A NON-leakers observation

[LauraL840]

For the longest time I thought (what I'm about to say) was a "guy-issue", or mostly a "guy-issue", but now I'm coming around to a new way of thinking.

We've got two new threads discussing how to make decisions regarding treatment and how far do you 'go' in search of healing. Well, it's really got me thinking about the 'observation I thought was my DH', but may apply here...

It's a known phenomena that most men do not like going to doctors and don't really go unless 1) their wife MAKES them go, 2) their job MAKES them go, 3) their pain MAKES them go. So you can forget yearly physicals and PSA screens and all that other stuff unless one of those 3 events occur. And yet (in our house) even when DH is SICK, he won't go until I drag his butt to the doctor or the ER (both times he had meningitis I literally had to TALK HIM INTO THE CAR)!

Throughout our leaky journey I had to light a fire under his butt to get him to make A LOT of appointments and decisions about his care regarding this HA and leak. I mean, ALL his neurologists at UNC knew I was desperate :o to have him fixed, but he was all 'stoic' about it and not so demanding and desperate :rolleyes:. There were honestly (honestly) times where I wondered 'does he really want to get better, or is he just content to live life like this?' :confused: Matter of fact, it got to the point where I flat out asked him if I was the one who needed to accept that this headache was a part of our lives if I was the one who needed to learn to live with it. That was our 'fish or cut bait' moment and that happened 20 months into this headache! I think he realized he HAD A CHOICE TO MAKE AND HE HAD TO MAKE A CHOICE!

I thought all this was a "guy-issue" - you know, not wanting to go, liking to go, taking time to go, making excuses, giving me reasons, etc etc etc. But in reading these threads, I think it's not a guy issue at all. I think what I'm 'hearing' you all say indirectly is that "I hurt so bad all the time and I really do want to get better but I just want "better" to happen for me". So I guess I'm asking if this is the case? I know sometimes we all just don't know where to turn or what to do ... but for some folks here that's not the case. You know where to go and what's next (or what needs to be), but I just have to wonder if it takes so much effort just to EXIST through each day that you can't fathom the effort it might take to get to the right doctor to receive the right treatment to actually get healing or get closer to healing.

I have to remind my husband frequently that although he is now headache free and not leaking, that his body is exhausted from fighting itself to heal for 21 months, plus major surgery! He still tires quickly and is depressed at not being able to jump up and do and go as he WANTS to! See the difference? Now he WANTS to do the things he could hardly imagine doing even a month ago, but his body still isn't ready! I bet a million dollars now he's had a 'taste of freedom' from his headache, that if it came back, he'd be the one calling for reservations and appointments and putting our butts back on a plane to LA. He'd do anything to keep this headache gone forever!

[sadlisa]

Good thoughts Laura,

I as a woman agree that men are very difficult to get to go to the doctors. I have always been healthy and would seek help from a doctor when I felt it was needed. However, when I had meningitis I didn't want to go. I wanted to stay home and sleep. I felt I was just having a flu. This was after septis had started to set in and I was comatose. So my husband had to drag me out to the car and force me. I don't think anyone is in their right state of mind with that disease. I have heard this is the common reaction and it is why sometimes it is to late by the time medical help is sought. Thank God for family!

Now that I have these "after effects"/symptoms from my meningitis I find the doctors are so sure my symptoms are permanent that it is a constant struggle to even get one doctor to understand. I have been told by so many that there is nothing wrong and I am dwelling too much on this. I think it is the reality of my situation, not the dwelling. They are not the ones who are horizontal from this. They can not, no matter how hard they try, understand how it feels for us. I fear I will go on as being labeled as a hypochondriac, not able to accept my after effects. I can see why anyone with this would want to throw in the towel and quit. Man or woman.

So yes, I want to feel better and want better to happen to me. I get discouraged because my doctors want me to go away. I push and I am labeled. I don't push, I get no help. What is the point in trying anymore? This is why I keep fighting. I don't get their (the doctors) attitude. They can't change their minds that there just may be a cause to the "after effects" I am having.

So sorry for the ranting. I am just sooooo very frustrated with my HMO! I have been denied an outside referral. It has now gone to the regional committee for review. I am usually optimistic, but I fear they will not approve this. I will though write Dr. S. and ask his opinion. Maybe he will check out my films and find the missing piece to my puzzle.

I am very happy your dh is finally healed. I thank you for keeping us posted and responding to our endless questions. This board gives me so much strength. You all are always in my thoughts and prayers. Thanks, Thia

[LauraL840]

Thia,

I absolutely agree that you should have your medical records/images sent to Dr. S for his review and opinion. Especially since it's FREE! I also think you should be pointedly blunt with him regarding your HMO issues and ask if there's anything that can be done from HIS end to get your referral done by him and approved by insurance.

