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Complications after 18 years of having Chiari Surgery
When I had chiari surgery they used skin from my leg to make a sling for my brain, that was 18 years ago. Can that sling start to give way through the years?
COMMUNITY LEADER
I had a good experience while there...of course with ne hospital there were some good and not so good staff and some that above and beyond...I can not complain much except got the night staff in the general wing after I moved out of ICU....they made noise like it was the middle of the afternoon so I always suggest ear plugs for items to take to the hospital....
I never got up to more the 25mg a day as I had a strange reaction and my Dr backed off ....but I also did not think it was helping until I ran out one time and saw just how different it was with the meds as it was with out...
My Dr said TOPAMAX changes the HA ....and u can develop new types of HA's for a while but it will change them....and after I missed a week I knew just what he meant....lol..
haha... now you've reminded of the "dopamax" I did have some word finding issues now that I think about it. Again, I was on so many other meds both times I took it, it's difficult to say for certain.
I'm only at 25mg 2x/day right now, we'll see what the increase brings. My Neuro is super conservative and never seems in much of a hurry. Much to my frustration - he doesn't have the headaches. So far, no side effects but no relief either.
Hopefully you won't have to do the TCS surgery :( The whole idea of that scared me far more than decompression. They showed me the film at TCI during which I promptly fell asleep having already decided there was no way I was doing it.
I'm curious what you thought of North Shore hospital?
I'm only at 25mg 2x/day right now, we'll see what the increase brings. My Neuro is super conservative and never seems in much of a hurry. Much to my frustration - he doesn't have the headaches. So far, no side effects but no relief either.
Hopefully you won't have to do the TCS surgery :( The whole idea of that scared me far more than decompression. They showed me the film at TCI during which I promptly fell asleep having already decided there was no way I was doing it.
I'm curious what you thought of North Shore hospital?
COMMUNITY LEADER
Really,,.I was so fatigued with TOPAMAX....more then my usual being tired, I had issues trying to hold my eyes open....and just plain loopy....but after the 2 week time frame I felt so much better....again I had no idea there was an adjustment period until later...
I also have TCS and it can cause all sorts of issues....and more recently I have had issues with my lower back and legs which I feel is the TCS....I also have and continue to put this surgery off as life is just in the way....lol...but if it gets too bad I may consider it ....later tho...
No EDS, just Chiari. TCI was suspicious of tethered cord in 2008 but I refused to go into another surgery. I'm very prone to infection and the risk wasn't worth it for me as it was too much of an unknown. The decompression worked beautifully for alleviating debilitating neck pain - so that was definitely the right move. If we just could have avoided the infection and complications post op, I would have said it was a breeze.
It's been about a month already on the Topamax, no side affects. I never had any before that I could recall aside from the metallic taste and flatness of carbonated drinks. I'm sure I'll be a better judge this time, I'm only taking a muscle relaxer, Tylenol and imitrix as needed.
It's been about a month already on the Topamax, no side affects. I never had any before that I could recall aside from the metallic taste and flatness of carbonated drinks. I'm sure I'll be a better judge this time, I'm only taking a muscle relaxer, Tylenol and imitrix as needed.
COMMUNITY LEADER
Hi and thanks for the update...and glad u have a treatment option...I hope the TOPAMAX works well for u this time....I am sure u r aware there is an approx 2 weeks adjustment period....I had no idea when I first started and it knocked me for a loop....but once past that point I felt the benefits of the med....as I pray u will too.
Not sure if I asked b4 but did they rule out EDS for u?
Just an update. I ended up having my MRI's re-done here in CT instead of going back to TCI. The cerebellum prolapse issue hasn't worsened which is good news. My cervical disk bulges have gotten worse though and I've started developing small cysts. I'm being referred to a Physicist for the possibility that the disks could be causing nerve pain contributing to headaches. So we shall see.
I started back on Topomax (for the 3rd time in my ten year Chiari history). This is the first time I've taken Topamax without being on tons of other meds (narcotics, barbiturates, antidepressants) so I'm interested to see if it works better than it has in the past.
I started back on Topomax (for the 3rd time in my ten year Chiari history). This is the first time I've taken Topamax without being on tons of other meds (narcotics, barbiturates, antidepressants) so I'm interested to see if it works better than it has in the past.
