goldfish.girl Posted March 24, 2013 Share Posted March 24, 2013 My neurosurgeon and his team were the ones that developed the glue procedure as well as new coils being used in Europe. I didn't realize how lucky I was to live 10 miles from a world class facility. http://www.capitalhealth.org/medical...ascular-center Sorry, I'm not sure how to post with a quote? Bluescat, that really interested me as I had 2 annies coiled during the emergency op & a 3rd coiled 3 months later as they were going to order coils from the US (I think they said that the 3rd annie was too small to coil with the coils they had available during the emergency op but that the US had smaller ones that would work). Scarlett, good luck on Tuesday. Fingers crossed you will also have the op that day & this worrying time time will finally be over for you. I had an angio 3 months after the emergency op & was kept on the ward with the catheter in my artery over night so that they could operate the following day. The only discomfort was having to lie flat until the surgery the following morning. Hope to see you back & posting that it's all over very soon Michelle x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 24, 2013 Share Posted March 24, 2013 My neurosurgeon and his team were the ones that developed the glue procedure as well as new coils being used in Europe. I didn't realize how lucky I was to live 10 miles from a world class facility. http://www.capitalhealth.org/medical...ascular-centerSorry, I'm not sure how to post with a quote? Bluescat, that really interested me as I had 2 annies coiled during the emergency op & a 3rd coiled 3 months later as they were going to order coils from the US (I think they said that the 3rd annie was too small to coil with the coils they had available during the emergency op but that the US had smaller ones that would work). Scarlett, good luck on Tuesday. Fingers crossed you will also have the op that day & this worrying time time will finally be over for you. I had an angio 3 months after the emergency op & was kept on the ward with the catheter in my artery over night so that they could operate the following day. The only discomfort was having to lie flat until the surgery the following morning. Hope to see you back & posting that it's all over very soon Michelle x Hi Michelle, I received an e-mail from my neurosurgeon. I have to get details of my heart problem because the anesthetist will require this before agreeing to giving me an anesthetic. I am on meds for angina but haven't had a heart angiogram yet. I have been told they may want this to go ahead first, before dealing with my aneurysm. I want to scream! I have asked if coiling is decided after having a brain angiogram, can it go ahead with me having sedation. x Link to comment Share on other sites More sharing options...
goldfish.girl Posted March 24, 2013 Share Posted March 24, 2013 That's really frustrating Scarlett but I know that all our medical details are on a database that any hospital can access - I'm not sure how this works if you are going privately for the angio, if it's in a hospital that also treats NHS patients it shouldn't be a huge effort for them to look up all your previous details? My mum also has angina (along with other medical issues) & her last hip replacement was done under sedation rather than a general aneasthetic but I don't know if this is an option for coiling or clipping of brain annies? I believe there are brain surgeries carried out under sedation as the patient needs to be awake but I really have no idea if it's possible for the surgery you may have. Perhaps some other members on here will have more info on this? Good luck! Michelle x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 24, 2013 Share Posted March 24, 2013 That's really frustrating Scarlett but I know that all our medical details are on a database that any hospital can access - I'm not sure how this works if you are going privately for the angio, if it's in a hospital that also treats NHS patients it shouldn't be a huge effort for them to look up all your previous details?My mum also has angina (along with other medical issues) & her last hip replacement was done under sedation rather than a general aneasthetic but I don't know if this is an option for coiling or clipping of brain annies? I believe there are brain surgeries carried out under sedation as the patient needs to be awake but I really have no idea if it's possible for the surgery you may have. Perhaps some other members on here will have more info on this? Good luck! Michelle x I can't explain how I am feeling Michelle. I'm just thinking of all those hours of traveling in the middle of the night on my own on a train, starving and thirsty then when I get there, I may be told I can only have the angiogram. I think it's pointless me going to such extreme lengths if that's the case. I am going to ask my Dr to fax over what they want in the morning. Although as they will be working in NHS Hospitals I don't know when they will receive them. x Link to comment Share on other sites More sharing options...
