Worse Again

[Blue skies]

Oh dear!

Just don't know where to start: my DH had a spontaneous csf leak around 2 and a half years ago and since then we have been through the whole rollercoaster: he has had variable improvements with EBP's - the best being a high volume (60ml) patch around a year ago. That 'cured' him for 5 days. Then another high volume patch last summer made him much worse, back to lying flat, awful headache, nausea etc. We sat it out and he has gradually improved over 6 months so that he is again pretty well functional.

Then, over the weekend, for no obvious reason, he started to go back to where he was before and is now having to lie down every hour. It's mainly that he feels 'faint' when he stands now although he doesn't pass out and there is still a milder headache. It's as if he doesn't maintain his blood pressure when he stands although the doctor seemed to think it measured normal.

In the past, when he has worsened a little, we have had an idea why: carrying too much, bending, especially his neck or upper back, sitting in a soft armchair all make him temporarily worse but we have no explanation this time. Anyone had their condition go backwards for no obvious reason? Is there something else I should be thinking of?

He is really not keen to have more medical intervention: none of it has had any lasting benefit so far and an early diagnostic LP and the most recent blood patch have definitely made him worse.

Should we just give him some more healing time again? Lurking on this forum has been a great souce of strength - my DH never wants to make a fuss and I feel I have to act as his advocate, but it's so difficult to know when to call for help and when to let time take it's course. Thank you to everyone who contributes to this forum, it's a huge source of information and comfort.

[LauraL840]

Wow Blue Skies,

I feel like our families must be twins separated from birth! My DH's leak isn't spontaneous, but so MUCH of what you wrote sounds like our life!

My DH is also currently in a much worse phase since the last blood patch. Not from the patch though. He has problems with high pressure when his leak is sealed (we think because he's leaked for so long that his body has adjusted CSF production to compensate) and was able to control it with Topamax. However, 7 weeks after the patch it opened up again and has been VERY volatile! It's the worst he's been in 28 months! He's in been today (missing work) because the CSF has irritated the muscles in his back so badly he can hardly move ... this is a new symptom for him and since he's inactive, we can't blame it on overexertion.

Back to your DH ... when was his last MRI brain? It might be time to have another done to see if he's having significant tonsillar herniation. That could be causing the symptoms he's describing. Also, to accurately discern if he's having a drastic drop in blood pressure he should have readings done several times. Do you know how to take a BP? If so, get a cuff and stethoscope and take a BP while he's down. Wait 10 minutes and have him stand and take a BP after he stands up. Do this several times at different times during the day. Does he get light-headed EVERY time he stands, or some time? It's important to capture his BP during the time he's light-headed because if it's a sudden drop in BP that's causing the symptoms the only time it will actually READ low is DURING the symptom!

Also, make sure he's adequately hydrated! Dehydration can cause similar symptoms and since he's leaking, he's likely to be 'dry'.

Has he had imaging that's identified leak site(s)? I understand the frustration of navigating the medical community ... but in the two years I've been reading this board, there are at least 3 doctors and facilities that stand out as leading he way for treatments in the US. Dr. Wharen in Florida at Mayo Jacksonville, Dr. Linda Gray-Leith in North Carolina at Duke University Med Center, and Dr. Schievink in California at Cedars-Sinai Med Center.

Since he's had a 'positive' blood patch (in that it worked completely even though it wasn't lasting) he falls in a category of leakers who are most likely to achieve healing. However, not without some intervention (EBP, Fibrin, etc). All you can do is encourage him to keep trying. My husband went through peaks and valleys concerning what to do with his leak ... there were times he was content to do nothing and learn to live like this. Now he's adamant about pursuing healing and now that we're being treated by the best (for my husband), we are certain that healing is coming sooner rather than 'some day'.

HUGS! I'm right there where you are and I know the emotional ups and downs you feel watching him in pain and being unable to do anything more than advocate for him, pray for him, research for him and sometimes SPEAK for him! I also know the frustration you feel at not being able to MAKE him better or make him call for help and keep trying. I'm right there with ya!

