Husband support ?????

[roktta06]

Hi everyone (married or with partner) this is kind of difficult for me to post because it is a very sensitive subject for me buuuut, I was wondering if anybody with Chiari has a partner or husband or boyfriend or whatever that does not understand your condition and makes your life more stressful and difficult for you. I DO!!!!!!!!! I do not know if this is the right place to discuss this but I really need to know if I have an insensitive husband or there are a few out there!!!! This upsets me so much that my stress level rises and things (symptoms) get worse!!!! I know my husband loves me a lot but WHY WHY does he not understand. I have send him articles about Chiari malformation…depression and he just does not give a damm….. he has gone with me ONE time to the doctor but I have mainly just be along with my CM. I have been married for 20 yrs now and he married me knowing I had this…
Imagine my depression i have to attend seminars to jump up my self esteem because I can not believe that the person the loves you the most does not care!!!!!!

:(

[Djoslyn]

My boyfriend is exactly the same way.. I've tried to get him to read information on my condition but he refused and also refused to believe that there is no cure for it..

[selmaS]

Hi.....my hubby was like that in the beginning too, and I have a sister that feels she knows more than me as she went to college and I didn't....but, after a few Dr visits my hubby was researching on his own and never told me and in one office went off on the Dr.....I was so surprised I had no idea he was that informed.....it may take time, and it may never happen...as in my sister's case. I mean look at the Drs....the NS's themselves that do not believe that Chiari can and does affect us like it does.....so if Drs, NS's don't how can we expect a non medical professional? I know we want our loved ones support no questions and we want to know they understand all we go thru....and I have times I feel my hubby forgets....we just can''t hold that over their heads as they are not going thru it..and all we can do is hope they  will continue to be there even if they don't completely get it.
When having a convo with your BF ask him how you fix a bone that is deformed? That is what Chiari is, the malformation of the skull....all they can  do is create more room to allow CSF to flow...and even then scar tissue can form and cause an obstruction all over again....and surgery does not fix or correct any neuro damage that has already been done. Then you have related conditions to contend with...syringomyelia, ehlers-danlos syndrome, tethered cord,retroflexed odontoid, ICP, IIH,POTS, and Hashimoto's,sleep apnea,,,,,the list can go on and on.......

[jbellminden]

I was diagnosed a few weeks ago...after years of symptoms and the initial shock of reading through what is available online, I just had a damned good cry alone in the car because this finally explains everything. I have kept quiet or made jokes every time I felt unwell in the past...I have quietly wondered if I was losing my mind. And my partner, as caring as he is...also gets exasperated. I ride horses almost every day. We have a warmblood stud and train dressage and showjumping horses. Its not just walking around quietly on a calm horse. I have been very symptomatic for the past few years (and now somewhat distraught as I imagine my first appointment with a neurosurgeon will put paid to the sort of riding that I do), and I guess there are only so many headaches and so much tiredness you can expect anyone to understand when it isn't happening to them. Yet he suffers depression, and I am a jerk when I switch off to that...as I do because..ummmm..you know how I'm not allowed to have the same problem for more than one day? Well! Anyway...thank-you for being able to vent to people who understand! It is sooooo nice. Makes it easier to go back out and smile at the people who 'joke' about how you 'always' have a headache or you're 'always' tired!

[selmaS]

Hi and welcome to the Chiari forum.

It is hard to find support for a condition most have never heard of and that includes Drs...and those that have heard of it ( the Drs) do not believe it can cause us the symptoms that it does.....so, if we can not find support from the medical profession why do we feel we should find it amoung our family and friends....because they are family and friends....BUT that does not mean they will understand  and support us. It wasn't until my hubby went on line and did his own research that I saw a change in his support.

Your Dr may have you cut back how you work with your horses, but you may find a way to enjoy that since it should help reduce the headaches......and other symptoms.

We can all say we have been a jerk a few times in our lives, but to get what we need we also have to hand that out.....JMHO

[selmaS]

  Just be advised u want a Dr that is a specialist with Chiari not just a neurosurgeon which is where most of us get sent....and it makes this journey all the more frustrating.......

  SO do check the name of the Dr with the names on the list I sent and see if it is possible to at least get a few opinions b4 u decide on surgery as it is possible to feel worse post op then he feel now.....

