LIFE IS GREAT!

Well, I am back to work part time now and I have to say that I feel better than I have in 5 years! Life is GREAT, I could never have imagined that I would feel this good. I didn't even remember what life was like without a headache. I have to say that the withdrawls from the pain meds were really tough, still fighting that a bit, but other than that I couldn't be better. I am so thankful to have found Dr. Rigamonti and for the care he gave me. Being in the hospital all that time and going through all 6 of those surgeries I almost gave up hope, but I am so glad that I didn't because the reward is definatly paying off. It was a tough year, I will say that but it taught me alot of things. It taught me who my true friends are, it taught me that my husband absolutly adores me and this has brought us even closer than we were already and it taught me that my Nanny is a truly remarkable person and that I wish I could be more like her. She stayed with me every single day I was in the hospital at Johns Hopkins. She NEVER left my side. Family isn't always there when you need them, but Nanny is!

Follow up with Dr. Rigamonti

I saw Dr. Rigamonti this morning for my follow up visit. I got all of my stiches and staples out from all 8 incision sights. He is really happy with how things are going. WHEW, I was nervous. He seems to thing the headaches are rebound headaches from stopping narcotics cold instead of weaning and also he had my shunt at the lowest setting as a precaution so that not much fluid would be draining down my lumbar region where I had the leak to make sure that I would not start leaking again, since he had such a hard time fixing the leak. So he adjusted my shunt up one setting and said he would adjust it up one more at the next visit. I am having some double vision and blurry vision and he seems to think that will subside as the shunt gets set at a higher setting.

Hospital Update

Day number 16 in the hospital this go round, that makes 26 days since June 3rd. Needless to say, I am ready to go home. I have had 5 surgeries so far and have one more on Monday, July 13th. This past surgery was by far the hardest one yet. The doctor told me it would probablly be a 45 minute surgery and it lasted over 4 hours. They were trying to fix the leak in my back. I had been leaking spinal fluid out of the incision in my back since June 25th. The leak was due to taking the LP shunt out of my back. With me leaking spinal fluid, I have a high chance of infection and getting menegitis. I ended up with an infection in my spinal fluid. Coming out of surgery I was in agonizing pain, started throwing up the next afternoon from high pressure, they took the lumbar drain out and I wasn't leaking anymore, so therefore my pressure built back up. I ask the doctor why I was in so much pain this time, he has opened up my back and operated on it 3 times prior and it was never this bad, I couldn't even move. He had to remove a piece of my bone (vertabrea) to get to the leak. I was finally able to get out of bed for the first time today so things are getting better.

UPDATE

Okay, yesterday before surgery Infectious Disease Dr.'s came in to see me, it seems that since I had the spinal fluid leak in my back for 5 days that they are worried that my spinal fluid has become infected, which causes menegitis. WOW, so Dr. Rigamonti went in and cleaned up my back, he tryed to stop the leak, my incision is twice as big now for some reason. He said that because of the risk of infection that he was going to wait to go in my head to fix the VP shunt. So this morning, they took me down and put a lumbar drain in, lets just say that was the most painful thing I have EVER been through because I was away completly and had no pain meds or anything until afterwards. So now I have a catheder sticking out of my back, they are draining fluid and testing it for infectI cryed like a baby, I have had my back cut open three times in three weeks, they have stiched on my back four times since I have been here Thursday. My back is raw and HURTS As soon as they are sure that the infection is gone or that there is no infection he will go in to repair the shunt in my head. That is all I know right now.

Back in the Hospital :(

Well I am back in the hospital once again. I came up on Wednesday to have an MRI and to see Dr. Rigamonti and to get my stiches out. I found out that I would be going back into surgery on Monday because the shunt was not working, he needs to reposition the cathedor of the shunt about 5mm (yeah I get my head sliced open again for 5mm) He decided to leave the stiches in back from where he had taken my LP shunt until Monday. We got home from Johns Hopkins around 10pm, I got out of the car and leaned over to get my purse and stuff out and I felt something wet on my back I felt my back and it was wet. I went inside and got Warren to look at it and I was leaking spinal fluid out of my incision. NOT GOOD!! If any bacteria gets in, I could end up with menigitis. Warren immediatly put sterile dressings on it and covered it really good and I called the on call doctor, he told me to go to my local ER. I decided not to do that, every time I go to the local ER they page my old Neurosurgeon that I cannot stand because we don't get along, and it probably wouldn't end up so good since Dr. Rigamonti just took out the shunt that he put in, so I tryed to lay as still as possible, hoping that the less movement would help. I went through 3 dressings that night and soaked them. I called the next morning and he said to come now and he was admiting me until my surgery so he could stop the leaking and get me on alot of antibiotics to make sure there is no infection. So that is the scoop. I have a KILLER headache for the first time since the VP shunt was put in. I am looking forward to Monday, so that the headache will go away!

