what can help my husband? does surgery reverse the symptoms,? If not is there medication that will help significantly?

[amandabirke]

Ok , I'm new to this forum but not new to chiari 1 malformation.  however i'm been very depressed with what has been happening to my husband who was diagnosed with type 1 chiari malformation .  It is 6mm herniated and at the beginning it started with major headaches.  It took several years before we finally got the referral to go to the neurologist from his pcp. he originally thought it was due to type 2 diabetes, but things kept getting worse.  now things are out of control.  We got married 2 days later after finding out about his dx of the malformation , so that he may have the opportunity to know his children.  we were not informed of the gentic passing of this however.  so we had a daughter two yrs after he was diagnosed because things were starting to go wrong, he was getting clumsy, and passing out in a blink of an eye.  she is now 4  and we almost were killed when he was driving and my daughter and i were asleep in the car driving home which was about a hour away.  when i awoke we were at a gas station facing the wrong way at a gas pump and my husband was unresponsive in the drivers seat . i could not alert him at all!!!  he was prescribed for awhile now oxycontin for his back pain but never,never,never overdosed he was always good about that.  he has been on painkillers and tranquilizers for about 12 yrs if not longer now and everyone and i mean everyone that we know think he is a drug addict and the drugs are causing his symptoms. so when the ambulance driver got him in the ambulance the noticed his oxy's in his pocket and shot him up with narcam.  it woke him up , but he was still slurring his words and not right but they dismissed it and said it was an overdose.  my husband does not drink alcohol but when he slurs his word it;s like he is totally drunk out of his mind , like he speaks a different language all together.  he forgets what happens all the time , i constantly have to remind him when he comes too normal again, and he cannot keep his eyes open,first sign i notice before he is out is that his face droops on the left , same side as the maldormation , his eyes begin getting sleepy looking pupil harly there, and slight slurring.  I have very little time to react before he goes into a full blown unawareness and passes out.  he is very combative when i tell him that he that his symptoms are starting.  the neurologist said seizures but didn't pick anything up on a 24 hour montior, so she put him on topamax.  we sawa neurosurgeon at u of m michigan about a yr after he was diagnosed and they said they wouldn't touch him with a ten foot pole.  I find myself yelling and getting very angry because no one , doctors and family and friends will listen to me.  we can't go to family functions and even ask that he don't go , cuz it embarrasses them , and i'm scared for him.  is there anyone in michigan that will take care of hime doctors i mean?  and does surgery reverse the damage and symptoms he has?  and what do idowith the remaks of family and friens to prove to them he is not a druggy and that infact what they see is the result of this disorder?  Help !!!!! desperate for answers and depressed and scared!  heis 35 yrs old and i'm 30 .  i hate yellin at him all the time and i hate crying all the time .  i want to help him so much . i love him more then he will ever know . he was my first love and only love !!! we have been together for 15 yrs and married 7 and i cannot take care of him by myself with a 4 yr old.  we want another baby but , i'm afraid that he may be paralyzed pretty soon, his walking became impaired last yr , and he has to walk with a cane from time to time!!  so please if anyone knows the answer to my questions i would greatly appreciate it.

amanda

[selmaS]

Hi and welcome !!

As all the others have already said ur DH is lucky to have u for an advocate...this condition is overlooked by many in the medical field....and those not in are totally confused by it....it seems to take many of us yrs to get a dx and treatment.

I would venture to say ur DH's symptoms sound like they r pretty severe if it is all chiari related ....do be sure he is check for related conditions as well.

This chiari journey can be a bumpy ride, but ur DH has u to hang on to : )

We r happy to have u join our little family here, so sorry for the reason u had to seek us out!
"selma"

[ChiariWolf]

:-) Your husband is indeed in good hands.

You vent away! Your part in this is or can be very stressful. One thing that could help a little though is if your husband cares to share. The reason that helps is because it takes a Chiari Patient to understand what it feel like and how it makes you think. Understanding whats going on inside of your body and why in some weird way does help.

Above all though, find that NS with a focus on Chiari. I"m definately not a doctor but it really sounds like your husband needs that specialist and he needs to be evaluated now. I understand, I think we all do, about the hurt with family and friends and their not accepting things.... but remember the stress of dealing with that 'will' cause his symptoms to worsen. Let all that go and just get him some help!

You know, I was in a similar situation just a bit less than a year ago. Love my family but I told my forget them for now. It was bad enough my wife commented that if I died she was not going to allow even my father to attend the funeral. However, we read a few scriptures together and she was able to just let it go. It wasn't until they where sitting in the family waiting area post-op that they understood. The doctor came out and appologized to my wife. He said that my MRIs had not shown the whole story and explained how bad things really were. Well one of my family members who had totally cut off contact with me overheard. She then came over to my wife after hearing the doctors explination and asked "Does that mean he had to have this operation?" next she asked "so after this he'll be back to himself again?" I've not said a word nor has my wife but my family is very slowly coming around. The problem now is that they are afraid we won't forgive them. But the person, my little sister, who was so judgemental in fact the one who was at the forefront of the trouble before... well we just spent most of the day with her today.

Time heals much... for now again, please just get him some help. And while you are at it... give your daughter a hug as she probably is more stressed than you realize. Let her know all is well.

Wolf

[cyberpyxi]

When i found out about my ACM, i was pointed to a story called the spoon theory. if you search it on bing, you'll see it. while her story was different than mine, i loved the way she put having an "invisible" condition.
You're right, sometimes, it's hard for others to see the problem because we don't scoot around on walkers, or have braces on our legs, and our brains are not sticking out of our heads...that they can see.

It's hard, even with a supporting family. I can not imagine the stress your outside family is putting on you, on top of what stress you have from your DH being like this.