[teeka21]

Thank you so much :) he's had an mri and is just waiting for the go ahead to come home :) i believe he's already got a referral to see a neuro surgeon when he gets back hopefully tomorrow or Friday, thank god the raaf will give him the best help possible :) he's a very headstrong and independent man ( like most men lol) so its really taken a lot out of him, i can't wait to have him home again and in my arms so we can take the next step to recovery or at the very least some kind relief no matter how small :)

[selmaS]

  I forgot to post the link to the Drs list...keep in mind this is for u to research and is not a referral......

  http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732

[selmaS]

  Hi and welcome to the Chiari forum.

  I want to thank u  for being  a support and an advocate for ur BF...as it is difficult to get friends and family to understand this condition, let alone find Drs that do, so it means a lot to all of us when we have the support of a loved one.

Many times we go a lifetime and do not realize we have this condition as we learn to adjust and accommodate to avoid pain....we get use to feeling many of the symptoms and consider many of them "normal" they r not, but they r "normal" for us as we have always had them and do not know nething else.....

Then we can fall, or be in a MVA or cough too hard and wham the symptoms flare and we can not take all the pain and symptoms all at once
......

We do have a few members from over there and I know there was a short list of Drs to see.....

Once he has a DX he will want to have more testing to see just how his chiari is affecting  his overall health ...a CINE MRI to see if he has a CSF obstruction, MRI's of the cervical , thoracic and lumbar spine to rule out disk issues, tethered cord, scoliosis, ICP, POTS, sleep apnea, ehlers-danlos,low levels of vitamins and minerals, thyroid issues....I know it is a lot, but these issues can affect how he feels and heals if he is a surgical candidate...and not all with Chiari are.

Surgery is not a fix or a cure, just a means to restore CSF flow and slow progression.


As for someone for u to talk to..right here, we r here...there r partners that chat here and u can talk to others that have had surgery too...get both sides....

  Again thank u for him...as he will need ur support, and u both r not alone
   : )

[teeka21]

Hello everyone, my boyfriend has just been diagnosed with chiari malformation two days ago, after 3 weeks of debilitating migraines, to say the least we are both in shock and i am worried in the extreme because he is currently on trip ( he's in the royal Australian air force) some 2300 kms away from home... he's supposed to fly home tomorrow...just have to wait for the all clear from the specialist :) he being his chilled out self is playing it down, but its hard not to hear the pain in his voice :( i would love to get advice for him and myself... though i'm not entirely sure exactly what to look for, there is so much to search through that it get a wee bit overwhelming :/ i would love to know what support there is in Australia for people suffering cm and if possible if there is anyone for partners to talk to? I feel this could end up being a very rough journey for us both and would like to do and be the best i can for him! Thank you :)

[lydelia]

I totally get where you are coming from. Although my DH did not support me really any, through any of this, he said before the surgery and now after, well "you can't use that as your get out of jail free card any more'. Meaning that now that the surgery is over, I should have nothing to complain about and he should not have to show me any sympathy, not that he did before anyway. I love my husband and he is a great father to my two kiddos, but he ***** when it comes to supporting me in anyway.

[roktta06]

……. "what gets me fried is there r NS's and other Drs in the field that do not understand it...so if they don't get it how can we expect our family”….

SelmaS you are so right to post this and I think it is very important that members read this  because  most of my problems with my husband AND family members is the misinformation that Drs. give us.
My Neurologist takes Chiari very lightly … that one time my husband went with me,  my husband asked him if I had limitations as to what physical activities I could do and he said I could do anything I wanted just to avoid extreme sports. And I turned around surprised at his answer and asked him.."so I can lift weights?”…oh sure!!!! WHAT!!!!!! I can’t even get constipated because just to push my head explodes  in a sudden pain and I feel that  I am going to pass out…  and then my husband asks "so this is not a serious condition???”    he answered…"there are people out there with Chiari and never even know it”…. I was appalled at his answer yet again…

Now here in Mexico I went to see a Neurologist (long story) for my panic attacks that were not yet diagnosed as so,  and he said that my condition was life threatening  and I had to take really good care of myself.
Now guess who my husband choose to believe???
One Neurologist told me there was no problem having a natural birth with my first baby  and I pushed for 4 hours every 2 to 5 minutes as hard as could because I was not dilated and he did not want to perform a C sec. Another Neurologist told me that if I’d  lived through that it had to have been a miracle!!!!

