How is alot of pain doctors that you talk to about Chiari all say that books say that pain mediciations arnt suppose to be prescribed to patients with Chiari Malformation. I have a 8 and 10mm, and am in Pain 24/7 without some kind of pain medication in my system. I am on vicodin 5/500 3 times a day but it isnt even helping that much. im 29 years of age, I dont do drugs or drink yet I get hit with the stigma that since im so young they dont wanna start me on stronger pain medications that I could be on over a long course of time.Its complete BS, ive been going to doctors for over 8 years now complaing of neck and head pain n it took 8 years to get this diagnosed. Now, they dont wanna give me something that can at least give me my life back. The cine MRI came back with no blockage but it was also done at the VA outta of Dayton Ohio and I had to go back because they MRI people messed it up the first time because they said they had never done one before. How to convice a doctor that you need something to get your life back. I dont work, I pretty much lie in bed or on the recliner day in and day out. Cant sleep at night even on 30mg on Restoril. Its just a complete joke how ive seen so many doctors Chiropractor, accupture, massage, rehab, ive tired everything. I even went to the ER yesterday with a Blood Pressure of 150/100 with pulse of 110 and they just give me a troadol shot but doesnt help. Its like doctors just dont get it.
I have been through the same thing with doctors! But I have never had one tell me that pain medication should not be prescribed for patients with CM. I think if they would have I would have got up and walked out. I too have been in pain 24/7 for the past 10 yrs. and wasn't diagnosed with CM until 3 yrs. ago.
I am also disabled and have lost my life due to chronic pain. These doctors do not understand. All they see when someone in pain comes into the office is "ADDICT"! There are some doctors that do care but they are few and far between. That is one of the reasons I'm moving out of this state and going back to Texas. For the last year I have had to gain the trust of my doctor in order to get my meds and it makes me feel like I'm the one doing something wrong.
Are you seeing a pain management doctor? Have any of those doctors talked about fixing your neck?
My CINE MRI showed no blockage so the nureosurgeon in Cincinnati VA didnt even see me face to face just said we will do other MRI in a year. Makes me laugh. I was outsourced of the dayton VA and am seeing a Pain Management doctor now. Ive had 3 doctors now tell me that Narcotics arnt the thing that helps with Chiari. Even a neurologist told me this at the VA. I dont know if this is the book now or what. Something to do with over long term slowing your breathing at night and causing your heart to stop. I just dont know where to turn. Ive never failed a random drug test or anything to make these doctors think im a addict. I just want to be able to live a normal life. Im constantly in a pain level 8 or 9 daily. Cant sleep. Blood pressure is always up because of the pain. I read stories of people on here that are oxycontin etc. All im asking from these doctors is to increase my vicodin from 5/500 3 times a day to something stronger and its like pulling arms. If your no a candiate for surgery what else is there to do.
You sound like so many others on this site,I have been 27 yrs. before getting any help.I just had surgery 9months ago and it has given me my life back.The thing I recommend is find a chiari specialist if you can travel to get there,with my situation the mental anguish is as bad as the surgery,do your homework on line and find a specialist in the chiari field or it can take 27 yrs. to get anything from the reg docs.
Hi Bryan,
I agree it is sad and it sucks for those of us and many others that truly need pain medication just to some what function during the day. My NS would not prescribe ANY pain meds after 2 weeks post op!! I was still in pain and still am at 18 weeks post op. Thankfully my NS is 2 hours away and my PCP has been doing my post op care and I have been a patient there for 10 years. So she still prescribes me Lortab 10/500 3 to 4 times a day. Now the problem is getting them filled at Walgreens.. yes I could go other places but I prefer Walgreens. Walgreens here in Indiana at least have made national news about their fines on giving pain meds so now every month they have to call and verify the script AND a DX code! Hearing "brain surgery" wasn't even enough for them to refill my script. So I will be now switching pharamcies after 10 years too.
Keep at it, and find a doctor you are comfortable with.
Hi Bryan,
I have been ill since 7/2001 and been on every combination of medications possible for pain mgmt. I have and do see pain mgmt specialists that are spine specialists also. I had to have my C Spine rebuilt at the same time as my CM surgeries because I was diagnosed too late and almost became a quadriplegic.My pain is never below an 8 on a 1-10 scale with pain mgmt. I have a headache that started the beginning of May. I know chronic pain.
What type of Dr is prescribing your pain medication? Have they recommended any nerve blocks, ablation or any other therapies or treatments? When was you last MRI and was it of the brain and c spine? Do you currently have a NS?
I also have two other friends that were in accidents in Iraq that I met through this Forum and that is how they were diagnosed with their CM. I would be happy to introduce you.
In 9/ 2005 I started the path that lead me to taking high doses of narcotics. I found over a period of time my sleep patterns were destroyed and my natural pain blockers stopped working. It is a vicious cycle. I am in no way against narcotics or pain mgmt. It is needed. I know what it's like to hurt so bad you can't think or function, not just for a few hours but for days, weeks and months. To throw up because you hurt so bad. To try and get a Dr. to understand and provide appropriate treatment. The frustration is overwhelming in itself. Then trying to have any kind of life at all is almost impossible.
