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auders 
Well did I get a fright last night,We were sitting having a glass of wine hoping that Laura`s problem`s were over as a whole new shunt system had been put in place from top to bottom,and she was looking well after surgery and the next day until around eight in the evening.The phone went and it was her dad`s partner to say that while her dad was visiting(we are divorced)she took what appeared to be a fit and was in a lot of pain and was asking for me.I got a taxi straight up and found her crying,although the pain had eased off a lot she was still in pain.They took her for a cat scan and said it looked better than before surgery which suggested her shunt is working for now.So why the pain then?why the sickness?it was not a fit they said as a neuro nurse was present and said it was thrashing around with pain,but she could not respond to anyone and ,could hear what they were saying sounds like a fit to me.She said she could not stop her arms n legs from thrashing around,that aslo sounds like a fit.I am losing all confidence in her neuro ,and the hospital it has went downhill in the twenty years Laura has been attending.Hospital care in this country might be free but the standard is by no means good,I have twenty three years experience of it,both for Laura and myself.I would go private health care,but in this country you would still see the same doctors and nurses,the only difference would be a private room with a telephone and t.v,better food and they would treat you with more respect because they can see the colour of your money.People say the American health system is unfair,but in Britain it is just as bad,I would prefer to work and pay insurance to recieve the standard of health care they seem to have in America compared to over here.
She is feeling a lot better today,the pain is still there,but they had to cut into muscle in her neck to reach the y connector that was fractured that goes in to the dandy walker cyst at her brain stem,so I am hoiping that it is just post op pain.The sickness is worrying me though,they moved her tummy shunt position back near to a position where sixteen years ago it stopped absorbing the csf fluid as the peritoneam had hardened,and feel like this might happen again,they say they wanted to put it in a completely fresh part of her tummy,so I have to accept that,but my gut is teling me that eventualy it will have to be replaced by a va shunt.I hope I am wrong.
Well I have now got everything off of my chest,hope my Laura just keeps getting better and better as this has been the worst month of my life up till now,but I will not get my hopes up too high as it has been two step`s forward and ten step`s back for a month why should it be any different this time.My prayers are very long and very often and very repetitive.
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Today Laura went down to theatre and was there for four hours,it was discovered that her shunt was fractured both at the top at the connector to the dandy walker cyst,and the tummy tube was not working properly either.It has taken four weeks in hospital,four scans and two ICP monitors to find these problem`s also weeks of intense pressure on her brain and screaming in agony.
When in the hospital after sugery I could not understand why laura`s tummy scar was in the position of her old scar(they moved it when she was seven because it was not absorbing into the peritoneam)at the front of her tummy when her current tubing is placed at the side.I now think the neurosurgeon who is new has positioned her shunt tubing in the wrong place.he told us he opened a new scar as the old one was thickened and hard(her old one is her current one is not)I now have to wait until tomorow or monday to find out if this doctor has placed my Laura`s bottom shunt in the wrong place and she has to go through yet another operation through no fault of her ownI am not telling her this,she has been through enough and I need to see if I am right,but he said he opened up the site of her shunt and had a feel about,her current shunt site remains untouched onlty the old one has been touched.I really do not know where i stand can I sue,will I have a case,can I afford it.I AM NOT BELEIVING THIS.!
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Hugs to all of you! Let me just start with them because you need it. I can't believe it either. Something has got to give, someone needs to realize that whatever they're doing isn't working. As for what to do next. I'd sue if I were you. The first surgery that she had when everything started was uncalled for because nothing was found. Now its just trial and error. They're trying to fix things but, it's really not working. Once she's out of the hospital, get another neurosurgeon and have them look at Laura's medical history, more importantly the surgeries within the past few months. I don't think that anyone with half a brain, would say this is correct or ethical to subject a person to this many sugeries in such a short period of time. Once that's done, find yourself a good lawyer who deals with medical issues and sue the pants off this doctor. I don't know what the laws are like in Scottland but, no where in the world is this acceptable. I also wish that I could give you the name and number of someone that I know who deals with issues like this, my former neurosurgeon become a lawyer for cases like Laura's. Name and number will be costly but, e-mail is free so I will pass it along to you privately, if you'd like. Just hang in there, Laura is a fighter and she'll overcome this. But, just because she can it doesn't mean she should have had to.
