After years of suffering and years of searching for answers I can hardly believe that we leave for MD today to finally get the answers. My surgery (decompression & craniocervical fusion) is Tuesday...the day I've been waiting forever for! It has been a whirlwind of a few months trying to prepare for this day and God has been SO faithful to bring it all together and pave the way. I am overwhelmed by the support I've received from so many. This forum has been a lifeline to me...I thank you so much! I pray that when I wake up after surgery I will finally see the world through new eyes and finally feel better after so long. I pray that it is my new beginning filled with healing and hope!
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I'm going to Doctors Community Hosp in Lanham with Dr Henderson! Surgery is Tues at 7:30 am
Thanks so much
Dianne
You are definitely in great hands. I hope to see Dr. Henderson someday.
Di,
I have been thinking about you. You have been through SO Much just to get to this point. I never rejoice over surgery but you definitely need it beyond a shadow of doubt. I will be saying a prayer for you. Please let us know soon how you are doing !!!
Best wishes on your upcoming surgery! :)
Thank u all so much! Beeba…we are staying at best western capital beltway in lanham 3 mi from DCH. Dr henderson is amazing! My apt with him was like no other… 2 days where he actually spent 2.5 hrs with me the 1st day and listened, asked pertinent ?s, did a very thorough exam and looked at the correct imaging. He measured every angle of my skull. The KEY to getting the answers is getting upright mri w/ flex/extension and a dynamic ct with flex and rotation left and right. The answers came from there and they are serious…i have EDS, chiari, craniocervical instability causing retroflexed odontoid, cranial settling, abnormal clivo-axial angle, foramen magnum stenosis causing severe brainstem and cord compression, obstructed csf, intracranial hypertension, basilar invagination and instability of c4-5 and rotational subluxation. He also did upright MRI of lumbar/sacral with flex/exten and found OTC.
I wish i could bring everyone to him. He is the kindest man ever. He shows such empathy for our suffering. I have talked to so many that he has restored and have 110% faith in him.
I will keep you posted. I hope this info helps you! Im happy to answer any ?s you might have
Please take time to heal, and remember things will get better. U r in my thoughts and prayers.
Pat
Hi everyone,
I'm sorry that it's taken me so long to post an update. I thank you all so much for your thoughts and prayers. I have to just share what an absolutely AMAZING experience I had in Maryland......I truly believe I had a miracle in Maryland!!!!! On June 25 I had a decompression/craniocervical fusion surgery.
I would love to provide encouragement to others that are on this difficult journey, whether they are trying to navigate the medical system to get the help that they need, contemplating if they should have surgery, or are about to undergo surgery. I want you to know that it doesn't have to be a nightmare experience. I want more than anything to offer support and encouragement to you. JUST 3 wks ago...I was still lying in a recliner with awful sx, desperately awaiting our trip to MD to finally have my decompression/craniocervical fusion surgery with Dr Fraser Henderson (who I will be eternally grateful to). Let me just tell you that I AM A WALKING MIRACLE! My surgery went amazingly well....and my post-op recovery was even more amazing (truly a miracle). Within an hour of being brought to my room from recovery, Dr H walked over to me, took me by the hands and pulled me to my feet, had me walk over to a chair, up on my tiptoes and rocking on my heels (checking neuro function) then sitting up for hours. I barely used pain meds.....had no pain in any of the 3 incision sites, and was discharged in 2 days! He called me a miracle. Within a week I was just taking tylenol as needed.....and was able to go into DC to watch the 4th of July parade/fireworks. I have progressively been doing well.....just tired! I have no pain and just about all of my pre-op symptoms are resolved. When your head is attached, it's amazing how well the body can work. I am forcing myself to lay low still b/c I know that my body is working hard to heal....but I have never felt so alive and restored in my life!
