Hi, my name is Rene my friends call me Nay Nay, anyone with ACM can call me Nay Nay too since we are somehow connected with this disease.
I started having headaches before I can remember but I know I was very young. I had seizures from age 13 to 17 and one or 2 after surgery ( to remove tumor unrelated to ACM). I started having bad migraines daily at 22, my Doctor put me on Vicodine around the clock. i am not one to take drugs nor did I care to cover up whatever was wrong instead of curing it. I went back to my PCP and made her take xray's to find out what was wrong, i was sure because of the pain in my head that I had a brain tumor. They found a tumor in my right mandible (lower jaw). I was told by Doctor after Doctor that my headaches would go away after the tumor was removed, I told them all they were wrong but they knew better because they were educated....not! I went from this kind of Doctor to that kind after surgery, my insurance finally sent me to a world renound Neuro "Scott Haldeman" who diagnosed me right away with ACM. I was told that there is no cure, they don't know much abot it and surgery has not been unsuccessful so go live my life and try to hanlde it. ???? really?? I was scared but since he was a big shot I did was I was told.
Seven years later I started having new symptoms and the symptoms I already had were worsening. I went to a new Neuro (insrance reasons) and told him I have ACM and i'm getting worse, he said surgery is good now and no big deal. I went to a Neuro Surgeon "Kenneth Burros" and he changed my life! He made me feel very comfortable with him, he had experince with ACM and he made sure i knew that surgery was an option! I scheduled the surgery with him the very first visit. 2 weeks later I weas decompressed. I am sharing my story because I hear so much abuot my fellow ACM friends having many surgeries and being misdiagnosed and going through hell and I don't know why I have been so lucky but since my decompression life is so much better! I still have headaches, I still have weird pain here and there, I still cannot sleep well sometimes, i still get dizzy, i still this and I still that but I live life to the fullest! I can go dancing and I can be active and I might have a headache the next day but it's not so much pain that I want to cry and I want someone to run over my head with a mac truck!! I wish all of us could be as lucky as me!
I have tried to donate my time and my experience to anyone that can learn from me and hopefully help all of you but no one has responded. If any of you know a service that can and will study me, I will so let them poke and prod and whatever to figure out how I am so lucky!
There is nothing better on earth than holding your children in your arms, especially when they are young. One day I was in the middle of cooking dinner. My then 3 yr old son came in and asked me to hold him. I stepped back from the stove, he asked what was for dinner and I told him that it was Mac n' cheese and hot dogs...his favorite thing. I picked him up and as soon as I did that he went limp. I was afraid but decided that since my daughter had her shots the next morning for turning one year old that I would tell our Pediatrician about what had happened. The next morning I mentioned what had happened to the Peds. doctor and he sent Ty down to have heart rhythm test. We got a call the next day and was told that Ty had to see a cardiologist and was being diagnosed with Prolonged QT Syndrome. After a million and one questions for the Cardiologist, I was petrified. I remember looking down and when I looked up I cried as I told him that Grace had passed out the night before. He had asked if she was in the waiting room and luckily she was...she was rushed into the cardiologist room and the same heart rhythm test was done, and she had the same results as Ty. And the cardiologist decided to wait 2 weeks and redo the test in both children before putting them on Beta Blockers. I noticed that Ty's eyes started to have a "lazy eye" effect. The peds. doc sent us to the eye doctors and the eye doctor told us that since Ty had a seizure disorder that in order to do the surgery for the eye he had to have an MRI. Luckily someone had cancelled an MRI that afternoon and we were taken right back in. Just before seeing the cardiologist we were to see the Neurologist. The nurse came in with the doctor at the hospital and the doctor said that the nurse would watch Ty and that he needed to talk to me, I was puzzled but I said OK...we walked down the corridors and went into the PICU ward in which he lit up the light boards that they view MRI and Xray films on. And he put films on the board. He told me that they were Tys, I argued and said that they were that Ty had an MRI and not Xrays (boy did i look dumb, lol). He explained Chiari to me and told me the rarity of it. I cried and told him about Grace. Within a week Grace had