I do understand that family members do not get it but why would we lie about pain and feeling miserable… I personally would give anything to feel
normal again. I lost ME. I lost the woman I use to be..I am literally  going through mourning  …  

[roktta06]

You do not sound bitter at all!!!! I posted this question so we could pour our feelings here were we know that we are understood and  get it of our chests ….because I know my husband will never ever understand or ADMIT he understands. When we were dating he was the most sweetest man I have ever met. He always was telling me how he loved me , bla bla bla…and as soon as we got married I asked him, “What happened to the man I married?” and he answered that he did not want to love me “A LOT” because when his father died his mother was so accustom to his dad doing everything for her and loving her so much  that she had a hard time dealing with being a widow. OMG!!!!!! can you believe this man! so why did he say his vows in Church when he knew he was not going to commit! but this reassures me that men are from another planet!!!! lol…. now I know   he does not want to “spoil” me because to him it probably means he will make me weak and a “spoil brat”… to them it either everything or nothing!!!!!!! MEN!!!! lol!!!!

[linnielou232]

Wow!!!!  I'm glad we have this to  come to and have friend's to share our emotional journey.  As I said to the Dr. today I didn't plan this, I didn't know I had Chairi until in my 40's Bamm.  It hit us all in the head.  This is hard to absorb, ecspecially the changing of life style and the miss understanding.  My family probably get's tired of me mentoning this forum because I tell them that if it wasn't for those of you out there on those day's when yes, my loving husband's tries to understand, but how can they when we ourselves can't understand having this.  It is so discouraging not even having your own reassurance.  I used to be a very very positive person and I try every day to get some of this back.  It is hard, but there is also hope we all can't let ourselves or no one else take that away from us. That's why I try to take one day at a time, and look at a positive in all this.  We wouldn't  be family, Chairian friend's if we didn't have it.  LOL!!!  It's not funny, but just trying to keep on the positive side.
Wish you all the best.  Today, if not today. Tomorrow will be a better day.

[selmaS]

  I am so sorry u r so frustrated but the after care for this is non existent...
May I ask, did they cauterize the cerebral tonsils...if so that is a part of the brain that was worked on during surgery- so he can call it what he wants to help deal with it but it is brain surgery even if the tonsils were not touched...

But if they were,it may help ur case with ur DH....

  I have days when I can sound the same, it is a long bumpy road and unless u have this it is hard to understand....

  Just look at all the Drs that make the claims that they will fix or cure u so u can go back to a "normal'  lifestyle....???

  All we can do is continue to educate those that do not understand.

      "selma"

[AmyFS]

Great topic/question!! This was exactly what I was wanting to discuss when I visited the forum today.  I am very frustrated because as one of the postings mentions- everyone thinks that because my surgery was 14 months ago that I am all done- all zipped up-all better- ...WHAT????Don't get me wrong, my husband is wonderful-truly- but sometimes I feel completely alone in my struggle. During the whole miserable process of getting diagnosed and having surgery and "recovering" for a couple of months, he was amazing  Went to the appointments with me, researched, listened & listened to me, stayed with me in the hospital all 5 days through all of the agony and took 2 weeks off afterwards to be there with me.  So I know he "gets it".  I should count my blessing, I know, but I have to vent.  It's almost like he has blocked it out entirely.  He's not rude or disrepectful or anything like that.  The impression I get is that "I've used up that excuse" sort of thing. Like when I say that I feel like my head is going to explode (and I get no reaction)  or I've been having a difficult week physically, or gee, my balance is off today- my symptoms seem to be making one of their 2-week long appearances again...all to little or no reaction.  I don't think I'm looking for sympathy- just empathy? Support?  Someone to say ok, its time for you to listen to your body and rest.  Nope.  It leaves me feeling like a whiner & a victim.  And that is NOT me.  So that upsets me even more.  I feel guilty saying this stuff because he IS such a good man and a loving,sensitive husband, but we recently had a conversation that I will never ever forget (until my chiari makes me forget).  I asked him if he realizes that I still really do have alot of problems. That I don't say this stuff just to get attention, etc. The surgery wasn't a cure. Just a treatment.  That my symptoms come back.  That I don't ever have a single day where I don't hurt. That I will probably never sleep well again (and as a working mom of 2 pre-schoolers, that's a biggie!).  He said that he understands that.  He knows (he works in the medical field so he is more up on things than the average person) that the body takes a long time to heal from something like that surgery.  He remembers how all of the Drs said over & over to us in the hospital that this was THE most PAINFUL surgery they do.  
THEN, when I said, "I mean, it was brain surgery for goodness sakes" he said, well they don't really consider it brain surgery because they didn't "go in there & take out a tumor or fix an aenurysm or something like that. It was Skull surgery, yes and Neck surgery, yes" . OH MY GOD? WHAT???  OK- then why did a brain surgeon perform the surgery? To try his hand at something new for a change? It still makes me so upset thinking about that. I know that he wasn't saying it malicously, but wow~ Not brain surgery? I am still speechless.  He's even watched the videos of the surgery.  I guess those tonsils that were blocking the flow of CSF in my BRAIN were just an pesky part of my neck that were misguided.  That the dura isn't really part of the brain 'cause its on the outside of it.
Sorry to make light of it, but if you have something wrong with your brain or your heart, that's about the epitomy of health problems!
  
