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After surgery for a Chiari malformation, Sean Murphy is back to skiing and his other normal pastimes.
When Sean Murphy’s chronic headaches set in, they first bothered him after physical exertion, then after a stressful day at work.
Within months, the headaches were constant, always localized in the back of his head. The pain became debilitating.
Murphy consulted his family doctor and was referred to a neurologist. His hometown physicians were stumped.
Murphy was referred to Mayo Clinic, where he was diagnosed with Chiari malformation type I, a rare condition in which the brain tissue at the back of the head protrudes into the spinal canal. The disorder causes a variety of neurological symptoms, but is treatable.
Mayo Clinic physicians initially sought to relieve Murphy’s symptoms with medication, but as his health continued to worsen they decided surgery was his best option.
“It was getting to the point where just doing my daily routine was an issue,” recalls Murphy. “Not only was I in pain, but I’d been on narcotic painkillers for six weeks with no end in sight. I didn’t want to be on painkillers for the rest of my life.”
Surgery to treat the condition involves enlarging the existing opening of the back of the skull. Typically, people recover fully within a month to six weeks, and the operation is generally successful lifelong for this condition, says John L D Atkinson, M.D., Murphy’s neurosurgeon at Mayo Clinic in Rochester, Minn.
Within six weeks of his surgery, Murphy felt normal for the first time in several months. He was also back to his regular pastimes, including jumping on the family’s trampoline with his three kids, sailing, golfing and skiing.
He credits Mayo Clinic with providing superior and speedy care.
“Mayo was phenomenal,” Murphy says. “The whole staff was outstanding and everyone was easy to work with. It’s a fairy tale how smoothly it all went.”
My husband was just diagnosed with this last week,but also has Stringomyelia. We would like to know some facts and risks on this surgery. He has been in pain for quite some time, even interupting his sleep. Severe shoulder pain and numbness down the arm and hand on the right side. Any comments on this would be appreciated. First he was told he wasnt breathing right and then was sent to rehab and then he went to the chriopractor for a year with no relief. Finally a MRI showed the problem. Thank You.
Thank you for your note to Mayo Clinic. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. However, I have attached a couple of links to pages on our website that you may find helpful: http://www.mayoclinic.com/health/syringomyelia/DS01127, http://www.mayoclinic.org/medicalprofs/chiari-malformation-syringomyelia-nu0804.html. If you would like to seek help from Mayo Clinic, please call one of our appointment offices in Arizona at 480-301-1735; Florida, 904-953-0323; or Minnesota, 507-284-2511.
my wife is being treated for complex migraines , she has had all kind of test . mri . cat scans, eeg, they have all came back ok . she is still having slurring words , like stroke symptions sometimes cant move her fingers or feet , gets real iritable and tired .can this be from complex migraines , she is on topomax
I had surgery for Arnold Chiari Malformation in year 2000. Since then I continue to have headaches as if my neck is pushing up into the back of my brain. My eyes feel like they are pulling. Any kind of bright lights makes my eyes blury. They cut me from my 1st vertibrae up to the crown of my head. I went to another neurologist and he did an MRI and said I had MS. I have been taking injections for MS, but it is not helping the tightning and pulling in my neck and eyes. Please let me know if anyone out there have experienced these neck and eye problems from the chiari malformation surgery.
Thanks
Pauline, Thanks for the note. We’ll forward this on to a physician for a possible reply.
Joel
Pauline, Here is a reply from one of our physicians:
Chiari surgery in the adult realm is used to treat a variety of symptoms often related to the condition. One of the more predictable and favorable results, is relief of Valsalva headaches – cough, sneeze, strain posterior headaches, which can be quite severe and often debilitating. The headache pattern you describe is unusual as a postoperative result in my opinion. I would suggest you revisit the original neurosurgeon or another in your area, and assure there is no misdiagnosis of the original Chiari diagnosis – such as intracranial hypotension, or a postoperative Chiari surgery complication such as cervical instability or basilar invagination. If there are no surgical concerns, then managing your headaches would be more in the headache neurology sphere of treatment paradigms.