Surgery Update!

Okay, day number 7 in the hospital, this definatly ended up being a longer stay than antisipated. Here is the deal, when I came in last Wednesday to have the shunt tied off and the ICP monitor put in, things ended up changing. He ended up tying off my shunt and monitoring my pressure from the shunt site. My pressure was high, in the 40's to 60's at some points (a normal persons pressure is about 12), so needless to say, my body could not handle it and I was in agony, I was throwing up ALOT, they gave me every anti nausea medicine known to man through my IV, but nothing stopped it, this continued for 5 days. Monday I was set to go back into surgery, the plan was to do a procedure called ETV (basically drilling a hole through your skull, brain and putting a small whole in the third ventricle of the brain) This would allow for the CSF fluid to have somewhere to go. After this procedure, I would be in the ICU for a day or two and be sent home in three days or so. They plan was to come back in two weeks for me to get the VP shunt (the shunt put in my brain) The risk of infection was to high to do both procedures on the same day, along with having just done the LP shunt surgery. I was sent to get a CT scan right before going to the operating room with little life saver sticky things all over my head, I guess kinda a road map for the doctor when he gets to drilling. He decided at the last minute after seeing my CT scan that doing the ETV procedure was to risky because my ventricles were calapsed from the high pressure, so he went ahead and put in the VP shunt. I have to say, I have been through 12 surgeries now and natural childbirth twice with no drugs or epidural and the pain I encountered last night was worse than all the others combined. I have no hair :( , I have 2 incision sites in my head, my neck hurts REALLY bad from where he fed the tubing down to my abdomin. He also decided to go in yesterday and completly remove my old shunt, so I also have my back sliced open and my abdomin. The Dr. came to see me this morning and told me that it was a really rough surgery, the surgery was supposed to take about an hour and it took almost 4 hours, he seems very confident that this will help me, he is doing everything he can to try to keep me from having to have the decompression surgery, he feels that the decompression surgery is a really risky sugery and doesn't always turn out the way it should. To say the least it has been a very painfull day. We are hoping that I will be able to come home Thursday or Friday, I don't know though, my blood pressure is really low and I am now running a fever, I just pray that it is not a shunt infection, that will be really really bad!! I have to say, that Dr. Rigamonti and his team are excellent. Everyone up here at Johns Hopkins has been so nice. I will keep you updated on when I come home. Thank everyone for the prayers!!

At the hospital

Sorry i have not updated sooner, it has been a really rough week. The surgery to tie off my shunt went well. They have been monitoring my intracranial pressure since the surgery and it is dfinatly high. I got out of surgery at 1 pm, but was not allowed to leave recovery until 11pm that night. My blood pressure was dangerously low, my oxygen level was low and i was throwing up about every 20 minutes or so. Yesterday was no better, i cannot stop throwing up, they say it is from the high pressure in my head, i have not eaten anything except 1 saltine since Tuesday. They have had a very difficult time controlling my pain, they finally hooked me up to a PCA pump. sorry to everyone who called, i was not up to talking to anyone, it is all i can do to get this pos done

Surgery Update

I saw Dr.Rigamonti today, here is the deal. I am experiencing new symptoms a lot of weakness in my left side as far as my arm and leg goes, my left eye is drooping really bad and doesn't seem to be reactive, I also have some numbness in my face, hands and feet. He had sent me to the local ER at St.Mary's Tuesday night because of all the new symptoms and my headache had gotten so bad, they did another MRI after 9 hours of waiting and it showed that my herniation was stil 21mm. The ER doctor didn't even know what Chiari was or what part of the body it dealt with, LOL. I spoke with Dr. Rigamonti the next morning and he scheduled me to come to see him first thing this morning (5/21/09) to get my shunt adjusted (my shunt is programable and resets around magnetic fields so I have to get it re programmed after every MRI). When I saw him this morning he immediatly sent me to have another MRI done. The MRI at Johns Hopkins is 3D and it would also show the CSF flow and if there was a blockage to my brain from the herniation. The results were that there was. I am being admitted June 3rd, he is going to do surgery and tie off my LP shunt and put an ICP monitor in my brain for 3 days (yep, I get to have another hole drilled in my head), that will tell if I am still dependent on my shunt or not. If my intracranial preasure is high, I will then have to have a VP shunt put in my brain to relieve the fluid. We will check after a month to see if the Chiari is improving or not, if not I will then have to have decompression surgery. We are taking it one step at a time right now, I will keep everyone updated.

