two years since surgery and things seem to be worst.

[head_hurtz]

I had surgery in may 2009 and i feel much the same as i did before the surgery. I go to the doctor every three months just so that i can stay on my meds( loratab 10 and robaxin) The meds help but i still hurt and the doctor does not give me enough pills to last all month  and he wants me to cut back on using so many( i take 3 tens a day and one robaxin at night) Just wondering what i should do to deal with all this pain and spasms. I also get depressed often and have angry outburst. Sleeping more than 4 hours a day really would be nice but then when i wake I hurt serverly. Is there any help?

[selmaS]

  There r new methods to get oxygen that do not include the C-Pap machines...check out novasom they do in home sleep studies and have allturnitives to the C-Pap.

U may need to find a diff NS that is well experienced with Chiari to review ur case....it could very well be ur Dr can not see what is going on as it could mean he missed something...

DO NOT LET THE CHIRO ADJUST OR MANIPULATE UR NECK !!! Sorry I had to get that in caps...those with chiari should avoid chiropractors especially those that do not know chiari...and if u must go, do not allow ne manipulations of ur neck.

It is possible this is chiari related, and u r getting brushed off...and it is highly possible that it  could be something entirely diff that r just missing.

Either way, get another chiari specialist to review old and new MRI's and go from there.

  "selma"

[sandy629]

  i had to change my primary doctor cause he got frustrated and didn't want to deal with it. he made me come in every 3 months too cause he " didn't   know how to deal with it."  why after surgery there isen't a doctor that can "deal with it ?"  or the surgeon can tell you where to go to get follow up care ?

[sandy629]

yes i have mild sleep apnea, but i cant use the c-pap because it blew my ear drum out.  i have been to many specialist and it always seems that they push me back to the dr. that did the surgery, and he acts like im crazy.he is sending me to a pain clinic which i have already been too. i have had the botox, the 16 injections in the head down the neck, ive had 2 series were they inject on each side of the head, i am now going to a chiropracter and he has never heard of chiari.  i guess i don't know how to express the pain too good, cause according to everyone i shouldn't be in pain.

[selmaS]

Hi and welcome to the Chiari forum.

I believe there is something that can be done and that something was over looked...I can be wrong, but I feel many develop ICP and that can cause many of the same issues u and others have mentioned....while it can also be from undx'd issues such as Tethered cord...a syrinx,disk issues...or rejection of the dura patch.

Sometimes it takes going to a new chiari specialist to get a diff opinion to find what is going on.

I pray u find a way to get relief and sleep.

Have u been to a sleep clinic to be tested for sleep apnea?

    "selma"

[sandy629]

  i live  with this every day .  i am not on meds, "im too young to be addicted "sleep is a memory, very pain full , and desperately needed.  i had the chiari surgery 3 yrs ago. and like you my symptoms got worse.  ive been to pain clinics, every kind of doctor, i went to my ent dr today because my ear hurts.  one dr. said i fractured my ear then he said i had otosclerousis now this dr say's oto doesnt hurt it;s nerve damage, and sent me to another dr in boston. the headaches, lack of sleep, the neck and back pain are unbearable. i have secluded myself because of all , im tired of hearing there is NOTHING  !!!

[head_hurtz]

wow that all is alot. I was diagnoised then told i needed the surgery. I have only had an MRI once and a cat scan done after surgery then realeased from the hospital. I only see my family doctor and he just makes me come in every 3 months so that i can continue to get my meds. I would like more info and where to find info on my situation thats why i joined this support group. It hurts just getting on the computer but if it helps to find answers then the pain is tolerable. Can you help me with a list of questions to take with me when i see my doctor.
I have not been able to see my doctor in 3 months due to no insurance. I was terminated from my previous employer and am now employed but my benefits will not start til september. since my surgery this passed two months has got to be the worst yet. I want to make sure that mt tumor is not growing but the MRI's are very costly.

[selmaS]

  Hi and welcome to the chiari forum.

It  is possible that u have another issue going on, some develop ICP post op and that can cause the pain u mentioned, have u been tested for this?...A LP would be done to test the pressure.Another possible explanation could be tethered cord...were u tested for this b4 surgery?...or what about  dura plasty, did u have a patch put in, some reject the patch if they have EDS....

If ur NS  or NL r not checking u for these things, get another opinion as it is highly possible for either of the above mentioned or something I do not know about.

   But do push for answers

   "selma"