By the way Irene are you sure it wasn't a trampoline type he used to hold up the cerebellum? I know this has been used with some larger herniations.... Either way what ever was done needs to be looked at to rule out complications.... Make them listen :-) Lisa
((((((Kit ))))) and everyone else.... I know many of us have hurt or are hurting so bad we have thought of ending it or at least giving up out fight. As I write this tears roll down my cheek. I do understand. But I know one thing, we are meant to live and therefore we must find a way to do so. If a Dr won't help us we have to find one who WILL. We know our bodies better than anyone and we KNOW when something is not right. Sometimes when we feel the most alone, we're not, and sometimes when no one will listen we have to find a way to stand up for ourselves and be STRONG! Prayers and much love to everyone of us :-) Lisa
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
2002, that is some time ago, have u had a recent MRI?.....Were u checked for ne related conditions?
EDS is one that many of us have in common and can cause HA's and many other similar symptoms associated with Chiari.....
Have u been to see Dr Oro since ur post op check ups?
Hi. I have my decompression surgery in Feb 2002, preformed by Dr. Oro. I have had headache on the same side at the base of my skull on the left side. They are getting swears and doctors say its all in my head and there is no cause for my headaches. I am getting so tired of being in pain. They have tried pain blocker. all that did it cost me over a $1000 and hurt like hell. It did not give me any relief. Has anyone experienced this?
Tish
Tish
COMMUNITY LEADER
I know what u mean, Drs well informed and experienced with Chiari are rare...and the ones that are out there r surgeons....
The biggest problem is surgeons do not DX, so u need a NL....and find one of them that knows Chiari and related conditions to know what testing to perform.
ICP, POTS, EDS.....there are several related conditions u may have b4 or post op.....
I am the community leader, not a moderator they have the job, I just help out...lol... I also had surgery at TCI and know what it is like to have to travel to get to a Dr....
No worries...keep us posted on what u find out and end up doing......
Thank you Selma, are you the moderater on this forum? It's wonderful of you to contribute and make yourself available to answer questions.
I have bulging disks in my lumbar and cervical area from a sports injury, the pain from the disks when aggravated is very sharp and much different from the burning pain I'm experiencing in my thoracic area. While the bulging disks are very painful at times, rest over a few days will help. But the upper back pain is chronic and doesn't seem to be 'caused' by activity. Remarkably I do get some relief when I can be horizonatal. Because it appears to be positional, much like my original neck pain, I tend to think that it may have something to do with the Chiari. Trying to explain that to my local neuroligist is somewhat like talking to a wall. He's wonderful and I really like him but it's not the same as speaking to a doctor that really knows what Chiari is.
It's been about 4 years since I've had my MRI's updated. I was scheduled to have neck and thorasic images done here in February but I cancelled thinking I may have to go back to New York. I believe I'd be more comfortable having the doctors there look at my current condition. I wish more doctors were more familiear Chiari, the travel involved to see a specialist is crazy.
It seems I've pretty much talked myself into the necessity of contacting TCI. :)
Ruled out related conditions? Are you referring to POTS or TCS?
Thanks again for your help.
I have bulging disks in my lumbar and cervical area from a sports injury, the pain from the disks when aggravated is very sharp and much different from the burning pain I'm experiencing in my thoracic area. While the bulging disks are very painful at times, rest over a few days will help. But the upper back pain is chronic and doesn't seem to be 'caused' by activity. Remarkably I do get some relief when I can be horizonatal. Because it appears to be positional, much like my original neck pain, I tend to think that it may have something to do with the Chiari. Trying to explain that to my local neuroligist is somewhat like talking to a wall. He's wonderful and I really like him but it's not the same as speaking to a doctor that really knows what Chiari is.
It's been about 4 years since I've had my MRI's updated. I was scheduled to have neck and thorasic images done here in February but I cancelled thinking I may have to go back to New York. I believe I'd be more comfortable having the doctors there look at my current condition. I wish more doctors were more familiear Chiari, the travel involved to see a specialist is crazy.
It seems I've pretty much talked myself into the necessity of contacting TCI. :)
Ruled out related conditions? Are you referring to POTS or TCS?
Thanks again for your help.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is possible for a disk to obstruct CSF flow and u would then have many of the same issues as with Chiari...so do have the disks looked at.
No, u r not healed, or cured...surgery is a means to restore flow and slow progression...but there is no cure for a malformed skull....and many of us may continue with many symptoms as surgery may not aleive.
Many Drs may feel that u r no longer in need of care since u had surgery and since some Drs feel this way u can not b surprised that family and friends also go along with it....they have no clue...
