Hi, I have started to make a few short films hoping to explain some medical info in an accessible way. Some will relate to this group and i'd be grateful for any thoughts. Take a look at this one on surgery and let me know what you reckon, and if there are other procedures, acronyms or issues it would be good to have a video about.
Short films: Hi, I have started to make a few short... - Headway
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I had no idea that craniotomy involved immediate replacement of the skull. I assumed there would always be a healing period between the removal and replacement of the flap, in other words I though the craniectomy procedure was the norm in all such cases. So I've learned something tonight !
But is the storing of a bone flap in the abdomen not horribly uncomfortable ?
My op. was coiling of a SAH and, although I'm aware that access was via the groin and up through a blood vessel into the brain, people tend to shake their heads in disbelief. So I wonder whether you might consider featuring that procedure in one of your videos James ?
I always enjoy your presentations ; they're so accessible and strangely calming.
Best wishes, Cat x
Thanks Cat. Next video is on stroke and has a mention of the coiling procedure, prehaps one on incredible surgeries would be good.
To be honest, I would go natural. I have a lot of faith in nature these days and nature can cure lots of things without wrecking your body.
If I and my family knew about the power of nature before my surgery in 1996, we would've gone down the natural route and pushed surgery aside.
I know not everyone would agree with that but to put it bluntly... they should.
Most people tend to listen to their governments and follow what other people do but why? Why do people follow their leaders? Why do people follow what is advertised by others or what is shown on TV?
Look at chemotherapy, one of the treatments for cancer. Yes the chemo might halt the cancer for some time but years down the line it willl come back. That is where chemo is not as good as nature.
I had a friend from my Headway who had a brain tumour and had chemo. She has passed now cos the cancer came back more aggressive.
I have another friend from Headway whose carer had chemo, he has also passed cos his cancer came back more aggressive.
Chemo is no good and statistics say that 90-95% of the time, the cancer will come back.
Please remember Matt that many pharmaceutical drugs are derived from natural sources.
The anti-cancer drug Taxol, for instance, comes from the bark of the Yew tree (Taxus), Aspirin from Willow, Codeine from poppy seeds etc., etc................. x
Oh yes, I am fully aware that pharmaceuticals are derived from nature but a bit of nature is not enough, we need 100% of it.
Also like you said about Taxol coming from the bark of the Yew tree. I have never actually had Taxol before, at least I don't think I have, but I wouldn't be surprised if a lot of chemicals with hard-to-pronounce names are also added to the mix.
Chemicals seem to be everywhere these days and I know all or most of nature are made up of chemicals but they are natural chemicals.
Man-made chemicals is what I would stay well away from or at least try.
Aspartame is a chemical I cannot stand.
The new Ben Goldacre! Give that man a BBC 4 show!
Hi skipper 53, it was good to know the surgical procedure if it has to be a craniotomy. Would there be patient coma afterwards, if yes, an average time scale? Also if bone is replaced immediately after procedure, how long to heal, what about the nerves also, they send the pain messages if any? Am I correct in assuming you don't actually do anything to the brain itself, just remove bone to evacuate any blood and relieve pressure?
Like Cat, I had, what they call here, an AVC, all totally spontaneous and unexpected, but all I felt at the time was a v sharp pain going up the back of my neck. I knew it was dangerous and had to keep conscious if possible, which I did by talking non stop till I arrived a the hospital almost an hour later. Then I just passed out, waking up 5 days later, having been transferred from 1st A&E hosp to a French CHU one. I just know I have 2 coils on left and 1 on right of my brain inserted via femoral artery or arteries. That info is only via my discharge letter with 1 DVD, received 2/3 months later! Got 2nd one after MRI and check up 6 months later.
That's the whole point, like Cat, I know nothing about the procedure was carried out - my brain scans are on .d.v.d's but my computer OS wouldn't run them and I'd love to have watched what happened!
I'm one of those patients who likes to know either what is going to happen, or what did! One of those fighters, not flighters:-).
It would be interesting to know how you retrieve the aneurysm itself, also thoughts on possibility of it ever recurring. How long will the coils/stents last, and what are they made of? Thanks.
