I don’t believe my diagnosis.....

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I am a 51 yr old woman. I went to a new neurologist  because I was having blurry vision, dizziness and bad headaches/migraines daily. Back up in the years prior,  I was diagnosed as a teen, passing out as a football cheerleader,  with thoracic outlet syndrome. My mother and I decided it wasn’t severe enough to have removed. My right arm has been numb my entire life. So I end up having 4 children in 6 yrs and becoming a stay at home mom for 17 yrs, had neck issues always.... I go back to work, I start having more issues and in 06 I had thoracic outlet surgery, BIG MISTAKE! So I learn to live with horrible nerve damage in my right side of my neck, shoulder, arm pit, just a joke. Then I start having more neck pain, lots of stiff necks, in the middle of this my friend from my younger yrs, her daughter was diagnosed and operated on with chiari, she swore to me I had this issue, I asked my drs they said no. I ended up having c7 herniate completely, had surgery. Then 2 yrs later I’m being told I need c5/6 operated on, they gave me a window of 6 mos. so I planned it out that I could maximize my income, I sold cars, straight commission., and I had a grandchild due that feb, so I scheduled my c 5/6 surgery for oct 2011. Well in May of 2011 my back starts killing me, long story short, I end up falling with no warnings at all, sciatic nerve fully involved, I need surgery, I pushed it off as long as I could but, I then needed to do both surgeries because my short term dis. was only 1  time in 18 mos. So, I schedule my back surgery for  oct 2011, my neurosurgeon said if you follow all my rules,  I will do your neck in Nov, so of course I get it done as well. Well the neck surgery went ok and the back didn’t, then I was told I had a paralyzed vocal cord. My ent wouldn’t operate on it until 6 mos was up because insurance companies say most heal on their own,  well guess what?  mine didn’t so in  may of 2012 I had an implant put in it. I’m disabled now, I live in chronic pain, I am numb from my head to my toes 24/7. I choke all the time, my voice is manly, I hate everyday, I have been battling Hashismotos, hypothyroidism,  for 4 yrs, fired 4 endos, I finally found a dr that has a brain about the thyroid, I have no thyroid function, meds irritate my nerve damage, I can’t take meds for the nerve damage either, they agitate it as well. I then go to this new neurologist, that ordered my brain mri, to pick up my results,  and It says that my pituitary gland is flatted in the sella with fluid filled halfway in it, ( my thyroid dr insisted I retrieve my mri results) especially since my pituitary gland wasn’t functioning either..... then the conclusion of my brain mri said that I have a 4-5 cerebellar tonsillar herniation constistant with a mild chiari type 1 malformation??? Seriously after a box full of MRIs and CT’s and X-rays over the past 12 plus years, and no one has ever mentioned this before,??  I asked again since I had some family members (children) were diagnosed in the passed few yrs. and operated on for this issue, they said no again. So I guess what I’m scared to death about is can I really have this disease since I have so many of the signs and  every day I get another. BUT how is something like this  missed ?? Really?  and I’m praying I don’t have it. I already am disabled, my life has changed so much in the past 12 yrs, and I truly swore if I ever needed another surgery, I would have to be sedated at home to have to be operated on again. This new, soon to be fired neurologist,  never even brought up either issue on my report of the brain mri, he didn’t feel the need, but he also didn’t know that I had picked up the report already.  So luckily I have this thyroid dr. that cares enough about me. Maybe she can find me a neurosurgeon that has a specialty in chiari to tell me yes or no. I truly don’t know that my current neurologist,  that did my last 2 surgeries, that I have asked 2 times if I could have it and he said no 2 times....how do I supposedly have it now?? I am so confused. I know that I  have radiculapathy in my entire body per a genius neurologist that did both my upper and lower body EMG’s approx 4 years ago and of course he went back to his home country. So... After choking again on my dinner, while I’m trying to explain this situation, and I just keep telling myself that I don’t have this issue, the CHIARI, but yet while writing this with my blurry vision I keep thinking what is going on with me. ? Help..... I’m driving myself crazy....thank you... I’m scared.