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Audrey, I'm so sorry for all that you and Laura are going through! Yes, I do agree with Felicia. The neurosurgeon needs to be sued. I don't really know what else to say, I know that none of my neurosurgeons in their right minds would place an ICP monitor for any reason. Before I met Laura, I'd never even heard of an ICP monitor. I really hope everything turns out okay. I hate to see my big sissy going through all this! She's such a dear friend to me! Just know in your heart of hearts that your daughter is strong, a fighter, and WILL make it through this rough spot! You, Laura, and your family are in my prayers! Keep us posted on what's going on and hopefully Laura and I can talk soon. Oh and please send me your full address so I can send something to Laura. Love and Hugs to you and Laura!
I am so frustrated,Laura has been in variying degrees of pain for five days now,but mostly bad enough for her to scream out with it.The pain killers are not working very well at best they just take the edge off.The second scan showed no pressure on the brain or build up of cs fluid,so why is she in such a terrible state?The doctor`s have not got a clue,they are even trying Imigran,I think as a last resort.She is getting an ICP(inter cranial pressure monitor)put in on thursday,but my experience of these is that they have never picked up on anything before so why should now be any different.The pain is shooting behind both eyes and she has a sensitivity to light,the nasea has turned to vomiting and I am just about desperate with worry now.I keep thinking that they are missing some new thing that is wrong,but what I do not know.Her step father is just as distressed although he is being very brave for both of us making silly jokes and stuff as usuall.
I just kep asking myself why Laura? she is a good girl,she does not deserve this no one does,I know there are people worse off than us and I try and think that way,but it does not alway`s help.I wish that I could swap places with her I would in a heart beat.
Maybe tomorow the pain will stop.
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Mrs. Clark, I'm Felicia, a friend of Laura's here on DS as well as yahoo. She and I would every night on yahoo and I miss her dearly. She's such a sweet person, a good friend and I'm glad to have met her. Please let her know that I'm pulling for her.
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Hello Felicia I feel like I know you already Laura has told me so much about you.She got an ICP yesterday and It showed pressure so she went to theatre today and her valve was blocked,when she came back her pain was gone,so fingers crossed that is the problem gone,I just do not know why it took all this time in agony before they did something about it,the monitor could have gone in days ago and saved her days of suffering,anyway for now she has some pain free time,I just hope that is the end of it.I just do not understand why the pressure did not show on the scans as it always has before.She has been so brave .not a word of complaint except to say that she did not want euan to see her with the ICP in,she is amazing,I wish I had half of her strength of character.Thanks for your concern Felicia I will let her Know you were asking for her.Audrey.X
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I'm so glad she's feeling better. I know what it's like for the ICP to increase without a clear reason as to why. It happen to me in 05, bone grew around my valve and it wasn't seen on CAT scan. So I was taken to surgery and sure enough there was a blockage. But, yes it does amaze me how both Laura and our friend Darla can both have shunt issues and CAT scans appear to be normal. Until there are major changes in the ventricles. Laura's a tough person, I knew that she wasn't feeling well before she went to the hospital the first time. This condition is hard to deal with, sometimes. We never if or went something is going to happen. Just send her my love as always and just to let you know, DS creates bonds like no other. Laura, Darla and I are all like sisters. We all have each other's backs.
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She took another turn for the worse the day after her shunt revision screaming in agony again all morning and vomiting,they did a scan and said it was the BEST scan laura had ever had I thought I was hearing things or someone was playing some sort of sick joke on me,then she went for an ex-ray to check for any mechanical problems and her bed would not fit through the doors so she had to sit up on a chair and she felt something "pop" in her neck then started to feel better,don`t know if it was another blockage or a pocket of air or something and that was it moving , but then she was doing well again although still sore and had a headache but nothing like before,we all breathed yet another sigh of relief then she had a quite good morning and afternoon yesterday,when once again pain and sickness returned,their explanation is that Laura`s shunt has Never worked as well and her scan has never looked so good so she is adjusting to the large amounts of fluid that are now draining away that were not before ,apparently the the symptom`s of over draining are as bad as under and we have never came across this before,I just feel that the problem she came in with is still underlying and cannot shake that feeling,but this is all new to me usually Laura presents with shunt malfunction they do a scan see the problem fix it and she is home in less than a week.This has been the worst 12 day`s of my life and just wan`t her home with me now.She had a brilliant day today,the best yet.Hardly any pain,ate loads,came out in a chair for ages and my dad also took her out,do not want to speak too soon though as it is usually at this time she starts to get worse.Well sorry for going on for so long but it just started to flow when I began to write,thanks for caring so much for Laura she is so lucky to have you as her friend.Audrey.X Thanks for Listening Felicia.
