Page 4 Success Stories

If you have a Chiari success story that you'd like to share, just CLICK HERE and send it in !

My name is Brian, for several years I had suffered from extreme headaches after exerting myself.  It got so many normal activities would bring on my headaches.  Playing catch with my son, golfing, doing yard work, even laughing, coughing, and sneezing would trigger pain.  In early 2004 I had a CAT scan that showed congestion in my sinuses and my headaches were considered associated with my allergies.  After 2 years of the headaches not going away and in the summer of 2006 getting very frequent I returned to my doctor and requested an MRI.  I was diagnosed with Chiari Malformation Type I in August of 2006.  I am married with 3 children and needless to say my wife and I were very scared.  As we researched Chiari online are fear turned to panic.  There is a lot of negative information out there about Chiari.  I ran across these pages of success stories that gave me hope that there was treatment out there.  I want to thank all of the people who shared their success stories, they helped me a lot.  As if decompression surgery was not enough it was also determined that I had a leaky aortic valve and I would have to undergo heart valve replacement surgery after I recovered from the decompression.  On November 13th I was decompressed.  I was in surgery for 2 hours and home in 3 days, but that was only the beginning.  I developed a leak from the surgery and spinal fluid formed a pocket under the incision.  My surgeon was patient and confident the leak would heal itself and the fluid would go away.  It was completely gone after a month without the need for another surgery.  Recovery was difficult, the pain medicine I was on made me very nauseous.  I was back to work in 6 weeks.  It hurt to cough and sneeze for a while longer but that went away with time.  The headaches I suffered from before the decompression have not returned.  In February I had open heart surgery and my leaky valve was successfully replaced.  I had both surgeries at St. Josephs in Syracuse New York and can not thank them enough for what they have done for me and my family over the last several months.  The decompression surgery was worth every risk.  I have my life back and can play with my children.  bmerkt@localnet.com

Hi. My name is Shirlene Staves, and I'm another success story!  In 1996, I suddenly began to lose my equilibrium.   I couldn't keep my balance in heels I had walked in for months prior to this problem.  Mealtime was absolute torture as I would try in vain to swallow my food many times.  Once I attempted to eat some soup.  It came through my nose.   During all of this I had gone to several doctors (all of the same association).   One told me I had vertigo and put me on "Anti-vert" medication.   Another told me I had an inner ear infection, took me off that medication, and put me on another kind.  Another told me I had
cluster headaches and put me on yet another medication.  I threw all the medication away, because I felt they werre not helping me, but I was at a loss as to whom to turn to next.  Meanwhile my condition was worsening.  My husband would wake me up at night, alarmed that my breathing was so erratic. I could not eat a meal without almost choking to death, or so it seemed to me! I abandoned the heels for sneakers, and wore them 95% of the time.  I began to be a recluse, because I felt so bad, physically, and could not enjoy myself whenever I went out.

Finally this year, I went into the hospital for a hysterectomy.  Immediately after the surgery, the doctors became alarmed  because I simply was not breathing normally.   I could not get out of bed without assistance, and my speech was slurred.  For a week I was in and out of consciousness as the doctors puzzled over my condition.   Finally they did an MRI, which told them
what the problem was.  They told my husband and children to thank God they discovered it then and there. They could have lost me.  After surgery, my conditioned immediately improved. I remember very little of the week before the surgery, but a few days later I was sitting up, trying to talk.  The respirator had been down my throat for so long, that it affected my voice for a few weeks. 

It has been two months since the surgery, and I am feeling great!  Its so good to have my life back!  I'm gald I found you, and that I could share my story with you. I didn't realize there were other people who had experienced the same kind of illness as me.  Thank you for the opportunity to share my story.   Shirlene Staves (HayShir@aol.com)

From Beth Bania
Dear Chip:
     It has been 13 1/2 mos since I had a 20 mm right cerebellar penduncle removed.  I am now staying awake throughout each day (that's a major improvement).  My energy levels are much improved as are my balance, vision and swallowing.  I still have some residual effects to each of them but nothing - not even close - to what I had before the surgery.  My short term
memory is a great source of humor - and it's difficult to tell what is age related versus surgery.  I do have some problems with word retrieval especially under stress (that's a new symptom since surgery)  - but we make the best of that too.  When I get caught looking for a word I just start saying the words that come to mind - bagel, bicycle, big foot - till I get to the word I want.  It makes for amusing conversation and usually the listener is quite helpful finding the word.  All in all I'm feeling really good (and we can now tell what was Chiari related as opposed to my immune system damage from another problem).  The Chiari for the most part is not an issue as long as I get adequate rest and avoid stress.
     The absolutely wonderful news is I DON'T GET HEADACHES ANYMORE!!!   I've had a few migraines get started but was able to get rid of them with an aspirin (and sometimes I add one feverfew [herbal remedy for headaches]).  NO
MORE LOSING A DAY IN BED TO DRUGS!!!  I have also found that an ice pack to the back of my skull (right side where the surgery was done) works instant wonders for the beginning of headaches.  For the most part I don't consider myself a migraine sufferer anymore and am certainly thrilled to be rid of the narcotics.
     So all in all - I consider myself a Chiari success!!!  The surgery - while intimidating - was certainly worth the results!!!  I hope to continue to improve and will let you know any other major updates. For now I feel like a normal (if I ever was ;p) person.  It's a new feeling for me - long ago I used to feel this good and can remember feeling even better so I hope to continue to improve.   Beth Bania BBania@aol.com

 

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