goldfish.girl Posted March 24, 2013 Share Posted March 24, 2013 Sorry Scarlett, I have a memory problems Why would you be travelling overnight, freezing & starving? From North of Scotland I can travel overnight on a heated sleeper train and be in London the next morning (7am)! I forget where you are? Personally, having gone through a bleed, I would absolutely be having the angio, very possibly followed straight after by the surgery while you have the option to do so, hungry or not with a large annie. I really wouldn't be putting it off or taking any chances when the immediate option was right in front of me, especially as you have been so very ill with stress at the thought of it all?? Obviously, we are all very different but perhaps it's time to stop fretting, decide what's most important to you, especially with a son with disabilities who needs your help 24/7 and do what is recommended on Tuesday after the angiogram? Keeping in mind that surgery without a bleed beforehand will be so much easier than the alternative, especially as you have caring duties without any support. Michelle Link to comment Share on other sites More sharing options...
MaryB Posted March 24, 2013 Share Posted March 24, 2013 Scarlet, Let the Doctors do their job honey and they will not let you leave if you need to have it fixed. You have to just trust in their care. Sometimes we just have to let them do their jobs as they see fit & their are so many variables that CANNOT be controlled in medicine and life. Michelle is right get it done now b4 it burst. Good luck, maryb Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 24, 2013 Share Posted March 24, 2013 Sorry Scarlett, I have a memory problems Why would you be travelling overnight, freezing & starving? From North of Scotland I can travel overnight on a heated sleeper train and be in London the next morning (7am)! I forget where you are?Personally, having gone through a bleed, I would absolutely be having the angio, very possibly followed straight after by the surgery while you have the option to do so, hungry or not with a large annie. I really wouldn't be putting it off or taking any chances when the immediate option was right in front of me, especially as you have been so very ill with stress at the thought of it all?? Obviously, we are all very different but perhaps it's time to stop fretting, decide what's most important to you, especially with a son with disabilities who needs your help 24/7 and do what is recommended on Tuesday after the angiogram? Keeping in mind that surgery without a bleed beforehand will be so much easier than the alternative, especially as you have caring duties without any support. Michelle Please read my post again as you have misread it. I really want the surgery thats why I am paying for it privately to avoid waiting. However they are undecided if they will give me an anesthetic because of my heart problems. I didn't say it would be freezing only that I have to travel through the night and then may be told my surgery can't go ahead. I would rather know this beforehand and have a date when it can go ahead. Link to comment Share on other sites More sharing options...
goldfish.girl Posted March 24, 2013 Share Posted March 24, 2013 Sorry Scarlet, I read again and you didn't say 'freezing' but 'starving and thirsty'......the rest of my post still applies. Hope all goes well on Tuesday Link to comment Share on other sites More sharing options...
Bluescat1 Posted March 25, 2013 Share Posted March 25, 2013 Hope all goes well and you get the best possible prognosis. Harry:-D Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 27, 2013 Share Posted March 27, 2013 Hope all goes well and you get the best possible prognosis.Harry:-D Hi Harry,it was cancelled yesterday. The consultant is now on holiday for two weeks following Easter so I am booked in on his return. x Link to comment Share on other sites More sharing options...
Bluescat1 Posted March 27, 2013 Share Posted March 27, 2013 Hi Harry,it was cancelled yesterday. The consultant is now on holiday for two weeks following Easter so I am booked in on his return. x Don't they ring you up and let you know? Just don't get yourself all worked up again, I probably had my aneurysm for years, and I have hypertension. just keep telling yourself you are going to get it fixed and that the alternative is not an option. you and I are among the lucky ones as our aneurysms were found before they ruptured. You will be fine. Harry Link to comment Share on other sites More sharing options...
Guest Scarlett Posted March 28, 2013 Share Posted March 28, 2013 Don't they ring you up and let you know? Just don't get yourself all worked up again, I probably had my aneurysm for years, and I have hypertension. just keep telling yourself you are going to get it fixed and that the alternative is not an option. you and I are among the lucky ones as our aneurysms were found before they ruptured. You will be fine.Harry Thanks Harry,I had rang Spire in Cardiff and asked what neurosurgeons worked there. They said Mr Nanapenini worked there and he had a cancellation today. Lin-lin spoke highly of him so I went along and he was lovely.He is arranging a CT angiogram for me and I have decided to have my surgery at Cardiff after meeting him. It will mean less travelling too. I feel much better now Harry x Link to comment Share on other sites More sharing options...
kempse Posted March 28, 2013 Share Posted March 28, 2013 So pleased to read your latest post Scarlett - wishing you all the best, Sarah Link to comment Share on other sites More sharing options...