an MRI and confirmed Chiari...and that hers was worse than Tys...both needed surgery. It took weeks for me to find the right surgeon to do both surgeries on my children. TCI (the Chiari Institute) was just a dream under construction at the time. Luckily my children's father is in the military and Walter Reed in Washington, DC was an Option. We were told about Dr. Moores and his Chiari work. I contacted Walter Reed and Dr. Rosner was on call. He immediately returned my called and I explained that I had 2 Chiarians. He was incredibly awesome. we lived in Louisiana at the time and he arranged with the military for us to either drive or fly out. We decided to drive so that we would be guaranteed not to be stuck somewhere and that way we could also go site seeing. Within a couple of weeks we were in DC and met Dr. Rosner and I asked about Dr. Moores. He walked out of the room and about 5 minutes later came in with a gentleman that said "my name is Dr. Leon Moores and I understand that you have 2 children with Chiari" I about had a heart attack. He asked if my oldest son...who is 2 yrs. older than Ty had been tested for Chiari and I had said no because he had never had any symptoms...that is when he said it didn't matter that is was important to know. My entire family was tested with in that week.
That was December 2000, Since it was so close to Christmas it was decided not to do the decompressions until after Christmas just in case something was to go wrong. So we went to Florida for Christmas and returned to DC the second week of January. Two days after we got back to the Ronald McDonald House Grace went limp and I knew something was wrong because she didn't spring back like she did the other times that she was seisured. We rushed her to the ER and it was FILLED with people. We informed them that Grace was a brain surgery candidate and was rushed back immediately...only to find out that she had a seizure. Her talking quickly turned into tumbling. Within 2 weeks she had her decompression done and has been doing great. Her seizure did do perminate lung damage and she has severe Central, Obstructive AND Hypopnea. They said that she would eventually most likely outgrow most of the apnea events by the time that she is a teenage but she is now 10 and hers is getting worse. It is ok though. God just sent us a special reminder on how much precious children are and that anyone can depart from us at anytime in their lives and at any age.
Major events in our lives, no matter how traumatic, often turn out to being a blessing in the end. The outcome also alters the quality of life, our perspective of ourselves and our attitiude concerning the situation. Such was true, when I was diagnosed with Ehler's Danlos syndrome, cranial settling and associated Chiari 1 malformation, in March of 2007.
Facing brain and spinal surgery, in May of 2007, although was very scary and frightening, both for me and my family, it was something I knew I had to go through with an optimistic attitude. I also knew I had to face this ordeal head on and go through surgery, if I was going to get physically healthier and stop the progression of the cranial settling.
However, my journey with dealing with a physical alighment, did not start when I was diagnosed with EDS/Cranial settling at TCI, it began at birth, when I was born with Cerebral Palsey and scoliosis 36 years ago.
In answer to Dr. Bologenese's question at my sixth month appointment "How has this experience improved the quality of your life?" I firmly believe that because of the Dr's intervention, the support system I have and my determining will and faith, this surgery has allowed me to look in the mirror and be confident with the person I am and break free from the emotional and physical scars of my condition I was born with.
This is my story and it is my hope that it will help support those who are at the beginning of the road facing similiar situations. I am at the eighth month post-surgical mark and taking one day at a time and enjoying life again. Here is my story:
I was born 3 weeks early on July 17, 1971 with a condition known as Cerebral Palsy which was caused by the rubella rash my mom had aquired during the pregnancy. Also, the pediatrician advised her at some point not to undergo another pregnancy, after mine, because the birth of that child would be traumatic. The baby would need to be completely transfused at birth. During the delivery, the umbilical cord became wrapped around my head, cutting off oxygen to the brain.
As an infant, there were also early signs that my parents noticed, which pointed out that there was something wrong with me. The red flags included: I would not respond to sound only to the light, excessive drooling, my fingers and toes were contracted and curled up, I was unable to sit up and support myself, excessive sleep, I had long hands and feet and had trouble crawling and moving on my own.
