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Avatar universal

3 years post op decompression now with symptoms

My surgeon was not a Chiari specialist but a wonderful neurosurgeon. I did fine for almost 3 years. surgery was my only option, 22cm. I had problems for many years before diagnosed and then I waited until  I was so confused and walking into walls, staggered like a drunk with most of the chiari symptoms. The past 3 weeks have beenn confused when trying to do anything that takes concentration- my checkbook for example. I feel like I need somone or something on my right side to hold or be able to grab on to. Am now shuffling when I walk. Pain at the top of where patch was placed. So far CT & Mri's of brain and c-spine are fine. Saw PCP and he put me on Lyrica after my trip to the ER.  Seeing neurologist tues.  Does this make sense with post chiari surgery?
19 Responses
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620923 tn?1452915648
COMMUNITY LEADER
Hi...I am glad he was knowledgeable and  able to give u some relief.

A massage sounds good for me right now too : )

take it easy and I look forward to the updates : )

"selma"
Helpful - 0
Avatar universal
I did break down and go to the chiropractor the other day.  Big difference in my balance after he adjusted my neck some. I  explained to him about the Chiari and he said he had another patient that was post decompression. He understood my concerns and was very gentle.  He adjusted my neck some and my balance is much better.  I had a message the next day and today I had nerve blocks in the posterior fossa and finally have some releive of the neck pain and head pain.  
Will have my shoulders done next if they continue to bother me but right now I feel pretty good other than being tired from not sleeping well because the back of my head hurt so much.
Will keep you updated
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
This is my concern that there is no care after ur 6 month post op...granted u only see the NS if u r going to have surgery or for him to check the surgical site...we need NL's that know and understand long term effects of chiari and post op care!

U do have a fellow member back in NZ u may want to meet up with...clintsmum...her name is Charolette and a very nice woman trying to get awareness over there.

Too many drs feel we r anxious, or depressed...and r too willing to hand off pills to quite us down.....

I know I must have asked u b4, but r u sure u don't have ehlers-danlos?...I had oozing up until 11 months post op...it got to be less and less and I understood it was bcuz I am a slow healer...and if it was internal stitched that makes more sense in that those with EDS have a higher  rejection rate....

"selma"
Helpful - 0
1281936 tn?1276557070
My follow up care has been non existent except for me insisting on seeing NS for the 1" area of my incision that didn't heal for 6 months because bits of internal dissolvable stitches kept oozing out. Same thing happening now again 4 inches higher up. I haven't even bothered calling NS as I know he will say in his threatening voice "the only fix for this is for me to shave yr head again, open up your scalp the whole way and search around for more stitches. Is that what you really want . . .??" I'm going home to New Zealand next week and that's NOT what I want!
I have a very competent caring GP but he knows nothing about Chiari. All he can do is refer me back to NS. Neither dr. will accept that my hand tremors are Chiari related, even when prior to surgery I quit all meds. and the tremors remained . . . NS says he thinks it's because I'm "nervous" when I visit him. LOL, I'm not nervous, I'm furious ;)
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
This seems to be the biggest issue as a NS does not follow up on how we do after surgery symptom wise...really they r more concerned with how the surgical site heals...they do a MRI to see if the CSF is unblocked, and to them it is a success...regardless on how we feel...or what we r able to do.

And NL's...just don't get it at all...we really need to find them for the after care that know about chiari and the after care...we really do not get that.

"selma"
Helpful - 0
1281936 tn?1276557070
I wish one of the many experts I've seen had told me not to jog, b4 or after surgery. My NS in particular said it was perfectly fine to do. Even when I told him my symptoms improved when i stopped jogging he just kinda shrugged his shoulders in a non comital way!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
So, ur neck is too small?...it is an odd thing...I was told those of us with chiari may have other areas considered small...such as my nose is very small , thin...to the point I am a mouth breather...my parents had my tonsils and adenoids removed when I was 7....it didn't help.
My nasal passages r small..so, a small neck may not be too far off....

I just am not sure it is all of ur issues and none being chiari ....not sure about that.

Good for u no chiro and no steroids...very good!!

I pray the neuro u see in July is able to help or offer more info.

"selma"
Helpful - 0
1179332 tn?1297478990
That could make sense...I feel too like my muscle issues may be causing my headaches as well. I can actually push on a knot in my shoulder and I feel the pain slice through my head. I have pain all the way up my neck today, across my temples and my scalp is tight. I am on Lyrica and it hasn't done anything for me..I was on neurotin b4 and it did help more but the side effects were worse (I was a living zombie till noon each day) and the neurotin would wear off by 3..just in time for when my kids came home. I can't take either drug in the day b/c it totally wipes me out and makes me severely dizzy.

I hope you have better luck with it!
Carolyn
Helpful - 0
Avatar universal
saw neurologist today. He thinks it is from severe muscle tension in my shoulders and neck causing head pain.  I didn't have any shoulder pain until they started pushing on pressure points. He said my shoulders are not even and my head protrudes out to far causing muscle spasms and making it feel like the Chiari is acting up.  Also told me my neck is "too thin".  That was a first.
Put me on Xanaflex, Amitriptiline 10 (for sleep which has been poor) to continue Lidoderm patches, Lyrica (which my ins just called to tell me they denied it & I needed to try Neurontin first) To continue massage and wants to do trigger point inj in my shoulders and neck.  
wants me to see a chiropractor but am not letting anyone jerk my neck around at this  point.  Wanted me on steroids and I said no- hallucinations.

