I will be going into the hospital the week of the 15th of September for brain surgery to try and help the cluster headaches, trigeminal neuralgia and all the other problems going on. I am scared spitless of course and yesterday my husband came home and said oh by the way I think we sold the house and have to be out by the first of September. WHAT!? And then was informed that since I will be cured (WHAT?) when I get out of the hospital I can do most of the unpacking, picture and curtain hanging and what have you. He was honestly amazed that I will be unable to take care of myself when I get out. I cant cook, clean, lift washing, drive, cycle, shop or anything. I will have to be watched for a few days or maybe even a couple of weeks on a daily basis to make sure the hole in my skull does not rupture. So now he is totally annoyed that he will have to do it all by himself, ask his friends or hire help. The cat and I will be looking for a place to stay during the house move for a few days unless it is before surgery. I was shocked by his behavior actually. I have talked with my doctor about it and she suggested I speak with my danish caseworker and find out my options since he has also told me that I abuse him with my crying and constant pain that I try to hide. (WHAT?) I dont understand how my constant pain abuses anyone but me. If someone can explain this using small words and simple language maybe it would help. In the meantime please send positive vibes my way. I am truly scared of this surgery since my pain meds will be taken away before and I will be given little if any afterwards according to the neurologist. My only comfort in this is that post surgery pain is nothing compared to a cluster headache and I will survive it.
Not a happy camper here, Sophia :-/

Based on your repeated descriptions of this guy, I would think your priorities should be:

1. Brain surgery

2. Marriage counselor

and if that doesn't work,

3. Divorce attorney

Sending all the positive vibes, prayers and good ju ju I have your way, Sophia.

Hugs,
Beth

Oh sweetie, you are immediately on the receiving end of every prayer, vibe and juju I've got.

As Brew said, your first priority is your surgery, your recovery, your future health.  Everything else, including your husband, becomes secondary.  If he is annoyed, tough shit.

Once you have recovered and are back to good health, with hopefully no CH, then  Brew's  list should be followed., If marriage counseling doesn't work, then #3 just might have to kick in.

Sorry, I probably should not be addressing your marriage, but....your CH and your health is primary.

Sandy

Wow Sophia, sounds like you've been handed one HONKING s**tstorm to have to power through. :o

The only words of consolation I can think of are that at least it looks like there could be some real light at the end of the tunnel for you.

A couple months from now you could possibly be starting to dramatically recover, and that could be a really good thing, right?

Please hang on to that, and I'll join the chorus of those wishing to help you to get through this next phase.

Okay, first, I agree with Brew.

Second, on your worry about pain after the procedure, with every surgery I've had, they usually won't leave you in severe pain afterwards. If it's a minor procedure, it'd make sense for them not to give you anything. However, this is a major surgery. They usually want to keep you calm, and out of distress after one... And if you're in severe pain, you won't be calm.

If that doesn't calm your fears about them treating your pain afterwards... You can speak directly with the neurosurgeon. Mine wasn't going to give me anything to go home on until I asked. He had no problem writing it, once he found out that I was going to need it. I didn't ask until after the surgery, since I didn't know how I'd feel after the shunt was placed. Once I woke up and was in pain, the nurses called him and let him know I wasn't doing too well. Some things doctors have to play by ear, to see how you'll do. That way if you don't need the pain meds, they won't be prescribing anything unnessesary.

My prayers and thoughts are with you, I know everything with the surgery is gonna work out just fine. You'll feel a lot better after all of this is over. Hopefully you'll wake up and feel good as new!

PFDAN
Mystina

Wow - as if these headaches weren't enough to deal with, and unsupportive husband with a lack of understanding too! I am very new to this whole thing, but just wanted to say good luck. I had brain surgery last year, because my previous cluster attack (before I knew what they were) was actually misdiagnosed because I also had a very large meningioma! Anyway, although surgery is terrifying, you actually have very few "pain" cells in your brain (hard to believe as a CH sufferer I know) but weirdly, the pain when I woke up was not NEARLY as severe as I was expecting and I had a 7cm diameter hole in my skull. So, I will be thinking of you and say a prayer that your surgery is a success and that your husband finds some understanding.

Good luck xx

Sophia, I pray the surgery is successful in eliminating your pain, and I bet you are very scared about having this procedure, especially without any support from Hubby!
I think he has made it quite clear his views on your pain. I am sorry that it "abuses him" and maybe inconveniences him >:(

Is there someone that help you when you get out of the hospital? As any surgery you need recovery time.