At the advice of the pediatrician, around nine months, a complete physical and neurological work-up was done at Albert Einstein Medical hospital, Bronx New York. It was here that they diagnosed me with Cerebral Palsy and found that many of my symptoms were caused by fluid buildup at the back of the eardrum. To help drain the fluid, Dr's placed myringotomy tubes in both ears. Once these were placed and I was sent home, we were then referred to the Burke Rehabilitation center in White Plains, New York for a further extensive evaluation to find out the extent of my disability. It was founded that I had significant speech deficit and a minimal hearing loss. and, the motor deficit impairment caused by Cerebral Palsy was only 20%. Given the fact that I was diagnosed in the 1970's, when little was known about birth defects, specialists were uncertain about what the patients prognosis would be and how successful the life a handicapped baby would turn out. However, at the advice of Burke Rehabilitation from 2-5 years old, I went to the St. Agnes Children's Unit, in White Plains NY, were I received extensive speech, occupational and physical therapy throughout the day at the hospitals all day nursery school program. It was an early childhood two year, nursery school rehabilitation program, on an out- patient basis for children who had neurological and physical handicaps like; cerebral palsy and Spina bifida.
My symptoms with chiari 1 malformation associated with EDS, and cranial instability began abruptly 2 years ago in 2006 with episodes of un-explained vertigo, dizziness, severe pressure type headaches, chronic fatigue and walking difficulty. These symptoms, slowly and progressively became more and more present, to the point where walking and doing everyday tasks became extremely difficult. At the onset I went to an ENT specialist, to have my ears examined and to find out why I was experiencing dizzy spells ( what type of vertigo was it and why was it happening? Was it a virus, a cold, or was it an underlying symptom to a bigger problem?) The dizziness alarmed me, because I had always had problems with my ears as a child and thought maybe I was experiencing the same problem as an adult. My hearing seemed muffled and over time, I just thought that this was how I was hearing. (This was the first time I had been to a ENT in quite a number of years). The doctor cleaned out my ears, and ordered an MRI to rule outif there were any other neurological problems that could be causing my symptoms. Dr. Orquiza also noticed that my inner ear membranes were weakened and slightly bowed in, and attributed this as part of the problem. It was on the MRI taken in early February 2006 that first showed that I had a 7mm radiographic Chiari Malformation.(7mm of right cerebellar tonsillar ectopia) was how it was noted in the report.
In the meanwhile, I was given a prescription to take for the vertigo; it helped a little but was not a resolution to the problem. Tubes were eventually put in place in both ears and for a few weeks after, I felt a little better but overall still didn't feel right. Six months later, the tube from my left ear, fell out that not only caused the tube to make a big whole inside my ear but also caused the vertigo to occur daily,. along with other symptoms to occur steadily rather than in episodes like before. As a result I had to have a procedure that is medically termed a right tympanoplasty. It is a procedure done under general anesthesia to patch a hole in the ear with Gel foam. A hearing test prior to the surgery showed that I had a significant conductive hearing loss.
Symptoms at this point just spiraled out of control and my absence from work became more and more frequent. When you are not feeling well and a condition is working on you, it can affect every part of your life. I went to three different neurologists and they all said that it wasn't anything thing to be concerned about.
