Comments on: Relief for pain caused by Chiari type I malformation

By: Polly Gilgenbach

Polly Gilgenbach — Fri, 10 May 2013 17:34:59 +0000

In reply to jessica. 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.

By: jessica

jessica — Fri, 10 May 2013 17:29:33 +0000

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.

By: Melissa Pellicier

Melissa Pellicier — Mon, 29 Apr 2013 00:23:43 +0000

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…

By: Heidi

Heidi — Fri, 19 Apr 2013 13:39:55 +0000

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.

By: susanashephard

susanashephard — Sat, 06 Apr 2013 07:46:41 +0000

In reply to Tracy Payne.

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/.

By: Tracy Payne

Tracy Payne — Fri, 05 Apr 2013 23:14:20 +0000

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.

By: Amy

Amy — Fri, 05 Apr 2013 19:41:36 +0000

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.

By: Brenda Miller

Brenda Miller — Sun, 24 Mar 2013 04:53:06 +0000

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)

By: Lorene Crisalli

Lorene Crisalli — Tue, 19 Mar 2013 14:14:38 +0000

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…

By: Corinne

Corinne — Sat, 09 Mar 2013 07:27:17 +0000

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.