Our prayers are with you. [smiley=hug.gif]

Oh you all are absolutely WONDERFUL!!!! I am seeing results already!! DH came home and told me we are moving and he said first that it was the end of this month. Then he changed his story and said it was the first of October. This story change was after several days and several discussions with the bank saying that they couldnt push the loan thru faster than 3 weeks. I have lovely wonderful friends here lined up to help me after surgery and with the unpacking. I will unpack just enough to get by until I am ready and physically able to do more. And he got the shock of his life one Tuesday night when he came home and I was in the middle of a kip 8 ch, a trigeminal neuralgia attack, a migraine brought on by crying ( my much loved Uncle committed suicide and will be very missed by his family) I was crying and trying not to scream and was vomiting and he had the nerve to ask what was wrong. I told him and he went on to talk about how wonderful the new house will be and how I will have fruit trees to pick and 5 acres of strawberries to pick and my own business to run (all this is news to me. I actually plan on going to school and learn computer programming and repair) And he will teach me to make horse halters and here I am laying on the floor and I sat up, looked at him and very calmly told him to go and physically do the impossible and procreate with himself. I was under strict orders from the doctor for bedrest and he wanted to know what was for dinner. I looked him straight in the eye and said that I was not killing myself so he could eat. I was going back to bed and when he was done cooking to wake me up so I could eat and take more pain medication. He was so shocked he followed me with his mouth open catching flies. Then he got onto me about something to do with my attitude and how I cant take him literally. (What) I am done. Brew is right. I have looked up where to go and what to do after my surgery and since we are moving I have to go to the courthouse anyway so I will ask all my questions then. It looks as if I may be able to stay here in Denmark because I am a student and have been here over 2 years. This is good because my health care in America would not be that great. I am done being annoyed by him. I am a patient woman and can wait out the time until I am better and have also filed another disability claim in the USA. I decided a lot of things over the past 2 days when I was sick in bed with an asthma attack and bronchitis and I have decided I am not a doormat. I may be 40, fat, short and have trouble with danish but I am not stupid and I deserve better than him. Even if better is alone and living with my cat or perhaps another lady to keep company with. I dont care who she sleeps with as long as it isnt me. Giggle. Thanks to all of you for the good vibes and such. It really helps to know that I am not alone, that people I never met actually do care, that regular people do not treat their spouses that way and that it is ok to be sick sometimes. The trick is to get the most out of life that you can. I have the wonderful opprotunity of learning about different cultures here while I learn danish and I have learned that many people are very loving given the chance and if treated with respect they react positively. I have made wonderful friends who will instruct me on vegatarian food while I am recovering since that is what they eat. And 2 ladies will help me with learning to tie headscarves to hide my baldness. 1 lady gave me a super pretty hat and a gorgeous head scarf. Another one sms´ me every day and a man schoolmate of mine sms´me once or twice a week and will help out after the surgery if needed. So will the ladies. I like being loved and I like to give it so to honor the family that brought me up, my dead uncle and my friends (you all included) I am meditating and sending out big hugs to all of you every day. Thanks so much again and again. I think you may have saved my life. I was getting severely depressed.
Sophia

Sure hope they find something in there they can fix.

             Potter

Your marriage is none of my business but since you have poured your heart out about it....and hopefully needed to get it out, I've got to say this to you.

  I would have run as fast as I could,  right after 
Quote:

And then was informed that since I will be cured (WHAT?) when I get out of the hospital I can do most of the unpacking, picture and curtain hanging and what have you.

  He obviously only has HIS best interests at heart.  I hope everything goes well for you and that your friends will take care of you.

I hope your doc has one hell of a tool kit.  Maybe you could ask him to surgically remove your husband  :D

Sophia,

Wishing you all the best girl.. ;)


Lefty..!