That was the first time that I could clearly see that he (and others) think that my "needy time" is done. That ship has sailed.  I should just forget it ever happened and move on. Just like that. That's not what he said and I'm sure it's not what he meant, but that is how it registered to me. One of those crystal clear moments that I relive over & over.  Most people, even those closest to us who endured the emotional roller coaster with us, have no idea that this is really a life long condition. There are good days and there are bad days, but it will always be a part of who I am. Sorry.  If I could make it all go away, I would.
I know it takes alot emotionally out of them (spouses, significant others).  And God bless them for being with us through it all.  I don't know what its like to be on that side of the fence.  Maybe it is something that men in particular need to mentally file away once the "big part" (surgery) is over?  I couldn't have asked for a better partner during the diagnosis,surgery and initial recovery.  I guess my suffering is not as obvious to him now that the scar has healed and my hair has grown long again.
Thanks for listening. Wow, I didn't mean to sound that bitter!   I really do thank God for him :)
It is so good to have this forum where we can share our feelings with people who GET IT!

[selmaS]

  This is a very difficult issue to deal with, and I wanted to add a few links to older threads on the same topic-
http://www.medhelp.org/posts/Chiari-Malformation/How-are-your-SOs-with-this/show/651563?controller=posts&action=show&id=#

http://www.medhelp.org/forums/search/257?utf8=%26%23x2713%3B&query=support+of+partners+

[Missy131197]

my heart is just breaking reading some of the posts.  I have a fabulous boyfriend who is very understanding.  Does he have frustration's yes, he was just recently like 2 weeks ago diagnosed with Type 2 Diabetes so the last 2 months have been absolute hell for us both medically, but he is completely understanding that this is not my fault. He goes with me to appt and offers support in whatever he can. I am saddened to hear that people can be so selfish. My prayers and thoughts are with those struggling.  :)

[roktta06]

Thanks linnielou for caring so much and every one posting... My op for sryingomyelia was 1987 looong time ago... I was not married yet... and before getting married I told my husband everything  . But I did not know that the syrinxs was related to my Chiari Malformation until I got sick of my Neurologist not listening..(he was like a wax museum figure)... and went to see Dr. Goldfarb. He was the one to tell me that my sryrinxs was due to CH. My husband heard but not listened!!! I had three children in a span of 6 years with one miscarriage in between and another after. When my second boy was born he was born with pyloric stenosis. For a whole month he cried and did not sleep 10 minutes in a row! To make a loong story short we ended up in ER with him just barely  hanging to life. My husband NEVER gave me a hand even though I told him that my head was going to burst because I had not had  a full hour of sleep of more than a month. His response..."I am tired too"....the op was a success (thank God) but after the op I had a difficult time in  starting  feeding my baby again little by little. He cried and cried and cried for 2 years in a row!!!!!!!!! we tried every method out there to try to get him to sleep. During those two years I was pregnant and had already had my third!!!!! NO help whatsoever from Frankenstein !!!! I was feeling MISERABLE!
I went to see my Neurologist telling him I was sure I had a huge tumor in my head because the headaches were soooooo bad that it was not humanly possible not to. MY husband did go with me..but here comes the fun part....I was telling my doctor what I had gone  through during those years (sadness, huge terrible panic attacks crying a lot)  and my husband was next to me telling the Dr. ..."I tell my wife she should exercise more....I tell my wife to go shopping and get a life..and I tell my wife bla bla bla ..." the Dr. left everything he was doing and stood up to him and told him..."OK now, let me see...are you a doctor sir???" I couldn't stand it and laughed soo hard. lol
BUUUT that was it..he never again went with me!!!! I guess his ego was hurt!
I tell my friends that he is like dr. jekyll and mr. hyde...he can be so loving but when it come to me not feeling 100% well he is a monster and could hurt my feelings so bad.  
I do not think there is anything that I could possibly do right know to make him understand!
By the way I did not have a tumor..lol...but after thoroughly listening and examining me, he decided to  send me to a Psychiatrist. I was diagnosed with Generalized Anxiety disorder  and major depression!!!

