Louise Posted March 7, 2013 Share Posted March 7, 2013 (edited) We could all read terrible things doesnt mean its gonna happen.... As ever Lynne explained what I was thinking.... My heart does go out to you honey things shouldnt be like this for anyone..... Cyber hugs..xx Edited March 8, 2013 by Louise Link to comment Share on other sites More sharing options...
paul99 Posted March 7, 2013 Share Posted March 7, 2013 hi scarlet i know you are terrified as to what is going on but im worried for you by reading what you are writing im worried you may have a breakdown which wont help you , you have done what you can you have a confirmed diagnois and it now in the hands of the board to decide i hope its the result you wish, but like all nhs hospitals they seem to take their time but in all honesty there is a lot going on behind the scene before they get on with things and when they do things can move sharpish . no matter where you have the op to correct the problem everyone will do their upmost to make sure it goes well its unfortunant that you have spent money but you have to take one day at a time many people carry anursims around with no problem if you feel you want to take the dog out for a walk do so please dont put your life on hold try and enjoy life for now and as i have learnt sometimes ops get put back because of emergencys but you will get sorted if that the right word but when the dr see's you he will keep you fully informed and hold your hand through untill all is ok then you will want to know what all the fuss was about no matter when and where the surgery or coiling happens we will always be here to hold your hand and support you i did send you a couple of pm use the number and have a scream at me if it helps do what you wish to do at home because unless you try and relax and look after yourself who is going to look after your son im sorry to go on but im worried about you and your health consider your bottom smacked young lady take care hugs and cuddles ps no swinging from the chanderlers Link to comment Share on other sites More sharing options...
cathmat Posted March 7, 2013 Share Posted March 7, 2013 Hi Scarlett im Cath ive been reading your thread and can empathise , i had a sah nov 2011, i was treated at the heath in cardiff and there is no doubt they saved my life , it has left me with hydrocephalus and i have since been back in to the heath for placement of shunt feb of this year , the treatment i received was second to none iI think what im trying to say is it will be scary where ever you are treated i too was very scared but all the staff were amazing and treated myself and the other patients so well, (and im a nurse so i know good care when i see it ). I just wanted to share a positive experiance with you its not all bad , i wish you luck where ever you are treated take care lots of hugs Cath x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 7, 2013 Share Posted March 7, 2013 I hope you get a favourable decision on the funding today Scarlett - good luck!Sarah I rang about the funding this afternoon but they told me despite a decision being made, they could not tell me! I am still in limbo land x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 7, 2013 Share Posted March 7, 2013 I am not a doctor, but since they are not handling your case as urgent I don't see why not. I ran on my treadmill up until the day of my surgery. Exercise helps lower BP so in my case it was probably good. Pets are a very good stress reliever so that should help. The more you get back to your normal routine the better your mental outlook will be. Do you get to choose your surgeon or is it the next available? Here is hoping you get your approval tomorrow,fingers crossedHarry Thanks Harry,no I don't get to choose my surgeon or the Hospital if I don't get the funding. I still don't know if they have agreed as they wouldn't tell me when I rang today. I am seeing my GP in the morning and hopefully she may be able to find out but as it's the end of the week, maybe I wont know until Monday. A lot of the consultants secretary here, finish midday on a Friday and my appointment with my GP isn't until 10.40. Apparently the decision went to the neurologist I am no longer under so that makes a lot of sense! Just really frustrating. Tomorrow I'm going for a long stroll with my dog x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 7, 2013 Share Posted March 7, 2013 We could all read terrible things doesnt mean its gonna happen....As ever Lynne explained what I was thinking.... My heard does go out to you honey things shouldnt be like this for anyone..... Cyber hugs..xx Yes there are thousands of people being treated at the Heath and I must not dwell on bad things that I read about the Hospital and keep thinking what Lin -lin and Cath say about their treatment there x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 7, 2013 Share Posted March 7, 2013 hi scarlet i know you are terrified as to what is going on but im worried for you by reading what you are writing im worried you may have a breakdown which wont help you , you have done what you can you have a confirmed diagnois and it now in the hands of the board to decide i hope its the result you wish, but like all nhs hospitals they seem to take their time but in all honesty there is a lot going on behind the scene before they get on with things and when they do things can move sharpish . no matter where you have the op to correct the problem everyone will do their upmost to make sure it goes well its unfortunant that you have spent money but you have to take one day at a time many people carry anursims around with no problem if you feel you want to take the dog out for a walk do so please dont put your life on hold try and enjoy life for now and as i have learnt sometimes ops get put back because of emergencys but you will get sorted if that the right word but when the dr see's you he will keep you fully informed and hold your hand through untill all is ok then you will want to know