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  • Posted

    Sounds like you have been through so much! 4-5mm can be classified as chiari. I have chiari ( diagnosed this year) . I have horrible symptoms! 24/7 dizziness, vertigo, head pressure, eye pressure, blurriness, trouble focusing, back pain neck pain, weak limbs. My herniation is at 9mm. My choking is not constant but comes out of nowhere and I can even choke on plain water. There is really no fix for chiari except surgery. Some come out great and some have the same symptoms or worse. Right now my neuro surgeon says the risks of surgery outway the benefits. So many doctors are not knowledgeable in chiari. It is best to see a Chiari specialist. You sound like you are very complex with all of the surgeries you have been through. I know the decompression surgery is a rough one. I believe they even remove some of your cervical bone from C-1 . It should be done only as a last resort if your symptoms can not be managed and your quality of life is affecting. I live in misery everyday . Mostly just stay in my chair. I am 38 years old. Did you know chiari can be aquired? Most docs will say you are born with it And most are but it can be caused by something else. One thing that would cause a Chiari is a spinal fluid leak. Have you researched leaks? Do you feel worse when upright? If so I would really look into csf leaks. Being as you have had so many spinal surgeries it’s worth a look. I believe I read somewhere that a flattened pituitary gland is one sign of a leak. Low lying tonsils is another sign. It’s worth a shot and leaks can be fixed. I would rather fix a leak than try to fix a Chiari. Good luck to you . Hope you find relief.
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    • Posted

      Yes I am most pleasant in a recliner, to get the weight of this head off my sore, nerve damaged shoulders and knots all in my shoulder blades. The pituitary issue did refer to something I looked it up and I believe it had a name of empty, or half filled empty Bella syndrone. From what I have been told I will not find a dr in my driving range, but there may be one that someone else could drive me?? So, I guess my next job is finding a dr. I can’t do the let’s go to 10 docs to find one I feel comfortable with, my body isn’t up to that. When I was first having my surgeries, I was doing all the checking and compairing, but not now, I can’t do it myself. Thank you so much, I wish you good luck as well. Ty for caring enough to message me. 
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  • Posted

    Hi there,..

    I fully understand how scary you are I am sure others feel the same they just not brave enough to admit it, at least you can do is..listen to your body..try to live in a healthty life style do not take go to the gym ..but you need to walk slowly each day or doing low impact exercise or Yoga, tai chi is very good donot lift anything more then 2 kgs...can you go back to your neuro surgeon or can you ask your primary doctor to refer you for a 2nd opinion..I think I am the lucky one  to have a successful surgery - but I completely resigned from my £84K pa job..and start my own now doing full body massage and reflexology because that is the only way at that time after decompressed that these treatment have helped me walk and be normal again, but now and then my back is just killing me..but I am completely drug free.... Please also Pray..no matter what your faith is..just ask your creator to intervene... a part from that there is nothing you can do just accept it your condition perhaps ask your speciliast to give you another lumber puncture that normally help the pressure or even steroid injection for your back just once a year (NOT TOO MANY ) Let us know how are you getting on

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    • Posted

      Thank you for messaging me. I’m already on meds, I’m lucky to walk to the entrance of my neighborhood w/o needing a ride home. I did talk to a friend that has a yoga studio, but because of all of my botched surgeries,  I call myself a professional patient. So everytime she has a class that she said I can attend, I have a dr appt., now we are getting a storm getting ready to hit us. So I am going to attempt to start yoga. 6 yrs ago I was working a good 60 hr work week in heels and dresses, now to be lucky that I still bathe and get dressed. I make myself do it daily, scared to give into my feeling of hopelessness. My 2 docs you referred to have both denied to me at 2 different times that I could possibly have this condition, so do I go to them again? I just am overwhelmed with this diagnosis and wonder could it be wrong or can it be acquired as an adult? Ty for messaging me, it’s greatly appreciated because I have no one to really talk with that understands half of what I already have been through let alone this new diagnosis. Guess I will get my hero thyroid dr to maybe help me. Thank you!! 
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  • Posted

    Wow, unfortunately MOST Dr's or neurologist know nothing about chiari. The subject is barely mentioned in med school.