DId u rule out related conditions?
I had surgery at TCI May 2006. My dx took 2 years during which I suffered from excruciating neck pain. The original MRI showed a 5 mm herniation but Dr. Milhorat told me post surgery it was 16 mm as it was "hidden" behind the spinal cord in the images. Surgery involved enlargement of posterior fossa, cauterizing the tonsils, trimming C1 and C2 and installation of a mesh plate. Three weeks later I had a major infection at the surgical site which prompted a second surgery and removal of the plate. The infection involved a very long recovery period followedf by extensive physical therapy to regain mobility.
18 months post op I returned to TCI due to continued issues with balance/mobility, back pain, headaches and vision problems. Images at that time showed some prolapse of the cerebellum. They were leaning toward a dx of tethered cord but I really couldn't face another surgery and the potential problems I chose to "live with it"
Now I'm experiencing a great deal of back pain, primarily a burning sensation in the center of my upper back and also my lumbar area. I know I have disc issues in the lumbar so it's primarily the thorasic pain that is worrisome. Headaches have always been an issue for me, nearly every day so I've ironically become accustomed to that pain. I deem my surgery succesful because the debiliating neck pain was relieved but I seem to have all these issues with daily pain and I'm worried about the potential for nerve damage and long term issues. I do not take narctotics after addiction issues following pain management but do take large amounts of tylenol (12 to 18 per day) as well as muscle relaxers. I'm currently working with my neurologist on using a beta blocker for headaches which may have the added bonus of keeping a rapid heart rate in check. (I'm trying to do some research on tachycardia in relation to Chiari since my entire family seems to share a condition of occasional rapid heart rates)
My currentl neurologist (nor any of my local doctors in the past) have been knowlegeable about Chiari and ongoing symptoms. I'm considering going back to TCI.
Right now I feel the general consensus (from my Drs, friends, family) is that I had the surgery and therefore I'm cured. Is this the case??
18 months post op I returned to TCI due to continued issues with balance/mobility, back pain, headaches and vision problems. Images at that time showed some prolapse of the cerebellum. They were leaning toward a dx of tethered cord but I really couldn't face another surgery and the potential problems I chose to "live with it"
Now I'm experiencing a great deal of back pain, primarily a burning sensation in the center of my upper back and also my lumbar area. I know I have disc issues in the lumbar so it's primarily the thorasic pain that is worrisome. Headaches have always been an issue for me, nearly every day so I've ironically become accustomed to that pain. I deem my surgery succesful because the debiliating neck pain was relieved but I seem to have all these issues with daily pain and I'm worried about the potential for nerve damage and long term issues. I do not take narctotics after addiction issues following pain management but do take large amounts of tylenol (12 to 18 per day) as well as muscle relaxers. I'm currently working with my neurologist on using a beta blocker for headaches which may have the added bonus of keeping a rapid heart rate in check. (I'm trying to do some research on tachycardia in relation to Chiari since my entire family seems to share a condition of occasional rapid heart rates)
My currentl neurologist (nor any of my local doctors in the past) have been knowlegeable about Chiari and ongoing symptoms. I'm considering going back to TCI.
Right now I feel the general consensus (from my Drs, friends, family) is that I had the surgery and therefore I'm cured. Is this the case??
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am so sorry the surgery u had did not help, many times it can be a result of a related condition ....u did mention the Dr will have to go in deeper....may I ask did u not have a laminectomy and duraplasty?
Did they do a MRI post op to see if ur CSF flow was restored and the syrinx shrinking?
It can take time to feel better and we do have a resurgence of symptoms as it is part of the healing process, but u should not feel worse then b4 surgery....
Make sure u get a few opinions and test for all related conditions, and get copies of all MRI's even ur pre op ones and post op to be used to compare so they can see just what is going on.
I hope u have a well experienced Chiari specialist as it does make a difference.
Know u r not alone and we have had several members that needed more then one surgery,...but many times they used a diff NS the 2nd time around and did so much better.....
I am post Chari 1 malformation, 2001, I fell 4 yrs ago and now my neck is fused C3 to C7. I live in pain. it was 24/7 until 8 months ago.
I started Ketamine infusion, and now I at least get 2- to 3 days of managed pain.
Dr Rosner in NC , did my Chari surgery, and the fusion. Said that if the pain wasn't relived that he may have to do more. But my luck would have it, the INsurance wont pay and he will not see me again, a few other DR's here in SC have look at me, but said if the surgery didnt help the first time the second won't either.
