I have found in the past few years, that some of the best therapy for me when I'm feeling blue or down.... or just plain hurting, is to lend a little gem of wisdom to someone who might find use for it. In that line, I'd like to offer some "Chiarian Tips" I've found useful in dealing with the effects of ACM in my life. (In no way shape or form do these tips substitute for any advice from your doctor or therapist).

1. The shower is your friend!!!! - Make them hot and make em long. Good for relaxing, and loosening stiff muscles.

2. Although sometimes geeky, "pool shoes" work wonders. Those cheap loose weaved canvas flats that are waterproof (some come in plastic types, but those hurt my feet, personally). You can wear them around the house, outside, and even to give stability while your in the shower.

3. Socks, not just for your feet - Numbness and tingling in hands may be reduced by keeping hands warm while sleeping, socks over your hands keep them warm at night, even if they creep out from under the covers while sleeping. ( plus their normally cheaper than gloves or mittens )

4. Brooms as levers - Suffering with weakness in my hands and arms, I was told that using a broom handle as a lever made it easier to open the refrigerator door.... it WORKS!!!



Will be adding to this as I think of them, but right now beddie bye calls. If ya'll got tips, go ahead and add them as well. Knowing is half the battle .

God Bless you all!!!!

Dawn

5. If considering surgery - Remember that surgery is not a "cure" for ACM. In many cases it can and does dramatically reduce symptoms. However, as with all surgery, there are risks, and side effects possible. Be sure to weigh the pro's and con's carefully. But at this point in time, once diagnosed, you are a Chiarian for life.

6. Dont be afraid to ask for help. If ya got kiddos, USE THEM. They actually get a kick outta being "big kids" and helping Mom or Dad. Course sometimes they balk, but they sure do enjoy any chance to brag to other relatives *winks*

Morningbroken, I just found out this past Friday that my son has CIM. Actually he suffers from PRP which is a rare skin condition. His derma found the CIM because he was testing him for a spinal disease that the medication causes. I have not spoken to a surgeon. We are schedule to see one on Dec. 31. The information I have collected is that he will not have surgery because he is not having any signs. He does have headaches, his vision has decreased in the past year, for about two years he has complained about his knees, ankles, and bottom of his feet hurting. He admitted to me last night that he does have dizzy spells. Do you think these are all signs. The information I have found explains many signs and these are a few. I am so aggravated about the whole process but have spent the entire week trying to find out as much information as possible.

Another issue is for four years I have been having headaches, dizzy spells to the point of black outs, legs ache and feel like jello at times. I even feel like I am going to fall because they are so weak and hurt so bad that I have too stop and take the weight off of my legs for it to ease up. Over the last three months the pain in the legs has started keeping me up at night. I ache so bad through the night I cannot sleep. I have had trouble sleeping for years but it is now getting worse. My doctor recently ran exrays on my lower back and found a mass. He sent me for a CT and it showed nothing. They called me yesterday and had made the decsion to send to a neurologists. Once I told them about my son, now they have decided to do a MRI of my C spine. I feel stupid for them thinking I could have it also. I did not feel this way until four years ago which at that time I had the castro-bypass. I really feel that the surgery and losing so much weight has caused the problems I am having. I was extremely active in school and never had any problems. I feel stupid for the doctor wanting to check for CIM but I also read on the internet where a daughter was showing the same signs as her father and come to find out they both had CIM. I just wondered if you were willing to give me a little advice. I am going nuts, and cannot get any answers until we go to the doctor for my son.

I so feel for you and your son. This post hits close to home, as my son is 13 (will be 14 on the 23rd of this month, Dec.) Actually the verdict is still out on whether or not Chiari is heriditary. From what I've read over the past few years, they (specialists) can neither confirm or deny how genetics may or may not play a part. My son actually recently had surgery to correct a nystagmus (which is a common occurance in/sign of CM). He also has frequent headaches (mild) and some balance issues. All of these I grew up with as well as a child, teen and through my 20's.

Let me start of by re-stating that I am only a survivor of ACM, I am in no way, shape or form a doctor, specialist or anything else with credentials. (Although I can cook the best porkloin in West. KY ) However, as a mother and post-op Chiari surgery patient, I'm more than happy to discuss worries, fears, trials and tribulations with ya..... and of course give my opinion on the above stated things, which yer more than free to take or leave as ya see fit.

