Specialists haven't been able to ascertain cause of low sats (73) . Only thing that has shown up on latest tests is that have a low lung function plus episodes of low sats . When have episodes feel dizzy/ woozy/ wobbly/ confused and want to pass out when standing and sitting.( basically cant stand ) Can stave this off by lying flat but sometimes even then I pass out.
Past medical history survived high dose chemotherapy for Acute myloid leukaemia but left with blocked superior vena cava and to bypass this body has grown collateral veins and is still extending them.
SO not been fully mobile on hills for years but was still pretty active on level surfaces. However that has been getting less and less here in Johannesburg where I live ( altitude 4000m)
BUT recently went on visit to UK and was back walking again, and able to sleep right thro without headache and wake up no problem at 6am here it is 9 or even 11am and only had one episode in 5 weeks there when I couldn't wake up and that was at the beginning of my visit.
Latest CT scan showed no problem with lungs ( maybe some at microscopic level?) except for all the collaterals feel I need more oxygen to function but as Docs cant identify problem they and medical aid wont prescribe.
Venous specialist says collaterals taken over job of transporting blood just don't squash them so don't wear tights clothes! Not that I do as body swells during day .Been trolling the internet for ideas but some days brain wont function either.
Need help or ideas PLEASE
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Do you live in America? If so we do have people from there who may be able to help. As I have no experience of your condition, I cannot advise. It would be worth sending an email to BLF. Click the Help button at the top for details.
Health system is as good as what you can pay for ( Private)! And if you cant pay its tough luck. We have medical insurance but not the top as we couldn't afford the high premiums. Sometimes i wonder if you are not just being put through tests just for the costs! But the public system is extremely bad.
You are back in Jo'burg now and have the trouble again? I would move back to the UK! Ha ha. It seems that the elevation has something to do with the problem wouldn't you say? Sorry, no idea of how to help.
We visited Jo'burg last year as my partner's brother lives there and has done for many years now - his adult children were educated there and now they have children of their own. Funnily enough didn't have problems at that altitude myself and neither did my partner - though he does sometimes get problems at altitude - especially at night. I hope someone comes along soon who can help.
Going down to sea level seems to help so YES will be doing that in September, for three weeks to see if have any of these episodes then. However not sure as to how long it will help for then. This seems to be coming on slowly over the years. Episodes were originally with internal bleeds about every three years. End up in hospital for a week, have all sorts of tests nothing odd found apart from anaemia but this last one did show up low sats and restricted lung function but no bleed and could dance and walk and talk when got out. However episodes happening every other day now and on days when can get up and about by afternoon back in bed again.
THanks for replying though
4,000 metres is very high and I have heard that high altitude can be detrimental to those with lung damage. Is it possible you could move to a much lower level? x
WE are going down to the coast soon to see how I am and if need be we will have to move. However IT will mean a big move, my children are here and the nearest coast is a six hour drive or further down where south where it is not so hot( cant breathe when it is too hot and humid either) a two hour flight. I was hoping to find some magical medical answer !!!!!!
I assume all the heart tests have done? Have they ruled out pulmonary hypertension?
That would fit with low sats and low cardiac output. Was your SVC syndrome caused directly by the myeloid leukaemia or a venous line to deliver the chemotherapy? Sorry to bombard you with questions but I believe that I have SVC syndrome, In my case I think it may have been caused by scarring in my lungs thus resulting in external pressure on the SVC. I have been describing my symptoms to doctors for three years but it has been the devil of a job getting them to take any notice. I have raised jugular vein pressure, distended JVP, neck swelling, discomfort, flushing, swelling and numbness in my cheeks, discomfort backing up into my ears, eyes, and a low-grade headache. As well as scary pain behind my sternum.
You are the first person I can contact who actually has the condition.
I do hope you get some help. Sometimes we have to be quite persistent and insistent with doctors.
With all best wishes and let us know how things go.
HI, I also saw a venous specialist so presume he is suppose to know about Pulmonary hypertension but he was very pompous . He told me that my internal bleeding couldn't have possibly been cause by the SVC obstruction as my body had solved its own problem by growing collateral veins! Yet when i check on the net there was a medical site that says it is quite common !
Will check out symptoms of pulmonary hypertension. Problem is that a lot of it is in Doctor talk!
MY SVC came about due to hickman line catheter. SEems it is quite common nowadays but 19 years ago no one could explain the symptoms and by time it was discovered six months later it was totally blocked and i was already growing collateral veins.( Plus don't think they thought i would survive anyhow) Tried twice to unblock it to no effect. Found by doing a scan of the area.
Have you had a scan? What scarred your lungs?
I still have to sleep propped up here in Johannesburg or else my face swells up and I end up with slits for eyes as well as a stinking headache and a hoarse voice yet when in the UK I couldn't believe that It didn't have to and how well i felt and could walk! (It drains away once i get up and moving though but then the swelling seems to move to other parts of my body like breasts and stomach).
I once can across a site for folks with SVC syndrome but cant find it again.
Here we are on private medical aid and everything has to be cleared by the medical insurance first or paid for . !
Thanks for your very full and informative response. The scarring in my lungs is from pulmonary emboli and the bleeding that resulted from that. But no doctor has taken the matter of my neck problems significantly. My symptoms are nowhere near as horrific as yours. Not noticeable to others, apart from my daughter and husband who have both noticed the change in my neck. I had guessed that yours might be from the Hickman line. SVC can be caused by external pressure, often from lung cancers but also non-cancerous scarring.
