb 2003
Hello everyone, tomorrow will be 3 months since my embolization and on the 22nd 3 months since my craniotomy. I am doing well, still just very fatigued, which I hope will soon pass. I am in Florida at the time visiting my mom and dad for 3 weeks, I really needed to get away and come to the warm weather and I do feel a lot better rather than being home in the cold and the 2 feet on snow. I have 2 weeks left and I am enjoying it, I can actually spend time with my parents rather than spending time with them in the hospital.
I have to have a re-check with my neurosurgeon at Columbia Presbyterian Medical Center, Dr.Connolly when I return home. I also will return to work in April which I am a little scared about since I am so fatigued and I hope I can do my job the same way I did before I got sick, I work for a Doctor as a receptionist which sometimes can be a stressful job.
I am also having a lot of problems with my health insurance company and the hospitals billing department with who's not paying what until they get medical records to see if this was a pre-existing condition. I fight with them everyday and it makes me crazy so I have decided I do not get paid to do either of their jobs. I am no longer going to stress myself out over this, let them deal with it after all that's why they get paid. Hope everyone else is doing well.
Update: 24 Mar 2003
Yesterday was 4 months since my craniotomy. I feel like it has been longer than that. For the past 2 weeks I have been experiencing slight numbness and tiredness in my legs mostly my left leg. I called my neurosurgeon because I got a little nervous. I didn't know if it was some sort of seizure activity since I never had a seizure. Since my AVM was on the right side of my brain I know it controls my left side and I got a little scared. But he seems to think it has a lot to do with the nerves from my spine from all the spinal taps and the 2 surgeries on my spine having the lp shunt in and then out.
So tomorrow I am going for an MRI of my lower spine. Sometimes it bothers me and other times it's fine. I am able to walk on it and everything but it's not normal feeling. My doctor also checked to make sure it was not swollen or red or hot because then he would have been concerned for a blood clot but he said it was normal looking.
I will keep you all updated when I get my results.....wish me luck......
Update: 23 Apr 2003
Tomorrow 4-22-02, is 5 months since my AVM surgery. I went back to work on 4-14-02, I am starting part-time and I am so glad to back, I feel better mentally and physically. I have not had any more problems with my leg numbness, I had the MRI it showed some possible nerve damage from the surgery on my spine with the shunt and from all the spinal taps.
I have been suffering from bad sinus headaches, I get bad sinuses every spring but I have noticed this spring it is worse and my doctor told me it's most likely because of the surgery but I just take some sudafed sinus medicine and it helps. I just wanted to update and say Hello to everyone, I hope everyone is doing well.
Update: 13 May 2003
Hi everyone, hope all is well. I am just writing to give an update. I went to see my neuro-ophthalmologist on May 6,2003 and everything is good. I continue to have no cerebral spinal fluid build up/pressure behind my eyes since the AVM was removed. I just explained to her that this spring I have been getting bad sinus headaches and also when it is damp or raining out I get a headache and my right eye (the one that I had a lot of the problems with) hurts. But she told me it is from my allergies. She gave me 2 kinds of eye drops to moisten my eyes 4 times a day and she also said it's all from sinuses. I do have to get night driving glasses because I was experiencing some blurriness at night from street lights or other cars headlights. So, my visit was good just minor things that can easily be corrected.
I have been back to work for over a month now and this week is my first full time week. I feel great being back. I actually feel back to my normal self again. My husband and I just bought a house on the water and we will be moving the beginning of August. So far everything is going great for me.
The next time I have to see my eye doctor is in November when I see my neurosurgeon for my one year check up and after that she said she should not have to see me on the 3-6 month basis anymore. So it's looking good from here. I hope all is well! God Bless!!!!!
Update: 17 Jun 2003
I recently got my records from my hospital stay and as I was reading through them I had found my operative report for my embolization and during the procedure they had to stop and give me Verapamil because my carotid artery was having spasms. I was upset to read about it because I was never told about it. And also they wanted to do an echo to see if I had a heart mummer but one was never done.
So I brought it to my family doctors attention and he thinks maybe I should get this heart mummer thing checked out. Here I'm thinking everything is getting better and I find this out. I hope it's nothing but just thought I'd update. By the way the 22nd of this month is 7 months since my surgery...way too go!