Hi Shirley,
I've never told you but my sister is trying to decide if she should have surgery to treat her aneurysm. Only problem is its 11mm and as far as we know they've never tried to treat one so large, plus it's on a T junction on her carotid artery so can't be coiled. They are hopeful it can be done using a mesh, they've used the mesh before but only up 10mm. She's lived with the aneurysm for over 10 years it was discovered when she had a scan following her diagnosis of leukaemia.
Now it is critical because she needs chemotherapy for the leukaemia but they can't start til after the aneurysm op if she is going to have that.
So, it's make your mind up time for her.
Just a little tidbit for you. Like you I need to know all the ins and outs, my eldest daughter too, she has asked me to get copies of my brain scans, unlike France were not routinely given copies, probably cos we don't pay for them directly.
š Love Janet x
Hi Janet, so sorry to hear about your sister, I think youve said she had leukaemia before. Gosh yes her aneurysm sounds large. One of My liver 'nodules'? Is about 10cm I think, but it's just sitting there doing nothing hopefully,
I was thinking of YOU yesterday with your Encephalitis, and with what you've just said about your sister it has me intrigued. As you know I've been researching my health history for several months because of the BI and other health issues that followed rapidly or as I know happened years before, mostly to do with my feet/hands - bones in general.
My doctor actually took me seriously this time (I think) when I said I think my problems stem from having CMT. Charcot-Marie-tooth disease! he asked for a different test on my normal quarterly big blood test. As you know I was originally in 2012 diagnosed with a blood disorder that "could" turn into leukaemia at some point in time! Had the haemorrhage only 3 months later!
1st diagnosis was dismissed by 2nd Haemo after 2nd bone marrow biopsy a year after haemorrhage. but he's still never come up with a different diagnosis.
CMT is not a one size fits all condition, there are several different type and on a UK website I see they also refer to it as MND.but it is a genetically inherited condition. From what I've learnt about inherited genes when I looked at TB, that passes generationally from father-daughter-son! I don't know if that is always the case, given family generations of women have same breast cancer genes.
I have been thinking about putting a post on Headway about CMT, but need to formulate it in terms of heading and questions. The list of symptoms/conditions is almost endless, especially if any autoimmunity is involved in the blood cells. I have 2 autoimmune conditions.
I mention this because on one of the search pages it said about chemo not being good because it kills all the blood cells off, including one ps that make you immune from different conditions! It really is very involved and complicated, researching CMT, but it answers almost all of my things I've been looking up.
For 2 years now since moving up to this house, my blood tests have repeatedly had a query as to my origins, and if any Afro/Caribbean connection in my family. Only the fact my father in ww2 was stationed in Rhodesia in 1945 as RAF pilot. Not long after he decommissioned he had TB, I was born 1947 and also had TB as a baby. In Rhodesia there has been for centuries a hunting Dog called the Rhodesian Ridgeback, it has bone deformity on its back and drop-foot, as I've had since childhood in both feet, now hands. CMT is a slowly progressive condition in humans (don't know about the dogs). So I ask, could my dad have had contact with one of that breed, or eaten cooked hunted meat (wild boar) to eke out wartime rations, I don't know. Wild boar is eaten in the countries it lives in.
We have them in France, my old neighbours used to hunt them, I've also cooked and eaten a large lump of boar meat that was given to us, ugh it tasted horrible! Probably how I cooked it 
no not saying that piece affected me, but you can see where my mind is going in thinking about everything in my health and my dads.
If you remember months and months ago I did a post called, Finding the Links and making the Chain. CMT certainly does that for me more than anything else. I'm going to ask to see a neurologist and or Specialist Haemotologist to discuss all this and hopefully get a gene test.
The sites I used were
Wikipedia,
CMT.org.uk I think,
France has a good website on CMT (I typed full name in on all searches. CMT.fr
Inspire.com - is a really good support website, in much the same manner as HU, but covers many many more conditions. I only signed up to that one yesterday.
I was told last December by Health Authority Doc (confirming somethings I'd found for myself anyway) that I have Thrombocytopenia - a collection of conditions. I could go on and on but had better stop. I hope some of this is of use to you and any others here if they think it might be relevant to them also, for a stroke or BI. In other words a non-accidental BI.
Shirley xxx
Hi, it's something we've touched on in conversations, the inherited conditions as her daughter has MS an autoimmune condition, one of my daughters has coeliac disease also autoimmune and my other daughter requires vit B injections as her body absorbs very little from food, one of my aunts on my mothers side also had to have fit B injections all her life. My mother died at 51 so we have no way of knowing how her health would have eventually been but we have inherited her high blood pressure but hopefully not the heart disease she died from.
