Chiari Malformation - Online Support Group
We are patients and survivors of Chiari (types I-IV), here for your support.
PLEASE HELP...NS says I'm cured, 2nd NS says not Chiari even W/Decompression 09/22/10
09/15/2010 I was diagnosed with a 10 mm herniation and was told by the NS that saw me "you are a sneeze or a cough away from a coma". I went into surgery exactly a week later and had Decompression with a c1 laminectomy. I have been miserable ever since!!!! Wednesday, I went to see a NS at the Univ. of Minnesota, NeuroSurgery Department, supposedly a specialist in Chiari, who now tells me that he doubts that any of my issues ever had anything to do with Chiari and that I need to go back to the drawing board to figure out my diagnosis, but it isn't neurological. What the hell??? I've been going through this excruciating pain for so many years because why?? I also had anterior/posterior lumbar fusion done on June 28, 2010 after battling excruciating nonstop back pain for 6 months. I had to bring my older sister in with me to help me convince my Orthopedic back surgeon to do that surgery, then two months later I get rushed into having the Chiari surgery done and I was thinking this was going to be the answer to a lot of things I had suffered from migraines since I was a teenager. But I was not one of the lucky ones, in fact I would say I am pretty unlucky, a week after the back surgery I was fired from my job, and trying to recuperate from surgery is not conducive to finding a job. I was finally able to get Social Security Disability but that took way over 12 months. Meanwhile, my health has steadily declined since the surgery. I think my high point was about 2-3 months after the surgery and then it's been down hill since then. As of today, I have a constant pressure headache it feels like I have a baseball cap on my head that has been tightened super tight and if you take it off you will pull the top of my scalp with it. I have numbness in my right fingertips and it affects my entire right arm and a lot of the time my leg also. For the past month and 1/2 my knees have been swollen, especially the left knee, I brought this up to my pain clinic doctor last month and he decided to treat me with ice packs and some exercise. needless to say, I finally broke down to day and called and scheduled and appointment to get an injection in the knee because I just cannot take the fire in the knees, I feel like I'm going to throw up every time I step down and it has now moved to the right knee also. Well, after being told by the Chiari Specialist yesterday that there was nothing wrong with me. TODAY THE NURSE PRACTITIONER in my PCP's office decided to tell me, I may not have arthritis. in my knees - even though it was diagnosed when I was 16 when my parents took me to the doctor, and no, neither of my parents are alive for me to get them to write a note to the doctor....LOL So....no injection for the pain, no additional meds for the pain, I understand, I'm on some heavy meds, Not as heavy as a lot of people, but a lot more than some others. Now that I have ranted and raved on and on - Can someone PLEASE, PLEASE, POINT US IN THE RIGHT DIRECTION. WE DON'T KNOW WHERE ELSE TO LOOK. I'm worn out and ready to throw in the towel.
Replies to This Discussion
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Permalink Reply by keep faith on -
Hi loretta i read your story, and you are not alone. I will give you a full story of my journey
it is all of what you are experiencing and more. When i was 8 years old i was diagnosed with arnold
chiari malformation type one disorder. I was diagnosed from a severe head concussion due to a bicycle
crash. My headaches and pain are rough and so hard at times to tangle. Ive had brain surgery twice. On 8-5-03, i had a cranectimony, and a lamenictominy and fusion of my c1. Headaches were slightly improved . The surgery went well and was discharged the next morning. I went home and recovered in six to eight weeks. This was before my sophmore year in highschool. It was ok for 4 years and my symptoms returned 11-15-08. I went to see the neurologist and the doc refferred me back to neurosurgery. I was then seen at neuro, On 2-6-09 for pre op. Scheudled for surgery 2-10-09. been a tough journey for the last 18 years. We altogether will pull through this there is a story i want to tell you my Grandpa
told me years ago, its like you see someone with one leg and two arms . We can walk, see, yes we have severe pain, there will always be someone worse than what we are. I want to have contact with you over the phone someday. My cellphone number is 858 740 0441. And my house number is 858 2787082.
GOD BLESS YOU AND KEEP YOU AND YOUR FAMILY STRONG THROUGH THE
TOUGH TIMES. REMEMBER WERE BOTH GOING THROUGH THIS TOGETHER
AND IM HERE TO TALK IF YOU FEEL BAD.