Thanks to all for listening to me whine so much!!!! I think you may have saved my life. I think I will do as Ginger asked and ask the doc to surgically remove the husband!!! Giggle wonderful suggestion!!! The cluster headaches are worse with stress for me I have noticed. It has been the week from Hell and I wont start whining again. However last night when I was getting another lecture from him about god knows what I picked up the iron skillet with both hands, slammed it on the counter and threatened to smack him with it if he didnt shut up. I have been sick in bed for over a week and it took all my strength to pick that skillet up. I couldnt have smacked him with it even if he had helped me. Well apparently him being 16 inches taller and heavier than me didnt make him feel very safe because he threatened to call the cops. Then he loaded me in the car and tried to get me committed to the nut house. I have had a death in the family this week, my uncle ate a bullet. I have a preoperative infection and rash on my scalp that is not responding to treatment and may just screw with the surgery, my disability case was denied and I had reached my limit and here dude is yelling and screaming he is throwing me out on the street to die after my surgery and wont even ask why I am crying and upset. Must be a danish thing. Wait I wasnt going to whine. Sorry guess it must be the fever of 102 and complete disbelief that somebody so huge could be so scared of me that he wants the cops there or a doctor. I am 5 ft 3 inches and overweight but gee whiz! He is 6 ft 6 inches and over 200 lbs of muscle. I must look mean. Giggle. Perhaps I can use this to my advantage. How is the job situation there in America? I may have to move home and start over. I am thinking of nursing, x ray technician or the person who draws blood. All the Americans I have spoken to here cant understand the Danes either. At least I am not alone. Gee I scared a viking. ROFLMAO!!!!  ;D ;D ;D

I had brain surgery 4/07 and was out of the hospital in 4 days.  You'd be surprised how routine it is now.  You'll be fine.

But yeah, the standard recuperation time is 3 to 6 weeks.  And believe me, you'll need that time for your brain to heal.

Thanks Mrs C. I am making my final arrangements just in case and will take notes since the scared viking will find a way to avoid helping me. I am also lining up help and making food in advance. Hope he doesnt eat it all. GRRR!!!! Oh well I am planning on a fast anyway. Giggle. I need to lose some kilos so I can try and get better and get on with my life. 3 to 6 weeks huh? Drat! Oh well at least there is light at the end of the pain rainbow. Big hugs, Sophia

Just a quick ? what type of brain surgery are you having ?¿? Terry Ü

The neurosurgeon is having trouble translating it into english. I THINK it is a meter pushed thru a hole drilled into either the top of my head or inserted and bolted to the back of my neck and will measure the fluid for 24 to 48 hours but he has also said they may decide to look around for a tumor while I am there depending on what the meter says. So my severe problem with this language is a real barrier this time. I am getting better with danish and can follow it if it is spoken slowly, clearly and at a childs level but the neurosurgeon cant seem to understand that and is stubborn about drawing pictures. GRRRR!!!! I HOPE that the surgery is minimally invasive and shows nothing out of the ordinary. However it would be better for my disability case if a huge tumor with teeth and hair was found in there or something because I can barely get out of bed these days and keep getting turned away from the ER even when all I ask for is oxygen and a muscle relaxer. The muscle relaxer is for the Trigeminal Neuralgia so I can take the edge off and meditate. I hope they can do as the nice gentleman suggested and do a husbandectomy giggle. I am planning on fasting since the husband is not going to feed me when I get home unless I make soup and stuff to freeze, thaw it out myself and make it super easy for him to microwave. Husbandectomy is definately in order here. Who needs more pain than a cluster headache anyway?? You all are the best support and I will carry all the good wishes with me when I am being wheeled into surgery and thinking of all the nice people I have met here and hoping that if something does happen I can pray for you all on the other side and ask to get rid of cluster headaches for good and all. Preparing for the worst and hoping for the best. Thank you everyone. This has been a rough few months and I couldnt have done it without you. I know we all have problems but this is the only safe place I can vent and I am grateful. Gentle and supporting hugs to all of you. Sophia :)

Fasting is no way to successfully recover from major surgery. I'd think a "plan B" is in order.

English is Denmarks official second language and is taught starting in the second grade.  I find it hard to believe a Dr. doesn't speak English.  Hmmmmmmmmmmm.

Quote:

The neurosurgeon is having trouble translating it into english. I THINK it is a meter pushed thru a hole drilled into either the top of my head or inserted and bolted to the back of my neck.

Sophia,

If I was having bolts inserted into my head, I would at least like the procedure explained to me in a language I understand.

Get yourself a translator girl..!


Lefty...!

