From: Suet <frankienfriends@...>
Subject: Re: [ptc] Re: Obituary for a Wonderful Person
To: ptc@yahoogroups.com
Date: Sunday, July 5, 2009, 8:06 PM

HI,  My symptoms are many.  Recently diagnosed with arthritis head to toe fibromyalgia. hoshimotos hypothyroidism have been told I have an overactive adreline gland chiro told me that my brain stem too close to cervical whatever.  I have swelling now in right hand and a little in left right foot a little in left.  ABdominal swelling coloitis I get headches numbness and pins and needles in extremities.  Ihave had vertigo slurred speech rapid heartbeeat I am on a sleep apnea machine at night because of apnea trouble sleeping at night bones seem to shift I have degenerative disk stenosis scoleosis spondilosis  been told I have asthma and respiratory problems.  Many symptoms come and go.  Pain is getting unbearable at night.  Was told I had ptc.  Then that later was revoked because tap came out ok.  I also have tendonitis in shoulder and bursitis in elbows and a left knee that click and probably needs operation also I have a weight problem and just cannot lose no matter what I do.   So there it is I hope I didnt leave out anything but it looks pretty complet wait carpal tunnel syndrom too.   So sorry to here about the death of your friend she is in my prayers.  God Bless Sue New York Colorado nothing in betweeen I am in NW INdiana. --- On Sun, 7/5/09, Julie Pence <juleni@hotmail. com> wrote: From: Julie Pence <juleni@hotmail. com> Subject: [ptc] Re: Obituary for a Wonderful Person To: ptc@yahoogroups. com Date: Sunday, July 5, 2009, 1:57 PM Dear Sue, I am sorry I did not see your post sooner; it has been a hard few days. Would you be able to go to New York, for a two-day trip, to see a doctor at The Chiari Institute? I ask this, because this is where I had to go for diagnosis after several doctors in my locality misdiagnosed me first. Also, there is a wonderful doctor, Dr. Oro in Colorado. There is also a new Chiari Institute, somewhere between New York and Colorado now, I think. It is important to try to go to a place where you can be seen. There is some cost involved, but there are sometimes avenues to help with the cost. Can you email me at juleni at wowway.com, and let me know more about your location and symptoms? Julie --- In ptc@yahoogroups. com, "frankienfriends" <frankienfriends@ ...> wrote: > > I have every symptom listed for the chairi now what? God Bless YOU SUE > --- In ptc@yahoogroups. com, "frankienfriends" <frankienfriends@ > > wrote: > > > > --- In ptc@yahoogroups. com, "Julie Pence" juleni@ wrote: > > > > > > Our niece Rebecca, who was 34 died this week and we attended her > funeral today. I did not know her well, as I have married into the > family she is from: she is not my niece by blood. She was a lovely > person from my few meetings with her. > > > > > > I asked today, her husband's stepmother, what caused her death. > Previous answers to this question from my husband and others in her > family were very vague. > > > > > > Her husband's stepmother said "it was something to do with her spine > and neck and head. She found out she had it when she saw a TV show > about it and recognized many of the symptoms". > > > > > > This startled me, and I asked 'was it Chiari?? If it was, that is > what I have." > > > > > > The stepmom, wasn't sure, but her eyes widened. She said 'wait > here', and went to get Rebecca's husband's dad, Jesse. Jesse told me > yes, that was what it was called. Jesse and his wife told me that > Rebecca had been to many doctors, even neurologists and no one could > identify her condition. Doctors and friends were beginning to believe > she was a hypochondriac. > > > > > > Then, she saw a show on the Discovery Channel, and had 16 of the 18 > symptoms listed there. She ended up calling 'someplace in New York'. > > > > > > "The Chiari Institute?", I asked. > > > > > > Yes, they told me, that was it and she went there. This spring. > > > > > > Then Jesse and his wife got Rebecca's husband's real mom to come > talk to me. She knew more of the facts. Her name is Cheryl. > > > > > > Cheryl was surprised that I have Chiari; surprised I knew so much; > surprised I had been to The Chiari Institute, too. > > > > > > You might imagine the emotions that were churning within me at this > point. And the questions. > > > > > > Cheryl told me "there is a surgery for it, but they told her in > Cleveland that it is too dangerous to do it". Cleveland, I inquired? > Yes, Cheryl said "she went to the Cleveland Clinic, and that is the > first place they identified it - before she went to New York". > > > > > > I was aghast, but right there, in the church, at the funeral with > Rebecca's body only feet from us, I could not tell them.... how needless > her death.... > > > > > > What happened, I inquired? > > > > > > Cheryl told me that everything was being affected by the Chiari: > pains and Rebecca's breathing; her ability to get around. > > > > > > I knew that, of course. > > > > > > "Her digestive tract was beginning to shut down". That was a new > one to me. > > > > > > "Her pituitary gland was no longer functioning, and her adrenal > glands were shutting down." > > > > > > I know, I told her - I have those things happening. The pituitary > sometimes gets squashed by the buildup of spinal fluid in the brain, > leading to empty sella syndrome. And it affects of course, the thyroid, > the adrenals, etc. > > > > > > **But I knew these things can be addressed!!! *** > > > > > > "They think she had a seizure. We can't be sure. She was alone > when she passed away. The coroner is looking into it." > > > > > > I want to state here briefly, that Rebecca was a Christian and so am > I. I thank God, that I know she was not entirely alone in that moment. > I know that God was with her. I am soooo grateful for that. > > > > > > > > > It is incredibly hard for me to think.... Rebecca did not have to > die. > > > > > > > > > I struggled a bit with 'why didn't I know? I could have helped her > a lot sooner...' but that is the past, and we cannot go back there. My > heart is wrenched with the knowlege that here I was, in her extended > family, with the knowledge to give to her, but because of the denial, > the shame or whatever it is, her condition was kept quiet. My husband, > and I, never knew she had this situation. Last year - I could have > directed her to The Chiari Institute - much sooner! I was diagnosed at > TCI in December 2007... plenty of time to save Rebecca... but I must > remember that I am not in control of what I cannot have control over. > And I cannot go back in time. And I know she is now at peace. > > > > > > Rebecca was a lovely woman in her early 30's who was feisty, sweet > and tender with her children. She loved her family and was a devoted > wife and mother. She was talented, artistically, and was a beautiful > person to be with. She leaves behind a sweet man, her husband, and 4 > beautiful little children, who will miss her terribly. > > > > > > When the time is right, I will try to communicate - that there is > help. The operation is worth it. And you don't have to die - BECAUSE > of the children. Her children must not suffer what she had to suffer, > if they are ever diagnosed with Chiari. > > > > > > Please pray for and think of the husband, and children of Rebecca, > my niece, who is finally free from pain. > > > > > What are the symptoms of chairi? They thought I had ptc am suffering > tememdously so many diagnoses. It would help to know the symptoms. > > Thank you God Bless You Sue > > >