[dkdreamer1]

Laura,

I just wrote an hour long post to CSFchallenged in the same vain as this. My computer however thought that it took me too long to digest her post and yours together on my plate. I had just finished eating and it threw it all in the garbage, plate and all. So tommorow i am going to dumpster diving. Too tored tonight.

My life consists of so many appointments, therapy, drs., meds etc. that some times it is easier to stick my head in the sand. But i have my forver boyfriend to pick me up and take up the slack.....Just like you have done.

Thia,

i have had 23 surgeries, over 100 proceedures, probably a years worth of time in the hospital. So when some Drs. see me they think nobody can have so many things wrong. Well, i almost died 15 years ago because they wanted to put me in the looney bin. My husband took me out of the hospital ama and took me to a university hospital. They found the problem fixed it and then wrote my case up in a medical journal!! They said i was a walking time bomb! it happened another time with something else, so although i have never written a word, i have been published 2 times. Thia, Don't let Drs. hold that much power over you. The nuerologist are the worst. So many of them think they are mini God's. If they even suggest that i am mental i now look them in the eye and say "great, i could use a month off to wear fuzzy slippers, make potholders for my family, and never get dressed because i hate wearing a bra!" Then i ask "at the end of the month will i be fixed?" I have yet to visit a mental home! Believe in your self and remember you have the right to fire them. I had to do that 2 weeks ago with a dr i had never seen who judged me before she touched me. She actually had the nerve to show up in my room the day i left. It wsn't pretty. the 4 drs. on my case said i had a stroke and that was my discharge diagnosis. She looked at me and said "you don't want that label to follow you" I said "we don't always get what we want do we?!" Thia stay strong and listen to your body......not arogant BAST###'S

good night,
DK

[Concerned Gal]

I think the reason why some of us aren't eager to pursue this is the way our medical professionals make us feel.

I know the reason why I haven't ventured back to the neuros voluntarily was because of the state i was in after my last visit (you may remember the post "Don't remember everything you read" where I was told i was "cured" just because I had undergone another blood patch).

I felt so belittled and degraded by the whole experience I couldn't submit myself to that again and deal with the symptoms. They told me they wouldn't do any more for me until I could no longer take the pain again anyway. So why bother going back.

It has taken this long for me to be comfortable in going back (although I probably didn't have an urgent need to - i wasn't in utter pain and not going back because of the way they made me feel). I know I would be back there like a shot if i needed urgent treatment - belittled or not.

I truly feel it has taken me this long to think that they aren't at home worrying about me, and that I have to be the one to worry about myself, and if I need the treatment or want a review etc I will go in and demand it as I have to look after myself first.

That's just the way I feel.

(PS Don't forget that I don't have the same diverse range and choice of specialists here that know anything about it - otherwise I could switch to another)

[LauraL840]

CG - isn't that the stink of it all?!?!? I wish you did have more options! :( I know that you aren't alone in the way you feel and the facts that remain. Several leakers from Canada also feel limited as to who to go to in the medical community that is knowledgeable and experienced enough to treat them! I wish it was easier DONE than SAID to get you to Dr. Schievink, but again, at least you can have your file and images sent and have his advice free of charge and without the travel! :)

[dreb]

Laura,

you are right. I wanted better to just happen "to" me. When the HA's first started I saw a neurologist who diagnosed me with migraines. After three months of heavy duty meds, a trip to the ER, and no relief. I stopped the meds and left the neuro. He didn't help me, he didn't listen to me. I went to a chiropractor (looking back now, probably not a good idea) who said I had a subluxation in my neck. Did adjustments, which did help, but the HA would always return. My husband kept telling me to see another neuro, and I didn't. I felt they were just going to tell me I had migraines, medicate me and send me on my way. Alot of doctors & people would say, maybe its stress, anxiety. You work & have kids, its anxiety. That just pissed me off (sorry). I suffered for 18 months. Helpless. Until a doctor I work with (who is very bright & hardly ever works at my center - he was my guardian angel that day) reviewed my MRI (which was initially read as normal) & listened to my symptoms. He said that I had cerebellar tonsilar descent. He referred me to a neurosurgeon in Miami. That was where I was finally diagnosed with a spontaneous CSF leak & had surgery. My point of all of this is, you are right. We leakers are in so much pain, we can hardly think. I just did what I had to do to get through each day, and then came home and went to sleep. My husband tried. But I could not find the energy to help myself find the help I needed. Until it fell in my lap at work.

When I finally decided to go to LA, my husband did EVERYTHING for me, just as you did for your husband. If it weren't for my husband, I would not be where I am right now. He did the research, he made the phone calls, he made the appointments, he made the reservations, etc. I think I was just trying to survive, and if I had to think, and make plans, I would just fall apart. It's like my mind shut down when I was at my worst. It is a difficult road, and if we are lucky enough to have someone by our side to hold our hands, then we can pull through. You are an ispiration to many, and your advice & words have helped so many of us on this board. Thanks for your endless support, and honest advice. It is appreciated.

Deb