In March of 2007, I was referred to a neurologist and was reassured that this doctor will listen to me and take the time to diagnose what is wrong and get me to the place where I need to go if necessary. I met with Dr. Hefferan, and at that appointment, gave him the MRI and explained everything. Dr. Heffera, after a very thourough examination, confirmed that I did have a Chiari 1 Malformation and that the only way to cure the malformation was to surgically remove it. He also explained what Chiari malformation was and said that I needed to be seen by a Dr. Milhorat, who was a doctor in New York who specialized in structural malformations of the brain. Dr. Hefferan felt I was in distress and needed to be seen ASAP, that by the dayís end, I had an appointment to be seen at The Chiari Institute (TCI) the following week. This experience has shown that sometimes it takes just a little extra help from a Dr. who cares to get you ahead of the line. It has also helped me to realize that we as patients need to be our own advocates and how important it is for each of us to keep pushing ahead, until you find the right resources that will help you in the long run. The initial appointment at the Chiari Institute is set up as a two day outpatient visit. The first day I was evaluated by a neurologist, given a very lengthy and comprehensive medical history intake from a nurse and filled out paperwork. This intake covered medical questions pertaining to my birth, infancy, early child hood, education, adolescence and adulthood. It is one tool that helps the Drís to specifically diagnose the structural malformation that you have.
It is very helpful to have a support system of at least one or two people with you when you are going through this. My mom, and my two brothers and I have been through this together as a team, right from the beginning. Mom in particular has been there when I was at my lowest, when I was scared, the one who got the brunt of when I was feeling my worse and made it possible for me to recover the way that I did and got to where I am now. I love you mom, Paul and Anthony. Thanks for everything. They each did their part, but more importantly, we went through this together.
This intake was a learning experience for me. Some of the questions about my physical traits that I always knew I had were surprisingly related to Ehlerís Donlas Syndrome. EDS, is a genetic connective tissue disorder in which the collagen, does not function or work properly and causes you to have hyper-mobility in your joints. I.e .As a child I was always double jointed but never thought it was an issue. I remember it being very easy to sit in the lotus position and with ease could get up on my knees, walk on them, in addition to laying flat on my back and front while still being in the same position. I fit the classic EDS type, in the fact that I had a lot of physical ďgrowing painsĒ, as a child. I am hyper-mobile in my fingers, hands and knees.
The second day I underwent a lengthy series of MRIís and X-rays which are common procedures for new TCI patients. Specifically, I had a 3D Cat-Scan, an MRI of the brain, Cine, cervical Spine, thoracic spine and Lumbar Spine. I also had an x-ray of my cervical spine, with me sitting in flexion and extention. After the tests, we waited for the reports and headed back to TCI were I met with Dr. Bolognese, for the first time to discuss the results.
Dr. Bolognese, during his consultation, explained that I did have a mild Chiari malformation but the tonsillar herniation was not the real cause of my symptoms. At the time, he was not sure what the one exact problem that caused the herniation. Dr. Bolognese ordered a stand up MRI, to be done prior to the next visit, to determine the exact cause. It was determined though that I did have Ehlerís Danlos Syndrome. Dr. Bolognese went on to explain that there were two types of Chiari Malformation patients, associated chiari and True Chiari. He went on to explain that my tonsilar herniation was mild and was associated with or was caused by Cranial Settling. Cranial settling is when the skull sits too low on the spinal cord and this was not good.
April 11th I went back to see Dr. Bolognese and it was the day I found out my complete diagnosis and the day he told me that I was a candidate for Cranial decompression and fusion surgery. I knew this was going to be a big undertaking when Dr. Chan told me that the surgery was a big deal and that it had its risks. He also mentioned that my history of scoliosis had, put me at a greater risk for developing these problems.. I felt assured that this was going to work because both Drís said it had a high success rate but was still risky. My true motivator was that I had to get better, no matter what it took. I remember feeling relieved that finally we had gotten somewhere and had gotten answers. At the same time, I felt overwhelmed by everything that Dr. Bolognese was telling me. Though, in the beginning I didnít understand everything that was going to happen I still felt positive with going ahead with this surgery, because I knew I was in the best of hands.
In the intrim of my surgery date, I unexpectantly had to take a medical leave of absence from work because my physical condition worsened which made it extremely difficult to function at a normal level. I had an episode where my legs gave out on me and I fell right down on my knees. When this happened, I just gave up and took the advice of my neurologist to stop working and surrender to my illness. I could not do it any longer.