Hi all, to answer vietvets reply, yes they can and will speak english but the more advanced medical language that my particular surgeon knows is mainly danish and I dont understand advanced danish. I am at the level of a 8 or 9 year old now.
The surgeon sent me to the nurse who has informed me thru my husband who was doing the translating that my surgery will be done under a local with no pain meds to follow. I will be in the hospital with no pain meds for 2 weeks and have to agree to follow their plan of no pain meds for 2 months no matter what. This is to find out the true nature of my headache they say. They will also withhold oxygen and caffiene unless I can sucessfully convince the doctor that I need them for cluster headaches which he diagnosed last year and then took away from me because oxygen is addictive (duh, I think he isnt using enough!) They also found the trigeminal neuralgia last year and then said it was from medication overuse. Nope, I know tn when I feel it and it is tn (trigeminal neuralgia) makes your head feel like it is on fire. So while stupid hubby was translating this for me I started to cry and begged to be put on the pain management list because I went thru this minus surgery last year! My GP is in agreement with them so I have no recourse and in between a rock and a hard spot. That place is getting tighter by the minute. The literature I was given (I had to translate it myself) said all the same things I was told. I am scared. The nurse said since I was in this much pain all the time that the after surgery pain should be easy to deal with without pain meds and I dont get any. Nobody does according to what the husband translator said. I will be locked up with 5 other people in a similar situation and under close supervision for 2 weeks. Now this is really not the time for me to go thru this. My uncle just comitted suicide last month, I have lost much of my family thru them disowning me and my husband said just this past tuesday he hates me. The nurse said I am paranoid, gee I wonder why? I am going along, minding my own business, trying to love and support as many people as I can, trying to get the most out of life and then I get hit left and right with a lot of crap and I dont deserve any of it. Conspiracy theory against me .... of course not! Super bad luck´...... yup. And I dont like it either. I am hoping a miracle occurs and I dont have to go. I will call the GP again on Monday and see if I can get out of it. After all I did go thru all this last year at this time for crying out loud! And if the stupid doctor wont even let me have oxygen I will not be responsible for my actions. Addictive my foot! Of course it is. I have never seen a dead person breathe!
Sophia >:( :'(

Can you somehow get to other pain clinic etc in Europe? Or in USA? Can GP order or contact with other pain clinic, or neurosurgeon? What do they say about person being in chronic pain for 2 months without medications? Any at least psychiatrist? Any antidepressants? I mean even people going off addiction from marijuanna cocaine amphetamine get some supports, not just being left on their own.

Also if I missed it, what do you think they meant by brains surgery? Cutting nerves? Placing Occipital Nerve Stimulator or perhaps cutting part of grey matter? Which would be weird.

Oxygen addictive?

OK my impression of general medical professionals in general  just sunk a few more levels, and it was already way down in the basement.  >:(

Well, tie me to an anthill and smear my ears with jam. I'd have been on yesterday's flight out of Copenhagen.

This truly sounds like Frankenstein stuff.

Brew wrote on Sep 11^th, 2009 at 1:48pm:

Well, tie me to an anthill and smear my ears with jam. I'd have been on yesterday's flight out of Copenhagen. This truly sounds like Frankenstein stuff.

Sci-Fi.?

       Potter

bejeeber wrote on Sep 11^th, 2009 at 12:30pm:

Oxygen addictive? OK my impression of general medical professionals in general  just sunk a few more levels, and it was already way down in the basement.  >:(

Don't know about the rest of the profession, but it gives me a very uncomfortable feeling about this Doc.

Brew, lets go fishin, ok? I could use some runnin away from home. And boy oh boy I really want to video the conversation I will have with my neurosurgeon again when I tell him yet again to kick his oxygen habit he annoys me. I will supposedly have access to physical and mental therapy but it will be in danish and as I have said my danish sucks big time and I have to take homework to the hospital with me. And nope, I have had a friend reread what I have translated and she said I heard and translated correctly, no meds what so ever. Just out of curiosity, how much pain is too much? When you have been like I have the past few days (out of pain meds and no refills, screw my bad luck!) and crying constantly or does it actually get worse than your head on fire, white hot pokers in your eyeballs, your teeth feel like they will pop out of your head and the world is much too loud and you wish everyone would please be quiet and just let you die. And then to add insult to injury you start vomiting because your migraine set off a cluster headache which set off a trigeminal neuraligia attack which made you grouchy and nauseated. I wanna go fishin with Brew!!! Lets go for salmon ok? Or trout? You can have the brew and I will have root brew and we will have a lovely time!
Hanging on by my toenails, Sophia

I may sound stupid and perhaps rude and I apologise in advance for it, but have you tried every possible thing for all these malady? Botox injections, hallucinogens and others I cannot think that could work for at least 2 of these diseases.