Pauline, I had the decompression surgery in April of 2012 and was doing fairly well with it. I too have been having continurd headaches and blurry vision. They also think I have a pseudotumor cerebri, which they thought was redloved and tried to take me off my medicine which proved to not be the answer. I am frustrated and want this to be over. I feel your pain!
My granddaughter who is 18 was just diagnosed with synrex charia type 1. We live in Texas but can travel. Any suggestions for a surgeon. Did you have your surgery at Mayo. I hope you are better
I was diagnosed with Chiari Malformation had my surgery 11/11/2008. At the time of surgery I was wearing diapers, and bed bound. Before my surgery I threw a Pulmonary embolism. Five hours later I was on life support. My husband and family were told if my kidneys slowed down any that I would die. I was on life support for five days, the fluid was slowly coming off. 22lbs. Later my lungs started opening up and then I was removed from life support. Breathing all own my own. I still had to relearn to walk, go to the restroom, and tire to take care of myself. I thank God for a wonderful husband and an excellent sister. My sister lives in Ohio and we live in Augusta, Georgia. That allowed my husband to return back to work with my sister taking care of me. We were waiting for my strength to get better so I could have my posterior class decompression surgery. The surgery went well. I still have a lot of neurological side effects. I have been suffering with bilateral occipital neuralgia. I suffer from great headaches and nausea. I have R.F.A. do on both sides of my neck.I will eventually have to have my C2nerve root severed and this should stop my
headaches. It has been 5years since my surgery. I have come along way. I still have a good way to go. My thought process I still fight with, my seizures are still not under controller. I have not driven or worked in 5years. My husband and I what on the Lord for our direction. Marc and I hold on to each other and laugh to help us get through this. I wish all of you the best and hope your Chiari journey is almost finished.God’s speed:) If you need an ear I have to willing to hear.( decomeblue@gmail.com)
I have been having severve headaches for over a year and taking 400 mg of topirmate. On New Year Eve a MRI showed Chiari I malformation. Last year I had CT scans and MRI and none of them showed this. The nerologist said treatment not surgery I am thinking surgery because I am tied of the headaches. After reading things on the internet surgery looks like the best option.
My son is almost 3 & had been having headaches by the back of his neck/head after playing hard or coughing hard. I took him to a neurologist & he recommended a MRI. My sone just had it last Wednesday & was diagnosed with chiari malformation type 1 his cerebellum protruds 8mm. We are meeting with a pediatric neurosurgeon @ Gunderson Lutheran in LaCrosse, Wi in 2 weeks. I am just wondering if we should try to find a specialist in chiari? I!m so worried about making the desicion to do the surgery. Is it normal that he is so young & showing symptoms? Do you think kids recover faster & have a better outcome then adults that have this surgery? Thanks for your help in advance!
Katie from what I hear so far this is not as rare or uncommon as some think. I watched a news report that it is as prevalant as MS,maybe more so. Its good that could see it early, I think because he is so young he WILL recover faster. And I think it will an advantage for him in growth and development.I had a couple of things that required medical attention as a child that were not properly treated simply because my parents chose no to, is a large disappointment to me and has hindered me in some cases throughout my life. Be aggressive, do the research,get the feedback. Make the best possible choice for you and your son, no regrets. Prayers to you and yours.
Katie – I hope your appt. went well. I have an 8 year old w/ chiari and syringomyelia who has been decompressed twice. Highly recommend Dr. Iskandar @ University of Wisconsin Children’s Hospital. He is an expert in Pediatric Chiari & Syringomyelia. I hope this helps.
I have been have neck pain for about 4 years now. It radiates to the back of my head and feels like something is grabbing the back of my head and squeezing it. I then get a headache that lasts for awhile. My doctor sent me for an x-ray and came back with arthritis in the neck. My mom has been diagnose with having Chiari stage III. Is this really hereditary? What should I request next from my doctor, and should I be worried about my children? I am not a fan of pain meds or muscle relaxers which I have been prescribed I have tried but did not continue. I would appreciate your advice.