Daffodil Posted March 28, 2013 Share Posted March 28, 2013 Me too. So pleased you won't have all that travel and hopefully you will get peace of mind soon. Best regards. Link to comment Share on other sites More sharing options...
Winb143 Posted March 28, 2013 Share Posted March 28, 2013 Me 3 also Good Luck Scarlett xx Link to comment Share on other sites More sharing options...
Guest Scarlett Posted April 1, 2013 Share Posted April 1, 2013 The consultant I saw last week in Cardiff took all my heart info to show to the anesthetist. Just been wondering tonight if it is possible to have a heart and brain angiogram at the same time? There seems to be some concern now about putting me under anesthetic because of my heart. The consultant said I am not an urgent case and that it's larger aneurysms that burst but mine is 8m! I suppose this means a long wait on the NHS as I am not even on the list yet. I think I would rather pay for the surgery to get it over with. I have these awful pains coming and going in my head just above my ear.They come on all of a sudden and go away slowly. I suppose this could be a ear infection maybe. x Link to comment Share on other sites More sharing options...
Guest Scarlett Posted April 2, 2013 Share Posted April 2, 2013 Sorry Scarlet, I read again and you didn't say 'freezing' but 'starving and thirsty'......the rest of my post still applies. Hope all goes well on Tuesday I think you misunderstood my post. I want the surgery before a bleed happens and have been trying for two months to get this all arranged. This IS very important to me. London have given me the runaround big time. I was diagnosed in early Feb. They said I needed a brain agiogram. I tried unsuccessfully for about a month to get this booked, constantly phoning London and being fobbed off that the surgeon was on holiday. When she returned her sec rang and said because I was self funding ( which she knew from day 1) she had decided not to treat me but pass me over to another surgeon. This meant back up to London for another consultation! This was the third trip. This other surgeon had concerns about my heart. She rang me to say it go could ahead the following week but I needed all my heart info. I faxed them through but had no response. I didn't want to travel all that way just for the angiogram and wanted the surgery on the same admission which had been agreed but then there was uncertainty re my heart and having an anesthetic. Here, there are no heaters on our trains you freeze and yes that's first class. London didn't bother letting me know what the anesthetist had decided. Anyway everything got cancelled for another reason.I had already arrived in London by then ( 4th trip) having traveled upon the 4.30am train! Meanwhile, I had already been referred on the NHS but was not on the waiting list. Today, I got a call to say they had received the referral from months back! I paid to see Lin-Lins consultant last weds,he works at the same NHS Hospital as I have been referred to and he said he would arrange an angiogram. I wanted it privately to speed things up. Because of the two days off over Easter this will now be delayed. I have tried for almost two months to pay for an angiogram. I even had a private referral to Liverpool to see if it could have been arranged quicker than London. The consultant sec there, told me he is was on leave until the end of April and as he does little private work I would be then waiting around eleven weeks for a private consultation Unfortunately the NHS have been slow and London no better so please don't think any different. I have spent the last two months trying to arrange things privately which has been very stressful indeed and still I have no date for my angiogram and therefore do not know what surgery is possible. This has cost me several thousands of pounds. I am fully aware of the help my son requires and have done everything possible to privately arrange my care. Link to comment Share on other sites More sharing options...
Karen Posted April 2, 2013 Share Posted April 2, 2013 Sorry, but this is a support group and none of us on here are qualified medics who can give you advice as to medical procedures. As far as I'm concerned, members have responded very politely and reasonably to this thread and have given you their time and personal advice by replying to you. However, I do not like having to referee/moderate a thread that looks as though it's about to turn confrontational, as that's not what this site is about. If medical/procedural advice still needs to be sought then please contact the Neuroscience Nurses at the Brain and Spine Foundation and they will be able to help with any questions that you may have. They can be contacted by phone or via email. http://www.brainandspine.org.uk/ Therefore, this thread is now closed and thank you to all that have participated. Link to comment Share on other sites More sharing options...
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