Life changing decision....What would you ladies do?

[shell89]

6 weeks ago i was diagnosed with Idiopathic Intracranial Hpyertension.

In the 6 weeks i have been rushed into hospital twice to have the fluid drained from my head because i started going blind, each time tests have come back as severe, but luckily my vision has been saved.

So i went to see the specialist on monday, 3 days after getting out of hospital where he was treating me and we were discussing the ways to treat the condition long term. Basically there are 2 ways......1: tablets forever, or 2: a shunt fitted.

I was on 1 form of tablet that i was having bad side effects with, and also wasnt safe if TTC, i expressed my concern so i was taken off them and put on others, which also arent safe if TTC. When i went to see him he wanted to put me on BOTH tablets, to which i just went mental, i couldnt believe it. I told him i didnt any form of tablet as i do want a family and was currently seeing a fertility specialist about PCOS so i wasnt willing to undo all the hard work i had done so far, and especially if they were making me ill, but he was adamant.

He then had the cheek to tell me that at 21 i was still young and could think about having a family in the future ''say when your 23, because thats still quite young'' , i just couldn't believe it, i told him it was my personal choice as to when i wanted children and nothing to do with him, and also that i wouldn't be able to have children at 23 because he would have me on these stupid tablets!!

He then reluctantly asked me if i wanted to be reffered for a shunt - which is something i want due to the pregnancy side of treatment - but he basically hinted that i was too fat for surgery and tried to scare me into not having the proceedure with all the 'complications' and to keep on with the tablets.

By this point i was crying hysterically he asked me if i wanted him to phone my parter and explain whats gone on (partly coz he temporarily blinded me with some stuff he put in my eye - without warning - so i couldnt get home and needed picking up), i told him to ''feel free if you want your front teeth knocking out, because if you tell my partner what you just said to me i can guarantee he will give you at least one black eye'' and walked out - well what i assumed was the way out anyway through the blurryness, either way i stumbled home.

Im absolutely fuming. I just dont know what to do, i do want the shunt but he's now got me thinking, im worrying about every little thing to do with it now! And i'm also wondering wether to report him. It is not his decision when i have children and surely if a young girl who has never had children is diagnosed with this disease then it is not a good idea to force medication on her that is not suitable when TTC especially is she states she is doing so.....his exact words to me were ''Do me a favour dont get pregnant while your on this''....hes a joke

I am due back in 2 weeks for more monitoring.Would you ladies push for a shunt even though its brain surgery??? Or are the tablets a good idea, and just get used to the fact i'll never be a mum???

sorry for the vent ladies.....thank you for your time x x x

 

[gilz82]

Aw hon don't really know what to say but didn't want to read and run

I was advised not to TTC because of my kidney problems, much less serious than what you are going though, and me and my OH sat down and talked about the risks and rewards etc and decided that we wanted to at least try.

There are other options out there, adoption for example, if things don't work.

Think you just need to weigh up the risks against how much you want to have your own babies and go from there.

 

[Mellybelle]

to you, sounds like a rough time.

If I were in your position, I would stick with the tablets, lose weight, the push the shunt option. It really might be better to put off TTC for a while, so you can get your own health sorted out. Probably not the answer you wanted to hear. It might be worthwhile getting a second opinion.

 

[shell89]

Thank-you so much for your replies.

The only thing is with the losing wieght i can't really do much exercise because of the headaches, unfortunately its a catch 22, the condition needs to be controlled for good weight loss but then weight loss aids control if you know what i mean, but i am eating healthy and cutting down on the smoking - i will be quitting on monday yay

I have researched the procedure well and as far as neurological procedures go its a very simple one the only weight risk really is from general anesthetic as usual.

And unfortunately neuro-opthalmic surgeons are very few and far between in this are and my 'specialist' covers 4 hospitals alone and isnt actually based anywhere so i guess ill have to try my best to find someone else for a second opinion, hopefully someone more understanding.

thanx ladies x x x

 

[karla1]

i kind of know what your going through me and my partner have been TTC for 6 months now and although i have my own medical problems (nothing like yours) my doc is really understanding, but my partner has very server hypertention (hospitalised on 3 occassions with blood pressure of 240/163) he is on 4 different tablets for it and 3 of them can cause impotence (not idea when TTC) but he has changed docs to mine and things are now looing better he has been referred to manchester royal infirmary and they are looking at changing tablets and trying other things.

i would def put in a complaint about your doc
good luck and keep us informed i will let you know what has happened with us x

 

[shell89]

Im at manchester royal eye hospital for my eyes but hope/salford for my head......i do like manchester royal because theyre the ones that diagnosed this after my GP told me i was imagining it......i hope things do improve for you its brilliant when someone finally listens to your concerns!! x x

 

[PocoHR]

I really feel for you, it sounds like this whole thing is just a nightmare.