Good luck, lets us know how it goes.
Hang in there!!!!!
Ads1432
I started Ketamine infusion, and now I at least get 2- to 3 days of managed pain.
Dr Rosner in NC , did my Chari surgery, and the fusion. Said that if the pain wasn't relived that he may have to do more. But my luck would have it, the INsurance wont pay and he will not see me again, a few other DR's here in SC have look at me, but said if the surgery didnt help the first time the second won't either.
Good luck, lets us know how it goes.
Hang in there!!!!!
Ads1432
3 years ago I had surgery at the Heath hospital Cardiff, for chiari and syrinx, since then I have suffered major headaches, and the symptoms off chiari 1 all over again, I have tried to end my life many times, I am now on the waiting list for further surgery, but this time deeper in, I hope that this will finally end the suffering, has anybody been through surgery more than once and had better results
And yet another trip to ER.
This doesn't make sense...
The ER Dr wouldn't give me the shot I usually get that helps so well with my HA. It's not a controlled substance and has very little abuse potential and he told me he would not give me any narcotics. Well... he gave me a shot of Vistiril AND 2 VICODIN...!?!?!
Is Vicodin NOT a NARCOTIC ???
And isn't it much stronger and MORE ADDICTING ???
Doesn't make any sense to me.
The meds help take the edge off of the ha but I still have it.
My BP was 144/104 I have gotten it down to 148/96 for now.
When will this end?!?!?
This doesn't make sense...
The ER Dr wouldn't give me the shot I usually get that helps so well with my HA. It's not a controlled substance and has very little abuse potential and he told me he would not give me any narcotics. Well... he gave me a shot of Vistiril AND 2 VICODIN...!?!?!
Is Vicodin NOT a NARCOTIC ???
And isn't it much stronger and MORE ADDICTING ???
Doesn't make any sense to me.
The meds help take the edge off of the ha but I still have it.
My BP was 144/104 I have gotten it down to 148/96 for now.
When will this end?!?!?
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am so sorry u did not get more relief from ur surgery.
Do u know was ur chiari acquired or congenital that was triggered by an event? Granted not all military Drs will be well experienced with chiari as non military Drs...we do need to educate ourselves and find the right Dr.,
I hope we can help u figure out what u can do to get some relief. : )
I know how you feel. If it wasn't that I have 2 beautiful daughter's 17 & 21 and a grand baby on the way I would have ended it a LONG time ago.
I am tired of suffering and being labeled a "drug addict" and no one seems to understand.
My days now consist of laying alone in my room where it's cool dark and quiet. What kinda life is that?
Nothing but narcotic meds help BUT the one that helps BEST is NOT a controlled substance and has little abuse potential but there is a national shortage of it. The other that works well has also been removed off the market but the nasal spray is still avail but dr's are reluctant to prescribe because it is very habit forming.
BUT... after dealing with this for so long I am to the point IF I have to be addicted to something just to have some resemblance of a life, welll... SO BE IT !!! And that's not for other's to judge until they have walked in some of our shoes !!!
Agreed???
I am tired of suffering and being labeled a "drug addict" and no one seems to understand.
My days now consist of laying alone in my room where it's cool dark and quiet. What kinda life is that?
Nothing but narcotic meds help BUT the one that helps BEST is NOT a controlled substance and has little abuse potential but there is a national shortage of it. The other that works well has also been removed off the market but the nasal spray is still avail but dr's are reluctant to prescribe because it is very habit forming.
BUT... after dealing with this for so long I am to the point IF I have to be addicted to something just to have some resemblance of a life, welll... SO BE IT !!! And that's not for other's to judge until they have walked in some of our shoes !!!
Agreed???
I understand what you are going through and frustration does not even come close to describing it. I was in the military and involved myself in a traumatic event, that lead to my collection of symptoms. 12 doctors and a year of worsening symptoms, and my threat of "offing myself" to make the pain go away..I was dx with chiari and had my surgery 2 weeks later with apologies from the NS. He said I was so young and MRI didn't show the tangled mess he found. He was surprised I was walking. After he discharged me from the hospital, I never saw him again. He got shipped to Japan & I was discharged from duty. That was 14 years ago. No one ever explained anything to me. And the internet info is contradicting and lack studies for long term prognosis. I just knew flexeril, Motrin, and laying flat did the trick for the HA I got post surg. Lately, it's not helping anymore. I'm so glad I found this place bc I have found more answers here then ever. I thought the surg was a cure all and I was just rare. NS just tell me I shouldn't be hurting and send me off. I realize now it's bc they are just not educated on my condition and obviously I am not either! So please bring on the knowledge and help the both of us. My pain is not as bad as Kts but I fear it's going to get there. It's not fair to go through this twice, blinded!
