Post decompression pain problem

[Shelly2628]

My question is for anyone who has had the decompression surgery. I have Chiari 1 Malformation 20 mm herniation. I had the brain decompression with a laminectomy. After the surgery, I was feeling very hopeful. I wasn't having headaches anymore. Before the sugery I was having daily severe migrains, TIA (mini-stokes) numbness of legs and arms, black outs, loss of memory, balance issues. Well, it has been a little over a year and the symptoms are coming back. I have severe daily headaches, I still use a cane, which I did not use one before the sugery. I have blacked out a couple of times. My doctor has talked about another surgery, but I honestly do not want to do that again. I almost died in the hospital from kidney failure. They had me next to a lady with 2 broken legs, I was not in the neuro center with trainned nurses in that field at all. My doctor is giving me the run around for pain medications. She keeps referring my headaches to "migraines" I keep on correcting her telling her that they are not the classic migraines. I have a life long diesease were my skull is too small for my brain and it hurts like hell.

Any suggestions? Does anyone else have some symptoms come back after surgery? What medications are you on? Please help me out, my fellow chiari family.

:)

[Shane99]

Yes - if anyone takes any advice from these pages let them be;

* Don't ignore this. Whatever your doctor says, don't ignore Chiari or it's symptoms!
* Make sure you have a Chiari Specialist - not all Neurosurgeons or Neurologists are.
* Make sure you have MRI's - they are the only real way to diagnose this
* You are among people like you. You aren't alone in this.

[Hursty48]

I agree - if there was just one thing sticking out to me reading every post here it was - get another MRI AND another doctor.
Warm thoughts and best wishes
Sue

[Shane99]

Get a new PCP!

There can be only one captain of the ship. All your specialists (including Chiari specialists) may have important rolls to play, but your PCP is the person who is over-all in charge of your health. They need copies sent to them from anyone who sees you. And you need to be comfortable with this person, because surgery or not, she is the person that you'll see more often than everyone else put together.

Always remember that your doctor works for you. If she isn't doing a satisfactory job - fire her!

[Shelly2628]

I do have a PCP but she is the one giving me so many issues. She keeps calling my pain as "migraines" and she treats me like an addict if I call her for some pain meds. I don't get a rx for pain meds even though I am in pain everyday. I am in Wichita, Kansas and there is no Chiari specialists here in Kansas. I am currently looking into one in Aurora, Co. I have asked several times for a new MRI and all I get is the run around. I work and I have pretty good insurance. I have printed off several things of the internet to give to my doctor because it seems that she is not very informed about the Chiari Malformation. She still seems out of tune. I go see her on 12/2/08 @ 11AM and have more information for her. I am hoping to go over the information with her while in the appointment.

AHHHHH! The pain..... the feeling of hopelessness!!!!

[Shane99]

Hello and welcome to the boards.

Yes, a lot of people do have a return of symptom. If it continues (or maybe already) another operation may be necessary. You should have another MRI.

As others have said - and it can't be emphasized enough - Go to a Chiari Specialist!

Do you have a Primary Care Physician? Perhaps he/she can prescribe pain-relievers.

[selmaS]

HI....I have not had surgery yet, but was dx'd in Feb. '08....I know I have had symptoms for many yrs......sometimes we r dismissed by drs that r not well informed on chiari....even tho ur dr dx'd u make sure he is a specialist......all NS can operate, but u have a better chance with a NS that does chiari all the time......

let us know where u live so we can suggest a dr to check out.

Good luck
Godspeed
"selma"

PS- if u have a question u may get a better responce if u start a new thread....click on post a question......

[Shelly2628]

Sorry to hear about your DX. I also have a 4 year old and a 9 year old and I also work Full time. Things are starting to get tougher for me personally. I was dx with Chiari 1 witha 20 mm hernation. How much is yours, do you know yet? Are they talking about surgery? My hospital stay was longer than what I have read from others. I was in for 9 days. I had the surgery on August 4th and was back at work very very part time on October 4th. I did not go back full time til January. Things were great for a while after the surgery, for the most part. It sucked not being able to wash my hair for 4 weeks! YUCK!!! I had to sleep in a recliner for 6 weeks and I used a walker then a cane for a long time. I am just starting to really not use the cane. If I walk for a while or for a distance I use it, mainly because my right leg with tense up and not work and some to do with my balance. I have occipital neuralgia which I did not have before the surgery, but hey! I am not paralyzed! Whoooo Hooooo! If you are new to this website, I recommend that you look around. There is some very good information here. It helps to read about others and their issues and how they deal with the same things that you are.

It is helping me. I am fairly new to this site and will come back to visit often.

I hope you get other replies.

Take care and keep us updated.

[mandy31]

I was diagnosed with this last Thursday and im worried sick.  I have a lively 4 year old and work full time, can anyone tell me roughly how long the recovery is ie: hospital stay, how long at home?

[youngwife]

Shelly,
RUN, don't walk to a new neurosurgeon.  Preferably one that is actually a Chiari Specialist.  You are right, you do have a life long disease (or condition), and your skull is too small for your brain.  BUT, that doesn't mean you have to live in pain, and it doesn't necessarily mean another decompression....it might.  But, I think if I were you, I'd want someone whom could actually recognize a Chiari headache, and not call it a "migraine"!!   -.-

That's my best advice,
Rebecca