tag:blogger.com,1999:blog-1319689965013933413.comments2010-03-05T05:42:28.023-07:00yealcyealchttp://www.blogger.com/profile/08003123065191540056noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-1319689965013933413.post-71076207939355257052010-03-05T05:42:28.023-07:002010-03-05T05:42:28.023-07:00Thanks for your prayers and for sharing your journ...Thanks for your prayers and for sharing your journey. Good luck today! Praying this doc is a perfect fit! Hang in there!<br /><br />Tanya and FamilyTanyahttps://www.blogger.com/profile/05653807197898498364noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-36749283808807559762010-03-04T07:05:22.625-07:002010-03-04T07:05:22.625-07:00Tanya,
Thank you so much for the prayers and info...Tanya, <br />Thank you so much for the prayers and information. I will state the Sean is a strong silent type so I'm the one that looks for the information :)but I would appreciate an email with the information you offered (yealc@yahoo.com).<br /> <br />I asked Sean if he felt he had recovered from his surgery and he said yes. From my point of view it took about 14 months for him to fully recover. <br /><br />The doctor that performed Sean's surgery was Mark Bryniarski. Dr. Bryniarski has since left Colorado so we will be looking for another doctor to monitor the growth.<br /> <br />I will make sure we go to change.org and support that initiative. <br /><br />God bless,<br />Yvetteyealchttps://www.blogger.com/profile/08003123065191540056noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-65008992698091026662010-03-04T06:21:15.260-07:002010-03-04T06:21:15.260-07:00Yvette, it's hard to find words right now, aft...Yvette, it's hard to find words right now, after reading your post. Sean is very lucky to have you, and you are certainly an amazingly strong woman! <br /><br />Being on the "outside" of FD while loving the afflicted person with all your heart is a difficult place to be, isn't it. Yet, despite being thrust unwillingly into a world we never expected, we have found strength... in the Lord and within ourselves. <br /><br />My heart goes out to you, for as much as our stories differ, they are very much the same. The constant worry, the fear, the longing to remember what things were like before FD came into our lives...<br /><br />I pray God will hold us both in His grace, right along with Sean and Lauren... that He will guide us and help us along our way. And also, that we might find the small joys in life and love bigger than we ever thought possible!<br /><br />Hang in there and God bless you too! Our prayers are with you- Thanks for sharing.<br /><br />Tanya-Tanyahttps://www.blogger.com/profile/05653807197898498364noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-8323838123424958122010-03-04T05:25:12.195-07:002010-03-04T05:25:12.195-07:00Sean, You read my mind... I was just about to ema...Sean, You read my mind... I was just about to email you and ask about your story when you updated your blog. Thank you so much for sharing, and I'm so, so sorry for all you've endured. I know you must be so thankful to have found Yvette and to have such amazing support in her.<br /><br />Have you ever been in touch with support organizations like the FD Foundation or the MAGIC Foundation? I've found more support for Lauren and our family, and it's just been life changing for us! I remember how scared and alone we felt when we first learned about Lauren's disease, but after attending the MAGIC Foundation's Medical conference in Chicago, we felt embraced and strong...and certainly not so alone anymore. You might think about attending or at least getting some online support. <br /><br />Also, the FD Foundation has started an informal listing of experienced doctors who treat MAS and FD. Perhaps you can find a pain management specialist in your area that's listed with them.<br /><br />You might check with NORD and the NIH too??? If you ever want any information, I'll be happy to email you-<br /><br />Do you mind if I ask where and who did your craniofacial surgery? Do you feel you have fully recovered?<br /><br />I can't blame you for not wanting to have such an invasive CF surgery. It's scary for all of us! Lauren's sphenoid is terribly affected w/FD too and is slightly compressing her optic nerve, thank God, however, her vision is perfectly fine! I hope yours will stay fine too!<br /><br />My prayers remain steadfast for you and Yvette, especially with your appt. tomorrow! I so hope this doctor will be a perfect fit for you, with lots and lots of CFD experience! Please keep us updated! <br /><br />One last thing... Posted on my blog is a link to Change.org to vote to take Rare Diseases to Washington (the brainchild of Catherine Calhoun who heads up the MAS division of the MAGIC Foundation) and it includes FD. Please consider voting for this important effort and sharing with your family and friends. One thing I've found is that to sit back and do nothing is just unthinkable. We all must work together to raise awareness for research dollars to find treaments and cures!