Will see neuro surg 7/9, by then conservative treatment should help if neurologist is correct. If not will then push for cine MRI.  
What he said seemed to make sense. What do you think?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi...u had the PFD surgery, but not one for TC?

Were u checked for a syrinx?...pusedotumor cerebri?

And it is possible to need a re-do of the PFD...it all depends on how the surgery was done. U stated the NS was not a chiari specialist, so, something may not have been done that a specialist would have....there r several types of surgeries performed for chiari...endoscopic, PFD, and I can't remember the term, but it is less invasive as they do not open the dura.

Do u know which u had?

Scar tissue can develop and also cause some of the issues to crop up as it can block CSF also.

I pray u have a good appointment today : )

"selma"
Helpful - 0
Avatar universal
I did have decomp surg 8/08. Neuro appt this morning
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi...9 months post op and jogging to me is  a NONO only bcuz we r told it can take up to 2 yrs to fully heal...so if u r not healed and u jog, u r making ut brain bounce around inside ur skull.....even bumpy car rides and ones about an hour can set off a HA for me that lasts a few days...so do go slowly with activities after surgery and b4 to avoid the after affects : )

"selma"
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi...well u have not had surgery yet, but tailbone pain and diff sitting could indicate a tethered cord...do u know if u have a sacral dimple?

DO u have bladder issues as well?...ever find urself pushing to eliminate water?.....u may want to have a urodynamics test done on the bladder.

I understand slouching while sitting feels so much better if u have TC bcuz it is constantly pulling down.

There r questionnaire's that can help ***** if u may have TC.

Also, did they check for a syrinx as well?

"selma"
Helpful - 0
1179332 tn?1297478990
I am on Lyrica too and just had a post op MRI, I still haven't heard about the results. My pain never really went away though after surgery but I did see some other improvements.

I agree with activity possibly causing a flare up but it doesn't sound like you've done something drastic..

Sitting up in a chair is very difficult for me..my legs go numb and my neck and back will really start to hurt all the way up to the back of my head.

Have you seen your NS during all this? If not, I would request an appt...I think you would be better off getting a surgical view of things.  I think the best thing is to come in there as calm as you can and just point blank list the things that are happening and make it clear that you need to get down to the cause of it.

I don't have an option of a chiari specialist around where I live either so I understand where you are coming from...

Good luck today
Carolyn
Helpful - 0
Avatar universal
I wish I could think of something I have done.  I sit for my job but get up often. I like to walk, had walked a few miles several weeks prior and possibly that did it. Now when I try to walk without my knees bent some I feel like I am going to fall over.  Sitting correctly puts too much pressure on my head, working is out of the question at this point.
Just trying to towel dry my hair hurts the back of my head and anything that takes concentration takes 2-3 times longer than it did before.  
My family is very supportive and I am trying to keep a positive attitude about this hoping neurologist can help me out tomorrow and give me some answers.  I just don't know what all to ask him.  Anyone have suggestions?  Thanks to all of you for everything.
Helpful - 0
1281936 tn?1276557070
Did you start or re-start doing anything physically different in yr life before yr symptoms returned?
Any bumps?
I re-started jogging 9 mths post op. with the permission of all my drs. A couple of months into it many of my symptoms returned. I'd also been hit from behind by a random wave while playing in the very calm surf with my kids in January.
Went back to NS who didn't think jogging was an issue. MRIs all came back fine. I discontinued jogging due to the hot weather and within 2 weeks most of my symptoms cleared up again. Nothing scientific to prove it, but it seems like more than a co-incidence.
Tina
Helpful - 0
Avatar universal
I did have a lumbar MRi a few weeks ago and nothing was said about tethered cord.Will take the disc with me to appt
My syptoms are worse when I sit at a desk the correct way.  Problem is I do medical transcription, work for my PCP.  Have not worked for 3 or 4 weeks, can't sit up straight. Wouldn't even consider driving.  

I just hate the thoughts of putting family through this again.  Before    Chairi was finally found I had years of headaches and I hope the neurologist can shed some light on this.  There really is no chiari specialist near where I live and am thinking maybe that would be the best place to go.  Will ask at appt. where nearest specialist is.

any other questions I should ask specifically?  I don't want him to think I am depressed or  have some sort of "mental" issues.  Sometimes am just so confused and can't think straight.

I am pleased  I got a reply quickly - so many people just don't understand. Thank you.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

I am sorry u had only 3 yrs feeling better, but many do not always get that much relief.
Do u know if u were checked for tethered cord?...if not and u have this it can cause the tonsils to re-herniate....and then u get symptoms all over again.

It can also be scar tissue from the first surgery.
At the NL visit on Tuesday, ask about getting a MRI to see if u have a CSF blockage or if u could have TC.....u also could have developed a syrinx....

Surgery does not always resolve all the pains and symptoms, there is no cure...only a way to slow progression.

I pray the NL can offer some suggestions for u.

Please keep us posted.

We r happy to have u join our little family here, so sorry for the reasons u had to seek us out.

"selma"
Helpful - 0
1093617 tn?1279302002
MEDICAL PROFESSIONAL
Hi, Thank you for your question. This is quite commonly suggested treatment option after such surgeries, although your treating doctor is in a best position to let you know about this. Usually, treatment of Chiari malformation depends on the form, severity and associated symptoms. No treatment is required in asymptomatic cases other than regular monitoring. Symptomatic patients may require surgery (posterior fossa decompression surgery). The requirement and pros and cons of surgery in your case should be discussed with your doctor as he knows the severity of problem. Hope this helps.

Helpful - 0
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