On May 1st I had all the pre- operative testing done that is required by North Shore Hospital. The following day, on May 2nd, I was admitted into the hospital and had the invasive cervical traction procedure. I was put to sleep under anesthesia and when I woke up, in the operating room, I felt like I was in a bird cage by the way my head was suspended up by a halo traction device that was in my head. Dr. Milhorat was very, very nice and like Dr. B, made me feel very comfortable. My head in traction, when Dr. Milhorat pulled up on my head with weights at 25 pounds all of my symptoms disappeared. I could not believe it, the pressure in my neck and the headaches were gone.This procedure proved positive that I had cranial settling and I was headed for Cranial decompression surgery the next morning.
It was May 3rd and right on time, at 6:45 am in the morning they came for me.and I was wheeled off to surgery. Dr. Milhorat came out and spoke to my mom and said that there was more work to do then expected. He explained that my cervical spine was a zig zag. and in bad condition. They also had to straighten, reconstruct and decompress the vertahrae form c1 all the way down to c7. The second part of the surgery was when they fused my head to my spine.
After the eight hour surgery, I spent two days in the ICU and then on the third day was moved to the step down unit. I donít remember much about these three days, only that I felt like I was run over by a truck and that my head was shaved. I also felt as if someone had taken my head and wound my head up as tight as it would go. I pull no punches here, the pain was really bad but they made me real comfortable with intervenous pain management drugs and it was controlled by a pain management control pump. That pump was my friend for 5 days after the surgery.
I see so many people asking question about the spinal cord detethering, so I thought I'd share my positive story. I'll give a little "chiari" history first. I was diagnosed with ACM in February 02. I was decompressed in June of 02. My chiari was relatively simple, just a 12 mm herniation. My symptoms were getting bad fast though. I had been having drop attacks 2-3 times a day, and very severe apnea. The decompression went well, but I ended up with several blood clots in my lungs a few days after surgery. But I made it!
I did well, no drop attacks and the apnea improved, after decompression (no shunts, btw, lucky for me), but I was becoming symptomatic again within a year. TCI didn't really believe me at first, since my chiari had been so straight forward. But I was starting to have seizure like activity that was getting worse and worse. I was also having severe back pain, leg numbness and weakness. My legs felt like two heavy sandbags. My legs would not obey my brain's commands. I was also having severe vertigo again, difficulty swallowing, bladder issues (yecchy..I was always leaking!). I was also inexplicably gaining weight, even though I was watching what I ate and trying to exercise. Actually, exercise became impossible around May of last year. I hated that! I was always fighting my symptoms by keeping active, and suddenly I was having trouble just walking.
Finally, last year, I had enough and got pushy with TCI to re-evaluate me. Dr. B. told me I had OTFT, and it could not be seen on MRI. He also suspected CCI. I went to NS-LIJ (I'm a Long Islander, lucky again for me), where I also work, for the invasive cervical traction and I was supposed to get detethered the next morning (this was in December of 06). Well, I responded so dramatically to the traction, that Dr. Milhorat wanted me to get fused first. I was fused from the skull to C5 the next morning. (but that's another story). Dr. B. recommended that I get detethered ASAP, especially since I didn't have any issues with traveling.
Funny thing happened by Christmas day. I was completely cross eyed. I could not straighten out my left eye, it was in the corner staring at my nose, and my right eye was traveling a lot. I called TCI after the holiday and they had me in the office right away. They had never seen a patient's strabismus get that bad after fusion. I had 5 doctors in the office. Dr. Kula agreed with me and my friend, who was my chauffeur for the day, that the increased pull on the spinal cord was causing increased irritation of the cranial nerves. I had already scheduled the detethering a for January 22 (07), so in I went.
The recovery was long, and sometimes slow and frustrating. I had tremendous post surgical pain, but I was determined that these surgeries would work. I started PT in March, but switched to another therapist in May. This guy did all hands on, a therapy called Myofascial Release, and it got me moving and managed my pain very well. I continue with at home MFR to this day, and it keeps me very functional. I was back at work in 5 months, at the end of May of this year. I'm a lab technician at NS-LIJ (cool, eh? I get all my Chiari peeps spinal fluids to analyze, and your bloods too).