what all the fuss was about no matter when and where the surgery or coiling happens we will always be here to hold your hand and support you i did send you a couple of pm use the number and have a scream at me if it helps do what you wish to do at home because unless you try and relax and look after yourself who is going to look after your son im sorry to go on but im worried about you and your health consider your bottom smacked young lady take care hugs and cuddles ps no swinging from the chanderlers Hi Paul, and thanks for your concern and for the pm's I only noticed them today!You are so kind. I have replied to you. I am so glad I have found this site because everyone here understands. I am listening to Lin-lin and Cath regarding the Heath Hospital.They both had good experiences there so if the board won't agree to my funding, I will not appeal, but go to the Heath for the surgery.I know I can't continue fighting my corner it's too stressful. I should be building myself up for the surgery that lies ahead and relaxing and not spending my days contacting MP's, Assembly members and MEP's. Then ringing around Hospitals searching for neurosurgeons. It's hard enough caring for my son 24/7 without the added pressure. I just want the angiogram and surgery now as fast as possible x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 7, 2013 Share Posted March 7, 2013 Hi Scarlett im Cath ive been reading your thread and can empathise , i had a sah nov 2011, i was treated at the heath in cardiff and there is no doubt they saved my life , it has left me with hydrocephalus and i have since been back in to the heath for placement of shunt feb of this year , the treatment i received was second to none iI think what im trying to say is it will be scary where ever you are treated i too was very scared but all the staff were amazing and treated myself and the other patients so well, (and im a nurse so i know good care when i see it ). I just wanted to share a positive experiance with you its not all bad , i wish you luck where ever you are treated take care lots of hugs Cath x Hi Cath,thank you for posting and telling me your experience of the Heath. I am taking both you and Lin-lins advice and going for my surgery there if I don't get the funding. It's made me feel much better knowing you both had your surgery there. Could you tell the name of the neurosurgeon who did your surgery please? Just incase Lin-lins surgeon won't be available,if I can recognise a name I will feel better. I haven't had time to think too much about the surgery. I have been so busy trying to get everything sent off to the NHS board for their meeting. I realise I'm wasting time and just want this surgery over with now, because It's terrifying knowing this aneurysm is there x Link to comment Share on other sites More sharing options...
paul99 Posted March 8, 2013 Share Posted March 8, 2013 hi scarlet both lin lin and cathmat talk sense much better than i can im just someone who has a partner who has suffered try and relax please wlk the dog BUT no swinging from the light fittings lol Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 8, 2013 Share Posted March 8, 2013 hi scarlet both lin lin and cathmat talk sense much better than i can im just someone who has a partner who has suffered try and relax please wlk the dog BUT no swinging from the light fittings lol Thanks Paul,the neurologist just rang me to tell the board has refused my request for surgery. He said I can appeal but advised me to be referred to Cardiff. I just rang Cardiff and spoke with a medical secretary there and inquired if Mr nannapaneni does private consultations ( he did Lin-lins surgery) He does them on Wednesdays at the Spire Hospital in Cardiff, so I'm hoping to get an appointment. She then told me about Mr Baig who does the vascular side of things. Will I need both surgeons? I asked about a brain angiogram and said that would be radiology.x Link to comment Share on other sites More sharing options...
Bluescat1 Posted March 8, 2013 Share Posted March 8, 2013 Sorry you didn't get the option you were hoping for, but everything will work out for you and pretty soon you will be helping other people get through what you are going through. They sure do things a little differently over there, as my neurosurgeon did the catheter placement on my angiogram. Keep us posted Harry Link to comment Share on other sites More sharing options...
Louise Posted March 8, 2013 Share Posted March 8, 2013 Things are moving forward for you hun great news if you know what I mean... Yes radiology, thats why its a radiogpher that normally does them... Yep soon you'll be putting people right on this you'll be a power of info. Hope you get an appt soonest.. take care, hugs Link to comment Share on other sites More sharing options...
paul99 Posted March 8, 2013 Share Posted March 8, 2013 hi sweetheart good news so far in all honesty it dosnt really matter who treats you the standard care given by neurosurgeons is way up there you may not need an angiogram if queens send all they had on you the surgeon may have enough information the neurologist isnt a surgeon they aere there to help people get over things such as a an sah or stroke and deals more with the rehab side the if your anni can be treated by coiling then your surgeon wont be far away the radiogrefer is the man who keeps track of the machine which follows your bit going inside so he makes sure it goes where its needed and not ending up in glasgow only the neurosurgeon will deside when the op takes placesorry for the quips but i think you need a giggle now and then dfingers crossed that you will get the help you need soon try not to go private just ask your gp to reffer you urgently to a neurosurgeon now the choice has been made you get seen just as quickly honest once he has seen all the info he may have enough to move on ps and NO jumping off the top of the wardrobe either and sorry for my spelling errors Link to comment Share on other sites More sharing options...