Never heard of physical therapy being in a foreign language.

               Potter

Physical therapy in a foreign language is point and grunt as far as I am concerned. The therapist will say things like go do this with that and I am standing there going what? I dont understand you please slow down and finally it is just point and grunt or I ignore her. I go to hospital tomorrow and will be out of touch for 2 long weeks. Thanks for the support everyone. If I survive this crap I will be back a week from Tuesday. Probably fasting and grouchy but that is my last resort. Oh and for anyone going off serious addictive narcotic pain relievers.... in my opinion you are not addicted if you can white knuckle it thru the DTs  after letting the doc take you up to 15 to 20 mgs of morphene a day and then tells you that you are a serious addict and cant stop cold turkey. I did it!!! And I aint listenin do the stupid doc again about that stuff. The DT business wasnt fun! And that will teach me to believe that docs know what they are talking about here. Pain management my big toe. Oxygen addictive but morphene is safe and then when push comes to shove the docs still arent happy. Well at least now I know and wont do that again. I did try shrooms and the doc refused to listen when I asked about botox. I have tried nearly all the headache remedies without ibuprophene or aspirin since I am severely allergic to those and nothing works but sometimes oxygen and caffiene. I did make a nice topical solution of olive oil, lavender oil, peppermint and eucaliptus oil and rubbed that over my temples and hairline for migraines and it worked pretty good. But the doc will probably say that is addictive as well so .......
See you all in 2 weeks!
Sophia :-?

I think this doc treats all patients as clueless people that when asked about what is heart organ doing, they will say that is responsible for eating...

I think he just dismisses you big time, because he is used to be an ass as doctor.

I hope all goes well because I think you deserve as every person pf time and lots of it, I hope they will at least offer you some botox to nerves and in future maybe ONS!

Also I guess you said you tried mooshies and they did not work at all even when dosing mulitple times? Unless you couldnt get off meds because of how severe your condition is so you tried with meds?

And is Botox helping you big time?

Sophia - you will survive this crap!

What with everything you've withstood, you're up to it, this one won't get ya. I'm not particularly religious myself, but I'm trying to beam you good vibes and junk at least.  ;D

Sounds like you have unfortunately stumbled across the equation that all too often holds true:

Doctor = arsebag.

BUT the surgeons do still tend to be good technicians and they'll do you right this time.

See you in 2 weeks when this phase is HISTORY.

Hang in there and come back and hang out here  :)

-Bejeeber

MattyAA wrote on Sep 11^th, 2009 at 6:55pm:

I may sound stupid and perhaps rude and I apologise in advance for it, but have you tried every possible thing for all these malady? Botox injections, hallucinogens and others I cannot think that could work for at least 2 of these diseases.

For one of the conditions she's having this done for, there isn't a lot of options.

I have the same condition, idiopathic intracranial hypertension/ pseudotumor cerebri. They're cutting the hole in her head to put in a meter to constantly monitor how much fluid is around her brain. They usually do it to see what exactly is going on, and to try to decide on the best course of treatment for it.

We've got a few options: Diuretics, Pain meds, Lumbar punctures (repeated often) or surgery.

None of these is a final means to an end with this condition. Sure, you can have a shunt put in like me, but there is no guarantee it'll be a success. (Or that it won't make things worse for you.) A lot of people have multiple surgeries just trying to get it right. This surgery isn't minor in the least, for it being put in the back like mine, the recovery time is 3 months. For it in the head? 6 months.

Marinol is known to help, there's a problem with that though. If it vasodialates like THC, it would trigger her clusters.

Depending on how high her pressure is though, she may be getting relief while in-hospital because if it's over 20, they'll drain it off to protect her vision. They may do it anyways just to see how quickly the spinal fluid builds up.

Hope this helped explain some of this.

Praying for you Sophia. Hopefully through this they'll come up with a way to give you some relief for the PTC.

PFDAN
Mystina

Okay Sophia, expecting to see you back here pretty soon and anxious to hear a report when you can muster one.

Hoping this will mark the beginning of a path with much less suffering for you, and maybe even a visit back to the homeland.  :)

Still keeping the porch light on for you here Sophia.  :)

Hoping to hear from you as soon as you're able.