Thank you
HI Tiffany, we are sorry to hear you are having this pain. Unfortunately, we are unable to provide medical advice via this platform. If you would like to set up an appointment please contact our appointment office at 507-284-2111. You may also find this information helpful. Thank you. http://www.mayoclinic.com/health/chiari-malformation/DS00839
I have had a constant headache in the back of my head and I have been to 2 neurologist for the past year. My Dr is stumped to what is casuing this but my MRI’s state mild Chiari Malformation type 1. He did not discuss this with me at all just said to go to a neurosurgeon. I’ve done research and differnt dr’s have told me not to do the surgery because of the danger and some say I need it. I just don’t understand what the surgery is all about (how it’s done). Any advise?
Thanks for your comment, Amy. Here’s a link with more information on Chiari Malformation type 1 http://www.mayoclinic.com/health/chiari-malformation/DS00839. Thanks again.
I started to have some vision problems that I could not quite explain to my optometrist of 40 years. They told me I needed monovizion contacts of which they gave me. One week later I called and said this is not working and that I was returning to get back my single vision contacts. When I saw the doctor he told me I was not motivated enough to use monovisoin contacts. I again explained that when I was at work using the uptake probe ( Nuclear Medicine Technologist) I had difficult time working with small dial with numbers. I said something is not right but I can’t explain it. I will forever regret not going to an ophthalmologist. Some time within that year I backed my car out of the drive way to go visit my father and the next thing I know I am driving up on people’s lawns. I continued on and made it to my father’s. I did not drive home and have not driven since.
I was working at St. Vincents Medical center and knew I would get top notch treatment and care but I did not want to get caught in that loop of going to primary care doctor then being sent to someone else and then someone else. I knew intuitively that a needed a team. So I went to Mayo Clinic Jacksonville, Fl where I live. My two brothers were also Mayo patients. One brother had pancreatic ca and the other had chronic lymphocytic leukemia. Long story short did MRI found out I had Arnold Chiari I Malformation with a syringomyelia. Never had heard of it before and asked several medical people I knew that had not either. On December 18, 1998 I had suboccipital craniotomy and laminectomy of C-1 and C-2. Dr. Wharren, who was the chief neurosurgeon at that time, performed the surgery. I had diplopia, horizontal and vertical nystagmas and some other issues. Post op, 8 months later, I had strabismus surgery to realign a narrow feild of straight vision so I would not have to wear a prism on my glasses. I am left with a horizontal nystagmus, diplopia on side gaze (which is also not only double but also misaligned and rotated) and a dizziness when I turn around to look at something or someone. They or it is moving not me. I have a very slight gait problem and very insignificant balance issue. When riding in cars things appear closer than actually are when coming close to me, peripheral vision not good, fluorescent lights really bother me, have to be extremely careful on steps. There are many visual things that bother me. All and all very very blessed considering the out come I could have had. That was some 10 months of surgerys and physical
therapy. I am ever grateful to the physicians at Mayo. Dr. Wharren, Dr. Brazis ( nueroopthomologist) and Dr. Thorestian (sp? PT doctor). All the deparments that did field vision test, MRI’s, nerve conduction test and all the other doctors in the opthomology and neurology departments. The Mayo Clinic has a vast amount of knowledge and a vast amount of knowledge to pull from. They will definitely get to the bottom of the problem and in a professional calm atmosphere.
My daughter was diagnosed with a syrinx from C2-C7. At first there was some discussion about there being Chiari Malformation,but they told her it wasn’t'that, just the syrinx. We were told surgery was her only option, but she would probably end up paralyzed. She debilitating migraines and is about to give up. Is the surgery for Chiari Malformation the type she would need and is it just a given that the surgery would leave her paralyzed? Anyone give us an answer? Thank you.