Update: 05 Aug 2003
Well my husband and I have finally moved and settled into our new home. It is great and relaxing, our back yard is right on the water so it's nice. I have gotten a new neurologist rather than the one in Manhattan just in case something happens I have one close to me. I saw him on June 26th and he was very nice. My visit went well, he told me neurologically I was OK. I have a right hand tremor which I already knew and my left foot turn in a little and has a very slight drag to it that is unnoticeable but of course he can see it because he is a neurologist and he knows what to look for. And as for my memory I sometimes have short term lose but only as far as asking something 2 or 3 times nothing major.
I do have a new niece, Olivia Grace who was born on June 6th and she is so beautiful. So now I am an aunt to 3...I have my niece Abigail who is 2 who is also Olivia's new sister. While I was sick and recovering she kept me going, Abby was my medicine. I spent a lot of time at my sisters while I was recovering instead of sitting home and she just made me laugh and smile. Abby is my little angel:)
But other than that I am doing well, still working. Now I have a half hour commute to work but it's not bad at all just on the parkway and I'm there. Besides I only work 4 days a week so, I can deal with it. I hope all is well and healthy...
Update: 18 Aug 2003
Well I spent the afternoon yesterday in the emergency room. I woke up feeling fine, had my coffee, checked my e-mail and kept getting a pain in my left kidney and a little in my pelvic area. I lay down and it started to come on worse and I started to vomit a little. I kept trying to urinate and nothing would come out. I kept tossing and turning trying to get somewhat comfortable but nothing would help, I finally I gave in and figured this pain is not going to go away. I called my sister and told her to bring me to the hospital.
Now for me to complain about pain and ask to go to the hospital, I'm in severe pain. I didn't even complain when my avm ruptured. now I knew I still had stones left from the other seven I had passed and I didn't even know it. I have experienced the true passing of one but I just knew that's what it was. We got to the hospital and I finally could give them a urine sample and it felt good to finally be able to urinate, and by this time the pain was only in my abdomen and pelvic area, my kidney pain was gone. they did an x-ray and found that I still have two in my bladder but for sure I did pass one.
I also have a bladder infection so I was sent home on antibiotics and they gave me pain pills just in case I get that pain. But the Dr said there are no stones in my kidneys and the pain I felt was one traveling from the kidney to the bladder. My back is a little sore today but I feel fine other than that. The pain was 10 times worse then the AVM rupture and that was bad. hope all is doing well...God bless!!
Update: 28 Sep 2003
I made it 1 year on September 23rd since my AVM ruptured. It has come to that time now when I am going to be weened off the Keppra and of course nothing comes easy. I have to have an EEG and another after about a month being weened down just to make sure there is no activity. I am so excited that I am going to come off it but in another sense a bit scared that when I do come off I am afraid I will have a seizure. I talked to my neurosurgeon in New York on Monday and he told me he is going to call my neurologist to discuss the medicine. He also told me not to be scarred coming off it because if I was going to have a seizure it would have happened already. I have never had one not even while I waited the 2 months to have my surgery.
So, I have an appointment October 1st with my neuro and I have my 1 year check-up with my neurosurgeon 11-10-03 and also with my neur-opthamologist 11-4-03. It's exciting that it is almost 1 year since my surgery. Time flies... and more good news, after November when I am 1 year post-op and done with the med. my husband and I are thinking of having a baby within the year. We don't want to wait much longer. I will keep all posted on my visit Wednesday and wish you all well and good health!
Update: 03 Oct 2003
Hi everyone....here is an update on my doctors visit on 10/1/03. I went to the neurologist to go over my Keppra so I can start to come off of it. I have to have an EEG first so I am scheduled for that on 10/7/03. Then if all is normal with that we will start to cut it down and I will be done by the end of December. So I'm sure, and so is the doctor, that my EEG will be fine but I do have to wait until January to get pregnant but that's ok. I will update you more when I get my results back...
Update: 14 Oct 2003
I went for my EEG on 10/8/03 to see if I have any seizure activity before I can come off the keppra. Good news, my EEG showed no seizure activity at all!!! I was so relieved. So as of 10/10, I have started to ween down, it will take me 3 months and I will be done on 1/10/04. I was told to take it easy, rest, try not to get stressed and eat a well balanced meal so I will do as told.
More good news I got today, my brother and his wife are expecting their second child. He or she will be born on may 14th, maybe my birthday, the 17th and if it is a girl they will give her my name a her middle name, which I thought was great... All these babies, how exciting. our family gets bigger by the year:) and I already have a very big family. So,if all goes well, my husband and I will try for a baby after I am done with my medication.