SarahLou Posted March 8, 2013 Share Posted March 8, 2013 Hello Scarlett, I've been following your story, most of the posts I've had to read a few times because I can't quite believe what I've been reading. Wow, you've had such a battle on your hands and its honestly shocked me to the core and bought me to tears. I hope now that this is a turning point for you and that things will now start to move forward for you. As for your husbands reactions... Errr... Now, I shall not comment because my Mama always taught me if I can't say anything nice then to not say anything at all!! I really do wish that you had a better support network around you, however, all our strength shall become your strength. I wish you well and send you big hugs. Take care and keep smiling, SarahLou Xx Link to comment Share on other sites More sharing options...
cathmat Posted March 11, 2013 Share Posted March 11, 2013 Hi Cath,thank you for posting and telling me your experience of the Heath. I am taking both you and Lin-lins advice and going for my surgery there if I don't get the funding. It's made me feel much better knowing you both had your surgery there. Could you tell the name of the neurosurgeon who did your surgery please? Just incase Lin-lins surgeon won't be available,if I can recognise a name I will feel better. I haven't had time to think too much about the surgery. I have been so busy trying to get everything sent off to the NHS board for their meeting.I realise I'm wasting time and just want this surgery over with now, because It's terrifying knowing this aneurysm is there x Hi Scarlett hope you are ok my surgeon is mr Goetz but i saw a lot of the registrar cant remember his name but he was excellant . keep us informed take care x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 12, 2013 Share Posted March 12, 2013 I went to A & E Saturday with awful head pains. They did another CT scan to check if my aneurysm was bleeding. They wanted to do a lumbar puncture but I refused. I was left on a trolley until late Sunday morning. They did eventually find me a bed,then a Doctor discharged me saying there was only a five per cent chance of a bleed in the next five years so to go home and not worry! I am very worried because I still don't feel at all well. I have no NHS appointment yet and no private Appointment for any angiogram. If I went to another A&E would they keep me there because I feel too unwell to be at home x Link to comment Share on other sites More sharing options...
Sandi K Posted March 12, 2013 Share Posted March 12, 2013 Hi Scarlett, I've been following your thread. Welcome to BTG. Sorry you are going through this horrible time. I hope you don't mind me asking - why did you refuse the lumbar puncture? I've never had one but I understand that it can show whether or not there has been a bleed. Sandi K. Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 12, 2013 Share Posted March 12, 2013 Hi Scarlett, I've been following your thread. Welcome to BTG. Sorry you are going through this horrible time. I hope you don't mind me asking - why did you refuse the lumbar puncture? I've never had one but I understand that it can show whether or not there has been a bleed. Sandi K. I didn't want that procedure. I was happy for them to go ahead with an angiogram but they sent me home. I still don't feel right and I'm getting frightening pains in my head x Link to comment Share on other sites More sharing options...
Lin-lin Posted March 12, 2013 Share Posted March 12, 2013 Sorry to hear you've been poorly and stressed. Were you too anxious to have a lumbar puncture? I wonder if you've had any before of would this have been your first time. I've had over ten lumbar punctures and I don't find them that bad to be honest. The fluid a doctor gets from a lumbar puncture can tell them a lot about the health of the brain. A sample taken from a lumbar puncture can indicate to doctors whether there has been a bleed or not. That said, if they have discharged you and after all, you've had a CT Scan; so there must be some confidence on their part. If you feel unwell, then telephoning your doctor may be helpful. You can talk through your concerns with him/ her. Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 12, 2013 Share Posted March 12, 2013 Sorry to hear you've been poorly and stressed. Were you too anxious to have a lumbar puncture? I wonder if you've had any before of would this have been your first time. I've had over ten lumbar punctures and I don't find them that bad to be honest. The fluid a doctor gets from a lumbar puncture can tell them a lot about the health of the brain. A sample taken from a lumbar puncture can indicate to doctors whether there has been a bleed or not. That said, if they have discharged you and after all, you've had a CT Scan; so there must be some confidence on their part. If you feel unwell, then telephoning your doctor may be helpful. You can talk through your concerns with him/ her. Yes, I was very worried about having a lumbar puncture. The pains in my head were really bad and to be honest I was just hoping they would do the angiogram but they sent me home!They were very busy. I did ring my GP this morning and again I was told that this aneurysm has been there for some time and I shouldn't worry too much about it. That doesn't reassure me at all. I just want a date for an angiogram and to have my aneurysm fixed. I think it's been about a month now since I had my diagnosis and even though I have tried to pay for my angiogram it hasn't happened due to the neuro surgeon being on holiday and them having to have a request form signed. I have been referred to Cardiff but when I rang, I was told they had not received my referral!. I just feel like I'm going around in circles and under no ones care x Link to comment Share on other sites More sharing options...