Hi Charlotte, unfortunately we are unable to provide medical advice via this form of communication. Please contact our appointment office to set up a time for an evaluation. http://www.mayoclinic.org/patientinfo/appointments.html
I have been having very bad headaches in the back of my head and shoulders for years. Recently I started having vision problems in one eye, numbness in my fingers and bad nerve pain running down my arms. My balance has also been off and slurred speech…etc… I first had an MRI of my head without contrast (insurance woudnt allow contrast) I was called about a week later and was told I had Chiari Malformation and would need surgery. However, the Dr consulted with a specialist and I was told I needed to have another MRI of my brain and spine with contrast. I am still waiting for the results but was told that the first MRI looked bad. I am so nervous about having surgery and had several people tell me to contact the Mayo Clinc. Can someone please tell me if you feel I am safe having the surgery at the Mayo Clinc of do I need to research additional hospitals? Thank you so much. I just want to feel better and move on with my life. I was also told that I have very bad fatty liver and will have a biopsy on Thursday to see just how bad it is. Can I still have the surgery if my liver is failing? So nervous..
Thank you…
I’ve had 8 brain surgeries due to a ruptured brain aneurysm and decompression surgery was by far the worst. I spent 5 days in the hospital. When I got out I spent 6 months in physical therapy and went from barely moving with a walker to using a cane now. Pain is the hardest thing to deal with, Its been about 6 years and I still hurt bad. I see a pain mgmt dr who just gave me a botox shot.
I had decompression surgery Jan.14/13.Still recovering post-op I am being told by my neurosurgeon.My headaches have lessened, shoulder pain mostly gone,gets burning at my shoulder blade if does any light activity.I was wondering if anybody else had a temperature. I’ve had a temp. since my surgery. Mostly in the evening.It makes me feel terrible.My ESR is elevated.My family Dr. feels I have inflammation somewhere in my body but can’t find it.Had a MRI 1st DR. thought I may have infection on inside of my surgery.Only showed I had a small CSF leak in which the neurosurgeon wasn’t concerned with. I thought by now I would be starting to feel better. Anybody got any answers for me? Thanks.
Thank you for your comments, Tracy. We are sorry to hear that you continue feeling ill. Unfortunately, we cannot provide a second opinion or explain why you are having your current symptoms without having one of our specialists review your records and perform a physical exam. Please contact our Appointment Offices if you would like to schedule a consultation http://www.mayoclinic.org/contact/. Also, you may want to check out our patient online community http://www.mayoclinic.org/connect/.
Hi. I am suffering from headaches since 2010. All began when I started to do high impact exercises. I was dignosed with cerebellar tonsillar ectopia which is “less severe” than Chiari. Since then I changed my lifestyle, diet, etc… My health improved dramatically. However 6 months ago headaches began to get worst. The pain in the neck, dizziness, constant noise and even bladder control problems started. Since January I have visited the emergency room 4 times. The pain is incredible and when the medication is gone I still feel pain. I am in pain all the time. I have learned to live with it. The doctor did another MRI last Friday since this is getting out of control. I am afraid of getting addcited to painkillers! When I looked for more information I read about this surgery. I will talk to the doctor because really, I cannot find what else to do. I am a lawyer and everyone keeps saying it is all stress. I love my job and it is not stressfull at all. I plan to have a baby but having all this medication inside of me makes me afraid. I do not know what to do. Thanks for reading…
I have a cyst on the back of my brain. I have terrible migraines. I’ve been taking Topamax for a year now. Before that I started where I would start shaking, blackout, couldn’t speak foe awhile then the feeling afterward was drawing. This is all happening more often as I get older as I was born with the cyst.
Hi Jessica and thank you for your note. We are sorry to hear of the difficulties you are having with migraines. Unfortunately, we are not able to provide treatment recommendations or diagnose conditions through this correspondence. If you would like to schedule an appointment at Mayo Clinic the numbers for our locations are as follows: Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511.