KEEP THE FAITH IN JESUS. AMEN
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ModeratorPermalink Reply by lori on -
Oh....
How sad I am to read all you have been though. Your head must be spinning from all this information.
Have you ever heard of a "Physiastist"...I go to one....they basically deal with pain and rehab...see, I struggle with balance and limb weakness..I had surgery a little over 3 yrs ago.
IMHO..it is worth a shot....these types of doc can order any tests, order rehab(PT,OT) and meds.
You are in my thoughts and prayers,
Peace,
Lori
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ModeratorPermalink Reply by Abby on -
Loretta,
It is so frustrating and we suffer at the hands of our doctors who are there to take care of us. I am so sorry that you are still suffering after your surgery. Sounds like you might need to see some different doctors and get some other opinions. You might have some other issues involved besides Chiari. I know I blamed so much on Chiari, and after being diagnosed in with Dysautonomia other names (POTS, Postural Orthostatic Tachycardia Syndrome) Autonomic failure, and several other names, but the point is, that I was suffering Chiari and Dysautonomia or POTS, which has a lot of the same symptoms as Chiari.
I am praying that you find your answers and please keep trying to get them to listen to you, or get another set of doctors. A new perspective (doctor change) might be just what you may need to do. God Bless and keep us posted. Know we are here for you and praying for you.
Abby
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Permalink Reply by Lisa W on -
Loretta HI, I live in New Brighton So howdy neighbor--- I am sorry you are going through all of this and I too would be at whits end. Is it possible you have a pressure issue and maybe even cervical stenosis? I am not sure and I dont want to be throwing you straws but, Have you considered going else where for another opinion-even perhaps out of state- when i needed a NS chiari expert I went to Wisconsin to see Dr Heffez and he done my Decompression.
I had recently made contact with a Neurologist who really seemed to understand Chiari and Hydrocephalus(my other issue) and I was really quite impressed with his knowledge- however they fell by the wayside when they discovered that i just wanted to have a neurologist there for me to see and who understood my issues, I didnt want more drugs as I am in pain management now. They did try to understand the pain in neck and shoulder for the last 2+ years and tookan MRI of my shoulder and said tendonitis and suggested PT but what they failed to understand is that- PT is what caused the facial numbness-and Pain mgmt says NO WAY to PT! and honestly PT is what actually led me to pain management anyway since it didnt help.
Sorry I didnt mean to get long winded. I hope you are able to find some answers soon best wishes
Lisa
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ModeratorPermalink Reply by Carla Jo Stone on -
Loretta,
I agree with some that you may need to find a whole new set of doctors and start over! I think we have all gotten the run around at one time or another because there simply is not enough awareness or education about Chiari and related disorders, even in the medical field. It is important to find someone that will at least listen to you. We are all here to validate your feelings and we understand what you have been thru and what is happening right now. Hang in there and dismiss those that make you feel worse or bring you down. It's not worth it!
Carla
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Permalink Reply by Loretta on -
So after the major ordeals last week, I tried to be positive this weekend and spent some time with my oldest sister overnight Friday night and all day Saturday to bake Christmas Cookies and some other traditional Croation sweets. I of course over did it and was absolutely exhausted and slept pretty much all day Sunday including during the football game, which wasn't much to miss! I was once a season ticket holder for the Minnesota Vikings, I gave my tickets up when my son went off to college and all of "this" pain started, I was actually very upset about giving those tickets up until this year and now I'm sleeping through the games. Next year, there is always next year!!! Now on to our issues, I went to my Ortho appointment on Monday for my knee pain. Guess What??? Golly Jee....Imagine That.....I have arthritis in my knees!!! After X-rays, he said the right knee is actually looking pretty good, which sounds right, but the left knee on the other hand, is damaged severely and he gave me cortisone shot. He sent me for an MRI of the left knee today to make the decision of either Arthroscopic surgery if possible or knee replacement. I'm hoping for just Arthroscopic. I swear I could really use a break from all of this. Thank you everyone for all of your support.