John Hopkins Dr. Appt.

Sorry it took me so long to post. I have not been feeling very well. I have a cold and coughing when you have Chiari causing excruciating pain in your head, so needless to say it has been a rough weekend. Anyway, I saw Dr. Rigamonti at John Hopkins on Thursday and let me start by saying that I LOVE him. This has got to be he first Neurosurgeon that I have EVER seen that I actually like. He was very nice, he answered all of my questions without rushing me out the door, and he knew what he was talking about. Being a Surgeon, they normally try to rush you into surgery before exploring other options, but he is not like that at all. He is going to do another round of MRI's. A more in depth series of them that shows the CSF flow, and he also wants to get my whole cervical spine also. He also wants to do lumbar monitor. It is kinda like the ICP monitor they did were they drilled the whole in my head and monitored my intracranial pressure, but he is going to do it where my shunt is at. After we get the results from these two test we are going to sit down and discuss where to go from there. I am alot more hopeful after talking to Dr. Rigamonti, he was defiantly worth the trip up to Baltimore. He did tell me that Chiari 21mm herniation is a very servere hereniation and that decompression surgery may have to be an option, but he would do everything he could to help me. He is even trying to help me out with my insurance situation (my insurance won't cover for me to see him or go to Hopkins) he had someone from his office call me Friday morning to help me with that.
As soon as I find out when I will be admitted to the hospital for these test, I will update the blog again. Thanks again to everyone for their thoughts and prayers!!

Doctors Appointments!

Okay, so I have an appointment with a doctor up at John Hopkins next Thursday, April 23rd. He is supposed to be one of the best. He specializes in Chiari. I found out today that my insurance won't cover for me to go up and see him, but I am going anyway. I am supposed to go to Duke the week after that to see a different Neuro. I figure it is always good to get two different opinions. I will keep everyone updated.
I have not been feeling to well lately. My headaches are back full force and I have alot of muscle weaknes in my left leg. I feel like since he turned my shunt up that I am having high pressure headaches on top of the Chiari headaches. My neck is just flat out killing me. With all the medication I am on I am having a hard time just thinking straight. I hope to get some answers next week.

FRUSTRATED!!!!!!!

I decided to take it upon myself to go to St. Mary's and get my Radiology Report from my MRI. Let me just start by saying that was a BIG mistake. Not being a doctor, I don't know what I am looking at and it scared me to death. First I start off by finding out that I have a 2.1cm or 21mm herniation, okay for those of you that don't know much about Chiari, that is NOT GOOD!! Herniation's range from 6-26mm. Then after I get over that initial shock I go to read on and it says that "There is substantially diminished exta-axial fluid signal in the posterior fossa around the foramen magnum", again not good. Then there is a cavernous angioma in the superior right frontal lobe", no doctor, but can't be good, right? Then as if that is not bad enough "a small mucosal retention cyst in one of the right posterior ethmoid air cells". WOW!!!!!!!
So immedialty I freak out, as I think most of us would do and I called my dad and my Neurologist. I waited ALL DAY to here back from my Neurologist, by thank goodness he finnally called me and basically tells me not to worry about it????????? How can I not worry about it. I have excrutiating headaches, coordination problems, and now I have muscle weakness in my left leg, which at this point I am just dragging around. I just went to my doctor and got more pain meds to cover up all of my problems that I am having, that seems to be the only thing they want to do right now. Don't worry about it and take some pills :) I am in search of a Neurosurgeon at Duke up in Raleigh, NC if anyone knows of anyone. Thank everyone for there prayers!!