[roktta06]

OMG! I am so sorry to hear this... it is so terrible to see how selfish people can be!!!  Life is not about having fun 24/7, it is about how much you love and care for  others in need AND how to be humble and giving. It is so satisfactory to  see somebody happy because you contributed to that.
I have told my husband over and over again...that if he only would be a little more giving and forgiving toward me I know I would feel much better. but being bullied about my condition it NOT FAIR!  Hold on !!! We wil be better human beings because of this!!!

[selmaS]

  Do look into finding a way to get some oxygen support for sleeping, it will help ur HA's , ur fatigue and prevent u from stop breathing...this is very IMPORTANT!!!

  Do u have insurance?..If not check into PICP.gov

There are also clinical trails for chiari that may take u into the trials...do check into that.....

    "selma"

[Katie6948]

I was diagnosed with disruptive sleep apnea earlier this year. They wanted me to get a CPAP, but since I cannot work anymore, we couldn't afford it.

I know he wants me to feel better, but sometimes I do just want to cry. At least I know there are many others out there going through the same thing.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DH does not understand what is going on with u, but as I said there are many Drs,. and NS's they do not feel chiari will cause symptoms and do not recognize that chiari needs treatment...so if Drs are so mis informed, we can not blame those around us that do not understand this either....

I know, we want our loved ones to support and comfort and hear what we r saying...but, they get scared too....slow down and take him with u to ur Dr appointments and be sure the Dr is a true Chiari specialist.

  Be sure u r tested to check for a CSF obstruction, a syrinx,tethered cord, disk issues, sleep apnea, ICP, and Ehlers-Danlos Syndrome......


   DO check our Health pages for more info on chiari and related conditions, and our list of drs for u to use to research drs, the list is not meant as a referral.....

    "selma"

[Katie6948]

I am going through the same thing! I was always very active when I was younger, and even spent time in the USMC, where I met my husband. I have always known somehing was wrong because when I did stuff it "hurt". No one really took me at my word (11 years now) until last year. I was diagnosed with lupus (blood tests, not just symptoms), and my husband went to one appointment. He hasbeen getting frustrated that I haven't been myself or as active/ super mom/ super wife that I ave been for 7 years. About three weeks ago I went to my Rheumy and he started me on an antibiotic to hopefully kill any underlying bugs that are hindering my lupus. I thought that the meds were the cause of my increased headaches (long-time complaint), or the fact that I had a cold. I went to see my PCP on Friday, as our normal 6 month checkup, and she was very upset that I hadn't come in sooner to see her. SHe told me that all the symptoms were not normal (major headaches, memory/ simple cognitive problems, gait issues, pain all the way fom the top of my neck/ base of skull to my lower back were constantly in pain. She sent me for a Stat MRI and denied my ability to dive because of vision interference as well. The wet read came back from the Radiologist Friday evening, and there was the malformation. It wasn't present last year on my MRI, but there it is. It has to be pretty obvious if the DR saw it on the wet read. I have another appt with my PCP on Tuesday, but sypmtoms are increasing. My husband either just dosn't understand or doesn't want to see what is going on/ doesn't care.I have two little girls (5 and 3) that do not understand why mommy is "sick" but I don't want to say anything until we know for sure. I really feel as if I'm spewing from the mouth, but I really have no one who is listening  who isn't occupied with their own kids/ lives. I'm freaking out at the possibility of surgery, and even more about the care I wil get here at home if indeed I do need it.

[selmaS]

  Welcome to the Chiari forum.

I am so sorry that ur partner was unable to deal with ur condition....not knowing how far along she was with ur child and what ur limitations are are to a disadvantage for me to offer some form of consolation.....

Hormones can play a role in this with ur partner...being pregnant is stressful and the unknown as to what ur issues are or will continue to be just may be too much during the pregnancy.....

  I hope u share a bit more about ur chiari journey so we can offer u some support and guidance.

   "selma"

[jive237]

I  know how you feel. i just lost  my wife to be and unborn child because she could deal with my condition any more