<br /><br />We'll be checking in on you- hang in there and God bless-<br /><br />Tanya and FamilyTanyahttps://www.blogger.com/profile/05653807197898498364noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-4357829430200891082010-03-03T17:28:26.444-07:002010-03-03T17:28:26.444-07:00Thank you so much for the support. Yes I am seekin...Thank you so much for the support. Yes I am seeking information from various different doctors and specialties. I will keep updating the blog with my adventures in pain management. <br />I was also surprised and upset that the doctor did not want to talk about my medical history. I am tired of being a guinea pig and so I will keep seeking an option that gives me a good quality of life.<br />PS. we pray for Lauren and your family every night.<br />Seanyealchttps://www.blogger.com/profile/08003123065191540056noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-90568595115684874212010-03-02T20:26:00.838-07:002010-03-02T20:26:00.838-07:00Hmmm... Sean I'm so sorry it didn't go bet...Hmmm... Sean I'm so sorry it didn't go better than it did. It sounds like it was pretty uncomfortable for you, and I can't blame you.<br /><br />I am a liitle surprised that the new doc has no interest in the medications you've taken in the past. It seems they'd be interested to know which meds you took, how long, reactions, pain relief levels, etc. <br /><br />Are you seeking the advice of yet another doc due to the unfortunate results at this clinic? My husband and I have had to do this too, when seeking help for Lauren. Sometimes I think you just have to trust your instincts. Of course that's easy to say "most of the time", but spoken with a certain amount of reserve when dealing with MAS/FD or FD... as both are so rare that finding experienced doctors is difficult and often requires travel.<br /><br />I'm looking forward to hearing more about your results. Try to hang in there and we'll pray you find the right doctor soon.<br /><br />Again...thanks so much for sharing! Take care-<br /><br />TanyaTanyahttps://www.blogger.com/profile/05653807197898498364noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-2711039880367772802010-03-02T20:11:07.326-07:002010-03-02T20:11:07.326-07:00Thanks Yvette and Sean for your honesty and insigh...Thanks Yvette and Sean for your honesty and insight.<br /><br />Let me just say that even being diagnosed as a child, there is still little to nothing that can be done to help my daughter. Obviously she's being monitored through CT scans, but nothing will be done unless symptoms arise: e.g., numbness, stroke-like symptoms, slurred speech, deformities, vision and/or hearing loss. At that time surgery might become an option. Luckily for her, she currently only has mild sporadic pain in her sinuses and skull base.<br /><br />I've been in touch w/doctors at the NIH and around the world about CFD and the popular belief among experts is that while orthopedic FD quiets after one is grown, that craniofacial FD continues to slowly progress throughout adulthood. Hence my questions about pain management. I've heard that CFD is much more difficult to control than ortho. FD, and that IV bisphosphonate infusions offer little relief. My concern is the amount of pain she might face in the future and I'm just trying to learn of other's experiences with different medications.<br /><br />I am happy to follow your blog and hope to learn more of your experience as time goes on. Thank you so very much for being willing to share such a private part of your life. To all of us with growing young children, the adult experience is important for us to learn about.<br /><br />We will certainly keep you in our prayers, and I am just so sorry that we had to "meet" this way. If it helps at all, you are not alone...<br /><br />Stay strong and God bless- We'll be checking in on you! Take care-<br /><br />Kind regards,<br /><br />TanyaTanyahttps://www.blogger.com/profile/05653807197898498364noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-9944268896740661182010-03-02T19:26:12.606-07:002010-03-02T19:26:12.606-07:00Tanya,
Yes the pain has been bad in my adult years...Tanya,<br />Yes the pain has been bad in my adult years but we trust that your daughters will never progress to my level. <br />It is a horrible thing and the only med I have found that has helped is Darvocet. It does not get rid of the pain but manages it for me but lets me function. <br />I just wrote a new entry on my latest pain management visit and I have another Friday. I will keep this blog updated.<br />Nothing has ever gotten rid of my pain. Things have helped but nothing has ever fully taken the pain away.<br />Sincerely,<br />Seanyealchttps://www.blogger.com/profile/08003123065191540056noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-24650891208179049752010-03-01T10:05:28.101-07:002010-03-01T10:05:28.101-07:00Thank you Maria,