[Blue skies]

Thank you for your support, Laura, it really helps. I'm sorry to hear your DH is going through a bad patch and am grateful that you found time to respond when things must be pretty difficult for you all.
I was interested to hear that your DH has been having more back pain since he restarted leaking - mine too has been complaining of much more discomfort at the site of his last epidural (where we - but not the doctor - thinks the dura was inadvertently breached) just since the weekend. Hadn't considered that it might be due to csf irritaton -good thought!
Incidentally - do you, as an observer of a leaker, notice any physical signs of him leaking? I can now pretty much tell when my DH has leaked because his face kind of loses all its fullness and he looks really gaunt and often pale too. When he 'resets' by lying down , he gradually returns to normal but then gets dark patches in the corners of his eyes, near his nose. It's just an observation, but I can tell him before he mentions it so I guess it helps for him to feel it has some external features!
Anyway, I appreciate your advice about physicians. I have read many of Dr S's articles and admire him from afar, but unfortunately we are in Europe. There doesn't seem to be anyone with his level of expertise here - unless anyone knows different?!
I think that the idea about a further MRI is a good one - maybe they have that facility for myelographic sequencing that I have seen mentioned before. Nothing will persuade him to have a myelogram at the moment ( another LP is the last thing he needs) but you're right, a further MRI might well be helpful.
Let me know when your DH is healed and I will look out for a result in my DH in our parallel universe! :)

[mot]

Dear Blue Skies,

So sorry you and your husband are going through this.
Where did you have your high volume BP done?
I know how hard it is to know what to do, but once you start this
journey the way isn't always clear. I am experiencing these
strange BP fluctuations too but so far haven't gotten anything definitive from
the doctors. I think like Laura said you should take some BP readings and present them to the doctor. It is difficult not getting a straight answer but
eventually if you persist you'll have a better idea of what you are up against.
I wish you all the best and know from personal experience what you are going through.

Mot

[LauraL840]

Blue,

Yes, I can ALWAYS tell when DH is feeling poorly! He has beautiful clear light blue eyes that look like they're 'on fire' when his HA is getting up there. When it's not as bad, his eyes are clearer and 'cooler' looking, but not completely 'normal'. He also gets a knotted look between his eyebrows that gets tighter when his head pain increases.

When he had his first surgery at Cedars, the knot was gone and his eyes were beautiful clear pools again! That was the first thing I noticed! His face was completely relaxed, his color better and his eyes, OH, his eyes were BACK! I miss that! He had 3.5 weeks of no knot and no BURN in his eyes ... even though he had significant post-op pain!

DH also has that sunken look to his face. He turns 51 this year and I swear this leak has aged him! He used to look 10 years younger than he was, but now ... he's starting to 'look' his age! I'm really hoping that once he's pain-free he'll regain some of the years this leak has robbed him of!

Mostly, I miss my best friend. That part has been harder for me than all the rest! Yeah, it's agonizing to see him in so much pain, but it's heart-breaking to miss someone who's with you every day, but not 'with you' because so much of their vitality has gone into making it through the day and they have no energy for conversation or interest in 'the mundane' of life.

So we just keep putting one foot in front of the other and moving forward!

For what it's worth, DH's third EBP made him SIGNIFICANTLY worse (took him back 9 months to original symptoms). We also questioned the docs about an inadvertent puncture and they (of course) denied it as a possibility. However, he got worse ON THE TABLE before the blood was ever administered! So we're certain they 'missed the mark' and went too deep and opened up the leak site again. Unfortunately, it's water under the bridge, but after than EBP he was VERY leery about allowing them to do any more! This was before we went to LA.

Could you get to Italy? Somewhere in my research I have a name of an Italian doctor who is or was doing epidural patching with a blood and fibrin mixture. If you think this is a possibility, I'll go digging sometime to see if I can pull a name, location, and contact information!

[Blue skies]

Dear Laura and MOT
Thank you both for your helpful comments - we had time to think things over last night and I think DH is going to return to our local consultant so we can discuss further non invasive scanning and possibly another blood patch. He has also started wearing the abdominal binder again which does, at least, seem to help and extend the 'up time'.
I suppose one benefit is that at least this time round we are much better educated about all the options and the things which do and don't help.
I do hope that you will both see an improvement soon too, and thank you for taking the time to help us.
B