I would not change having surgery if I could. I consider it a complete success, my NS was absolutely WONDERFUL, my neuro is a darling. However, my recovery time was over 2 months before I began feeling normal again, the amount of pain was over-whelming the first couple of weeks, even with pain meds, muscle relaxers and neuro-blockers et. al.

I would tell anyone with children considering the surgery, especially teenagers, to make as sure as possible that the doctors you speak to are extremely well versed in Chiari and the surgical aspects themselves. Next, speak with your child about how and to what extent these issues are affecting him. I'm not sure about the skin condition you mentioned, not sure what the initials stand for, so sorry . Or how it might be contributing to his symptoms.

My biggest tip/advice though, is dont let anyone make you feel stupid about a possible CM diagnosis.... and dont let em make you feel like a hypochondriac either. Chiarians have a multitude of presentations. The way it was explained to me, is it all depends on how much pressure is being exerted and where exactly the pressure is being placed what symptoms we present with on a daily, even hourly basis. Symptoms can change dramatically with body posistion, or even a simple change in head posistion...... so you can be having leg pain one minute, then headache, then all of a sudden you cough and the world is spining backwards in a spiral.

Anyway, hope all this blathering helped some. Feel free to ask more questions as you have them, or if I didnt explain something, chalk it up to a Chiari moment and ask again LOL.

I will keep you and your son in my thoughts and prayers. Keep us updated on how ya'll are doing!!!!

God Bless Ya!!!

Dawn

Morningbroken, how long did you know that you had CM before you had surgery. My son does not seem to have symptoms daily but he gets upset when I try to get him to talk about it. He is more than willing to make jokes for instance he will say I have a saggy brain. I do not like this but if it is his way of dealing with the issue I would rather him make jokes than be depressed. His derma said he would not have to have surgery but if he does not have surgery I wonder if it will just continue to progress and get worse. I will worry about every move he makes.

My son is also involved in many different sports. He loves football and lifting weights. He has currently had to stop all physical activity until we see a NS. Just for advice, do you think he will be able to continue playing football or lifting weights, if he does not have surgery and after surgery if he has to eventually have surgery. I read that riding a bike, or just falling, blow to the head could make symptoms worse. Sports is all he has every known. He plays football in the fall, basketball in the winter, and baseball in the spring and summer. Like I said playing sports is all he has every known and has been playing these sports since he was 5. He hates that he has had to stop everything and I caught him riding a scooter today and seem him try to jump a curb and fell. I was very upset with him and he got very upset with me because of the way I reacted.

Thanks for your comments, I am willing to listen to any advice you are willing to give because I do not know anything about it.

Oh, hon, do I feel for ya **huggs**.

Actually, I was officially diagnosed with ACM around the middle of March of 2000, and had surgery in June of 2000, so less than a month after DX. But my symptom progression was so rapid and degenerative that it was cause for concern. I went from being perfectly healthy in Jan 2000 to unable to walk the week before surgery.

Far as the making jokes aspect. It can really be conducive to a healthy outlook, and a positive way of dealing with an entirely too frightning unknown, at least in my opinion. Seems to me, like any concerned parent, your scared enough for both of ya . My DH has kinda the same sick, warped humor of dealing with our situation. Like he told me, sometimes you have to laugh to keep from crying. I would hazard to guess that your son's joking is a way for him to deal with his fear of loosing everything that makes him the peron he's learned to be.

I would definately discuss your concerns with the NS at your appointment. Especially the limitations with and without surgery. I, too, would be concerned about the football (although to be upfront and honest, I'm not that big of a football advocate in the first place). However, I would also be concerned about limiting him from ALL sports, due to the depression factor, if it were my son, I'd probably encourage him (with doctors approval and support) to continue and concentrate on the less contact orientated sports. Far as the weight-lifting, as long as it doesnt aggrivate any symptoms, I dont think it would cause any problems. Especially if it is just to maintain health and muscle tone. I would advise against body building though, anything that causes stress and tension in the upper shoulders/neck area, ie less weight with more reps, as apposed to higher weights with less reps. Of course, as previously stated, do this all WITH approval of the NS and possible a NL if surgery isnt a recommendation.