We have a Member that works as a Nurse Practitioner at a VA. I can ask her for assistance. You need to been seen in a comprehensive pain clinic that has treated CM patients. I have found a broad spectrum of medications work better to control my pain than just narcotics, NSAIDS, Cox2 Inhibitors, muscle relaxers or other types of medications alone. I believe we can find you help. Please don't feel like you are alone.
Most Dr's do agree CM and related pain can't be controlled long term solely by narcotics. You wouldn't have any quality of life. In order to stop my pain I have to be on IV Dilaudid or Fentanyl and you can't live like that. Pain can be controlled but it takes a good pain mgmt Dr. and a lot of trial and error. Then I still have emergency medication for bad times. I wish CM was better understood so we can have better treatments.
Tracy
Hi Bryan,
I have been in pain for a long time as well. I was (incorrectly) diagnosed with fibromylagia at age 10. I am now 24, and my pain and symptoms have been progressing rapidly for a few years. I had to stop working. Just this March I found out that I had a syrinx in my spinal cord. The doctors did not want to treat me because I had no herniation of my tonsils. They told me it was post-traumatic, not Chiari.
Then I found Dr. Tew, a Chiari specialist at the Mayfield Clinic in Cincinatti. You should research the Mayfield Chiari Center and give them a call. They spent an hour with me on the phone the first time I called. Dr. Tew reviewed my previous MRIs, and I heard back within a week. He found that I did actually have a slight Chiari and ordered the CINE MRI. I scheduled a visit within a week, and he agreed to do surgery. The CINE MRI showed a slight blockage of my CSF flow. He was not positive that the Chiari was definitely the cause of my pain, but agreed to do the surgery anyway. After surgery, he told me he was positive that the surgery was needed and felt that I would see results from the surgery. I am still recovering from surgery, but I believe it was worth it.
I know it gets expensive trying out doctor after doctor, but I highly recommend that you at least give them a call and ask for Dr. Tew to review your tests. He treats hundreds of Chiari patients every year. Maybe don't send the CINE MRI if you think it could be incorrect.
I hope you are able to find a doctor who will treat you and one day have no need for pain relief. Until then, I hope you find a good pain mgt doctor who works with you to give you some comfort!
How sad is this?? I am writing this in secret! I was told by a family member to not go onto this forum because it was only filled with negative people who would just bring me down. After one year two months post-op, accupunture, PT 3 days a week, Spinal Taps, constant blood work, and still I wake up feeling hung over with a headache. I was exposed to very damaging chemicals in Iraq (2007) and finally have a doctor that’s all over it, but to put all the pieces of the puzzle together it is taking a very long time. Aa like much of you my CM1 was found by accident. So this is how I do it…I take pain meds when I need to. When it gets to the point where I need more to kill the pain I go into my shell for 4-5 days and basically go through withdrawals. I am totally worthless during that time but after, I am back to square one with only having to take minimal pain meds. I know this won’t last for long but I have no clue what else to do. Like I said, I’m doing this without saying anything to anyone. Don’t take this the wrong way please, but its nice to know I’m not alone. The past two years have been a nightmare. You all are the only ones who really understand. I have Carte Blanche to any amount and any kind of pain med…that scares the hell out of me! I don’t drink or do drugs. I am being medically retired from the military after 19 years of service and 7 tours of duty. I have a Special Forces tattoo that says “NEVER QUIT”, between that and the Almighty God, they are what keeps me going! Believe me, the thought of just ending it has crossed my mind, more times than I can remember, all I can say is…when it hurts, treat it. When they won’t listen, go someplace else. When no one understands, come to this site. When you just don’t give a damn anymore, go to God!! I’m praying for everyone, keep the faith and God bless! I love you all!!
Shay
This makes me cry reading all this, out of sadness and comfort to know Im not the only one going thru this.I have been in pain for a least 15 years and only diagnosed 18 months with CM III. They want to do several surgeries to correct and Im scared to death. I have live with the pain for so long I dont know what normal and pain free is. I have been on pain meds for so long that now they just take off the edge, so I can get thru the day. I go thru the same stigma that all of you are going thru and I just want to shake my doctors and wish they could live in my body for 1 day, to show them, this is real and not in my head, especially if you have to go to a new doc or an ER, and they are running to there computer to get online to see what the heck your talking about. More doctors need to be educated about CM, and to know that those living with this are not drug seekers, we are people that are in pain and our lives are affected by this condition and need a way to live and function as normal as possible. I thank all of you here and wish you all painfree days. Tammy
On the subject of pain meds, I have a question. I am about 6 wks away from my surgery and I am wondering what meds are usually given after. I know it will vary....