I do think more resources should go into preventative medicine which is why I am part of the Biobank scheme in this country. I was approached at the age of 50 to take part, as was my husband we had to go through a battery of health tests and questionnaires about lifestyle etc. I was recalled at 60 and went through it all again, by this time I had had the encephalopathy so that was noted, I also had full body scans at this point too. All your results are kept and you have to agree that they can be accessed by professionals for any research they may be doing. I figured if it helps future generations then all well and good.
It is not a health check but if they find anything untoward or outside of the norm they will inform your GP.
Thanks for the info, much appreciated
Janet xxx
Hi Janet, again you said some things of interest. My mother was 59 when she died from ischemic heart disease. I didn't know her health history as she left my father when I was a baby, his family is the only side I know. I trace her and kept in touch for 6 months only. Won't go into complications of that. I did manage 3/4 years ago to get a copy of her DC though.
The Thyroid community advocates Vit B12 a lot. I was blood tested once and must look that result up, but think It was OK then. Very selfish of me I know that.
in 2014, my skin went white on my arms, parts of my back I can see, also my heels, lost the pigmentation, it's called Vitiligo, someone suggested on a different Community I might have coeliac when I was looking for answers to things. I did look the condition up, 'considered' it but generally dismissed it? I was beginning to feel like a hypochondriac by then!
No I don't need a reason to have health problems, they have just slowly happened over years. I've only been doing this research since last Autumn, slowly over the months.
That's pretty much why I disappeared off here, for weeks or months at a time. I didn't feel I could be of much support to others anymore, as you all have been to me While I was whinging on about personal problems.
Probably also why I was giving people advice rather than emotional support, again based on my experiences. Even as I write this, listening to Victoria Live on tv, showing some of the Oscar Oetorius , it got me thinking about him and his loss of lower limbs and potential for neuropathy, the circumstances he described on that fateful day.
I've often had mornings when ive woken suddenly, not know what day it is. Dozed off only 2/3'times in afternoons,woken around 6:7ish, not knowing if it was morning or evening when the light quality meant it could have been either. Then had "to pull my self together" to get back to reality.has that ever happened with you?
All part,of the "perception" element in our brains - no, our "minds"! No wonder with a BI we get confused and have brain fogs.
So to your family again, yes I see mention of everything my research has touched on relative to my several lifetime health things. I am now definitely convinced it's more and correct blood testing needed in the circumstances.
I already know my oesonophils have had "warning markers" on the results - all of which which I queried with Dr or Haemo Specialist, who have both said not a problem! But then they are both separately only treating one of my several problems and health history didn't come into it with them!
It's good to see you and your husband signed up to BioBank. If I wasn't in France, where I don't understand enough of the sense of information conveyed, in the way they use the language, I'd do the same here.
Oh yes there are now times I wish I was living back in UK, or back down in Montpelier where the University hospital is, that I was in down there in 2013. They have a v good research reputation and are involved in both Thyroid and the CMT research especially. I think my "blood disorder" would have been looked into further and better down there than it has been where I am living now.
I do hope you and yours get to the bottom of things to see if there is a genetic or other health links between them. I was so pleased to hear how well stem and genetic cell research has progressed.
re CMT, What does concern me is the mention of using pigs to develop organs (liver currently I believe is the one being concentrated on) that could be transplanted into humans. My pharmacist already said I shouldn't eat pork, stick to beef, chicken, fish.
Although it has crossed my mind that we have to consider potential impacts of human BSE warned about, when we had that situation with all the cattle being slaughtered. There are now so many more mental health issues, especially amongst younger people, many things make me wonder "what if"?
I prefer to deal with proven fact, though I don't see a problem in speculating. All research has to start somewhere!
It's difficult for people not directly connected to a specific health problem to understand, because they are not genetically linked to or affected by it themselves - it's why life is so hard for carers, it's not going on their heads and bodies at same time.
Carers have so much more to "get their heads round" emotionally than we do.
It's also why we all need these support groups
For your sister, surgery techniques have improved so much these days it could be she would better having the aneurysm removed first. Less cells and mass left for the leukaemia cells to invade. That's not a medical opinion from me, just a personal one.