I can understand why you were upset with the doctor, but I think he is probably kind of right. You don't want to get pregnant if your body truly can't handle it. Regardless though, he obviously didn't know how to relay this information to you in a sensitive way, or else you wouldn't have had such a negative reaction.

My advice would be to forget that doctor, after a scene like that you won't feel comfortable with each other anymore. So, if you can, find another doctor, and start over (I wouldn't report him though, as I think the basics of what he was recommending that you do was correct). Realize from the beginning with this new doc that you might have to put off ttc until this problem is fixed (it has nothing to do with waiting until you are older, just waiting until you are healthy). And then let your new doc know EXACTLY how important ttc as soon as possible is to you.

I hope things improve soon, big big big to you!!

 

[K123]

Can really sympathise with what you're saying and how you're feeling. I suffer from opthalmoplegic migraine and am currently unable to see through my right eye. It won't make me blind, it won't kill me, but it is painful and frustrating. I have the option of treatment and putting off TTC for at least a year to let the massively high doses of steroids leave my body completely or letting my eye gradually come back to normal and being able to resume TTC when I feel well enough.

What is important for you (and for me) is your health. While these things aree going on TTC has to take a back seat, because we both will have to be as healthy as we can in pregnancy for the good of our babies. Because the effects of my illness aren't as serious as yours I am opting not to have treatment, but I am taking lots of painkillers and won't be TTC til I feel better. You have to get yourself well. I don't know anything about your illness to comment on the treatment and the shunt may be the best long term treatment, but if you've been rushed into hospital twice in the last 6 weeks you may need medication now before that op can be done. It's not about age, it's about your health. Get a different Dr, explain that TTC in the near future is important to you, but get yourself well first.

 

[MrsPOP]

Firstly, Im really sorry that you've had such a rough time and hope you feel better after venting. It always helps me!

Honestly? If you reported your Doctor you probably wouldnt get anywhere with it, its very likely they will say he was acting in your best interests. You see, he doesnt know what its like to want a child and his job is to focus on your health (well it should be anyway) rather than your aim of having children. Thats his job hun at the end of the day and more often than not Doctors have to tell their patients things they just dont want to hear. Not to be mean, but in the patient's best interests. It sucks but thats the way things are.

For IIH, there arent that many treatment choices and in any condition at all...the less invasive ones are the first-line ones to try because any operation has its complications. Shunts arent as simple as you'd imagine. I used to work in a neurology unit and saw so many of these 'complications' from shunts that were really really REALLY bad. As in...meningitis bad. As in brain damage bad. Not to mention the amount of people who have to come in repeatedly for revisions of their surgery and changing of their shunts etc. So that will be why he was pushing the tablets as it is safer for you than a shunt. Plus, he's got to tell you to not get pregnant on the tablet. If you feel pregnant whilst on them and hadnt been told how dangerous they were to your baby you'd be so angry if your baby was damaged by the tablets and rightly so. He's got to be honest with you hun about that.

As for him hinting your weight is an issue...well...I have no idea of your weight (you look lovely in your picture!) but if you are (like all of us..especially me) a curvy lady then it does increase risk during any operation and I bet if he hadnt have said it then the anaesthetist would have done so during a pre-op assessment. Again, its not nice to hear (Ive been there) but its something that has to be said to a patient if it is an issue. If you have the operation and hadnt been told of the risks involved and God Forbid something happened to you and its found you didnt react well to the anaesthetic for some reason because of weight or something else, you'd rightly be p*ssed off.

K123 makes an excellent point. Your health is and should always be priority and unfortunately at the cost of TTC. Perhaps it would be sensible just for now for you to focus on getting your health better before putting your body through the onslaught of pregnancy whilst you are young and have the chance to try and get your condition stable?

Its hard, because your diagnosis is so recent and you're still going through the emotional aftermath of what sounds like a really really rough time. Its probably not the time to make serious decisions about your TTC journey when your health is at stake. As K123 says, you've been rushed into hospital twice in 6 weeks time because of your condition...so it shows something needs to be done and needs to be done soon. Perhaps the medication may not suit you if you try it and then yes, a shunt would be the best thing. But the medication may help to stablise things so one day you will be able to TTC without putting your health and the baby's health at risk.

