Spouses

[Isabel305]

Hi everyone,

I am relatively new to the board; or rather, I have been reading for quite some time, but this is my first post. My exceptional fiancé is a chiari sufferer and I wanted to take a second to reach out to any spouses or loved ones of chiari patients. My fiancé is also a new member of the board and we spend many nights reading posts as a way of seeking answers and comfort. My fiancé has been suffering from symptoms for almost 3 years now, but the last 6 months have been significantly worse. We have seen neurologists, cardiologists, neurosurgeons galore, none of which can or want to help. We waited 2 months to see one NS who gave us no answers, and last Friday we sought a second NS opinion and he sent us home with neck exercises. Neck exercises! It was a slap in the face. Disappointment after disappointment. We had a CINE MRI taken which shows reduced and “possibly absent” CSF flow, yet none of the NS seem to think anything of that. This weekend we made the decision to send his MRIs to the Chiari Center in Wisconsin and hope that they will help.

My fiancé is incredible. The pain that he feels every single day, I can’t even begin to imagine. I can’t imagine the pain that all of you go through. But what’s even more amazing is the grace with which he handles it all. He is the toughest person I have ever met. He treats me like a queen and takes the time to make other people feel good every single day. I see the pain in his eyes, even through his big smile. I wish there was more that I could do. There is truly nothing that makes the pain any better. All I know is that I will not stop until we have answers. He asked me to marry him about 2 months ago and I couldn’t be happier to be spending the rest of my life with this incredible man!! He deserves all the happiness (and relief!) in the world. I am so grateful to all of you for all of the support and advice. Wishing all of the happiness and relief to all of you, as well. And to all of the spouses and family members out there - stay strong and keep fighting!

Isabel <3

[selmaS]

Hi and welcome to the Chiari forum.

Having surgery is not always the only thing we need to contend with as there r related issues that can affect how we heal and feel post op.

I know u did what was best for him at the time, and it is hard to watch someone in pain, but try to step back and know some of the pain is expected.....and some is not...figuring out the diff is the hard part.

  First u need to figure out if this is pain from surgery swelling etc.....or if he is experiencing pain as a result of the nerves no longer being impinged ...many times it takes longer for this to happen and most feel wonderful immediately post op..almost symptom free....but many times it is the meds....but the meds r not working well for ur DH and u need to figure out y....could be the meds being used....we r all different and it may take a few diff combos to see which works...talk with the Drs and nurses to see what they can do.

U mentioned his BP spiking does this happen when he is upright?

Also do u know exactly what was done? There r diff procedures for Chiari and not all Drs do the same things, such as was his dura opened and did he have a dura plasty, a laminectomy (bone shaved off C1 and C 2) if he had a dura plasty what type of patch was used?

Was he checked for related conditions? Can they do that now?

Hang in there...I am not a spouse, I had the surgery in May '09 so I know first hand how it can feel.

[knnygrl]

Hello everyone. My husband was diagnosed in late July with Chiari. He has had Bell's Palsy 3 times. First time he was 15 on the right, then when he was in Iraq 2005 on the right, then in July 2012 on the left. The swtiching of sides is what made the dr send us for the MRI. He has had headaches for years but they were never serious. All of that changed in August when the pain started increasing in strength and duration. Our general physician was just throwing lortabs at him which did NOT help very much at first, then not at all. A consult appointment had been made and surgery scheduled for Sept 24. Sept 12 we called for some kind of pain relief, GP refused, said they are being abused, said if the pain is that bad, go to the ER. So we did. Walking into the ER, my husbands BP was 180/110, pain 10/10. He had not slept more than an hour at a time and wasn't eating. ER dr gave 1mg of dilaudid, no relief. 1 hour later, 1 mg of dilaudid, no relief. Sent us home with a rx of percocet and instructions to be at the NS at 8am to have surgey moved up. We fired that NS when he refused to move surgery up. I am a nurse so thankfully I knew the manager of the Neuro ICU at one of the hospitals here, he sent us to another ER where they injected marcaine under the base of my SO skull to numb the area as best as possible. Dr. Middleton performed the surgery Friday Septemeber 21 at 0730. We are now at post-op day 3 (or 4 depending on your time zone). My SO is in so much pain and i feel helpless. They are giving him oxycontin every 12 hours, 1 mg of dilaudid by mouth every 2-4 hours, and lortabs 1-2 every 8 hours. Lortabs at this point are a joke. His BP spikes to the 170/90 range, and his heart beat stays 90-130 bmp. He still isn't eating because the pain is so severe. He does walk some, but is very weak. I am scared, i don't know what to do. Nursing school does not prepare you for this. Any suggestions please let me know. I miss his smile, the way he winks when he catches me looking at him and just him in general. I just needed to tell our story and possibly get some help. Thank you.

[selmaS]

  That seems to be a trend with ne hospital u go to, as long as u have someone like Isabel there to be ur advocate u should be ok...it is the Dr that is important.

Talk to all Drs u consider to be well experienced with this condition and express ur concerns u have heard regarding the hospital and or staff with the Dr so he is aware.

[Drew305]

We have not seen Dr. B Green- although we have talked with people who have had experiences with his hospital and have not heard good things. Not about him but about the hospital itself.

[Drew305]

She has been the best thing to ever happen to me. I can't describe to everyone how amazing SHE is. This is a difficult situation for all of us but those around us (family and friends) also deal with the condition and its limitations. We definitely need to remember to thank them for their support and appreciate how special they are. I am truly blessed to have her.

[irislita]

Ur post almost made me cry...so nice to read how u stick together!!! I hope u will get a true specialist that makes such a difference.great to have u here.thanks for this post ;)

[selmaS]

  Hi....I have to agree with jiggle on the support u give ur fiance` ...not all with this condition have a spouse, friend or family member that is willing to be supportive, understanding and be an advocate for them....so thank u on his behalf and for all of us it is wonderful to see : )

As for the 2 NS's I had the same experience, it is the problem when the Dr is not a true Chiari specialist...and even when u do find one that is, see another one and compare them...not all Drs r likable....and have a bedside manor u may not be comfortable with...and ur BF should be in order to get the best from the Dr.

Always compare Drs of the same caliber....and never take how they describe their abilities as gospel...talk to other patients.

Just know, even if u find the right Dr, and ur BF is a surgical candidate he may not be pain free... surgery is not a fix or a cure, just a means to slow progression and restore CSF flow....in hopes of reducing symptoms and pain.

There is a Dr in Miami...have u been to him? Dr B. Green?

[jiggle93]

Congratulations on your engagement and Welcome to the Chiari Family. I would like to thank you for taking the time to be actively involved in educating yourself in support of your Fiance. I personally feel that those who are supporting us on a daily basis need a HUGE pat on the back! It sounds like you both are wonderful caring people. Keep us posted on how you both are doing.
Jiggle