The GOOD news: I walk 16-20 miles a week now, have lost 15 lbs (still losing) since May, and will be able to return to my Martial Arts practice (modified for my fused neck, of course). My bladder issues are gone! My legs feel strong, no more sand bags! I No longer have a seizure when I move my head, and my headaches are much improved. I still have nerve pain and muscle pain and headaches, but it's not nearly as debilitating as it was before surgery. And now I can help myself when I am in pain.
We have to accept that no matter how successful the surgery, we will always have some level of disability. But knowing that and accepting our limitations gives us the freedom to work with our problems, improve what we can and find ways to meditate our way though the hard times. Nerves can heal, but there is no way of knowing how much damage may be permanent in each INDIVIDUAL case. If the damage is long standing the healing can take years, or maybe even never. But give your bodies the tools they need to heal. Give it good nutrition, give it movement, give it TLC. It will make life easier.
Please be VERY patient with your recovery. Get PT, and especially any type of massage that will help relax the back muscles and soften the scar tissue. That is a HUGE help. And move as much as you can handle (but be gentle).Good luck to you all!
I found out at age 10 that I had Ehler's Danlos Syndrome while seeing an orthopedist. While researching the internet at age 32, I found an article that had linked EDS with Chiari Malformation. I realized that all of my symptoms could be related to Chiari. And, I knew that Chiari ran in my family. I had 2 aunts and 3 cousins that were diagnosed and had had surgery. My primary care doctor referred me to a neurologist. The neurologist ordered the MRI and then went on vacation. I was able to go to the hospital to pick up my report which showed that I did in fact have Chiari. I had my first decompression surgery at the Mayo Clinic a few months later (August 2008).
After recovering for 4 months, I returned for my follow up visit to the Mayo Clinic. It seemed that all of my symptoms had been resolved. Just five months after surgery, I was able to start exercising again starting with just walking on the treadmill. Nine months post op my family moved to a new home. After carrying heavy boxes, I began to feel bad again. I started having more headaches. The headaches would feel like tension headaches that would then trigger migraine symptoms (nausea, floaters, dizziness, sensitive to light, and extreme headache). After 3 to 4 months, my symptoms seemed to be close to what they were before my first decompression surgery. I was becoming more and more limited in the amount and type of activity I could do. I decided to return to the Mayo Clinic about 1 year after my first surgery in regards to the symptoms returning. They tried to treat my chronic headaches over the next several months with 3 new prescriptions. Each prescription would give some relief. But, the symptoms kept returning regardless. I was laid out in bed for 4 to 5 days per week with headaches. If I would get up to switch out a load of laundry and unload the dishwasher, I would be laid out in bed again for the rest of the day. I could not function or take care of my family.
I also had a limit to the amount of weight I could pick up. After my first surgery, I could not pick up any weight over 10 pounds. As I began to get worse again, the symptoms became worse if I tried to pick up too much weight. If I picked up weight greater than 10 to 15 pounds (including groceries), I would end up in bed that day and the next day with tension headaches that would "lock up" my head and neck and would turn into a migraine type headache. I pushed through the headaches enough to build up a light exercise regime. I was hoping that the exercise would help the headaches in addition to taking the medication (and build up the amount of weight I could pick up). Exercise gave me some relief. But, the same symptoms persisted.
I had done my own research the first time when I had found the link between EDS and Chiari on the internet. So, I again started looking online. I was hoping to connect with a support group for post op Chiari patients that might also still be living with pain. My research led me to the Chiari Institute where I found information about cervico-spinal instability. I felt that I had most of the symptoms. So, I thought it would be worth it to see if I could try to find some relief.
After being accepted by the Chiari Institute, I was informed that the reason why I still had so many symptoms was that I only had been "partially decompressed." Dr. Bolognese was able to show me the exact spot on my MRI where my cerebellum was sitting and still blocking the flow of CSF.