    I was born 1972, two weeks early, third child, Mom and i both almost died. I had an exchange transfusion, jaundice, weighed 4.6 lbs. Anxiety, depression and impulse issues all my life. Kegal muscle never fully developed and my urethra is 1/3 the normal length so i peed the bed until age 14 When a Dr finally figured out the problem and taught me kegal exercise. By age 35 The exercises no longer helped. Bad teeth all my life, dentures since age 30. Stomach ulcers by age 14, now gerd and has caused pre cancerous Barrett esophagus. Strep throat every year growing up. All of that was manageable until my gall bladder was removed at age 27 (causing IBS). Then it all went downhill. Getting extremely bad headaches, passing out, issues with walking, needing a cane or walker and sometimes couldn't walk at all, thinking, memory, was going paralyzed and much more. Dr's decided i was just mental and treated me as so. I kept getting worse and went from Dr to Dr. Left side of my face went paralyzed so finally an MRI was done in case of stroke. Results...not mental..per say lol. Had brain surgery twice at age 30. Disabled since with lots of nerve damage.

    Hope you are doing better.

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    • Posted

      Wow, yeah you have had it rough as well. I was born feet 1st naturally, per my mom that woke up in a bed of blood. I truly don’t believe I was born with this since I wrote this not I have got a lot of info, pain dr finally referred me to a dr they requested another mri, neck/c-spine, and it too said I have Chiari as well. I’m going to call the dr today and see if they will see me, if not, I will be calling my previous neurosurgeon, and even though he’s not s chiari specialist, I’m hoping he has a few for me then I will see if any of them are on Selma’s list before I try to get in. I have got a bit farther in this diagnosis, and I assume it’s acurate since 2 mris since February have both have said it and my side effects are getting bad. My eye dr told me my eyes were literally trying to cross so he wrote me a new glasses rx with prism in them for the blurry vision, not allowed to wear contacts until he has me “ figured out”

      But man it’s nice to have a few drs that truly care cause I’m am NOT used to that. I know now, that my diagnosis is probably accurate, I know that every day I have less energy, more pain, this noise in my head.... Selma recommended me to get a noise machine like my granddaughters have, so I’m not dwelling on this noise. The IBS, the same happened to my mom after her gallbladder surgery, I’m the complete opposite of IBS, I have if I go 1 time a week I’m lucky, but my thyroid dr is working on me trying to clean my tummy out correctly. So what are your plans and what are you going to do with your diagnosis, ?? I’m going to call drs today trying to get a few neurosurgeon appts, and I need to get some energy to get my yard cleaned up s bit, but now all my flowers are done, this year nothing so far. Thank you for messaging me. I wish you the best, ty!!

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    • Posted

      It may be difficult to find a chiari specialist, there are very few out there. I wasn't lucky enough to be able to see a specialist but did get lucky and find a neurosurgeon that knew what he was doing. My decompression was in 2002 and he is now the head of the neurological and neuroscience department at Oregon Health and Science University

      (OHSU). As for the delayed emptying of your stomach(Gastroparesis)...talk to your doctor about. It is one of the comorbidities possible with chiari. Unlike when I was diagnosed, there is a lot of information on chiari online and many Facebook groups as well. I hope you get the help you need hun. Have a good day!

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    • Posted

      Well since I wrote you last I got an appt with a neurosurgeon that I know has  successful chiari surgery patients, but I will have to see what he says about me and then I will see how many he has done and how often as well as the success rate. My vision after new glass with prism still not very great, have been back and now on steroids for my eye drops. I also got into my neurosurgeon that did my last neck and back surgery, he doesn’t treat chiari but I’m certain he has to know of someone. I’m going down hill faster than expected, very scared. I’m not truly wanting to start this dr adventure again. But I need some quality of life. Hoping I have some answers by the end of July? Ty I hope you are doing ok.!! 
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    • Posted

      Well I went to the neurosurgeon, what a waiste of time, he barely made eye contact and told me my 4mm herniation was not chiari. I ? Him about my empty sella syndrome he just ignored me. Told me all my side effects and things I’m dealing with are more hormonal than anything. It took me 7  hrs to fill out the packet they sent me and I swear it was never read or looked at. He was not aware of my previously surgeries..... what a waist of my time ... I am so sad!! 
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