Hope all is well...God bless you all, you've all been so supportive!!
Update: 12 Nov 2003
Hi everyone, hope all is doing well... I went for my one year checkup with my neuro-opthalmologist last week and she say's everything is great with my eyes so I will see her back in May then after that once every year...
I also went for my one year visit with my nerosurgeon today, all went well with that also. I spoke to him about getting pregnant after I am done with my Keppra on January 10th and he told me to wait a week after I am finished to try to get pregnant. So since I told him that instead of waiting 2 years to have my follow up angiogram, he suggests I do it before I get pregnant so I am scheduled for January 5th, it's a same day surgery. Other than that, all else is well, I am still feeling better than ever...take care
Update: 16 Nov 2003
I had an EEG last month before I could be weaned off my Keppra and on the result it showed no seizures (which I have never had) but it did show some right frontal slowing of the brain (where the AVM was and removed). Has anyone ever heard of this or had this?
I saw my neurosurgeon this past week for my one year checkup and I brought the result for him and he did not seem concerned at all. He thinks it may be scar tissue. Any info would be greatly appreciated.
Update: 06 Jan 2004
First I want to wish eveye a healthy, happy new year!!! I only have 5 days left on the Keppra and I've been doing great, no seizures, thank God. I feel like my old self again and I am not as tired and run down feeling. I have also lost 15.5 pounds coming off of it which my neuro told me I would lose a lot of water weight.
I have an appt.with my neuro on Jan14th just for a follow up then on Feb 23rd I go for my angiogram so I get the clean bill of health and Danny and I can try to start a family. As of May we will be having a new addition to our family "Dylan" my brother and is wife are expecting their second little boy so i'm pretty excited!!!!! Now it's my turn. :)
Hope all is well and I will again update after my visit with my neurologist..take care and be well in 2004.
Update: 26 Feb 2004
Well, I just went through this big headache. OK, I have an interventionaL neurosurgeon Dr. Sean Lavine at Columbia who I had an angio scheduled with for Feb. 23rd, I received a phone call from his secretary saying he does not participate in my new insurance so she found another Dr. who does. I called his office to schedule my angio and his office did, so I thought. I was all ready to go and my husband and I went up there monday and I had something called a catscan angio.
All's they did was give me an IV for the dye and put me through a cat scan machine and that was it. So I knew it was too good to be true, I called my neuro's nurse and told her I knew something was not right well come to find out his office scheduled me for the wrong type of angio meanwhile I told them I needed a cerebral angiogram so now I have to go back for the right one on march 10th. They are looking for vascular dysplasia, they say it is when they cut the avm out there are the vessels it branches off of and they should close off by themselves but right after having my craniotomy they did an angio and saw that some of them were not closed off so they have to check it.
I will update after my angio to let you know how it all goes....take care.
Update: 15 Mar 2004
Hi, hope everyone is doing well. I went for my follow up angio on march 10th and everything is good, there is no residue of the avm and that dysplastic vessel healed on it's own so basically, my brain is now normal. :) I was so nervous about nothing.
I also went lst week to the obgyn and spoke to him about getting pregnant so he started me on pre-natal vitamins called prima-care, they have a lot of fatty acids and folic acid in them. He put me on them certain ones for that reason, he say's fatty acid and folic acid are good for the neuro system. I will have to atl east consult with a high risk obgyn but he doesn't seem to feel that I will have to continue on with one for the whole pregnancy. So, we are going to start trying to have a family.
I also have a visit with my neurologist march 17th, I had an eeg done about a week ago and it is to go over the results of that and if that's good then I am done with seeing him also. I haven't had a seizure so I know it will be fine. All this great news is so exciting. But my famiy is dealing with my grandfather being in the hospital he has to have a pacemaker put in and also he had a stent put in, he has a bad heart as it has he already had a heart attack 15years ago and open heart surgery but I know he will be ok. I will update afer my visit with my neuro.
Be well
Update: 20 Mar 2004
Hi, well I have really good news. I went for my EEG last Wednesday and everything is normal so my neurologist dismissed me from seeing him so I am quite happy. I am all done with brain doctors. :) Talk to you all soon and be healthy and safe...
Update: 23 May 2004
I am an aunt once again, my sister-in-law gave birth to a baby boy Dylan on May 14th, he was 8lbs. 2ounces, 21 inches long...... I am doing great , going to my neuro-opthalmologist June 11th for my last checkup. Hope all is well.....