So... Still waiting for more clarity. Also waiting for diagnosis of the small airways disease which causes moderate obstructive disease and debilitating breathlessness.
The diagnosis I have is chronic thromboembolic disease. Which in my case has, luckily, not led to pulmonary hypertension which it often does.
We live at a thousand feet in the Peak District. So nothing in comparison to your altitudes. I have an appointment with an asthma consultant tomorrow in Leeds but I doubt if he will be able to shed much light on things. My main consultant was trying to eliminate things. The airway problem is looking like Obliterative Bronchiolitis.
When I have anything more solid I shall be posting here with six foot high lettered.
Hope things are going well for you. It sounds very difficult.
So will I but I wouldnt hold your breath. Good luck to you to and I hope you get a CT scan to help clear up some options. X M
PS believe it or not Leeds is my home town. Was actually there in June visiting a school friend but must admit it has all changed. Areas that were rough when I lived there are all done up now and some of the good areas are rough now.
The circle of life keeps turning.
2 litres of O2 via nasal prongs would normally be prescribed for anyone with saturated oxygen of 73. I think I would be asking my GP why I am not on O2.
After my first attack - just after I got off the plane back from visit to the UK I was rushed into ICU as docs thought got a P Embolism from the flight. But it was so similar to my other attacks/ collapses I didn't . Was put on oxygen then. However as all tests came back negative apart from the sats and reduced lung function so after four days when I was feeling better I was let go. However that hasn't lasted long, - just out of bed after another bout. I just couldnt face another trip to ER, and I am so so tired of having needles stuck into me I thought I would try and deal with it at home - I don't give blood up very easily got damaged veins too after chemo so it is hell every time I have to.Before they can give oxygen they need to have tests showing problem! Phoned the specialist and was told to stop some of the medication they have me on as that could be making me tired!
However I have ordered a finger pulse oximeter. Sats seems to drop badly overnight?
My moderate COPD was first investigated after an unexpected attack of breathlessness when I went up the Mount Teide cable car in Tenerife - 3500 metres - I felt better as soon as I dropped back down to 2500 metres - was able to walk about with no problem.
I was a little surprised myself when the respiratory nurse gave me my diagnosis as I don't cough much, and I only cough up stuff from my lungs and sinuses when I have a bad infection.
Well after much internet research all of which points to my SVC condition I have asked my GP to find me a specialist who has dealt with SVC syndrome.
Seems that even the cardiac / venous specialists specialize in certain areas and tend to only think about their area.
I have never coughed up stuff from my lungs ever and they are clear on the various Scans over the years. So just waiting now, I refuse to go to another clinic and be stuck with needles and end up paying for tests that I had before and still come back clear. Even if it means I am stuck in bed!.
Thanks for your chat -If you come to S Africa, Just don't come to Johannesburg or Pretoria. Stick to the coastal areas or even the Kruger which is in the Lowveld ( low lying land) whilst I live on the Highveld.! (Huge plateau). But the Kruger can get very hot though ! And I will stay off the Cable car in Teneriffe too unless they can sort this out without major surgery.
Lesson to self - make your own appointments and clarify exactly what test / CT scan is being done.
Got an appointment with another venous specialist(consultant). Yes he knows about SVC syndrome but no he hasn't treated anyone else with it and doesn't really know why we chose to see him!
AHHHHHHH think I and sigh but as we are here though, might as well talk about my problems as I have to pay for this visit anyhow. (grinding of teeth) Maybe he can help
He puts his point of view forward, I put mine, trying to do so in medical terms. I tell him my current problem is not having enough oxygen for the body to function one of which is suffering from headaches.
Ah he latches on to the headaches and now he thinks that my problems are from a restricted blood supply to the head? Wants to have another CT scan on the upper body.
UH didn't I just say I had plenty of collaterals which according to another specialist mean there cant be a restricted blood flow to the head?
I explain again, it is on the surface of my abdomen that I feel the problem is, I cant seem to get a full deep breath!
No he needs another CT scan so he can see for himself where the collaterals are.
I accept thinking great he is going to look at where ALL the collaterals are draining.
One CT scan later where I think odd surely I should be deeper in this machine than I am, if checking up on the abdomen but as I have my eyes closed most of the time and trying to breath lying flat I don't say anything. Should have!
As he only checked out my upper body.! Good news, no blockage to the brain, lots of very large collaterals. Total blockage that could be fixed by open heart bypass but it is a very tricky operation. Would not recommend it , if feel better at sea level best to move.
But what about my abdomen / liver? What/ where are the collaterals doing there ask I?
OH he didn't check up on them But should I need his help on anything just contact him.!
AHHHHHHHHH think I gritting my teeth. so then I asked him if I could have some oxygen at night to see if it helped meanwhile.
Sure said he, not sure how it would help but no harm in trying.
However whatever he put on the letter to the medical aid didn't work. They turned down my / his request to pay for same and as we are going away next week to sea level anyhow, I decided not to waste any more money until we get back.
Will also then go see a pulm.... olgist - lung specialist.
No not any better but as long as I sleep with the fan blowing straight into my face I can at least wake up.
Guys just a correction - I live in the same area and Pretoria / Johannesburg area is from 1600 Metres to 2000 Metres above sea level. 4800 Feet to 6000 Feet above sea level in your terms.
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