It's been so long ago and so little was known about Chiari's back then that I can not recall everything that was done.
I do know that I had a cyst that they drained and the skull patch that was removed was put back in with glue made from my blood and I don't know what all else was done.
My Dr. was Dr. Derek Bruce who at the time was supposedly the renowned Dr to see for Chiari's.
What is EDS?
I haven't had an MRI in a long time, mainly because I can't get anyone to do anything, they all want me to see a Neurologist or Neurosurgeon but I can't I have no ins. and no job and right now I couldn't work if I had to because me headaches are so bad.
I am tired of being judged !!!
I ended up in an ER and hr away from here last week because I was in excruciating pain, after sitting in waiting room for hrs they were acting all concerned about my surgery and all so they did a c-scan and after several more hrs I finally saw a DO who gave me a shot of Demerol which did nothing and when I asked about the c-scan I was told that they didn't do it to check for problems with the Chiari, that they were only ruling out a bleed. I got to that ER at 9:45 pm saw the DO at 7:30 am and we drove home with me still hurting.
I am at my breaking point!
I do know that I had a cyst that they drained and the skull patch that was removed was put back in with glue made from my blood and I don't know what all else was done.
My Dr. was Dr. Derek Bruce who at the time was supposedly the renowned Dr to see for Chiari's.
What is EDS?
I haven't had an MRI in a long time, mainly because I can't get anyone to do anything, they all want me to see a Neurologist or Neurosurgeon but I can't I have no ins. and no job and right now I couldn't work if I had to because me headaches are so bad.
I am tired of being judged !!!
I ended up in an ER and hr away from here last week because I was in excruciating pain, after sitting in waiting room for hrs they were acting all concerned about my surgery and all so they did a c-scan and after several more hrs I finally saw a DO who gave me a shot of Demerol which did nothing and when I asked about the c-scan I was told that they didn't do it to check for problems with the Chiari, that they were only ruling out a bleed. I got to that ER at 9:45 pm saw the DO at 7:30 am and we drove home with me still hurting.
I am at my breaking point!
COMMUNITY LEADER
Hi...I am so sorry u feel so badly and can not get help.
Was ur first Dr a Chiari specialist?...Have u looked at out list of Drs to research?
Once u have had surgery, it is diff to get Drs to look let alone treat u, so u will need a true chiari specialist....
U may have developed scar tissue or some other related issue, which can and does happen...plus, if u did not rule out all related issues b4 surgery u may just be feeling it now too.
May I ask u a few questions?
What did ur surgery entail?
did u have a dura plasty if so what type of patch....where u tested for EDS?
Did u have a MRI post op, when was ur last one?
I am 19 yrs post Chiari and I am having excruciating headaches, with stiff hurting neck, blurred vision, extremely high BP and nausea.
I started having headaches again about 2 yrs post surgery, even had a spell where I passed out and hit the kitchen floor and my headaches have gradually gotten worse.
I don't know if the Chiari has returned or if I have scar tissue built up that's causing this. I have lots of pressure in my neck.
I have lots of scar tissue on the outside of my scar.
Has/does anyone else have these problems & what's causing them?
I AM AT MY BREAKING POINT!!!
Nothing but Narcotic pain meds give me ANY RELIEF and Dr's here won't treat me.
I am tired of fighting just so I can have some resemblance of life without a terrible headache ALL THE TIME!
SOMEONE PLEASE HELP ME!!!
I started having headaches again about 2 yrs post surgery, even had a spell where I passed out and hit the kitchen floor and my headaches have gradually gotten worse.
I don't know if the Chiari has returned or if I have scar tissue built up that's causing this. I have lots of pressure in my neck.
I have lots of scar tissue on the outside of my scar.
Has/does anyone else have these problems & what's causing them?
I AM AT MY BREAKING POINT!!!
Nothing but Narcotic pain meds give me ANY RELIEF and Dr's here won't treat me.
I am tired of fighting just so I can have some resemblance of life without a terrible headache ALL THE TIME!
SOMEONE PLEASE HELP ME!!!
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