I wish you all the luck in the world hun. I really hope things settle for you and things get under control. Please let us know how you get on

 

[shell89]

Thank you so much i needed to hear it from rational points of view!! My mind is under construction at the moment.

As for TTC my and OH decided yesterday that we were going to put it off due to my health and the fact that it would be no good for a baby, i was more upset at the fact that im having bad side effects from the tablets and theyre not working (i have the *sign* my pressures back up again), but hes not listening and also he said that i would be on them long term, decades if not life, due to having such high pressure, so it just hurt me to think i may never get to have a baby after all.

I suppose it didnt help i was so upset about everything, and the way he did say certain things were a little incensitive but i do admit i was in the wrong too with things i said. Though i have done so much research and it annoys me that he thinks i have done the wrong kind, like you wonderful ladies say hes the expert and he knows best. I am overweight, not massively but i could do with losing some so i am going to focus on that and see of there is another medication route, anyone would think i have morning sickness with these pills!!

Cheers for making me rational again!! you are wonderful and i will beat this!! x x x

 

[MrsPOP]

Aw hun, you sound sooo much better Im glad to hear it!

Losing weight...ah me...that's been my lifes work! On a diet since I was 6 years old!!!! Its so difficult but it could really be a positive thing for you to focus on. I always love a project to focus on when Im having a tough time! Plus, losing weight may do your pressures good as well! So everyone is a winner yay!

There are plenty of good diets out there. Ive just recently lost 2.5 stone and have changed to slimming world to slowly lose the rest of the weight whilst TTC. Good luck with it chuck and please keep us updated with how you are doing

 

[wifey29]

Hi Shell,

So sorry that you are going through this. To be honest, as hard as it feels right now, putting off ttc for your health is probably the best thing you can do for yourself at the moment. My husband and I wanted to ttc back in 2006, but we had to put it off until Sept last year for my health. I had to have a lot of major surgeries to straighten my spine. It was so difficult to have all our plans and dreams dashed, but it was worth it in the long run. Believe me, it will get easier, just focus on getting yourself healthy. You will appreciate your baby so much more when the time is right and you are well.

I'm sorry to hear that the tablets don't seem to be helping the way that they should. One of my close friends has the same condition and ended up having to have a shunt fitted which has helped her massively. Sadly she lost a lot of the sight in one eye before hand. My advice would be to trust your consultant and keep positive.

xx

 

[nmariern]

Sorry you have to go through all of this
Just because one doctor has told you one thing doesn't mean it's the law. I work as a nurse and sometimes doctors don't always make the best choices for the patients. You are ultimately in charge as it's YOUR life and YOUR body.
I hope everything works out for you

 

[AndreaFlorida]

I'm over here in tears thats so such a sad story and I would if in your shoes I couldn't imagine completely but I would tell him you really want to push the shunt idea....and if he doesn't like it or agree thats just HIS opinion...THIS IS YOUR LIFE! Explain that one to him next visit I am sorry your having to go through this I just can't imagine the pain and hurt deep inside that you and your partner must be feeling right now. God bless you sweetie!

 

[shell89]

Mrs POP, slimming world is great i love it! I have been on it before and the weight just fell off, plus my mum runs her own class since she's just lost 8 stone on it, so it does work. I'll probably get back on it soon and hopefully i will have a repeat performance, how are you finding it?

nmariern - I agree with you on the doctors! The thing i havent told the specialist (well didnt really get chance to, and didnt want to put his back up) is my mum (apart from being a slimming world junkie) is a sister in peadiatric intensive care, my dad is a retired anesthetist and my brother is an orthapedic surgeon - so i deffinately know about the condition and the risks of surgery, i was sat down an given a lecture reminiscent of ones from my teenage years by my concerned dad and he outlined the risks for me, and it was first hand. I guess i'll just have to see what the specialist says in 2 weeks when ive stopped smoking and lost a small amount of weight, maybe if i do that it will prove to him i am serious about this and willing to do what it takes.

Thank you Andrea, i dont think the pushing for the shunt will work, he's focused on my weight right now, but the only evidence he could bring to my attention was a 'study' that was conducted on 100 people with the condition. They took all the measurements of pressure etc and then put them on a 500 CALORIES A DAY diet for 3 months!! (because thats healthy!) and they lost and average of 15kgs each and when the tests were repeated all the measurements were much lower, so based on this i think hes not going to be happy until i shift the weight and get down to a lettuce leaf a day then he will think about a shunt lol, but thank you for your kind words, and dont get upset, i have done enough crying and im not going to do any more. I will excercise instead

x x x x x