I know it will be hard for you, but after practical saftey measures have been taken, (helmets, guards, etc), and you have consulted with a NS or NL and have recieved the go ahead.... try not to become so concerned that you wind up psyching him into becomming a recluse himself. After my surgery and post op, I was allowed to live a normal life, with a few exceptions, the list I had to avoid were things like..... no riding roller coasters, no horseback riding, no bungie jumping, no skydiving , basically anything that would cause sudden extreme head jerks.

As far as aggrevating the condition, so many "normal things" can have the possibility of inflaming an otherwise non-symptomatic Chiarian, its really a mute point in trying to cease all potentially aggrevating scenarios. My Chiari symptoms were actually accellerated by a simple case of tendonitis in my shoulders and neck area. As my NL told me, a person cant live life afraid of the "possibilities" of developing something that maybe, possibly, could aggrivate something. As a parent, this is soooooo hard. I even find myself worried about my kiddos when their out climbing on the swing set, that they might fall and aggrevate a hereunknown Chiari Malformation. But I also understand, at the same time, that it would be unfair of me to deny them being kids, just because of what might be, what could be, and what possibly might happen. So I resign myself to keeping the sand under the swing set nice and fluffy, scanning the ground for rocks and sticks, making sure they wear their helmets and pads each and every time they get on their bikes, etc.

Glad to hear from you sweetie, and hope you and yours have a very Merry Christmas, and a Happy Happy New Year!!!!

God Bless you and yours!!!!

Dawn

Morningbroken, thanks so much for your advice. We go a week from tomorrow and I am trying not to be over protective. You are right it is very hard. My also loves and I stress the word loves to dance. I have even question whether or not he should be doing that.... I could see him growing up and making a living at doing so. He has moves that sometimes I wonder how he makes his body move like that. I really enjoy watching him and he enjoys entertaining people and making them laugh. However, today he was watching a football game and asked why didn't pro players wear mouth pieces and his father said they get paid for what they do and it is their choice. Next, my son said "when I play pro ball, I am going to wear a mouth piece because I am not going to take the chance of biting my tongue off." This comment was hard for me to take because football is such a rough sport that I figure from here on out it will be off limits. These comments are tear jerkers.

It is nice to hear that you are able to live a normal life after surgery. I am afraid they will not do surgery and he will get worse and I am also afraid of him having surgery. I do not think his symptoms are bad enough to have surgery right now. I ask myself if he will ever have to have surgery because part of me would rather him have surgery than to have to worry about the symptoms progressing. I feel horrible for saying so. Actually, I think I have more symptoms than he does and I haven't been diagnosed with it, but my symptoms have been around for 4 years so I do not think I have CM.

Thanks so much, you do not realize how much it helps the process of accepting that my son has CM. I was so unsure about CM and talking to you has help me understand so much. I will keep you informed and most likely will be asking more questions.

God Bless You and hope you have Merry Christmas,
Tina

Oh, honey!!! Thank you for those kind words **huggs** It truely is a good, good medicine to hear that in some little way you can be of help to someone. Our few little messages have done a world of good for me as well. I feel that the worst thing someone with Chiari, or someone supporting a Chiarian can face is Social Isolation. Until comming here, I felt alone in the Chiarian Universe. I have a wonderful support system, dont get me wrong, and without them I would have never gotten this far. But to speak with people who KNOW some of the issues your dealing with, from personal experiance, that is something that careing friends and family just are unable to provide. They mean well, and they have a very important posistion in yours and your sons mental well being, but unless you've been there, its just impossible to relate.

I wish you the best of luck with your appointment. Dont fret over wishing both ways, its perfectly normal to be torn about a situation like this. You of course want what's best for your son. But at this point in time, there are just so many unanswered questions.... questions that only your son, your NS, and yourself... working together as a team.... can solve and answer together. When ya need support, I'll be here. You go ahead and ask yer questions when ya have em. If I havent dealt with it, we'll search the web together and figgure it out eventually .

Keep me posted!!!!!

God Bless Ya!!!!!

Dawn