Hey everyone, this is my story, this is a brief outlook of the last eight years of my life with Intracranial Hypertension a/k/a Psuedotumor Cerebri a/k/a Benign Intracranial Hypertension (I have too much fluid/preasure on my brain). I am 30 years old, married to a WONDERFUL man and have two beautiful boys (4yrs and 1yr). I was diagnosed with IH eight years ago. I was working at a doctor’s office when my vision started getting really blurry and I started having blackouts. I had been dealing with bad headaches for a couple of years, I honestly blew it off to stress, working too much (I had two jobs) and to much partying. I made an appointment to see an eye doctor about my vision. I went to my appointment that day by myself thinking it was just my need to start wearing glasses again. The eye doctor did his exam and seemed really disturbed by what he found. He told me that my optic nerve was severally swollen and that I needed to see an Ophthalmologist immediately. When ask what could cause this he told me it was probably MS or a brain tumor. Terrified, I went home that day TERRIFIED! I had just started dating my boyfriend, the man I am married to now. I went into work the next day asking tons of questions to the doctor’s I worked for. I saw the Ophthalmologist that day and he sent me for a spinal tap and MRI the next day. My opening pressure was 39 and I was diagnosed with IH. I was put on diamox and given pain medicine for my head. I was at work two days later with an awful headache, I told one of the doctors and he gave me a shot of toradol, a couple of hours later I went to the restroom because I was not feeling well, I felt very dizzy and had an awful head pounding headache. I was found soon after that passed out in the bathroom. I was sent to the hospital and admitted. They did all the normal test which came back fine. They did a blood patch and I immediately started feeling better and was sent home. After a couple of months with no improvements I was sent to a Neurosurgeon to discuss my options. I was scheduled to have an LP shunt put in (the shunt will help regulate the fluid on my brain, it is placed in my lumbar region, in the spinal column). I had the surgery and was sent home the next day. I went home and my boyfriend (now husband) took care of me. Things got so bad that he ended up taking me to my parent’s house. I was unable to eat, drink or do anything. I would vomit every time I ate, sat up, drank, or stood up. I was readmitted to the hospital and over the course of a couple of days I started feeling better. After two weeks I was ready to return to work only to find out I had been laid off. Yep, I was laid off from a doctor’s office, not to mention I had only missed a total of three days besides the surgery over the last two years. I have a high pain tolerance and didn’t miss time from work. I got married to my husband that August and started a new job. Things were starting to look up, life with an LP shunt seemed to be well, and I was able to resume my normal life as if nothing had ever happened to me. A year later I started the whole process over again. I was taken into surgery to replace the shunt and he told me that scar tissue had clogged the shunt. A week later I was readmitted to the hospital because spinal fluid was leaking out of my incision and I started having low pressure headaches. They took me in for surgery again and fix that and all was well. Things were okay for the next six months or so, I still had bad headaches from time to time, but nothing I couldn’t deal with. I started noticing changes in my vision and made an appointment with my neurosurgeon. He looked in my eyes and said that my optic nerve was swollen, but not that bad. He said the shunt wasn’t working properly but there was no huge rush for surgery since my optic nerves didn’t look to bad. Over the next month or so I was having really bad headaches. Knowing that I have a high tolerance to pain I called my Neurosurgeon and he argued with me but finally agreed to go ahead and fix my shunt. When I got out of this surgery, he apologized to me and was very surprised that I had been able to function because my opening pressure when he went into fix the shunt was 59. He said that was the highest he had ever seen a person besides trauma patients. So over the next couple of years everything seemed to be going very well. In April of 2004 I found out I was pregnant after about a year of trying. We were ecstatic. I ended up miscarrying in June. We quickly became pregnant again, except being extremely nervous; the pregnancy was going well until I was about six months along. I started having very bad headaches and my blood pressure was way high, which was very unusual for me. I was admitted to the hospital many times during my pregnancy due to the fact that my symptoms mimicked that of preclamsia. It was hard for the doctor to tell if it was my IH or Preclamsia. I ended up having a baby boy on March 2, 2005. He was five weeks early, but he was healthy. He had to stay in the hospital a couple of extra days for some rapid breathing and jaundice. I learned half way through my pregnancy that I would not be able to get an epidural due to having an LP shunt, so went through labor with absolutely no drugs and no pain meds. Life was GREAT, my headache was gone, I had a beautiful baby boy and my husband at my side, things