I saw my neurosurgeon about a week ago and I really did not like him. He is refusing to do an angio, and says I should not worry about it and try to live my life. He says there are too many risks considering my age and health. That I should get on with my life. All he is ordering is another MRI with NO CONTRAST to look on the specific place it is located and the nerves surrounding it. He said that maybe the next time it won’t be there! WTF?!?!? Really, the reason is the crackdowns on putting non-UK Citizens as a priority for care under the NHS in the UK. Bottom line, it’s about money! I didn’t chose to live here, this is where my Brit hubby has a job! So, I have a choice. Change hospitals (I’m currently at the best neurology/neurosurgery hospital in the UK), or leave my husband & kids and fly home (US)for treatment. This is not ideal and requires me to see a primary doc first and get a referral, new MRA/MRI, and then referral to neurosurgeon, let alone the issue of where to live! Ugh! So, frustrated right now!
Littlebits33, Did he or she spell out the risks as it relates to your other health issues? Maybe discussing those frankly would help.
While I can understand your frustration with your Neurologist, I was elated when my Neurosurgeon said no more angiograms! Perhaps the difference is rupture vs non-rupture. There is a big risk when we have angiograms. Not to mention the prepping for some folks allergic to contrast, every six months. Then there’s the stress, the hope, the fear of everything coming out fine. I think I had over half a dozen. The last time I had one she was running late due to an emergency. I don’t mind as I was an emergency one morning as well. I’d like to personally thank anyone she was supposed to see that day even if they became frustrated. My Neurosurgeon would rather do the other methods if it’s feasible. My aneurysms have not changed since she fixed them. The one that ruptured has an open neck still. But for me, no more surgeries is a better alternative than a crainiotomy or even a stent. And the way I react to contrast, well let’s just say I’d probably kiss her if she left the contrast out lol. Last time I met with her, I was told no more angiograms. I don’t center my life around my blow out, I couldn’t live that way. For me, life is not about existing, it’s about living the life I have. So teach your family the warning signs of a rupture, make sure you learn them. (I was a Girl Scout, so always be prepared) and enjoy whatever time you have. Back in the 1960’s and 70’s my teachers were all about making our lives have meaning.
Is there a good Neuro Therapist around you? Seems like it may not hurt to talk to someone who is trained and knowledgeable about aneurysms.
im with you Moltraub- i was elated too when i talked them out of angio!! Why do you want an angio? its too risky to do unless its necessary imo. I get mras now, take care
The reason is that there is disagreement within the multi-disciplinary team of where exactly the aneurysm is located, and how big it is!! I have heard an angio gives the clearest picture. I want a clear picture before a decision is made. I have had TWO MRA’s. One done without contrast that didn’t show the aneurysm, and one done with contrast that it showed up on.
ahh i see, so sorry you are having to go thru this! Sometimes they like mra better but i forget why. Can you get a second opinion? tc , prayers for you and the drs, tc
Hmm, but didn’t you say your other health issues make an angiogram more risky? As patients we want to know now what’s going on and what can be done about it. I think doctors have to step back and look at the whole picture. For some of us that choice was mute as we had ruptured. I had never heard of brain aneurysms or SAH until I had one. We often discuss “what if…” Like what if we had found out about my aneurysm before it ruptured, would I have changed anything - the answer is always “nope” for me. My partner thinks things would have changed but can’t quantify those changes. I would still work an extremely stressful job, I would still garden, read, woodworking, enjoy friends and family, all those things I enjoy doing. Rupturing has just been a revision of how I do things to work better for me. All my garden beds are being raised, all the woodworking benches have to come up a bit so I’m not bending so much, bought an outdoor fan so I can more tolerate the heat, those kinds of things that I wouldn’t have considered three years ago. I know I am still the same person and I would have looked at the positive side that most aneurysms don’t rupture, I would have just gone on with life and been frustrated with the doctor visits. LOL
Littlebits33...
Please accept this as my little bits... on procedures...
First...so important...the arteriography is considered the 'gold standard'... what is not provided to patients/advocates (easier term than listing all) are the levels of radiation and the contrast dye.
You may want to search online: contrast media, contrast dye, and every other term...
IF/when you research it...there are basic levels of rad...easy to read...except, again for the volume...when you read a number...there is no readily available means of understanding if that rad # is for one image, or for 120 images in one 'series' in angio...or if all 9 series in an angio.. .or all 4 angios 'usual' in diagnostics...Since they know (presumably?) where the aneurysm is...they may only do one...
There is also more than one type of angiograms here: a 'conventional' angio and/or whatever the non-conventional may be...the only term I am familial with is 'DSA' (digital subtraction) and for which there are no readily available data on whether it is the one w/higher grades of radiation...Unless it has become available online since I began asking about radiation levels the end of 2011 on...
The contrast dye (media, agents, material) have a high % of iodine in it...
MRI data... to MRA...w/enhanced imaging.. is called gadolinium.. It is not iodine, but cannot give another term..