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Anytime, are you kidding me? I love hearing about her from you. I also know what it's like to over drain. I had incidents with both under draining, due to a blockage and over draining due to a failed valve in 2005. It all happened with about three days. I was luckilly still hospitalized when we found out that I was over draining because I didn't really feel sick. So six hours after they told me I needed to go into surgery, I was taken it and had my valve replaced. They made me wait because I had eatten. But, I didn't really start feeling sick until the last hour or so before they took me in. a I had a headache, I was sleeping and my temp, started to climb. After a few hours in surgery I had a programmable valve and my ventricles had started to fill normally again. A CAT scan and neuro exam were done as I waking up from surgery and I was given the results right away. My poor doctor, it was a Saturday night into Sunday morning also. But, everything turned out well. I just can't wait to chat with her again. It's been a while and I do miss her.
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Laura had another bad night kept wakening up in pain then really had pain at nine o`clock this morning which lasted till around two in the afternoon no meds worked also she was sick.Then I took her for a shower and she vomited in the sink and immediately felt better like the old Laura Until she had a sandwich and some juice and the headache and nausea started again.I have seen all of this b4 back when she was about seven she presented with all the symptoms of malfunction they saw nothing on scan but she was so bad they changed it any way then there was no change so they transfered her to the hospital she is in now from the children`s one as the ns there did not specialize in Laura`s back shunt and he thought it might be that,however there they thought that they would check the peritoneal shunt and found a huge balloon of fluid that had probably been there for a very long time(she has been feeling ill for a long time)and the peritoneum had hardened and stopped letting all the fluid through so they moved it to the other side of it and extended the length as it would have needed done in a few years anyway.They also told me that there was a good chance that this would happen again in the future as it usually does this more than once and they then need to re route it somewhere else(maybe pleural or whatever)I asked why they did not see this on scans and they said that as the fluid was so huge they could not see the outline of it,and they could not see a build up at the top because it was going down but the "balloon" was just getting bigger instead of absorbing into her stomach.I have told her ns this numerous times since 2005 and she just keeps brushing me off as if what do you know i`m the expert here,I told five of them this whole story the other day and all I got was we have taken what you have told us on board,I would swear this is what is happening if she does not pick up soon,it is now four days since surgery and she has not had one full 24 hr day without pain or nausea.I just feel that Laura has never before had to adjust to new pressure in her dead after valve replacement so why now after 23 years and as her mother my instincts are telling me it is her tummy again.I HOPE I AM WRONG I REALLY DO.speak soonAudreyX
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Poor kid, it's one thing after another, this is so unlike her. I know she's waited before being seen but, this should have come up sooner. She's such a fighter. This is just one of those times when she's going to have a crises and then be fine for several years. It does happen, I've had it happen, Darla has had it. I don't know why this happens but, it's part of the reality of the condition. She's always in my prayers, as are you and your husband and Euan. I put in a word for everyone. Just hang in there and if you ever feel like venting or anything I'm here for you. I've had Laura's back for about a year or so now and you're part of her. So hugs and love all around.
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Thanks honey you are a wee doll you are in my prayers also and there are many at the moment.She had a good night last night slept right through without meds and also slept a few hours this afternoon think she is catching up on her sleep as she has hardly had a wink in two weeks.Still has some pain now and then and her left eye is sore sometimes but she has had two operations and that monitor in,they also opened up the opposite side to put it in and changed their mind so has a couple of stitches there too.She has been through the wars.Have you ever had a revision or anything and still had headaches for a few days afterwards?Laura usually just comes straight back to normal we are not used to pain afterwards at all.Thanks again Felicia hope you are well.Speak soon.Audrey.Xp.s.please call me Audrey and not Mrs Clark as that will make me feel old LOL.
