Recurrence of Chiari malformation

tHANKS. My own Doctors, who took over a year to send me to a Neurologist and then the wrong one and then othher years wait, tells me I have had the operation and therefore I'm cured. "What do you expect me to do about it?" was the comment. Thats why I was asking, as my Doctors surgery seem to know nothing about the malformation. I'll see if I can get hold of my surgeon . bypassing my GPS

Hi,

I had type 1 and decompression surgery 4 years ago. I have never been told that the surgery was to slow down symptoms.. I was always told that surgery would stop the symptoms getting worse and it may or may not improve symptoms. I was also told by a top neurosurgeon that If the problematic bone had been removed them how can it cause another problem as it simply isn't there!!! Does this make sense to you?

You seem to know a ton. I've had my surgery 2 years ago and I still have symptoms. How likely is it for someone to need another surgery? I hope I'm asking the right question my cognitive skills aren't what they use to be

My daughter has had four decompressions. I think it just depends on the person. She's had four decompressions with absolutely no success with her syringomyelia. Her tonsils were herniated all over again each time.

If they remove the bone and put a patch on it, that should alleviate the crowding- I've heard that some people have problems because there is too much room and the cerebellum can slide down.

Don't know how likely but there is a chance that the cerebellum could slide down. Which then you would need surgery to put it back in place.

I was decompressed 3 months ago on March 30, 2016 and my patch came loose from the dura they had to go in on July 11, 2016 to repair the patch. My neurosurgeon said the patch is not a permanent thing it depends on the person. He thinks there might be another leak and he will have to go another route if it does fail again.

Hi there, I just had decompression 2 months ago, but my surgeon did not put dura patch on it, he said that it is safer for me without it, apparently he done thi all the time. So reading this, I am now realised what my surgeon meant by it

I didnt have the dura patch either..my neurosurgeon was agaisnt it..

I think, you should see your doctor aas ap

Yes i will see my family dr next wk.. and see when i can see a neurosurgeon. They work fast here in Israel..the medical is good. So i will be ok. Just really annoyed..upset etc that after 7 yrs...its back..ugh..so not the right time.. its never the right time for chiari. Ive been having headaches..neck and head in a vice..breathing and swallowing problems..visual problems..exhaustion..and the other day my tongue was tingly.. so i recognize all this like a bad ghost of the past. I hope and pray you all will be well..

I guess it depends on what your symptoms are. Some doctors don't want to open the dura at all. But if you have CSF flow problems, they may have to go in and remove any scarring or adhesions that disrupt CSF flow.  

If your doctor didn't put on a patch, what did he do? Did he not open the dura? From what I've read, it depends on whether you have CSF flow impairment. If CSF flow is blocked, you have to go in and unblock it. If you can get by with just loosening up the area by removing bone, obviously that would be a less intrusive method. 

It depends on what is causing your Chiari. If it is caused by a blockage to CSF flow, the doctor may need to go in and unblock it- remove scarring and adhesions and cauterizing the tonsils. If you don't have blockage to CSF, they may just remove the bone to open up more space. My first Neurosurgeon wouldn't go into the dura. He felt that was too dangerous. He also didn't do an MRI cisternogram so didn't know CSF flow was blocked. I had to go through a bunch of tests until I finally had the MRI celle and found out the CSF flow was blocked. 

Dear Gabby,

Just be positive, first come first, health is important..dont forget raying though

Always am positive..and never forget praying. Hope and pray everyone will be ok...

I had my op 15 months ago, my NS did not use a patch either, he said the risk of rejecting it is far too great & of getting an infection, he said the dura will heal by itself. I had a small leak but told this is normal. This rectified itself as the lump went away. My dura was opened & I had a craniectomy  and laminectomy c1 & c2 & my tonsils were cauterised.......hope this helps some of you, I think it really depends on the NS caring for you, but it would appear the dura patch is not used as much anymore as techniques advance with our rare brain disorder!

I think so, my NS apparently was the UK no 1 expert, so worth the waiting. But I have not have the post decompression check yet, I assume he is prety busy

How did they know your patch came loose? What were your symptoms? I had surgery June 2, 2016. All was good for the last two months and then this weekend I started getting the Zombie Head and Dizzy again. I also had a patch. 

How could they tell? Did they do an MRI?

Hi Gabby, how are you doing

Not so great lately. Still waiting on my file from my US neurosurgeon to take to my neuro Dr here in Israel. Thank you for asking. My head and neck almost always feel like they are in a vice.. Can't relax them enough to sleep.. So I'm lucky most nights if I sleep an hr or two. Beyond exhausted.. But I have to work. The headaches are throbbing pounding pressure headaches. Getting the pin prick and stabbing nerve pain in my arms hands and legs again. Tho today I did have a better day then I have in many wks.. I guess cause I slept more then an hr last night. I think I slept 4 hr's straight... Only cause I took enough meds to knock out a horse.. Lol

How are you doing?

Hi, could you please tell me who your surgeon was? Thanks :-)

I was lucky John to get Mr G. Flint he is at the QE Hospital, we are still communicating now despite I am free drug and have started walking he even advice my gp to get me to management treatment which I am going for 1-2-1 physical exercise with my local hospital at Christchurch - HE WAS FANTATIC....his team also excellent - I am blessed you know - please ask your GP to refer you to him..you are allow to choose you know - your health is your responsibility - I am not trying to scare you off - the amount of people who still have lots of symptoms - read from this site is so scary..but then again due to I read and get information with this website (PATIENS) I got to know about Mr FLint - he is renownsed to the UK chiari field - he is expert on it

Could you please tell me your symptoms. I'm 8 weeks out and I have so much pressure in back of head and it feels like my brain is going to pop out. Had pneumonia after surgery...coughing all the time. Worried it affected patch. Getting ct scan couple days. Also dizzy. Surgeon is saying possible spasms but this isn't normal. They are not spasms. 

How did you know your were having trouble with the patch? I had my surgery April 18. Just returned to work June 5th and now I am having burning in my neck and swelling the size of a egg where (I think) the patch would be. Worried me and was just curious.

Hi Olita,

Perhaps it was due to your high pressure - hence you have that swelling - my NS done Lumber Puntured with eliminating that from happening - why dont you go to A&E and get them to arrange for your neuroloigst to see you. You do not want to leave it too long.