I was diagnosed with CM in March of this year. I was at the point that I thought I was going crazy because I couldn't figure out what was wrong and my doctor wouldn't do anything. I finally told her to send me to a specialist and order an MRI or I was leaving her practice.
Well the MRI showed I have CM at 12mm. I have been reading up on it since then. I understand a lot more and realize what is happening but I still can't find anything that discusses what "my" severity level is. I went to a Neurologist and he said that none of the symptoms I have would be caused by CM and that I had A.D.D., we I blew him off in an instant because he wouldn't even try to discuss it with me.
I went to see a neurosurgeon in my area and he said I definitely have CM and it "could" be causing all my symptoms but couldn't give me a definite answer as to if the surgery would give me any % of relief. He said I needed to discuss it with my husband and decide if I wanted to have the surgery. He was very knowledgeable on the surgery itself and went into great detail about what would be done and recovery time etc... he just wouldn't give me any definite answers on the results.
My main problem is my husband is disabled and I care for him and my 11 year old son. If I don't need the surgery then I don't want to put them through all the ?? that we are going to have to face while I am down.
These are my symptoms:
In order of severity
Memory Loss (2 years, last 1 year extreme)
Dizziness/Vertigo (8 years extreme)
Double vision, last year
Headaches, 20 years
Fatigue, last year
Vertigo from position change or sudden standing, 8 years
Increased snoring and decreased oxygen levels when sleeping, worse last 2 years
Difficulty reading/focusing on text, last year
Depth perception problems, last year
Poor blood circulation/cold hands & feet, long time
Swaying/general imbalance, 8 years
Back pain, 25 years
Scoliosis, 25 years
Ringing in ears/hearing loss, not sure last year worse
Decreased sensation (numbness/tingling) in hands and face, last year
Slurred speech, only a word with sentence, last year
Migraines, 20 years
Pressure behind eyes, don't know
Intolerance to bright light, 20 years
Slight degrading change in motor skills (hands) typing and holding things, last year
Halos in vision, don't know
Pressure in neck, don't know
Intolerance to loud/confusing sounds, last year worse
Decreased muscle tone
Burning sensations on inside of calves and shoulder blades, last couple of years
Menstrual problems/severe cramping during period (until hysterectomy), 25 years
I guess you can see why I thought I was going nuts. Things just got worse the last year or two.
In Your opinion are your symptoms LIFE ALTERING? if you can answer YES, then you may want to consider surgery.
and your NS is right he can not and should not (in my opinion) give you a % of relief because each person is different, and each person recovers differently. and you must remember surgery is not a cure.
I was given no choice with surgery but a gf also diagnosed was asked “is it affecting your quality of life?” if as the above post says, if you answer yes then surgery is a significant consideration… Have a read through some of the profiles on here and you will be able to read different peoples experiences of surgery should you choose this option
Sorry you are suffering so...Lisa W and Melkay44 said it best....how is this effecting your life and your main thing in my opinion...your quality of life.
I am glad that you blew off that NL..I , personally , have had no luck with any of the NL's I have seen. I went for a consult with a NS and he too, like your NS , couldn't give me any real % of success...like Lisa said earlier..the NS really cannot give us that info b/c everyone is different.
I had my decompression done in 08 and had some good results..however, I must be honest...I still struggle with pain issues and other symptoms...
You sound alot like me when i finally found out what was going on. My ns knew about the chiari since Nov but only told me in March after him saying that the surgery fusing C5,6 and 7 should have solved everything and they acted like I was making up the symptoms actually going on. I went searching for answers and chiari kept popping up everything with the syrinx's I have but I said no way I can have that because a NS would know if that was going on with brain right? Never thought they'd know and just ignore it. I finally said enough in March when I found out and went searching for specialists and kept trying to get into Mayo in Rochester. Finally got in there and first apt is the 15th of May (coming up here fast now). In my opinion, you came to the right place. This page has helped me so much (even though when I talk to my mother-in-law she thinks this groups AA lmao) It's fun to confuse her. I told her I'm graduating with my AA and I belong to a chiari support page...so she combined them lmao!!!! This page has helped me see I am not going totally insane even though I'm losing my head!!