If searching - apx 2005 questions on gadolinium reactions; apx 2008-09...a major lawsuit...settled... and by mid-2015 as I interpreted the data...FDA has agreed to review/study more...
The benefit of MRI...is no need for radiation... and, I could never get an answer on how the pictures are taken...by the magnets or some electrical/radiation connection?
Since I do not know, have any idea, about your aneurysm location/size/shape and/or your age and health...I hope what I have noted can/may help you research more, and get more answers from other members.. and, help you prepare more questions to ask your doc there...(type/mail if you can't get an appointment?)...or help you discuss w/your hub and your potential return here to see a doc...even, down to generating more of your questions to this site...and, again, possibly generate more responses.
Prayers for your informed decision... and, to keep us u[dated...
patioplans,
Thanks for your response. My aneurysm is 5mm and is located on the right internal carotid artery, most likely a cave aneurysm, proximal to my ophthalmic artery. I am 33 years old. There is some disagreement on where the location is exactly and the size. He also said to me that, “who knows, maybe after the next scan it won’t even be there.” ?!?!? He sat there and tried to tell me there was a 0% chance of rupture! I have a pre-existing condition and he feels surgery is too risky. I feel stuck. I do have medical insurance in the states, but I’m scared to fly at this point, and we have two kids.
Littlebits...
So many of us have had to make such decisions... including what we share, may share, here/elsewhere... I have stated numerous times I have..Just my experiences...med records and continued research...
Did you ask him for his opinion on the aneurysm not being there later?
Because.. the only one that has ever been shared w/me...are long-term friends. While I was in the hospital, their daughter was ERd to another hospital nearby...aneurysm diagnosed...scheduled for service the next day...and, it was 'gone'...lots of talk about reducing exercise...Well, it has been almost 12 years..and, she has not had a recurrence...nor has taken another check-up...her choice...I have suggested a basic CT or MRI...not an angio...
Conversely...I had 3 ER's over 29 days...and numerous...purported care...between the first 2 er's... I needed more care after... admittance - angio procedure... stopped abruptly and under coronary care... the only record of an MRI was billing data...along w/all the other angios...
The reason I share is that we have adequate to excellent...to far less than adequate...
We have one who had open surgery...w/f-u of coil to fill in something...we've had some who survived magnificently; we have some (who never had rupture/leaks) who had top-notch sensitive PCPs who referred a patient timely for headaches/migraines...
Of some minor (or major?) info for world wide status (WHO - World Health Organization)..the May 2014 data can be reached at: http://thepatientfactor.com/canadian-health-care-information/world
There was some other rating also (have not tracked) that the US was rated as 10 in their world level of countries...
I will share more later on size...it is something that bothers me...in how it is used...and, how /who decided what was/has been/still is appropriate in decisions...
I sampled my website typing..and, it went directly to the Patient Factor...and I do not know how frequently that is updated...
Littlebits....my thought on the size of an aneurysm... I will still leave to later...
RE: your insurance company here...Have you, will you contact them ahead of time for their "yes" before you come over here...and, they say 'no' because ...
We have had members who have had delays due to insurance agreement of payment...and, there are variations in diff policies...
Additionally, based on what you noted your doc said "next time it may not be there"... you may want to secure your written record and CD/DVD of your MRI...if you have not already requested them....
Some time (6-12 months...my memory?) one of our members had sought help from the Barrow Institute...and. he was able to send in his data for their 'opinion' ...for a small amount ($100-200?) I will try to remember his name...to pull up his record here...perhaps another member will remember/provide far quicker than I will... or perhaps it comes up on the Barrow website.... But, if any of this will help you with your decision(s)...I will be great...
I personally knew one who had marvelous procedure there...and, had been air-evac'd in etc..
and, have know others as members...not on a personal level...
Unrelated to an aneurysm, some friends were on a cruise in Asia, she had some health issues and into a hospital when home, she told me IF ever she needs more hospitalization, she hopes she has time to fly back there...
We also had a member in Germany...who had her first ER treatment in UK...and, she was happy to be back home for some f/u there...Have had no connection for some years...Her MCA aneurysm was 4mm -
the best I can say on size right now...best I can note now...on size...but do note the different artery...at the bifurcation of the ICA... what I do not know/remember is IF her treatment was at the ICA bifurcation of the MCA...or if it was somewhere else in the MCA...
Some members think sharing too much info can/may frighten...and, I have always been the opposite in fear of "not knowing/not understanding"... before making a decision...
Prayers for what I have noted is not frightening...and that more members will provide to you their experiences and knowledge...
A few more little bits ...from me...before talking size...I thought of your insurance...
you may want to check w/them because some members have had to 'get approval'...etc.... and, some of that could rely on whatever your current "med record" defines...thus, you may want to get that data if you have not already...Hopefully you have email access to your insurance provider...or perhaps your policy clearly defines it...and/or you checked it out before you moved...
Then, we had a member sometime back (forgive my memory)..who advised about the Barrow institute..
and, for some minor fee ($100-200?) will view your existing data...you may want to check the Barrow website...if other members are not familiar with it...