Send your family here, to these forums... we'll educate them!

Ask us questions, any time. and VENT to us, honey! We all do it at one time or another. It really does help to have a group of wonderful people that understand.

Big hugs, and keep on being strong. Get him to a good Chiari's specialist, and keep in touch with us.

[*Stormy*]

I just wanted to say that your DH is EXTREMELY luck to have a wife like you fighting for him. Unfortunately that's what it is for most of us...a fight. I am sooo glad that we could help you in any way, we all need to stick together in this. Your DH's family needs to see the light with this and soon!!

GOOD LUCK!!! We are here for support and venting too lol

Carolyn

[amandabirke]

Thanks so much for your support. i am going to show this to everyone who has been literally abusing me to take control of him and make him better.  take his meds, monitor them, tell the doctors , r u thinking of your daughter and what if this and what if that?  It is horendous!!!!  he has had several mri's and so far nothing other than the CM and herniated disks in lumbar area pressing on sciatic nerve.  but you all have helped greatly, i had my hubby read this too and he cried.  i think now we can all move forward.  i do not regret having posted this at all .  i was begininng to go crazy with hopelessness of getting through to our family, friends and acquaintaces, since they all expect me to do MAKE him admit to being an addict and MAKE him think this is not real and an excuse!  My next move is to show this and all the information i have gathered to them , starting with his mother and father, Then my father for Daring to suggest he doesn't come to christmas eve functions every year cuz it embarrasses him!  if my hubbie not welcome then neither are his grandaughter and i. If it was someone with MS or something obvious would there be no problem then?  you know?  kinda venting there lol!  I will be in touch soon, and as often as possible, for i sleep very, very little cuz i am alert all the time for the sake of my daughter, his and mine's safety!  I am now gonna get some sleep , maybe now alot better because of all of u .

BLESS U ALL!!!!!
amanda

[*Stormy*]

Hello and Welcome to the forum

I'm am really, really sorry to hear about the rough ride your DH, yourself and your DD have been through. I can pretty much only echo what everyone else has said. Some DR's have this ridiculous idea to mask the problem with drugs instead of doing anything and then the symptoms are allowed to keep progressing. It is frustrating that your DH has had to deal with that ignorance.

I would get his MRI pics together and email them to a Chiari Institure ASAP!! He needs a Chiari specialist that will understand and validate his condition. The postive gains from surgery, I believe, is greatly affected by how far you have progressed. Like the others said, it is not a cure but it IS a way to stop the progression. In my case, my worst symptom was that it greatly affected my gait and that got 80% better after surgery.

Please know that there is a light at the end of the tunnel...many members have felt so lost with this process and then they found the right NS and it made all the difference in the world..myself included. Also, this forum is one of the best you will find...we are all a great support to each other and are there for you anytime you need it!

I hope and pray you get some answers soon...please check out the specialist thread where there is a list of specialists that others here have recommended. Selma usually keeps it near the top so just scroll down the threads and you will see it :)
Carolyn

[redkim]

Hang in there!  You husband needs you.  I suggest finding a specialist, even if you can't visit now you can send copies of films and reports.  If you don't have copies I suggest calling old doctors now and requesting copies be sent to you, and keeping a file.

Surgery isn't a cure: it can help, make it worse, or do nothing.  I had surgery and personally I am glad I did.  My descision to have it wasn't with the expectation of feeling better, but with the hopes that it would help me from getting worse.  Turns out I do feel better so that is a bonus.  Chiari affects your nerves and if not treated can cause permanent damage.

Does you know if your husband has syringromyelia (sm)?  Have they done any MRI's of his spine?  CM can cause SM which is one reason why I had the surgery, to try to prevent getting SM.  

You came to a good place to get information and support.  Do some research and find a specialist, you are finding the path you need to take, and with some help you'll start the journey.

All the best!

[ChiariWolf]

Wow, you've been through the ringer as well. So sorry to see your daughter as well going through this.

Remember first off, if this is chiari related, it's not his fault but perhaps he should speak with his doctor about driving out of respect for his own life as well as everyone else. Yes, it's painful I know as I wasn't allowed to drive for several mos because of all this.

As to some of your questions. No, surgery will not reverse the problem but it can significantly slow the progression and it can alleviate many of the symptoms. Medications? Well, frankly they don't help with chiari headaches at all. They may dope you up to the point where you don't care but they do not alleviate the symptoms. In fact some that they tried on me actually made it worse not better. We live in a society that wants a drug for everything but a word of caution. My NS and I were talking about this last week he commended me for refusing the pain killers wherever possible. He also told me that with this type of problem if someone comes to him already addicted to them he cannot or won't treat them because of the risk.

My suggestion would be to find a good NS whos focus is on Chiari. Get the appointment and go with your husband. Make a list of his symptoms 'that you have observed' and take it with you. Also, make absolutely certian that this NS is aware of the incident you describe above.

Wolf

[northernstarmn]

hi WOW sounds like you been through a lot, Have you considered going to someone who specializes  in Chiari? Even if it is out of state?, Maybe it is something you should consider. Somewhere on here is a list of specialists that you can look into.  Send this to your family members http://www.csfinfo.org/sites/default/files/cm_sm_handbook.pdf
now granted its not just about CM but a very good thing to read none the less, may help them  understand what he is going through.

Surgery is NOT a cureall, but it can ease many of the symptoms.and it can also cause some complications, Personally i think meds are just  a band aid so we can cope with what is going on, I have yet to have a drug that made me feel all better..lol..

If you were my friend or family memeber I would strongly suggest you seeing a NS that is a Chiari & related symptoms Specialist

good luck! Lisa