I just had my decompression surgery August 8. My NS asked me 2 days after surgery how my head was feeling. I told him I had a bit of a headache and he stated my pain wasn't from Chiari then. Before surgery, I had a "hump" on my very upper back that would swell and decrease with activity/resting. My NS stated it was just fatty deposits from cortisone injections into my lower back. After surgery, the hump is gone and he told my family members that there was more pressure buildup than what he had anticipated. Does this mean it was a build up of CSF? Because the hump is coming back and I am beginning to get the pain in my neck and shoulders again. I guess my question is, is it possible the surgery was unsuccessful or is it too soon to tell?
I’m not sure if this will help…I had decompression surgery at Duke Hospital in NC January 19, 2012. I was pain free for 2 weeks. The surgery was a complete success but after the 1st 2 weeks the pain and pressure in my head came back 3x worse. My Neurosurgeon advised me and my parents that 70% of patients come out never having pain again and that 30% of patients come out worse than before along with new symptoms. I am a part of the 30%. I have been bedridden ever since and I have to keep ice packs and ice bags around my head almost 24/7 along with pain meds. My parents have taken me to 13 neurologist and a 2nd neurosurgeon in Baltimore to review my surgery which he said it was done perfectly. My next step is to have Botox injections in my head. It has been a success with many people suffering after having the surgery. I wish you the best and I am so sorry you are in pain.
I don’t have much to add since I haven’t had surgery yet but reading this reminds of a song from the lion king by Elton John ‘the circle of life’ - one of the lines is ‘… And some have to live w the scars’.
So sorry you are both in so much pain
Hang in there and hopefully it helps knowing you aren’t alone in the journey.
My surgery is almost 2 yrs. out and there have been many times I felt I was sick again.I have some sympytoms still but I have been treated for dysautonomia a condition that is not uncommon in chiari patients.In lots of cases there are other things to deal with yOu need to make sure you’re seeing a NS who knows about the conditions that can follow chiari…Pots,dysautonomia,Elers Danlos not sure of that spelling.You should be sure to investigate these things for yourself,it is so hard to get through this condition,you must advocate for yourself.God bless,as all these friends,you both are in my prayers.
I am 4 weeks out of surgery and am still having headaches. They don’t sound as bad as yours but I do take pain meds for them. I was told it can take a while for the tissue to “figure out” its new position after being compressed for so long. I hope your pain improves with time.
I would be concerned about the lump too. It just sounds strange, to me (not a doctor)that the hump would change in size if was fatty deposits… I would be wondering the same thing you are about CSF. You can always ask for an MRI. As for successful or not… Way to soon. Even with perfect outcomes there is a process if healing that can include the same pre op symptoms or even new symptoms. This is a tough recovery, just hang in there, Nancy.
Angel, have you looked into Ehlers Danlos Syndrome? EDS can cause cranio cervical instability which often shows up after a decompression or is worsened by a decompression. It happened to me. I became worse after decompression and just recently had my cranio cervical instability surgery. I didn’t know much about the dangers of EDS and CCI when I had my first surgery, and very few Chiari surgeons screen for it or fix it. There are two skilled EDS/Chiari surgeons in the baltimore area.
I'm not sure if this will help......I had decompression surgery at Duke Hospital in NC January 19, 2012. I was pain free for 2 weeks. The surgery was a complete success but after the 1st 2 weeks the pain and pressure in my head came back 3x worse. My Neurosurgeon advised me and my parents that 70% of patients come out never having pain again and that 30% of patients come out worse than before along with new symptoms. I am a part of the 30%. I have been bedridden ever since and I have to keep ice packs and ice bags around my head almost 24/7 along with pain meds. My parents have taken me to 13 neurologist and a 2nd neurosurgeon in Baltimore to review my surgery which he said it was done perfectly. My next step is to have Botox injections in my head. It has been a success with many people suffering after having the surgery. I wish you the best and I am so sorry you are in pain.
Jcdemar, I have not looked into EDS or CCI but I am going to now! Thank you so much!
I had surgery 3 years ago, according to my most recent mris done 3 months ago the chiari has not come back. But I still suffer from the same symptoms plus a handful of new ones that showed up after surgery. After surgery I ended up with a major csf leak, do you have any additional numbness,weakness, or dizziness since your surgery? When I had my csf leak all of these things became very problematic.
I haven't had my decompression surgery yet but I do have the big lump at the back of my neck which in itself is painful...please tell me how did the immediate days after the surgery go?