I will f/u w/you on sizes...and, please remember it is only my personal opinion...based on info provided to us..
Prayers you get far more responses...
.
P.S.....the system was having difficulty and this had not been "entered"...tho I had attempted to input...
Thus, there is some duplication on the one below the first... which I thought had failed entry...
patioplans said:
Littlebits....my thought on the size of an aneurysm... I will still leave to later...
RE: your insurance company here...Have you, will you contact them ahead of time for their "yes" before you come over here...and, they say 'no' because ...
We have had members who have had delays due to insurance agreement of payment...and, there are variations in diff policies...
I had clipping by Dr Michael Lawton at UCSF Medical Center in the USA, San Francisco. He is one of top 5 in the world and some say top 2 neurosurgeons. Find a surgeon you are comfortable with. IT’s YOUR LIFE!!
All my best. I’m rooting for you. The system can be difficult.
Linda
Litlebits. If you are interested in contact info for Dr Lawton, please let me know. I will give you his assistant’s name and number. My aneurysm was a 9 mm basilar. I’m doing very well. Lind
Littlebits, I agree with some of the other comments made regarding the risks in getting an angio. However, I do agree with you getting comprehensive information pertaining to your aneurysm and any possible treatment available. I understand your fear and frustration of the unknown and it sounds like the UK neurosurgeon is fearful and doesn’t want the liability. You mention your husband and children in not wanting to leave them in coming to back to the States where you will be covered by insurance. Perhaps you can transfer your records from the UK doctor directly to your primary, and the referral can be set up in advance considering you have an aneurysm. Most medical records/information are recorded and shared online these days. Have you considered the value you are to your family now and in the future by seeking medical care even if you have to return to the States. Do you have family or close friends that you can stay with while getting medical care? Choose a time when the children are out of school. You can’t live a normal life until you know what’s going on. Try getting a second opinion there in the UK. Seek referral information from the U.S. Embassy, it maybe a long shot but at least you’re not giving up on getting help there.
Thanks for all of your replies! I have considered them very helpful. I have an appointment with a neurosurgeon at Johns Hopkins in Baltimore scheduled for the 20th of June, and an angiogram scheduled for the 21st in the morning. They have been so very helpful, calling me, and taking my calls and questions, and the doctor himself called yesterday to explain his reasoning for wanting an angio. He also said that as they go through the arteries they take a look at them to check for other abnormalities. He really did put me at ease. He also said that depending on the size and shape, and whether he felt treatment was necessary, he would want to put a stent in endovascularly. I’m not a candidate for craniotomy (and I don’t want that anyway!). Apparently that’s what they do there. I was surprised that he’d put a stent in and not coil it. Anyone have opinions on the difference in procedures??
Now, the decision remains whether to wait until our son is done with school (in July) or ask my husbands dad if he can come and stay at the house for a few weeks so our son can do his exams in June. We don’t have much money so it would be much cheaper to leave our son with his dad. He’s 15 so it’s not a huge deal.
Littlebits...so pleased for you...so amazed/pleased a neuro called you...however, did he not explain the name/title for the stent implant?
The support group here is entitled 'PED"...and, I think there was, or is, another of Pipeline... they may have joined together...?
Stents are like a new "lining" inside the artery walls...(easiest words for me...not at all technical)...
Before the new 'version"...some prior stents were used on more than one patient...often on more than one artery...for arteries dissected during the endovascular-type procedures....not all were covered clearly w/patients/families... or in the story-format med records...however, they could be traced by the codes, by images, and by billing (codes, again)...
You are beginning...blessed...docs would call cross-country...and, did he/she advise if they had achieved approval by your insurance company? (again, depends on your policy...if pre-approval is needed)
Linda also mentioned the renowned Dr. Lawton...
You are blessed your hub can be w/you and that his dad can care for/oversee your son...
JH also has online, a (word?) video /youtube (?) on the access from the groin to the brain...
There are numerous others like that...including the one of/by Dr. Patel posted here by starbirder...
And, offer my apologies to not refer these to you initially...he also has much more on-line...
Also here, and on youtube...is open surgery...of member: Kennedy Kirsch (sp?) ... a 17 y/o who had open surgery @ Barrow... I am 'awaiting' her update...
Prayers for each of your steps and so hope you will keep us updated...
Littlebits...
Last eve ABC news reporter David Muir provided info...from your selected JH...re: annual causes of death ratings...1 & 2 (heart and cancer) remain the same..3 is now estimated as "medical error"...
I was so pleased to hear/see/read...the quality of a med facility stepping forward...it is warming... as you were in telling us you had selected JH and the MD called you...
And, a couple of years back...a friend of mine gifted me a book by a JH MD...(memory failing title/name - need to find it in my decade+ of accumulated squalor). This book is not geared at neuro ..I was so impressed I wish I had been able to go back for the related GI/endocrine issues...too costly a trip for me on disability pre-retirement...which also affect the level(s) of retirement...
Your response was so impressive... of the JK selection and the doc calling you...
Prayers you keep us updated... and, for each step of your grand success...