I appreciate it. Loretta
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Permalink Reply by Loretta on
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I hope everyone had a fantastic Christmas and a Happy New Year! It was wonderful to see all my children even if it wasn't all at one time. My knee is feeling much better after the cortisone injection thank goodness, still not 100% of course, but at least I was able to walk around and not cry every three steps over the Holidays. I go back to the Ortho on Monday, the 9th to get the results of the MRI. Saw my Pain Management Doc yesterday, I am so lucky to have at least one Doctor that understands how I feel and actually makes sure to get a copy of all of the test that get run on me and reviews every single one of them. He thinks I should try to follow up with the Chiari Center in Wisconsin. I forwarded info there last fall, and I have a feeling it got lost in the mail because I never heard from them. Has anybody dealt with them? I have copies of all of my MRI's at least so I can resend them, thank goodness. Let me know your thoughts. Thanks for your input and thoughts.....:)
Loretta
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Permalink Reply by kstacy on -
Dr Heffez is awesome.My daughter has had one surgery with him and is possibly looking at having another one.
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Permalink Reply by razzle51 on -
Dr . Ralph Reeder in Dakota Dunes SD . Is fantastic . He did my surgery and I would reccommend him Highly...
he was trained by the top Dog Dr. Menenez in Iowa city
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Permalink Reply by Robert Criner on
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Dr. Harold Rekate in Great Neck NY. He did my surgery and saved my life! Not only a fantastic doctor but a really good person. Very personable, kinda old country doc.
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ModeratorPermalink Reply by lori on -
ROBERT!!!
So happy you are doing so well..don't be a stranger!!!
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Permalink Reply by Robert Criner on
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I remember my first visit to my NS. I was excited and scared (ya'll remember) not knowing what to expect. When I asked him what I should expect from the surgery he said simply "nothing" but let's hope for the best. I was floored, then he explained how most diagnosis of problems with the brain are done. The doctor listens to you, runs some tests and orders some imaging and in a nut shell looks at the part of the brain that could be causing problems. Because a lot of the time we can't see a broken part it's hard to point to the exact problem. So with this you get misdiagnosis and also procedures that don't turn out the way we expect. Luckily (oxymoron), we (Chiari's) have a little better shot at a good diagnosis because we do have a part that's visibly not quite right. But just that, a little better shot. My doctor has done over 500 procedures for Chiari in his 30+ career and many other type of surgeries (and spends six months out of the year doing cranial facial repair on children in central and south America for free) and each case was different for him and the patient. Most with good results, some with great results and some that didn't turn out as well as he and the patient had hoped for. What he explained to me was because so much of the brain is an unknown that I should weigh my quality of life now and think real hard if this was something that I would risk to hopefully get better. I did, and I decided that I couldn't live like that anymore and that I wanted to run, not stumble after my grandkids. I had to try right?
I have learned that with everything there is give and take. I was able to eliminate or considerably lessen a lot of the effects of my Chiari but it came with a price. Relationships, work and my personal life all took a toll. But I wouldn't change a thing. This problem is our unique problem and unless you live it you don't understand it so no one can tell you when you're right and when you're hurting. You know better than anyone, the challenge is to find that one person (or support group) that believes in you and will walk unconditionally with you. Although the surgery was a success I believe sites like this, people like ya'll, are a huge part of the recovery, the journey and the solution. I'm not on much anymore because of a lot of personal stuff but this is my escape or rather my oasis where I can be with people who know and understand. I love you guys and because of you I'm able to tap a little energy from time to time to keep me going.
And I am going, can't stop me!
Loretta, I sent my images and info to Wisconsin as well and never received a reply. I finally was able to talk with a nurse who recommended my NS. I'm glad she did. While I've heard good things about the Chiari center in Wisconsin I was kind of bummed they didn't respond. I also had heard a lot of things, some good and some bad, about the the Chiari center in NY. They do a lot of procedures for this but it's only a small part of what the doctors do all the time. I was amazed when talking to other patients there after their surgeries. So much hope, so much caring, it was really moving. (imagine a floor full of zipperheads!) Maybe because of the state I was in or maybe I tend to look at the brighter side of things but one thing was for sure they make a difference. (and just to be sure, I asked my doctor for a list of his patients that I could talk to about their experience with him. I was impressed when he directed me to his nurse for any information or names that I would like. I think what got me the most was the look on his face when he came in and found me laughing and sitting cross legged in my bed in post op. He actually teared up and that caused me to lose it. This big ole 6'4'' mountain of a man cared.
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