For me after the surgery I had sever nausea and vomiting which lasted almost a month. The pain was off the charts for about a month aswell. Then it started to lessen to just a constant dull ache that hasnt gone away yet(3 years later). I also had some unusual side effects including hallucinations that lasted almost continuously for the first 2 weeks, my NS thought this was due to a mixture of the multiple pain medications and the CSF leak that was caused by surgery. From my understanding though alot of people have much less side effects after surgery and less complications aswell. I think it just comes down to each individual person and the knowledge of your NS.
If your scheduled for surgery I hope everything goes good. Please feel free to ask ahh questions you may have. And keep us updated as you find things out.
Angel, watch these videos!
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Watch anything that has cranio cervical instability and EDS or the complex Chiari patient in it.
Dr Henderson fixes CCI and also one of his understudies…can’t remember his name, starts with an S and he is at Georgetown. The Chiari Institute in NY also fixed CCI.
It was recommended to me to wear a cervical collar when my symptoms returned- and that gave me A LOT of pain relief- you may want to try it.
Jcdemar, I have not looked into EDS or CCI but I am going to now! Thank you so much! :)
Jenn, Thank you SO much!
When I had my surgery it was a success with some symptoms gone but my headaches stayed. The cause, neurological nerve damage. It happens quite often with chiari patients since doctors are navigating around a bundle of nerves. I would be looking into that lump though I’ve never had that as a symptom.
I hope you feel better soon <3
Give it time. Everything has to heal. You just had major surgery. DO NOT DO ANYTHING, RELAX AND TAKE IT EASY. TRUST ME ON THIS. I had my surgery Feb. 7, 2010. My doctor made me me lay completely flat for two days in intensive care. Then transferred me to another room for two more days, and since I was from out of town I had to stay in "Kathy House" (kind of like Ronald McDonald House) for another 4 and half days until I got my staples out. I also had spinal surgery at the same time, because it needed to be done and I have a rare blood disorder, and better get it all done at once. I looked like Frankenstein. It is going to take a full year for total recovery. my doctor never told me that I had one of the best in the world. He runs a Chiari Clinic in Wisconsin. He is fantastic. 50% of his surgeries are corrections from what other surgeons did wrong in in the first place. But trust your instinct, if you think something needs attention, go get help. God Bless, I wish you well. Write me anytime my E-mail is ■■■■■■■■■■■■■■■■■■■■■■
Have you heard of Dr.Rosner in Hendersonville,N.C.? He is one of the best chiari NS’s in this field.There are some controversy around him but my take on that is the reg. Neuros are lacking in knowledge and so many others are looking to sue.He knows what he’s looking at,my chiari was almost 0 but very symptomatic without him there would have been no help for me.I had to reasearch for myself and feel God sent me the best NS for this sickness.He corrects a lot of the mistakes made by other Neuros.
Lynn Messer said:
Have you heard of Dr.Rosner in Hendersonville,N.C.? He is one of the best chiari NS's in this field.There are some controversy around him but my take on that is the reg. Neuros are lacking in knowledge and so many others are looking to sue.He knows what he's looking at,my chiari was almost 0 but very symptomatic without him there would have been no help for me.I had to reasearch for myself and feel God sent me the best NS for this sickness.He corrects a lot of the mistakes made by other Neuros.
What do you mean your Chiari was ? They usually only do surgery id=f it=f it is over 5-6 mm. Mine looked like 5 on all the MRI's, was much worse once he got in there. I too had to do my own research, none of my Neurologist would listen to me and kept saying no, it is not the Chiari. Just look up Wisconsin Chiari Center, and listen to to Dr Heffrz. Also read the website. He does two surgeries a week. People come from all over the world to go there, there is another Chiari Clinic in New York, but I read they had some malpractice suits. Like I said before 50% of Dr. Heffez's surgeries are correction from botched Chiari surgeries from other doctors.I am keeping you in my prayers and hoping you are healing well and taking it easy. Let others wait on you for once.
My chair was not herniated as so many others are,it was wide and pressing into the stem.Thers has been reasearch done to indicate that patients can be very symptomatic even when the herniation is very little.If not for the NS I would have lived the rest of my life without any help.You. are right that most Neuros.think without herniation of a certain amount there can be no symptoms,I know that to be incorrect because I lived it for 28yrs.+ I thank God everyday for leading me to Dr.Rosner.If there are anyone else who suffers and feels the symtoms fit the only hope is a specialist that knows about chiari 0.
Hi Lynn - your comment fully supports the research I have found as well. It seems to be much less about size than about the actual compression and symptoms. Thank you for your comment and clarification! From what I have read the too stringent requirements of minimal 5 mm herniation left many falling through the cracks to suffer alone and or be labeled neurotic, depressed etc.
I am so happy you are finding the help you need!