I want to state that I have recei...Thank you Maria,<br />I want to state that I have received great health care. The reason I can not have surgery to remove the FD bone internally is that it has not remained porous. It has formed into true hard bone and is embedded in area's of my brain and optic nerve. This means that even going in to try to remove the bone would be extremely risky and is not a risk we are willing to undertake. The bone is against/in my frontal lobe and as this area of the brain affects so much I am not willing to lose brain tissue in this area.<br />Take care and God Bless<br />Seanyealchttps://www.blogger.com/profile/08003123065191540056noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-8946823447063023952010-03-01T09:14:49.263-07:002010-03-01T09:14:49.263-07:00Hi Sean,
I'm sorry to hear you're in so m...Hi Sean,<br /><br />I'm sorry to hear you're in so much pain. I haven't had any pain although I have fd of the sinuses, skull, jaw, etc. In 2000 at the age of 34 I had a craniotomy and decompression of the optic nerve - they also removed fd bone from the skull, sinuses and moved my eye and socket over since I was being disfigured by the fd. To date, it hasn't grown back. I'm surprised there are no doctors willing to operate on you. Our healthcare system is so bad and it scares me to think what will happen to those of us with rare diseases in the future. I will keep you in my prayers! MarieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-91817483421260700362010-02-28T19:06:56.297-07:002010-02-28T19:06:56.297-07:00Tanya,
This is Sean's wife Yvette. Sean is hav...Tanya,<br />This is Sean's wife Yvette. Sean is having a bad day with his fibrous dysplsia and is not able to write but will respond later. <br /><br />As his wife I can tell you that as an adult Sean's pain is usually at 8 on a 10 point scale and has gotten worse as he has aged. This is for two reasons: 1. he was not diagnosed as a child so it was not discovered when the most help could be given. 2. His bone is still growing which I'm sure you know is rare as the growth usually stops with puberty. I trust that your daughter will not have continued growth. <br /><br />As for pain meds: Sean has very dramatic reactions to many drugs/therapys as they cause him to become aggressive. For this reason the main drug he uses is Darvocet. While low use of pain meds don't remove all the pain it does allow him to be function enough to have some quality of life while not being so angry that the family suffers. <br /><br />Sean has had surgery in the past two years but it was too late for them to do much about the bone putting pressure on the brain. That surgery would have needed to be done before the bone was surrounding the optic nerve. Sean's vision has not yet been impaired by FD although he did have lazy eye as a child and has independent vision.<br /><br />When Sean is feeling better I will have him place his comments about the experience here for you to view. <br /><br />We will keep your family in our prayers and if you would like to contact Sean directly please feel free to email him at yealc@yahoo.com. God Bless!yealchttps://www.blogger.com/profile/08003123065191540056noreply@blogger.comtag:blogger.com,1999:blog-1319689965013933413.post-8043195262020608622010-02-28T13:32:37.077-07:002010-02-28T13:32:37.077-07:00Hi, Sean!
Your blog post came up on a Google aler...Hi, Sean!<br /><br />Your blog post came up on a Google alert I have set up for FD. I am so sorry for all you've endured with this terrible disease... then adding insurance complications surely made things far worse.<br /><br />My 9 y.o. daughter has MAS/FD and I am hoping you won't mind sharing some information. She too has FD widespread in her craniofacial bones, sinuses, and skull base. Currently she is doing well with no outward deformities and her vision and hearing are both good. My question for you, as an adult with FD is, Has your pain been terribly bad during your adult years? What kind of pain meds have worked best for you?<br /><br />I've been to medical conferences and researched the living heck out of this, but have found that although IV bisphosphonates work wonders for pain in orthopedic FD, it does very little to help with craniofacial FD. Do you have any words of wisdom?<br /><br />My thoughts and prayers are with you as you fight this terrible battle against FD and our medical system. Thanks for any insight you might be able to give.<br /><br />Kind regards,<br /><br />Tanya (mom to Lauren, MAS/FD)<br /><br />P.S. I'm uncertain if you see an endocrinologist, but that's who will do Lauren's pain management if/when the time comes, as not too many Pain Management Specialists want to take on children-Tanyahttps://www.blogger.com/profile/05653807197898498364noreply@blogger.com