I do think blood testing for gene cells or other things not directly connected to the L, though might not be a bad idea before ANY treatment or surgery is undertaken for both. The results information could benefit your sister and both your respective daughters.
Also Vit B12, amongst other Vits, is essential for everybody's body. We should all be tested for it as a matter of course, even if only annually. I'm prescribed 3ml liquid dose of D3 monthly as a matter of course. Not sure if the dosage is sufficient or not, it's only 1 000 000 ul. But I always feel 'better' for it, for several days, before effects seem to wear off.
I haven't read the surgeons reply before replying to you, thought it might cloud my judegement and reply. I'm going to look at it now, I might find something else of further interest there.
Believe it or not I do have faith in the medical system, it saved my life 3 years ago, but I also believe much more immediate research and note taking on individual's own and family health history from before and after birth should be done and kept on record permanently. Not so difficult with computer storage thes days.
If I knew 18 years ago when my dad died, all I know now, who knows what might have been prevented happening to me before and since my BI, through proper or better health testing. However, better late than never cos I'm still here trying to survive before things get any worse. A post mortem would be too late, if it was even conducted. My fathers D C only tells a small part of the story, it was based only on known facts at the time. Must go, time to eat now.
Take care, Shirley xxx.
Going back to the start of your post my youngest daughter has patches of vitiligo and we suspect my son has too, all autoimmune conditions aren't they? Perhaps it stems back to the use of antibiotics! It's a huge old question.
Like you I find the stem cell and genetic research fascinating. Brave New World indeed.
Janet x
Hi Janet, I still haven't eaten yet! That the slow aspect of BI, isn't it, thinking, processing and doing and I've just replied to Skippers reply to me.
Vitiligo, I've not seen or been told it's an autoimmune condition. It's also the v dry skin and flaking that goes with it.
Hair loss/thinning especially,which I also have, is listed as a Hypo Thyroid symptom. That started not long after diagnosed Hypo in UK in 2000.
Don't know about antibiotics effects, I've rarely if ever taken them except since here when I had UTI's. One only I think, bout of cystitis in UK.
I may of course have been treated with antibiotics when I had TB. There is so much I can't give or get answers to now re my or family health because of my age and deceased older family members, as in Grandparents, Aunts and Uncles.
You are right, and like you I embrace the Brave New World!
My only other fault is I talk (do you remember?) and write far too much - my dad was the same, because he was a psychotherapist and analyst - that must also be inherited ..... xxxxxx
HI. As ever really hard to answer questions about specifics as everyone is different. Her is a very nice sotry of one person's healing after surgery. mycsfleak.wordpress.com/201...
In the U.K you can ask for your notes and images theere is a cost the maximum charge of Ā£50, but be warned they are hard to read and contain lots and lots of acronyms. If you have dvd with images they are probably in DICOM format which is a specialist medical format. I downloaded a programme called Osirix to view mine I am on a mac but there may be a windows version too.
keep on recovering!
James
I found a couple of the after effects of surgery written about in the link interesting, re the post op itching and flaking. My right foot specifically still has that problem 54 yrs after the 1st and subsequent ops on it. They are the only surgically bone invasive ops I've had.
E45 or my equivalent here helps with that, though I was prescribed it in UK along with my Thyroid med! It all comes back to slow progression as I age.
Hi James, thanks for your reply. Very interesting re the Mac and programme you used to view with your OS. My WindowsOS on PC and an Asus Netbook are defunct due to computer and Internet (?hacking) problems. 3 Techs have looked at them here, couldn't find problems and said worked fine when in their workshops!
So you might have tipped the balance for me, my 16gb iPad Air2 is all I currently have. I've been thinking of buying a new Apple PC, they are expensive, especially when buying in Euros here. They don't know the meaning of competition!
Also apple dealers are few and far between here. There was one in LE Mans, but it closed, so I might have to order from Apple online, (also expensive) with the problem of needing English language software installed but living in France. I need a bigger one for storage and capability. My iPad software is iOS, do you have Yosemite or different on your Mac? Sorry it's only a computing reply to yours here. Shirley.
I am on a macbook running Yosemite. it's good though the new O.S took a bit of getting used to and Mail is messy pain in the Bum. Osirix is a free downlaod and fairly easy to use. Good luck and don;t spend too much time on candy crush
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