scared looking 4 advice, tips, cure!!! heres my story!

[Jaimelyn0863]

I had cervical decompression lamonectomy c1 in 99 after having headaches that lasted months.... I have juvenile osteoperosis and broke many bone since age 4 at 10 i fractured T7 and soon after i started getting migraines it took 2 more years and over a dozen doctors before anyone did an mri and the rheumatologist was looking for cancer in pitutatary gland and they found I had ACM1 i was under the care of a neurologist for that and peti mal seziures but they kept giving me more and more drugs none worked for my headache and i was high all the time. at the age of 14 I was begging him to just do surgery and fix it but he said i didnt need it! I had a headache that lasted about 40 days each week my mom took me to the er they gave me massive amount of demorol & phenergan and that would make it stop but this one just kept coming back... 3rd time I went back I asked them not to call my neurologist as he was oppose to the idea of surgery.... so this time they finally ordered another mri. they called in a neurosurgeon I had surgery 3 days later my headaches still came on here and there but the er would give me the same meds and it would stay gone... the longest they would last might be a week before the trip to er would fix them with a shot..... now I got into a car accident after spending a year without pain meds for the 2nd time in my life and i broke my back in four places and my headaches are back with a vengeance.... after going to the er 7times they tried everything narcotic and non narcotic and did a spine tap which i was told i could never have that just made everything worse... after an 12 days of agony they therw everything and the kitchen sink in... then 4 mg of delodin it finally went down to a managable 2 on pain scale...after much needed sleep it left that one was in may....im back in pain managment on a few things small dose of morphine until my back heals.... so this time theres already pain meds in my system... I got this headache on july 17th the er tried the same things as before wanted to to a spine tap and admit me i left ama.... the spine tap is not a option after the damage the last one did!!! i went back a few days later they tried the same thing again then admited me and watched me take my own meds for 4 days the only thing they did were trigger point shots numbing my head neck and shoulders but 2 of them lumped and my pain has gotten worse since they discharged me the next morning! they say I'm drug seeking I just want to get rid of my headache and i feel like no one understands the pain im in!!! I looked up pain management treatments and asked them to give me a small amount of ketamine they said its not legal go to mexico... my doctor dose those shots in his office unfortunately i only had county insurance pain managment doctors are not covered and the neurosurgeon office hasn't made my appt yet even thou i've had the referal since febuary.... so the shot will cost me $600... has anyone with ACM had this done and did it work???? I read alot about it and it sounds like i would have no pain for 6months and it helps with bipolar disorder too.... I  just want to find somthing that will work and last and i dont want to be high forever!!!! I lost my mom to the same drugs most doctors want to put me on... and i have no pain tolerence since ive been on pain meds since age 4... so I'm despreate!  
If anyone can help me or you know somthing that might be effictive please let me know thank you ....
Jaime Lyn

[RheaAnn]

A hardship waiver is something that some doctors offices participate in. My doctor found out I was in school, so that is sometimes proof that you cannot pay for treatment, so he was able to write off the expense for me to have the TENS. It's basically if you cannot afford it, and can prove it. I'm not sure of the restrictions and qualifications, but it doesn't hurt to ask.

I had an occipital nerve block. It is to block sensory signals. The occipital nerve is a sensory nerve, so it senses pain and other feelings. That one nerve gives pain in the top of your head and under each ear. The blocks did not work for me because my pain was not derived from the occipital nerve. I had a lose screw on my titanium mesh plate.

[selmaS]

  Since ur eyes r affected it can not only be ICP  and Chiari but EDS, and here is a link to a list to take to ur eye Dr to look at-
http://www.medhelp.org/posts/Ehlers-Danlos-Syndrome/-If-u-have-EDS/show/1802771

Yes, it is in the Health Pages or u can use the Search this community feature to locate the thread...here is a direct link-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

Keep in mind this list may have some Drs that r not true chiari specialists, this was compiled by the members here of their drs....u have to research, see a few and compare to find the right dr for u.

[Jaimelyn0863]

I want to thank everyone for taking time to read my life story. I didn't know there were specialist my ns quit 11days after my surgery and he was only 1of 3 pediatric ns in Florida familiar with acm so i never found another doctor who i haven't had to explain it to.... the shot worked@80% my back&body feel better but i woke after 8minutes and my right eye has been hurting since.. pressure got so bad today i couldn't stop vomiting but i go back to dr today so i wanna see if he can try again? maybe they business didn't give me enough i only slept 8minutes should have lasted like 20-45. So i wanna see what he can do this afternoon...RheaAnn I've never heard of a hardship??? I'm not understanding??? But ill ask for a tense unit too they did help used my grandmas all the time..what is an optic nerve block?? Most of my pain is in 1eye. Well behind it anyway??just wondering if it would stop that? & Ill keep posting how this treatment is working! I'm from Tampa is anyone near by? Friends are hard to come by when they don't understand I'm not crying wolf I really don't feel good that often i think it'd be nice to know someone who knows what it's like to deal with this! Thank you all again! Selma do u have a list of the drs???? Viv i do agree a bit only thinking now maybe i needed a shunt.but My body's just weak I had my surgery in 99.not recently just re-injured my self in car wreck & the headaches got worse and more frequent! again thank you all very much... I was feeling very alone!

[selmaS]

  Hi and welcome to the Chiari forum.

I agree with Viv u deff need a true chiari specialist as there r far too many NS's that do not feel Chiari needs treatment and they also do not look at the related issues that may also be adding to ur pain...and I am not referring to ur obvious issues u had surgery for...but chiarians do have related issues  like a syrinx, disk, issues, sleep apnea, ICP, POTS, ehlers-danlos that can to how u feel and heal with surgeries.

We do have a list compiled of the members Drs, they may not all be true chiari specialists and u do have to reseach all Drs on the list as it is not a referral.

Know we r here to help and that u r not alone.

[Viva001]

It sounds like you need a Chiari specialist ASAP.
I'm wondering if you didn't have an extensive enough laminectomy (mine is my whole neck).
In the meantime, can you try acupuncture.  The Lidoderm patch or even biofeedback?

I hope you receive the help you need soon.

[RheaAnn]

I have not heard of the shot you are talking about. You are not alone in the pain boat! Many of us have been called drug seekers and given the run around. My pain management doctor gave me a topical cream mixed with a muscle relaxant, lidocaine, anti-inflammatory (maybe) and some other numbing agents. That worked the best, except i was allergic to one of the ingredients! I tried occipital nerve blocks without success, too. I also was given a TENS unit. That seemed to actually help. The only problem was my pain was in the back of my head, so I had to shave off small patches of my hair to stick the electrodes to my scalp. But I didn't care b/c I was hurting! Because it innervates the nerve, it also will stimulate the muscle, so it may be a good option for your back! and neck muscles, which are probably weakened by now from surgery and pain. Sorry I couldn't be more help! Also, ask about hardship wavers and if they do them for any patients. My pain doctor was able to write off the TENS unit so I didn't have to pay for it!