Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

Oh dear, not again :( Also praying you don't catch this one. Is dt1 still OK this time?

I got the CLEAR colcospocy result yesterday!

I was absolutely convinced that I would receive the worst news. It was a big one because I had a very big scare 5 years ago and had to have a cone removal.

Should I tell everyone I know? It feels personal and overindulgent to announce it on fb. Do others do that?

That's fantastic! Really pleased for you.

As for announcing it on FB... I'm sure an AIBU thread on such a question would ignite within seconds . Personally speaking, whereas I certainly like having friends share in my good news, I'm not sure I'd want all of the colleagues and passing acquaintances on my friends list to be in possession of such detail regarding my nether regions. I might send a text around instead.

Shame it's not a sunnier back holiday for you to celebrate...

Yay jif :) that's ace!

for Jif.

I don't really know a lot about FB, but I would certainly be thinking about celebratory drinks with close friends.

:o for Jif. I used to put a lot of things on my old FB re my illness I found a lot of the people were ok about it but some weren't happy. So it all depends on the people who you have on :) . Most people on my old FB was people who had the same illnesses and supposed to offer support

Celebratory drinks sound like a great idea :)

I'm still in a lot of pain, Ive phoned the duty surgeon and cried down the phone to him and said "You can't leave me like this my head is going to explode" so he got me in I think to just stop me from crying to him and he did a LP again it was under Xray which was the worst one I ever had, I hated it, it hurt so much that the DR was thinking if Gas and Air would help. I finally got it done after an hour trying they finally got to the right place. My Opening Pressure was 56 which proves the Shunt has failed and its not me imagining the pain. I'm so annoyed as I know my body and I knew the shunt was not working. The closing Pressure was 12 :o which I'm really enjoying, yes I feel a bit low pressurey (I don't think that's a word) but my head is not going to explode.

The Duty Surgeon phoned my Surgeon and he said I will need ICP monitoring done just to make sure the Pressure is right so I'm going to get a call to get another "Bolt" put in my head and to be stuck in bed for 48 hours which I hate as I can't move through the pain of the bolt as it tries to pull out of my brain on every movement and the only way to get comfy is to lie flat with the tubes hanging over the bars of the bed just to help ease some weight that the tubes cause. The machine also beeps every hour so I'll get no sleep AGAIN. I hate it, I wished the Duty Surgeon never told me.

<a class="break-all" href="http://www.google.co.uk/imgres?um=1&hl=en&safe=off&client=firefox-a&sa=N&rls=org.mozilla:en-US:official&biw=1366&bih=645&tbm=isch&tbnid=WbMTyUGkVZ5fQM:&imgrefurl=www.doereport.com/generateexhibit.php%3FID%3D9919%26ExhibitKeywordsRaw%3D%26TL%3D%26A%3D&docid=IvAoZ-44yUEs7M&imgurl=www.doereport.com/imagescooked/9919W.jpg&w=432&h=285&ei=ULqlT-7_KYyr8APq8dHzBA&zoom=1&iact=rc&dur=265&sig=107886650883043070470&page=1&tbnh=119&tbnw=180&start=0&ndsp=21&ved=1t:429,r:9,s:0,i:91&tx=166&ty=72" rel="nofollow" target="_blank">this is a bolt :(

I hope everyone else is doing good.

BackPack I'm so sorry. It sounds as though you're endlessly being sent round in (ever more painful) circles, and realy having to fight to get your pain taken seriously. It seems as though you're getting progressively angrier and more desperate. In your position, I would be, too.

But from what I understand (which isn't a lot, admittedly) the bolt sounds like it may be a step forward in providing some sort of understansing of why your ICP keeps rising and why your shunts keep failing or appearing to fail? It seems as though what's lacking is any sort of long term plan... might the bolt monitoring help establish one? And will you have a chance to speak to the surgeon about pain relief at the bolt site?

I can't believe that you are stuck in hospital again Backpack .

I'm glad that the duty surgeon managed to get your pressure back down with the LP, but so sad that the process of him doing so caused you so much pain. I don't know how you manage with such invasive treatments. The bolt sounds horrific, but as Breastmilk said, if it demonstrates to the doctors how quickly your ICP is rising, then perhaps some good will come of it. It is so easy for us to think that when we are not the ones having holes drilled in our heads.

:( backpack, whilst its good to have proof of what you knew to be true, the next step sounds awful. I'm so sorry. Is there anything that can help you to get through it even just a little easier?

Having one of those I-can't-cope-with-anything moments. Friendship woes again :(

Somehow, simply typing out the sentence and pressing the 'post message' button provides some catharsis. So honestly, please don't feel the need to try and respond.

I'm not in hospital yet, they allowed me home as the Surgeon is unsure when it can get done, I will get a phone call on Tuesday with a Date.

The bolt apparently just says what the pressure is over 48hours and what makes it rise more (I get more headaches when I'm flat on my back or bend down then back up) I'm unsure why I need one tbh as the LP's show an increase pressure.