After recovering from surgery just 1 year ago in January of 2012, I am a new person! I can function again and take care of my family. I am able to cook again, homeschool my children, go out on my boat, do household chores, and exercise again. I am even looking forward to going snow skiing with my family in 2 months. Because of Dr. Bolognese and the Chiari Institute, I have my life back. I would say that I am back to 90% capacity from before my symptoms ever began. I am so thankful that I do not have to continue to live in pain every day. And, I am so thankful that I can take care of my family again instead of them having to take care of me. I write this in hopes to help others that think they have to continue to live with the pain. If I had not continued to search to find answers and had my second surgery, I would never be able to be where I am today!
This story is kind of long but it's purpose is to let you know that Chiari and it's related problems does effect many children I have a lot of Spinal Cord damage which is permenent.With modern Testing that we have now we can see the damage that is being done but for some reason it is overlooked by some Medical Profesionals.
As a child I always thought it was normal when playing ball to have pressure in your neck when running,jumping,hitting baseball and kicking the football.By age 12 I started to over heat when playing any ball I began feeling this was not normal.Then one day in football practice I was hit very hard from behind this snapped my neck my legs went numb and I felt very dizzy.My mom took me to the hospital where they x-rayed my neck this was in 1970 there were no MRI's back then.They diagnosed it as whiplash.
I was in the 8th grade then after this hit things began to change I began having very bad headaches when playing any sports my balance began changing it got worse and worse by the day.My mom took me to Drs. they ran many tests which showed nothing.By my Freshman year I had to stop playing any ball I just couldn't handle the headaches any more and by balancehad gotten very bad along with the over heating.
By my sophamore year I began throwing up because of the severe headaches walking up and down steps was very hard I would over heat very bad.I continued to go to school but it was very hard getting up in the morning all I wanted to do was sleep.
I began my Jr. year of High School things had really gotten bad by then my ENT said the balance problems could be an inner ear infection (My thoughts were an inner ear infection for 4 years) but I was ready to go to anyone at that point.I finished my Jr. year the ENT sent me to a Neurosurgeon who began running tests which once again showed nothing he said there was one more test which he could do which should show the problem but warned us that the test could cause a stroke the test is now obsolete thanks to MRI's and CT Scans.
This test showed the problem and said he wanted to do the surgery as soon as possible he gave me two weeks to recoope from "Pneumo" he exoplained what he was going to do and did the surgery afterword he said things were more complicated then he thought.
It took about 3 months for things to get better but the headaches were better I felt much better finished my Senior year and graduated.He said I would have limitations thru life he was right I did a lot of lifting which hurt very bad and would cause headaches but not as severe as before surgery.
In the year 2000 I began noticeing big changes a lot of pressure in my neck things began worstening like my teen years I went back to my Neuosurgeon who did my surgery in 1974 he got his notes from back then and reminded me what he said back then that I would have changes thru life.I had my first MRI done it showed some problems by this time my NSG from 1974 had retired my new one sent me to Indiana University Medical Center in Indianaplolis they first said they had 4 NSG's which specializes in the neck wno could do the surgery they looked at my MRI's and I went back a month later and they said there waxs nothing they could do to help me and sent me home.
I got my Medical records and began researching on line my Surgery report from 1974 mentioned Chiari,Syringomyelia and Basilar Invagination.They were also mentioned in my MRI reports.I sent my records to TCI in New York they resonded and said I needed a surgery right away I've had multiple surgeries there (5) two Revisions one to reduce the Syrinx they put a tube in my C2 area then a teathered cord and my latest was a Cranio Cervical Fusion which was done in March of 2013 I had a Stroke during the surgery I am getting better but I'm still having troubles walking but things seem to be getting better.
Living with chiari first surgery was in 1974 at age 17 was doing pretty wel til 2000 I've had 5 surgeries the last 6 years @ TCI in NY from Evansville,Indiana