Can't believe how good I feel...

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Can't believe how good I feel...

Postby sisterbabyhead » Thu Jul 30, 2009 3:14 am

There is a small part of me that feels guilty for being this happy...a larger part of me understands that it is nice to hear that people can survive this disease, or at least make the quality of life much better than imagined. There have been many times over the years that the headaches and nausea have brought me to my knees. The past four years have been a nitemare to say the least. In the Summer of 2005 a strange headache struck. This one was different because with the pain, nausea & vomiting there was something new...a pain shooting down one arm. The realization that no job or money is worth having a stroke or dying over...well, I told my boss I was going to the ER and left. That day changed my life!! The doctor that saw me told me that I had Chiari and that it could be serious, not to let it go. That day they had done CT and MRI scans of the brain and skull, so there was more to it than initially thought. The first neurologist to see me was oblivious to what may be going on. While she began to write multiple prescriptions for pain and nausea, I had been telling her of the pressure I had been feeling for years! She paused for a moment and glanced at me as if there were something she wanted to say - what she really wanted was for me to shut up...again I began to tell her of this feeling of pressure in my neck..."when I turn to the side it pops and feels like it relieves the feeling"..she paused and casually stated, "don't do it". "Well", I began to tell her, "this is easier said than done", "sometimes I don't even have to turn too far or try and it pops"...she had stopped listening after the first pause..after years of seeing doctors ignore me, this was no new bedside manner. Thankful to have a diagnosis, even if it was halfway - it was halfway closer to finding answers and relieving my suffering. I too began to dismiss what she was saying - she hadn't told me "why" I shouldn't do it? I sat quietly thinking to myself that if it were life threatening surely she would have told me if it would cripple me or worse if I didn't stop...telling myself to thank her for her time and find a different Neurologist, possibly one with a different answer. The doctor had begun writing her notes and her dictation while moving toward the door...as I turned to shake her hand she was shocked to hear the "pop" that came from my neck...she gasped, her eyes bulging out and asked me to come back in for a minute, "there is another MRI I am going to need for you to do", "though I am sure you don't have it" (doctors should never say this to anyone) "there is a very rare disease and must be ruled out". The story that follows is probably like most for the next 3+ yrs an uphill battle the whole way from the insurance companies to the nursing staff...if you've got CM/SM you know how it is. The first treatment was decompression in Sep of 2005, a month to the day I was back in the ER...what looked to be a small orange in the back of my neck was a result of a tear in the subarachnoid tissue, allowing an 1100cc CSF leak to the mid-brain, that was the second craniotomy in less than 35 days..after that there were a couple different failed shunt problems, more than a few close calls and problems with meds...it was all too much to bear & I began to pray for relief. Then, it was apparent if I wanted to get relief I needed to find it, not wait for it to find me...after several months and just as many LP's there had to be a better way..afterall draining 20cc of CSF at least once a month can't be good?? Then, it struck me...the doctors see me once a month and each time they recognize me, just don't notice any difference...I am not the only patient they see, and if I want them to see what I am talking about I would have to show them. The next LP (spinal tap) was scheduled and the day before I took my first self portrait, taking another just minutes after the tap, then again on a daily basis...the next time I went to see them I brought the pictures and was able to show the drastic changes in my face and eyes...becoming nearly blind in my right eye as of Dec 2008. The doctor finally talked the surgeon into discussing the possibility of doing a shunt...I knew in my heart this was the only way to relieve the pressure. The fluid had begun to find other ways out when it began to build. The feeling of water coming out of my ears was something I had been complaining about for years...always told that it was impossible, or it was water from a shower...then, the Neurologist told me something interesting, "The only way for the fluid to come out of your ears and/or nose would be if you had suffered a skull fracture in the past"...my face lit up, as a matter of fact there were a few skull fractures when I was growing up...this would explain the excessive use of tissue and the feeling of fluid coming out of my ears every morning upon sitting up. Then, as if I were sleeping for the past several years...I came out of the shunt surgery with flying colors - so well, when I awoke my memories that seemed to be all but lost had been restored, the feeling of being on the bottom of a swimming pool was gone too, then without any warning or idea it could be possible, the memory of when the last time it felt so good to be alive was there...it was when I was 9 yrs old! The feeling was so good I had to question if it was a possible effect of the meds??? This feeling has blossomed over the past 14wks, each day I wake up with more energy and an incredible urge to live...not just exist, to really live. The past several weeks I have been able to start a regular exercise schedule as well as finding ways to volunteer and pay it forward as much as possible. The fact is that if someone were to tell me that this kind of recovery could be possible it would have helped me to make the decision to fight a little sooner...when I was diagnosed and during some of the treatment I was told many false facts.."doesn't matter what you eat, the outcome is still the same", "you will never be able to stop using the Fentanyl patch" & "it shouldn't be too painful"...I can chuckle as I write them, knowing the truth. There is someone or something in everyday that makes me thankful to be alive. The fact that this disease is so horrible and so limited in the "hope" department can make it a hard cross to bear. The fact that I have been able to sit in front of a screen and see what I am writing as well as almost perfect vision in an eye that was all but blind on Dec. 21st of 2008...this is just a miracle to some, to me it is hope. This kind of hope can only be achieved with the help of Faith...I am not preaching and truly believe that you don't need to be religious to be spiritual...I have found my way to battle this disease and want so desperately to share my triumph with any and every person that will listen.
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Re: Can't believe how good I feel...

Postby wendi » Fri Jul 31, 2009 10:05 am

Thank you for sharing your story. It is always wonderful to hear the good ones. People need to know there is hope.

A little bit of advice for future posts. There are people who have hard time reading these, so please break them up into smaller paragraphs. It makes it easier to read.

Thanks again for sharing. Stick around to help and pay it forward.

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Can't believe how good I feel...

Postby youngwife » Fri Jul 31, 2009 7:01 pm

Thanks for sharing your success with us! It is great to know that there are good stories out there. :) I pray that you continue to do so well.
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Can't believe how good I feel...

Postby lynncarroll » Tue Sep 22, 2009 6:03 am

I am so glad to read that you feel so much better. To want to live and experience all that life offers instead of just exsisting is such a wonderful feeling. I do have a question too. My neck pops when I move it past a point where it feels restrictive. What is it and what effect does it have on my chiari? It almost feels better after the pop. However, waking up with headaches and neck stiffness and pain for many days in a row kind of over shadows the temporary relief of the pop. Please let me know.

Thanks,
lynncarroll
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