Super Mario Posted March 12, 2013 Share Posted March 12, 2013 (edited) Hi Scarlett, you are not going to like this but in my honest opinion you are being your own worst enemy. Yes I know that your scans were misread and you had another in London which showed up the aneurysms but you now have several agencies working against each other which could be delaying treatment. Plus, why turn down the lumbar puncture, the csf that is drawn off can show traces of blood if you have had a bleed that was undetectable on the scan. It does happen. And, the stress you are putting yourself under will be making you feel extremely ill and raising your blood pressure which is no good whatsoever for you. Please try and calm down and look at things logically. Many people have these aneurysms and they know nothing about them, they live life without them ever bursting. There are many things that can be in our body that we don't know about, the saying "ignorance is bliss" is very true. Yes I can understand why you are extremely worried, a natural reaction, but you need to try and tamp it down a little, do other things to try and take your mind off it somewhat. It has taken over your whole life, don't let it. Please do not take this as a slight against you, it isn't, it is just how I see it. I myself live under the threat of sudden death, do I let it worry me, no. I have accepted that it could happen at any time so I live life to the full and enjoy it. I often travel abroad on my own and think "what will be will be". Edited March 12, 2013 by penny Link to comment Share on other sites More sharing options...
Liz D Posted March 12, 2013 Share Posted March 12, 2013 Hi Scarlett I've been reading through this thread and can understand why your anxiety levels are quite high. My bleed was diagnosed by lumbar puncture and like Lin, I didn't find it that bad at all. I'd heard all sorts of horror stories over the years about this procedure but it really wasn't all that bad. They do give you a local anaesthetic so you don't feel any pain, the thought of it was far worse than the actual procedure. It's also over and done with much quicker than an angiogram. Does your GP realise how anxious and stressed you are? Can't he suggest any ways for you to reduce this? I only ask beause I work in Psyhcological Services and this is a website we pass on to clients. http://www.ntw.nhs.uk/pic/selfhelp There is a booklet on stress towards the bottom of the list. You can either download and print off the booklet or dowload it onto an MP3 player. There are relaxation excersises in it. There is also a booklet on Anxiety. I hope you don't mind me butting in but I just thought maybe this might help whilst you wait for your angiogram. Take care. Link to comment Share on other sites More sharing options...
Daffodil Posted March 12, 2013 Share Posted March 12, 2013 Hi Scarlett. Penny offers some good home truths there. You need to try and turn this situation around rather than have it rule you. You are lucky that they know about the aneurism and they will do something about it , i know it doesnt feel lucky but the facts speak for themselves; it is actually very rarely that they do they burst. There's others in the same boat as you on here who have had to wait for surgery and it's very hard on you. For those of us where those odds have happened and they burst without warning I think we would all trade places to be forewarned and able to approach surgery in a calm and considered way. You have been given a gift in a way. An angiogram in an emergency situation is NOT ideal, a radiographer will always try and avoid that plus there is no way that they would proceed to an angio from A&E without the confirmed presence of blood in the CSF. The only way they confirm the resence of blood is with a lumber puncture. If you suspect that the anni is bleeding then you need a lumber puncture. If its your only way of being certain then you say yes. I have had three LP now and like Lin Lin says they are totally manageable, an epidural was harder. I am not being callous here, I totally understand your worry , i have a anni that isnt coiled and that they monitor with angios and MRIs so i get it but you have to keep it together and focus on the postive outcome here. Link to comment Share on other sites More sharing options...
amexdm Posted March 12, 2013 Share Posted March 12, 2013 Hi Scarlett, Been reading this thread as well. I hope you get your angio soon. I have never had a lumbar but have heard good and bad things. They wanted to give me one on December but I refused because I was having brain zaps that I knew were due to anti-d withdrawal. They later confirnmed that. CT showed negative. I do know that a lumbar puncture can detect a bleed that a CT scan may miss. If the lumbar is clear you can be 99% sure that all is ok. You may want to do that for your own peace of mind. But certainly go on with the angio as well. But with what Penny said, please try and relax because getting all worked up can increase BP and is not good regardless of circumstance. I know it is hard but try and relax, be positive and have your doctor get you some pain or anxiety meds that reduce your current stress level. I hope it works out for the best. David Link to comment Share on other sites More sharing options...
Super Mario Posted March 12, 2013 Share Posted March 12, 2013 Scarlett, read the article that has not long been posted on the home page titled TIC TOC TIC TOC. It may give you some inspiration for positivity. Link to comment Share on other sites More sharing options...
Recommended Posts