At my post-op apt. Dr H handed me the surgical report that is so detailed in terms of all that I had wrong and all that he did to fix me. My official diagnoses are: Ehlers-Danlos Syndrome with craniocervical instability, chiari 1 malformation, foramen magnum stenosis, kyphotic clivo-axial angle, spina bifida occulta with instability at c-1, and cervicomedullary syndrome!!!! QUITE A MOUTHFUL HUH?? In English....I was a walking time bomb! My brainstem & spinal cord were so compressed that when he did the sensory evoked potentials before surgery it took way longer than it ever should for the electrical message to reach my feet, which indicates spinal cord issues. It also took him 30 pounds of traction force to lift my head off my spinal column so that it wasn't compressing everything. He used a rib to help build up my skull so that my skull won't fall down on my brainstem/spinal cord and once everything was in perfect alignment and just where he wanted it, he used plates and rods and screws to hold it all together. He was able to put my clivo-axial angle back to perfect so that there is no more brainstem compression. He removed one of my nerves that would have been compressed by the hardware to avoid future problems. I haven't noticed anything at all so guess it's not an issue!
He went down the list of all the symptoms that I had pre-op to see how they are doing.....I think just about every one of them have resolved. I told him about how amazing the dreams are that I've had since surgery....I literally haven't dreamt in years so the surgery has obviously helped my sleep cycle as well. I hope that means less fatigue!
When I read his report, it leaves me in awe of how I walked around for so many years like this....clearly feeling awful and having days that I layed in the recliner more than anything else...but I am in awe that I was still functioning. I should not have been. Again....only by the grace of God!
It makes me very excited to come home and make MANY copies of this report and write many letters to all the jerk doctors that had the nerve to tell me that nothing was wrong....that dismissed me like I was crazy....that blew off the PT who clearly knew what he was talking about....and who literally let me walk around like a time bomb and deteriorate far more than I ever had to. I hope it knocks them down a few pegs and checks their arrogance just a little bit. The next time a patient goes in with issues similar to me maybe they will think twice before being such jerks! That will be my next phase of recovery..... I was lucky enough to have the determination and empowerment to fight until I got the answers...others aren't as lucky!
I truly believe that I expereienced a miracle in MD. I came home and quickly got it all down on paper b/c I never want to forget the details of this experience. I have attached it for those that are interested in reading it. If I can help anyone or offer encouragement, answer questions etc... don't hesitate to contact me!
366-MyMIRACLEstory2.doc (43.5 KB)Sorry it's been a while since I've posted. I realized that I should add this post-op update on this feed so that you all see it. I had posted under SUCCESS STORIES. Thought I'd put here as well. It's been 3 wks since my surgery.
I would love to provide encouragement to others that are on this difficult journey, whether they are trying to navigate the medical system to get the help that they need, contemplating if they should have surgery, or are about to undergo surgery. I want you to know that it doesn't have to be a nightmare experience. I want more than anything to offer support and encouragement to you. JUST 3 wks ago...I was still lying in a recliner with awful sx, desperately awaiting our trip to MD to finally have my decompression/craniocervical fusion surgery with Dr Fraser Henderson (who I will be eternally grateful to). Let me just tell you that I AM A WALKING MIRACLE! My surgery went amazingly well....and my post-op recovery was even more amazing (truly a miracle). Within an hour of being brought to my room from recovery, Dr H walked over to me, took me by the hands and pulled me to my feet, had me walk over to a chair, up on my tiptoes and rocking on my heels (checking neuro function) then sitting up for hours. I barely used pain meds.....had no pain in any of the 3 incision sites, and was discharged in 2 days! He called me a miracle. Within a week I was just taking tylenol as needed.....and was able to go into DC to watch the 4th of July parade/fireworks. I have progressively been doing well.....just tired! I have no pain and just about all of my pre-op symptoms are resolved. When your head is attached, it's amazing how well the body can work. I am forcing myself to lay low still b/c I know that my body is working hard to heal....but I have never felt so alive and restored in my life!
