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Encouragement to others after decompression/craniocervical fusion

Jul 21, 2013 - 14 comments
Tags:

decompression

,

craniocervical fusion

,

Chiari

,

decompression EDS



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 am 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!   Then evenutally I need to have c4-5 stabilized..... but we need to wait until my craniocervical fusion is healed well.

Comments
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620923 tn?1452919248
by selmaS, Jul 21, 2013
Thanks so much for adding this as a journal,,,,and I hope u continue to add to it as u continue to heal .

Avatar universal
by Dicon, Jul 21, 2013
Thanks for letting me know that there was this option.  I am happy to keep adding to it to offer hope/encouragement

620923 tn?1452919248
by selmaS, Jul 21, 2013
No worries,,,,I have a journal too, and it was so helpful to me to post to it...u can also change the privacy settings so only friends can read it....how ever u want ....I look forward to updates : )

Avatar universal
by DrSusan, Mar 19, 2014
My similar miracle occurred on 1/29/14 by Dr. Bolognese in NY.  Before that, I was bedridden for 2 1/2 years.  Now I can be upright without my brains failing into my butt! Ain't life grand?

620923 tn?1452919248
by selmaS, Mar 19, 2014
Congratulations on ur surgery DrSusan.....so glad u r seeing benefits of  it as well.

Avatar universal
by Melgirl, Mar 29, 2014
"He was able to put my clivo-axial angle back to perfect so that there is no more brainstem compression." Do you know what procedure he used to do this?  Was it just the fusion that did this or did he somewhat lift skull, reposition to correct the caa before the fusion?  Just wondering if that bit is in your report so you could share with me.  I'm a similar boat with 19 mm CM II, EDS, CCI, arachnoid cyst attached to the CM, abnormal clivo-axial angle )120-130s, and cervicomedullary syndrome. I'm just wondering how these expert doctors fix the caa because fusing.

620923 tn?1452919248
by selmaS, Mar 30, 2014
@Melgirl - with doing a fusion the NS will align the CAA and the fusion holds it in the best place to no longer have the compression.

Avatar universal
by Dicon, Mar 30, 2014
Melgirl...yes he did a reduction using traction to lift my head off my spine. it took 30 lbs of traction to get it off and where it needed to be. he then used ct guidance to align it perfectly so that my CAA was back to near perfect. he double and triple checked the alignment then he did the fusion. he uses a piece of harvests rib from my thoracic area to keep my head up off my spine.  then the fusion is done with plates and screws etc.  it's pretty amazing!  I am 9 mos post-op and still doing pretty well regarding that anyway. stil plenty of issues from EDS but in terms of this surgery....he did an amazing job and dont regret having it done at all

Avatar universal
by NextNicky, Nov 04, 2014
Looking for insight, recovery time, experiences, and outcome from those that had craniocervical fusion done for craniocervical instability?

Avatar universal
by KHmontana, Feb 07, 2017
How are you doing now?? All the long term, up to 5 years, Prognosis i have found has not been good and i am scared. Please reply. Thank you so Much.

Avatar universal
by duveduve, Sep 11, 2017
Just wondering how you have been a few years out from surgery.

Avatar universal
by Dicon, Sep 12, 2017
Unfortunately there are still struggles. I've needed more spine surgery so I am now fused skull-c7 and deal with awful muscle spasms. I am also being worked up for vascular eagle syndrome as it seems that once our skull is lifted and fused in a fixed position the styloid bone can compress nerves and vascular structures. I feel like as they fix one thing they ruin something else. My adrenal system tanked with all the surgeries and I have some nerve injuries that caused an unstable shoulder so it is just 1 thing after another. Very discouraging. I am now 4 yrs post-op decompression/CCF but not oit living life as I had hoped.

Avatar universal
by ShaDavis, Jan 14, 2018
I also just had oc fusion to c4  2/12 weeks ago. neck feels better but my left shoulder blade is killing me . I was wondering when do you start therapy and did y’all wear collars after surgery. I was done by Dr.Patel and wasn’t put in collar at all. Also was told of nothing on what to expect and how to deal with pain ( ice or heat) , do I walk now or what . Could you give a simple post-op 1 month,3 month, 6 month, 12 month goal. Please, I am without a life raft.

Avatar universal
by Dicon, Feb 12, 2018
I hope that you are feeling better. It amazes me how these surgeons do these major surgeries and give no instructions for post-op.  It's so awful!  I was in my neck brace for MANY months after all of my fusions.  I was in one for the better part of 4 yrs between so many fusions and the time in between when there was instability. I was up and about walking around right after my skull-c2 fusion but with my brace on 24/7 (except showering).  Dr Patel didn't give you a brace? it is important to wear a brace to immobilize your neck so that the bone can fuse (sorta the same concept of wearing a cast after a broken arm)  Every dr is different re: PT as well.  After some surgeries I was told no PT at all and other times I was told core strengthening, ROM and isometrics.  Honestly most PTs have no clue how to help EDS pts and ended up hurting me more. The best type of PT for us is manual therapy and possibly dry needling if you have a ton of muscle spasms.  I am almost 5 yrs post-op skull-c2 fusion and am still full of muscle spasms.  Neck is still weak.  Have developed an unstable shoulder with severe scapula pain (so I empathize with you)  It is a never ending journey.  You might want to call Dr Patel's office and ask for his post-op instructions. If he wants any PT he would need to order it anyway.  Wishing you a good recovery

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