I am very wary of pain meds and would like to be on as little as possible. I am really sensitive to them and don't like the way I feel on them - I would rather the pain, but I obviously I know nothing of how bad the surgery will be.... I also have a brother who is a recovering addict and he used to steal from me after my C-sections a couple years ago. So, that factors into my general fear about them. I had another pretty serious, non-CM related surgery in early June and used only Tylenol. I wasn't fun but at least I felt better about it.
Are there any suggestions perhaps about meds I might for or ask not to have? Thanks!
thebeach1212 said:
Hi Bryan,
I have been in pain for a long time as well. I was (incorrectly) diagnosed with fibromylagia at age 10. I am now 24, and my pain and symptoms have been progressing rapidly for a few years. I had to stop working. Just this March I found out that I had a syrinx in my spinal cord. The doctors did not want to treat me because I had no herniation of my tonsils. They told me it was post-traumatic, not Chiari.
Then I found Dr. Tew, a Chiari specialist at the Mayfield Clinic in Cincinatti. You should research the Mayfield Chiari Center and give them a call. They spent an hour with me on the phone the first time I called. Dr. Tew reviewed my previous MRIs, and I heard back within a week. He found that I did actually have a slight Chiari and ordered the CINE MRI. I scheduled a visit within a week, and he agreed to do surgery. The CINE MRI showed a slight blockage of my CSF flow. He was not positive that the Chiari was definitely the cause of my pain, but agreed to do the surgery anyway. After surgery, he told me he was positive that the surgery was needed and felt that I would see results from the surgery. I am still recovering from surgery, but I believe it was worth it.
I know it gets expensive trying out doctor after doctor, but I highly recommend that you at least give them a call and ask for Dr. Tew to review your tests. He treats hundreds of Chiari patients every year. Maybe don't send the CINE MRI if you think it could be incorrect.
I hope you are able to find a doctor who will treat you and one day have no need for pain relief. Until then, I hope you find a good pain mgt doctor who works with you to give you some comfort!
Avoid chiropractors they can cause more damage and cause heriations to grow
Your case sounds much like my own,I was concidered borderline not much to see on the MRi. I had a specialist that knew the herniation is not the correct measurement for diagnosis.I have lately been reading some research on chiari0 and I think that might be promising research.My chiari was not very visible but it had been very devastating on my life.When my NS was through with the surgery he found that I too needed decompression which consisted of craniectomy,laminectomy,and duraplasty,the brain stem was grooved from tonsil pressure.It has been 9months sense the and my life has been changed for the better,keeping my fingers crossed that things keep moving in the right direction.I say Thanks be to God and a NS who knew what he was doing.Hope your life is forever changed and you continue to heal
Bearzy,the med.I was prescribed was OxyContin,my surgery was not as bad as I thought it would be.I am 9 months out,as of now am taking Tylenol for some other issues but the meds given to me to bring home is still in my med.cabinet.I used it about 4-5 days. I can say I’ve taken lots of meds but have tried to stay away from narcotics.I will admit that I’ve taken double Tylenol and other over the counter drugs because I know there’s many getting hooked.I know that when this is not diagnosed people have to live as well as they can and end up getting on narcs.I wish you the best on your up coming surgery maybe your’s will be easy as mine,hope so,keep us informed.
I had my surgery Sept 27, 2012 and was pain free for five weeks. Since then the pain has really gotten bad and I am a person that doesn't do well on drugs, so I have been trying other things. One is touch healing where your own enery is used to help heal and that has helped. It doesn't last but a few days but i get relief from the headache and neck pain, but it hasn't been enough. Monday i went and had my nerves burned (its called Cervical Medial Branch, Rhizotomy,Radiofrequency Rhizotomy), I first had to have injections in the nerves with a drug that was short lived, then again with another drug that lasted a little longer, if you feel better with those ijections the burning has a good chance of working. I felt so good after the 1St injection i would have had the burning the next dayif I couuld have. I feel great but my neck and shoulder look like a bruised pin chusion. I have enery no headache and pain in my neck the bottom of my feet don't hurt, I am very happpy right now. I am using ice and ibuprofen. I am so happy I did this I saw neurolgist last week and the drugs they wanted to put me on for my headaches was not my ideal of fun. But good luck to you all on what you decide to do for yourself.
This is all so sad to read. I have had pain all my life, and went from doctor to doctor. About 15 years ago, I was finally diagnosed with chiari, and from there it's been one diagnosis after another. I do however, have a great pain specialist, neurologist, and rheumatologist and consult every two years with a neurosurgeon. Yesterday, I went to an internist for a simple physical which is provided under my insurance to check my cholesterol and do an EKG, and of course, with all his VAST knowledge about my issues, was ready to reinvent the wheel. I just took the drug samples he passed out and smiled, and left, and will throw them away. I'm just glad he didn't suggest physical therapy too. The sad thing is, I don't know what I will do if one of my doctors retires and would never move because I don't want to find a new doctor. I take pain medication and am thankful that it helps me function. I couldn't imagine if I had to start all over again.