At my post-op apt. Dr H handed me the surgical report that is so detailed in terms of all that I had wrong and all that he did to fix me. My official diagnoses are: Ehlers-Danlos Syndrome (hypermobility) with craniocervical instability, chiari 1 malformation, foramen magnum stenosis, kyphotic clivo-axial angle, spina bifida occulta with instability at c-1, and cervicomedullary syndrome!!!! QUITE A MOUTHFUL HUH?? In English....I was a walking time bomb! My brainstem & spinal cord were so compressed that when he did the sensory evoked potentials before surgery it took way longer than it ever should for the electrical message to reach my feet, which indicates spinal cord issues. It also took him 30 pounds of traction force to lift my head off my spinal column so that it wasn't compressing everything. He used a rib to help build up my skull so that my skull won't fall down on my brainstem/spinal cord and once everything was in perfect alignment and just where he wanted it, he used plates and rods and screws to hold it all together. He was able to put my clivo-axial angle back to perfect so that there is no more brainstem compression. He removed one of my nerves that would have been compressed by the hardware to avoid future problems. I haven't noticed anything at all so guess it's not an issue!
He went down the list of all the symptoms that I had pre-op to see how they are doing.....I think just about every one of them have resolved. I told him about how amazing the dreams are that I've had since surgery....I literally haven't dreamt in years so the surgery has obviously helped my sleep cycle as well. I hope that means less fatigue!
When I read his report, it leaves me in awe of how I walked around for so many years like this....clearly feeling awful and having days that I layed in the recliner more than anything else...but I am in awe that I was still functioning. I should not have been. Again....only by the grace of God!
It makes me very excited to come home and make MANY copies of this report and write many letters to all the jerk doctors that had the nerve to tell me that nothing was wrong....that dismissed me like I was crazy....that blew off the PT who clearly knew what he was talking about....and who literally let me walk around like a time bomb and deteriorate far more than I ever had to. I hope it knocks them down a few pegs and checks their arrogance just a little bit. The next time a patient goes in with issues similar to me maybe they will think twice before being such jerks! That will be my next phase of recovery..... I was lucky enough to have the determination and empowerment to fight until I got the answers...others aren't as lucky!
I truly believe that I expereienced a miracle in MD. I came home and quickly got it all down on paper b/c I never want to forget the details of this experience. If I can help anyone or offer encouragement, answer questions etc... don't hesitate to contact me! There is nothing more that I want to do than to pay it forward to others! I will be returning to MD on Aug 12 for TC release surgery. I am praying that it will go as smoothly!
Thanks Abby
YES...I AM...and I give ALL CREDIT to GOD & Dr Henderson!!!! I am eternally grateful. I am happy to answer any ?s that anyone may have or just offer hope/encouragment. I know it's all so overwhelming and scary but when in the right hands it can be the most peaceful, amazing experience ever!
I had my first rough day today. I will be glad when they sort out this adrenal insufficiency thing (they took my cortisol level before d/c and my cortisol level was very low....so now I need to find out if it's just from having surgery of if I have Addison's disease.... my dx list will be a mile long!!!) I hate being on this steroid and it would appear that the one my endocrinologist switched me to makes me feel worse than the first one. My BP was high all day, racing heart, breaking into a sweat for no reason..... miserable! I had all of that before surgery due to brainstem issues/POTS so of course it leaves me a bit uneasy to feel that again after surgery. Hoping it's the med. I'm still on the mend from the visit we all got from strep throat this week too! I was told that being on a steroid leaves me more susceptible to getting sick.....sure enough! And my tethered cord has been more symptomatic today...numb legs and feet and low back pain/pressure....so I'm glad that it'll be taken care of pretty soon. 22 more days....which stresses me out just a little bit. I feel like I've yet to have time to really rest up and it's already almost time to get ready to head back to MD. In the end I know it will be a good thing to just have these 2 surgeries out of the way so quickly. There just never seems to be enough time to do everything! Tomorrow is my last day with my husband home...YIKES! (I'm sure he can hardly wait to go to work so he can rest....lol) I'm praying the rest of the week goes well as I "fly solo!" I will be praying for lots of grace :)