Update: 17 June 2004
Hope all is well and healthy. I have exciting news, I am finally pregnant, 5 weeks. I am going to my OBGYN July 6th for my first checkup I will be 8 weeks then and we will discuss if I have to see a high risk OBGYN which I probably will not since my last and final angio was normal. I will keep you all posted.
Update: 7 August 2004
I am now in my third month of pregnancy and I have had my good and bad days. I did however consult with a high risk OBGYN who already discharged me after one visit and say's I am a normal pregnancy.
I went for my first ultrasound and had some sort of 3-d ultrasound where they could somewhat look into the brain and everything is normal. I do not know the sex of the baby, I will find out when he or she arrives. I will although have to be induced due to the pushing, they want the babies head as low as possible so I do not have to push that much, I will be given an epidural (which I dread the thought of another needle in my spine) and the medicine to induce me so they say I should feel nothing...lucky for me......
I hope all is well, thought I'd share the happy news... I am so happy, I never stop smiling:)
Update: 29 November 2004
Hi, hope all is well, it has been a long time since I have updated. Busy with the pregnancy... I am doing well, I did find out we are having a girl, victoria rose, I am due Feb.14th.
I have run into some complications with the baby, I have been seeing a high risk doctor due to my avm resection and they have found that one of her kidneys has an obstruction and is not working properly so we have to consult with a pediatric urology surgeon at children's hospital of philadelphia so when she is born we can take care of the problem with surgery. I have 3-d ultrasounds done and they had to exam her brain due to my history even though they are not hereditary and how amazing it was to see that little brain... I also ran into my spina bifida test coming back positive which her spine is fine also that's actually how they found the kidney problem. as if I have not been through enough in life already. :)
Well, I hope you all are doing well and keeping healthy. I will try to keep in touch as much as I can. Take care and God bless.
Update: 8 March 2005
It has been a long time since I posted anything... I was so busy being pregnant, as you all know the baby had left kidney hydronephrosis, Victoria Rose Ricci was born on Feb.17th at 3:23pm 7lbs 7oz 19.5inches long and she is beautiful.
She does have the kidney problem and we have to take her to Children's Hospital of Philadelphia for further testing, we think she'll be ok, it's only moderate and she is doing just great.
I had a hard delivery 22 hours of labor and 5 hours of pushing but I did fine, no problems at all.
Just wanted to let all know she was born and I hope all is well. I will write again soon, take care and God bless.
Update: 1 August 2005
Hi all, hope everyon is doing well. I am so very sorry I have not updated in forever but as all of you who are parents do know, I am so busy with Victoria. She is now 5 months old and I have been busy taking her back and fourth to the doctor for her kidney problem. We have found out she has a duplex ureter on the left kidney with a ureterocele and will probably require surgery. she has been on a low dose of antibiotics since birth and so far she has been fine.
As for myself I am good, no neuro problems at all just my usual headaches from my allergies. My husband and I opened a pizzeria/resteraunt about 6 weeks ago and it is doing great. he is a chef so we figured why not go for it. So, we have also been busy with that.
My dad had bypass surgery 5 weeks ago. He had 5 bypasses, they live in florida so my sister and I had to leave our kids and go down there but he is doing fantastic.
Well I hope all is well I will update when I find out what is going on with Victoira at the end of August. take care and God bless.
Update: 10 December 2006
Hi all, it has been a very long time since I have touched base with all of you and I am so sorry but I have a 2 year old running around here and I just lost my grandfather due to cancer a month ago, he was sick for a year. I hope you are all doing well. I am doing good, no neuro problems. I hope everyone has a wonderful holiday season and a happy, healthy new year.
Update:04 October 2010
It has been 8 years since my AVM ruptured & my stroke, I am happy to say I am doing very well. My daughter is now 5 1/2 and in school keeping me busy. I am curious to know if this far down the road is it possible to develop absence seizures. I have been noticing periods of dazing out but I am aware happening, know what's happeneing, can snap out of it or be snapped out of it and when I come out of my few seconds of dazing I continue on knowing what was going on. I don't know what this could be, it's not like I am not aware of anything that is going on I just get into a daze and feel so relaxed.......Does anyone who does have absence seizures experience this, what I have read when you are having an episode you are unaware of it and when you do snap out of it you do not recall what happened during that time.
Thank you,
Nicole Ricci
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