Thanks everyone, I guess that was the hardest part. Finding somone who understands! Unfortunately the answer is yes it is effecting my quality of life. The memory loss is getting bad it is affecting my work and I actually forgot to pick my son up at school. That was the point when I told my MD do something, I cannot take it anymore!!!!! I do customer service and sales at my job and have to drive around. It sucks when you can't read the street signs to see where you are going.
The parts I am not sure about, is the pain. The pain I currently have is mainly the headaches and migraines. But the memory loss, vision problems, vertigo are so bad that it's driving me insaine. I also think I may be having small black outs when I am in my recliner. I'll be watching something and then just wake up without having been tired and feeling a little confused. IF I have the surgery is there alot of pain from the bone removal that causes problems??? My NS said that he doesn't like to open the dura unless there is a major issue once he goes in. He said it could lead to more complications if not needed. He said usually the bone removal will take care of the issues.
After reading some other things I think I am going to request a Cine MRI first to see how bad the flow is of the Cerebral fluid. Is there anything else anyone recommends for testing before I make my decision??? Gotta feeling it's going to be a long bumpy road.
We all understand too well. I am so sorry you are having so many CM symptoms. You asked about how to tell your severity level. That is a very difficult questions. Everyone with CM is different. The size of your herniation doesn't matter. I have talked to many people with hardly any herniation that had no quality of life at all. The question you need to ask is "How much of your Spinal Fluid is being blocked. " Definitely get that CINE MRI. You are having major symptoms. I had the Decompression, Crainectomy & Laminectomies C1-C6 at the same time. My surgery lasted 16 hrs. My pain comes from Cranial Nerves being stretched open for too long. They patched my Dura with a Cadavere's Pericardium. I really think you should get a 2nd opinion if possible with a Chiari experienced NS. That makes a huge difference.
How do you find one?? I looked on a couple of sites and there is NOBODY in my area that I can find?? I am in Las Cruces, NM.
TracyZ said:
We all understand too well. I am so sorry you are having so many CM symptoms. You asked about how to tell your severity level. That is a very difficult questions. Everyone with CM is different. The size of your herniation doesn't matter. I have talked to many people with hardly any herniation that had no quality of life at all. The question you need to ask is "How much of your Spinal Fluid is being blocked. " Definitely get that CINE MRI. You are having major symptoms. I had the Decompression, Crainectomy & Laminectomies C1-C6 at the same time. My surgery lasted 16 hrs. My pain comes from Cranial Nerves being stretched open for too long. They patched my Dura with a Cadavere's Pericardium. I really think you should get a 2nd opinion if possible with a Chiari experienced NS. That makes a huge difference.
I will see if I can find one for you. Give me a couple of days.
Angelatoll said:
How do you find one?? I looked on a couple of sites and there is NOBODY in my area that I can find?? I am in Las Cruces, NM.
TracyZ said:
We all understand too well. I am so sorry you are having so many CM symptoms. You asked about how to tell your severity level. That is a very difficult questions. Everyone with CM is different. The size of your herniation doesn't matter. I have talked to many people with hardly any herniation that had no quality of life at all. The question you need to ask is "How much of your Spinal Fluid is being blocked. " Definitely get that CINE MRI. You are having major symptoms. I had the Decompression, Crainectomy & Laminectomies C1-C6 at the same time. My surgery lasted 16 hrs. My pain comes from Cranial Nerves being stretched open for too long. They patched my Dura with a Cadavere's Pericardium. I really think you should get a 2nd opinion if possible with a Chiari experienced NS. That makes a huge difference.
Thank you sooo much! I called my PCP today and asked for the orders for the Cine MRI. Haven't heard back from her yet but hopefully she will get them done soon. I am really looking forward to having something done, especially since today has been one of those multiple symptom days. The left side of my face keeps going numb then tingling.