I'm just fed up as this has been going on for 2 years and we are no closer. I first had surgery 3weeks after diagnoses so I never got a chance to try medication, they rushed straight into a shunt which might have made me worse.

I'm going to sit down and write a list of all the questions I need to ask my Surgeon just to make sure this is the right treatment for me.

Sorry you are having problems with your friendship again BM

My guess is that if they can show what makes the pressure rise, they can start to think about how to keep the pressure down. But maybe it'd be worth starting a separate thread, like mad did for asking about the TOE and ablation? Someone else on MN may have gone through this, and may be able to provide some knowledge or experience. It's a shame there's nobody else on this thread with a similar brain condition.

But thank you for being so supportive. You really are amazing... no matter how much pain you're in, you're always so thoughtful and considerate of others.

Backpack, I'm glad you're not in hospital, but what a horrible thing to have hanging over you.

I'm looking forward to my dd1 coming back from camp. Dh will collect her later today. I hope she survived the cold, I have a feeling that she will need a duvet day tomorrow.

I've had a very busy weekend, and been to three separate events. I'm actually really glad that I cannot drink anymore than one drink a day. Although I'm tired, I'm not hung over, and previously I would have been because it is hard to stop at one drink when everyone else is knocking them back. Now it is easy, one drink and I'm done. Yesterday I went out to lunch for my mum's birthday and had a very nice glass of Barolo. If it is going to be one drink, then it's going to be a decent one . Then in the evening, we went out again and it was lemonade.

BM, try not to feel let down by friends. We have all been there with rubbish friends. Sometimes they are so caught up in their own lives that they don't think of others, but they can turn around. It is possible to get your friendship back, but you need to be patient and not let it upset you. In the meantime, you have your dh and dc.

I'm the same now with alcohol... and yes, the absence of hangovers is fab consolation but don't ask how much chocolate I just ate. Glad you've been busy.

In terms of friends... I can mostly cope with their lack of supportiveness but what I cannot cope with is being told what a disappointment I am to them. What I'd failed to take on board is the extent to which several friends had been looking to me as some sort of role model with a duty to protect them from the reality of my illness... though I suppose until a few months ago, I'd managed by and large to conceal it from them and moan on MN instead.

Dd1 is back from camp, very dirty and very tired. Her tent leaked on the first night, and that combined with the cold ensured that she didn't change her clothes. Somehow, she has caught the sun on her face, even though the campsite was a mud bath. I don't think that she will be in a hurry to camp again... Could be useful to remind her of this when she asks to go to Glastonbury in a few years.

BM, I'm sorry that your friends are not supportive. I have been lucky with mine, they realise that lots of late nights are not for me. I have had to deliberately lose some though, lovely people, but people who always want to meet at nightclubs or late night bars. I can't do that, although there is nothing I like more than a meal with friends. Some people probably think that I'm a rubbish friend because I cannot keep up with their social lives.

Eurgh. Hope your DD1 is now well scrubbed. I remember my poor mother after one such trip refusing to let me sit on the sofa until I'd had a bath. But I doubt it will put her off Glastonbury. Probably the best you can hope for is a dry few years of it, and plenty of suncream.

My ultimate worry for such friends is for how they will respond and cope when they find themselves without the stamina for clubbing. For those who have always been able to take it for granted, I suspect it must be a lot tougher.

Bleugh mad! Your dd sounds like she needs a good scrub!

I have issues with friends too, in that they are all busy people and when I'm not making active contact they all seem to forget about me. It can be really depressing at times.

Don't worry, a bubble bath was ready for her as soon as she stepped through the door, followed by a shower. Then she got into her pj's and ate a roast dinner.

Splendid :) my mini good news is that dd is well enough for school tomorrow. Hooray!

Good news OYBBK. Dd1 has a horrid cold unsurprisingly so is off today.

I wonder how LGR's dt2 is doing? And Reeny, Rabbits, and the others on this thread?

Good news OYBBK for your DD well enough for school today :)
Hope your DD is feeling better soon Mad.

I had to take DD to nursery today as she wouldn't go with her dad, she just kept screaming and saying "me not want to go today, me stay and look after you mummy" When we finally got her into nursery and handed her to the teacher we could hear her crying from outside the building.
We waited for 30mins then the teacher came and said she had stopped crying but still clingy for the other teacher. :( I hate leaving her like that but if we keep her off she wouldn't go other days.

I'm still waiting for the Surgeon to call me.

How was your dd when you collected her from nursery? It is really tough on children when their mum's are unwell. They know and understand so much, even at a young age. Are you still waiting for the surgeon's call or do you have a date now?

I'm still waiting for the call or letter.

When DP picked DD up she ran to him and has been upset all evening but we think she was tired, she cheered up a bit when Tesco delivered the Birthday Cake :). DD is in bed now fast asleep so I think she was tired.

Is it your dd's birthday? You are not going to get her to nursery tomorrow if she needs to guard her birthday cake .

Hopefully you will not get the call to go in on her birthday, because that would be horrible.

My dd's fever has spiked to 40 tonight, so no school for her again tomorrow. She'll be missing double hockey, which will please her.