couldn’t have been any better. I woke up the next morning, sat on the side of the bed to get up and realized I had a low pressure headache. I got out of bed and looked in the mirror to find that I had broken many blood vessels in my eyes, they were completely red and full of blood, and I had broken blood vessels all over my face around my eyes, I was a sight to see let me tell you. My Neurosurgeon was called by the nurse and he told me that I could be discharged as planned. I needed to lay flat on my back for two days to help the low pressure headache. I did that and it didn’t help. I managed to live the next three months in horrible pain due to low pressure headaches. I went to see my Neurosurgeon and he blew me off, he said he didn’t know what to do. I went to get a second opinion and was scheduled for surgery the next week to place a programmable LP shunt in. I then received a call stating that my surgery had been cancelled and that my old Neurosurgeon would be doing the procedure. I didn’t think much of it at the time, I was just happy that someone was fixing the problem, by this time I had been in agony for almost four months. Back to work, caring for a newborn with low pressure headaches. Anyone who has had a spinal leak from a lumbar puncture can sympathize with me. I had the surgery and was sent home the next day. The adjustment from that surgery was the worst I have EVER experienced. I guess my head was so used to having no fluid that it was a big adjustment to my body. I recovered from that surgery and started having gall bladder attacks; I landed myself back in the hospital a couple of weeks later having to have my gall bladder removed. Okay, I recovered from that and ended up having to have a new shunt four months later. My opening pressure that time was 48. Things went well after that until I again became pregnant. This pregnancy would be far harder than the last. I was in and out of the hospital numerous times for days at a time over the seven months. They did a spinal tap which came back with a normal opening pressure and drew about 20cc's of fluid off, which doesn’t explain why I am having headaches. Not knowing then that I had Chiari, the spinal tap only made things worse, especially drawing fluid off. They induced me and I had another beautiful baby boy on December 21, 2007. He was seven weeks early and ended up in the NICU for two weeks. He was overall healthy, just breathing difficulties. After another natural delivery, my headaches resided after having the baby. My Neurosurgeon and OB advised me against having anymore children due to all the difficulties during the pregnancy, I agreed and got my tubes tied a month after delivery. My headaches started coming back again and I saw my Neurosurgeon and he recommended that I have a VP shunt (a shunt put in my brain) he did a spinal tap to measure the pressure and the opening pressure was 12, he pulled 18cc of fluid off and I was in the hospital for six hours laying flat and then released. Due to the conflicts between my Neurosurgeon and I, I decided to try a completely different Neurosurgeon in a different city to get a second opinion. He admitted me to the hospital and put an ICP monitor in my head. They drilled a hole in my skull and put a thin wire in that measures the pressure in my brain. I woke from the surgery with no headache. I was in the hospital for three days with no headache. I was headache free for about three to four weeks. When I was released the Neurosurgeon told me to follow up with a Neurologist if my headaches returned. I started researching my symptoms because my headache was at the base of my head, unlike my high pressure headaches and I would get excruciating pains when I coughed or climbed stairs or did physical activity. I came across acquired Chiari Malformation. I made an appointment with a Neurologist here in Richmond. I went to see him and told him that I believed I had acquired Chiari Malformation from my overdraining shunt in 2005 and excessive spinal taps. He smiled at me and refrained from laughing and told me he didn’t believe that I had Chiari Malformation. He diagnosed me with Neoccipital Nerualgia and wrote me a script for anti inflammatory and physical therapy. After two weeks of physical therapy and my symptoms worsening, I made an appointment and demanded an MRI. I was scheduled an MRI, only to find that no one would adjust my shunt. I had to make an appointment with my original Neurosurgeon after begging and pleading and I was finally scheduled to have an MRI. I will never forget the phone call I received from my Neurologist last week when he called me to apologize. I was diagnosed with Chiari Malformation. Those of you who don't know what Chiari Malformation is, it basically means that my brain stem has been sucked down into my spinal column. I have just been diagnosed with this disease; I am yet to know where this path is going to lead. To start my Neurosurgeon has turned my shunt up to the highest setting, in hopes the the fluid will build up in my spinal column causing my brain stem to push back up into my brain some. The damage has been done already, but we are trying to correct it so it is not so bad, to eleviate some of the major symtoms I am experiencing. I will keep updating my blog to keep those of you who are interested updated. Thank everyone for your thoughts and prayers!