Hey at least I know what's wrong! Thanks for all the help!
TracyZ said:
I will see if I can find one for you. Give me a couple of days.
Angelatoll said:
How do you find one?? I looked on a couple of sites and there is NOBODY in my area that I can find?? I am in Las Cruces, NM.
TracyZ said:
We all understand too well. I am so sorry you are having so many CM symptoms. You asked about how to tell your severity level. That is a very difficult questions. Everyone with CM is different. The size of your herniation doesn't matter. I have talked to many people with hardly any herniation that had no quality of life at all. The question you need to ask is "How much of your Spinal Fluid is being blocked. " Definitely get that CINE MRI. You are having major symptoms. I had the Decompression, Crainectomy & Laminectomies C1-C6 at the same time. My surgery lasted 16 hrs. My pain comes from Cranial Nerves being stretched open for too long. They patched my Dura with a Cadavere's Pericardium. I really think you should get a 2nd opinion if possible with a Chiari experienced NS. That makes a huge difference.
It sounds like you are having a really difficult time. I would definitely talk to another NS one that sees more Chiari cases. You need to ask how many decompression surgeries a NS has done. I've read where doctors haven't opened up the dura and some people needed a revision surgery afterward. I would do some research on that way of doing the surgery. The key is to find the right doctor.The surgery is a treatment not a cure so they can't say what the outcome will be. If you have the right surgeon at least some of your symptoms should get better. By how much and which ones you can't predict. A Cine MRI is a great idea.
sounds a lot like what I have. I slur when I talk sometimes. Hand movements are .... off. loss in muscle tone/strength. neck pain/pressure. pain and pressure behind the eyes and back of my head. Burning in the shoulders. It's a pain...lol... literally!! I also have Adult ADHD. I can have trouble focusing on things sometimes.
Scoliosis I don't have, but that can be the cause of your CM. My mom has scoliosis, surgery at 16, but as far as I know no CM.
Halos around things and light/noise sensitivities.... I have it. Some days are worse than others. I have memory problems. Hands, feet, legs arms face goes numb. Pain... lots of pain... dizziness, all of it....
There are things you can do to help with a lot of it. Coffee and ibuprofen help with the pain and pressure. Getting a lot of chemicals out of your house helps with the pain. We found that some of the cleaning products I was using were causing migraines. Preservatives in food can cause migraines too. Dark sunglasses for outside and light glasses for inside (there more blue)
I worked for Anthem Blue Cross and Blue Shield in Appeals, until I wasn't able to work anymore. They have a database of Specialists. A friend of mine is checking it for me.
Angelatoll said:
Thank you sooo much! I called my PCP today and asked for the orders for the Cine MRI. Haven't heard back from her yet but hopefully she will get them done soon. I am really looking forward to having something done, especially since today has been one of those multiple symptom days. The left side of my face keeps going numb then tingling.
Hey at least I know what's wrong! Thanks for all the help!
TracyZ said:
I will see if I can find one for you. Give me a couple of days.
Angelatoll said:
How do you find one?? I looked on a couple of sites and there is NOBODY in my area that I can find?? I am in Las Cruces, NM.
TracyZ said:
We all understand too well. I am so sorry you are having so many CM symptoms. You asked about how to tell your severity level. That is a very difficult questions. Everyone with CM is different. The size of your herniation doesn't matter. I have talked to many people with hardly any herniation that had no quality of life at all. The question you need to ask is "How much of your Spinal Fluid is being blocked. " Definitely get that CINE MRI. You are having major symptoms. I had the Decompression, Crainectomy & Laminectomies C1-C6 at the same time. My surgery lasted 16 hrs. My pain comes from Cranial Nerves being stretched open for too long. They patched my Dura with a Cadavere's Pericardium. I really think you should get a 2nd opinion if possible with a Chiari experienced NS. That makes a huge difference.