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Ok Audrey! I've had eight revisions and as I've gotten older, it's been harder to recover. I had my last set in 2005, two revisons within about three days and was also diagnosed with Lyme's Disease. So after the first surgery I was okay for a day or two I didn't feel too bad and on the third day I had a headache but it was mild, and my CAT scans showed that my ventricles weren't show up. So 6 hours later back to the OR, what fun on a Saturday night? But after that, yes I did get headaches and some were bad. So I guess it's normal because we need to adjust to the pressure differences and everything. Although the last time I had a migrain, in March I had every symptom of a malfunction. I went to the ER and my CAT scan was normal. I felt horrible and was given fluids, pain meds, and something for nausea. But, they sent me home because there was no reason to admit me.So me headaches are a normal part of life and I remember waking up for surgeries with headaches but, I knew it was normal headache for me. There wasn't anything wrong. I just think that it takes us longer to recover as we get older. I was 18 with my last ones and even the minor things, colds and flues take longer for me get over. I say older but I'm only 22 and I've had the least amount of surgeries out of our group. Laura and Darla together have probably had four or five times the number that I have and we're all young. At the same time, it's just the nature of the condition. Love and hugs to all!
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Thanks for taking your time to tell me your story Felicia it really has made me feel better as Laura has had a lot of revisions but most of them occurred when she was younger the last one being when she was seventeen(although she has had hospital admissions that have found nothing wrong like yourself)since then,however as I said before she usually springs back to the normal Laura(as normal as any hydro person can be with headaches n all)but as you say she is older now and things change as your body changes.You have done brilliantly with graduating and everything your parents must be so proud of you as I am of Laura,hydrochephalic people have a special aura about them Felicia, I cannot put my finger on it,but everyone who Laura meets she touches their lives in a special way,and she cares about people in a way I have never known any one else to, and in the short time I have spoken to you it seems you have the same qualities.Luv and Hugs.Audrey.XX P.S. Laura seems a bit Better now just has an impacted bowel and needs to get an enema as doc says this can put pressure on bottom part of shunt. Speak soon.
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She'll be ok, an ema is nothing compared to what's on with her shunts. Laura's a very caring person and I can tell just within our nightly conversations that she's not putting up a front. What you see with her is what you get. Most of the time I can just tell by looking into her eyes on webcam, that something is wrong. I guess it's just a sixth sense that us hydrocephalics have. At the same time, those of us who are high functioning like Laura, Darla and I can, go on to live fullfilled lives. Darla wants to become a nurse, and I work with children autism and other learning disabilies, and am looking for a full-time position. So maybe there is something good that has come of us having hydrocephalus, because we don't know who we'd be without it, and maybe we wouldn't be such caring people, who amaze those who don't even really know us. Love and hugs. Oh and I do have a calling card that I'd like to use so just tell me when and maybe I can surprize Laura with a phone call when she comes home, or as soon as she feel up to talking for two hours.
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I will let you know as soon as she is on her way home,she would really love a phone call from you that would really cheer her up.She is quite down at the moment Felicia I have never seen her take it as bad as this before,but then she has never had an episode as bad as this before.She cried for half an hour after we left the other night,but like I say to her It is better out than in.She felt better for it and time is going a bit faster as they gave her a t.v.So she is catching up on all her favorite pro grammes. She still cannot read as it gives her a sore eye and a bit of a headache but that is to be expected,but she loves reading so it is quite hard for her.When she gets home she will come on leaps and bounds I know her,in a few weeks it will be a distant memory to her all being well.Luv and hugs.Speak soon.Audrey.XXX
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Audrey, what is going on with Laura? Euan gave me a update and I don't like it. She was doing fine and on her way home. Now another ICP monitor? Send her my love and tell that she needs to hurry up and come home because Darla and I have a lot to talk about. I'm telling you, even though I chat with two or three people a night, it's not the same without her.
Past Entries
| June 2009 |
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Sunday, 6/28
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Wow. This all just needs to stop! I can't believe the lack of proper health care over in that country! I wish Laura and you could come here and I'd take Laura to my doctors. And just so you know, there are MANY LESS DANGEROUS places to place a shunt system to drain OTHER than a VA shunt. I've had 2 VPL (ventriculopleural) shunts before. That's where the shunt system drains into one of the pleural spaces and the excess csf is absorbed there. I now have 2 VP (ventriculoperitoneal) shunts again because the 2 VPL shunts got infected in my pleural space. There are also shunts that drain into the corotid artery, and gal bladder. I strongly suggest that you talk to her neurosurgeon and ask that a VPL shunt be placed because they're honestly the safest option. The pleural spaces (the areas which surrounds your lungs) are negative pressure areas. That means that nothing that the body does, like getting constipation, can interfere with the shunt's functioning. Please keep me posted on how Laura's doing! And I don't care how grim things may seem., don't keep your hopes low! You can't lose hope!
Love Always
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Laura's lil sissy
Darla
xXforeverOaOchildXx