Well, don't believe everything you read

[Concerned Gal]

Okay, so i had my MRI of the spine last week in the hope of detecting the exact location of my spinal leak. I definitely have a spinal leak (confirmed by MRI of the head, and a ct myelogram however, the exact location wasn't able to be confirmed by ct myelogram as the fluid that had leaked out was too excessive). Anyway, thought it might be worth a shot as they were planning on looking really closely at the nerve roots. I've had like 6 MRIs in the last 8 months, and this was the first time I ended up getting extremely hot in the machine and they had to take me out momentarily. The technician said something about the heat making my molecules move faster or something, so thought it might be a good sign for detecting this darn thing.

Anyway, today got the results. Went to hospital to see the Anathetist who performed the blood patch and has taken a special interest as he is writing an article on the matter. So, not a neurologist but has an interest in this area. So, i wait in the waiting room for ages and get called in by another Dr (his "Fellow" or "Trainee" I like to call him). So he asks me how I'm doing, and I say much better than before the 3rd blood patch (last one being thoracic) but still not 100%. Have this intense grabbing sensation around the left side of my neck a lot of the time (like seizing up, i used to get this real bad will made me lie down straight away, so same as before but not as bad), burning and aching in upper shoulders (across back area - where they think leak is from myelogram), hearing problems (whirring and "tunnel" hearing), excessive urination...you all know the drill :) Also tell him that if i lie down at all after getting up to start my day, once I get back up again, I have significantly worse symptoms for rest of the day. This has happened so many times that it's not coincidence, it genuinely makes the pain worse for the rest of the day. He asks whether it interupts my sleep. I say, no lying down (as in asleep etc) helps me (ie no pain). My first clue that things were about to go wrong was when he said "mmm, that's strange". Errr, what? Lying down shouldn't stop symptoms of a csf leak?

So anyway, he tells me that MRI of my spine was same as my MRI that i had last July (no further ideas on leak site) :mad: I had kinda expected that but thought it was worth a shot. So anyway, he sits there and says apart from the hearing thing, I've got no other symptoms attributable to a leak, so guess what, i'm cured :rolleyes: I'm like, um, pardon. Yeah, apparently he thinks that my leak site is now healed over and the symptoms i'm still experiencing are unrelated.

So, let's see. He thought it was strange that lying down helped, and symptoms I had prior which have lessened are no longer related.

Then, my favourite part. "Don't you know 80% of all spontaneous leaks heal without treatment". Um....???? I follow with, but I know of a lot of people's who haven't. He responds with "Well of course they report on the bad stuff". I counter with "i've had this for 13 mths now and I have an MRI of my head from last month saying that I still have meningeal enhancement (admittedly it is "reduced in severity" but it is still present). He goes "oh, um, can I have a look at the results". Then, after reading it clearly saying "STILL PRESENT", he goes, see look at that, enhancement is less, so we've plugged the leak and it's gone now. Um....

After dealing with this s&%$ for about 20 minutes, I, feeling tired/emotional/disappointed/frustrated start crying a bit. To which he follows with, you really need to seek counselling. I countered with, I don't need counselling, I need treatment for the damn leak! He continued with more of the s^%$ mentioned above, while I continued to have tears running down my face. And he starts again with needing the counselling. Grrrr. I was managing quite well til I met this fool.

Then, he wanted to keep all my scans (I have stacks!) to scan them in for their article. I totally have attitude going at this point, saying "what are you going to be using them for" etc. I soooo nearly said, I refuse to have my case featured in any article you are participating in, but the one thing that stopped me was that it might benefit someone else reading my story. However, this brings me to the point of my subject line - keep an eye out for the article with the 24 year with the "cured" spinal leak. But then again, don't they only ever report of the bad stuff....

[Concerned Gal]

I think I would prefer a consult with Repeat Leaker's neurologist's receptionist!

(i think it was RL with the Receptionist story - sorry if it's not)

[guineapig]

Concerned Gal,
I am sighing deeply. I have had similar experience. Neurologists I have been advised by are mostly ignorant of csf leak symptomatology, leaks in general, and little to some appreciation for helping with the symptoms. Sounds to me you were right on track: "I countered with, I don't need counseling, I need treatment for the damn leak!" Beautiful. Did you really say it to his face? Brave girl, particularly of your age. He wants to publish to put a feather in his hat, increase his colleague recognition. Doctors can be dirty. And then they bill you and cash the insurance check. What did Charlton Hesston say at the end of Planet of the Apes after realizing global apocalypse (which is what a csf leaker goes through): "Damn them, damn them all to helll!"
Well, I don't wish helll upon them, but maybe a few, well-placed pokes from a sharp stick; somewhere in the region of say, the meninges. Actually does no good. If you want to know why send me a note and I'll tell you privately.
Guineapig

[waterlover]

Concerned Gal,

Ahhh, I ditto Guinea remarks. Good for you for your response to his arrogance....but it is enough to make you genuinely crazy that some of these doctors actually think because they can't find something or resolve something that it must not exist anymore. I, like, Guinea have experiened doctors tell me I must just be anxious or stressed with all that I've been through. I like your "bleeping bleep" thoughts....though they were probably too kind. I must be lucky now to have my neurologist......I've been through at least 6. And my current one admittedly says we don't know if I still have a leak......though if I do it is very small, and she believes will heal in full one day.....and if I don't she believes my symptoms are completly caused by a once chronic leak. As I've said to Guinea, I am amazed doctors treat the dura as if it is this invinsible piece of tissue that always heals. Our dura is a tissue in our bodies subject to our immune response, which for a variety of reasons may not be up to par. Anyway, so few appreciate the severity of these symptoms......when I was at my worst, 9/11 had occurred and we were invading Iraq....and I remember thinking the terrorists only needed a nicely placed epidural needle and they would be stopped in their tracks. Only doctors who have either experienced it themselves or have had a family member experience it appreciate the incapacitating impact a leak can have. My son had surgery during my leak and I remember lying down in the waiting room and his kind surgeon coming out and allowing me to lie down on a guerney in another room......a family member of his had leak after back surgery, so he was completely sympathetic. Unfortunatly, these guyes are too few.

I am praying your blood patch helps/works/heals!! Take care--waterlover

[Concerned Gal]

Guinea - Yeah, i did say that. :D I'm usually a little meek and mild, polite young lass, but I couldn't let that one go, had to call him on that.

But i've moved on since. The whole thing bothered me for the day, and then I thought, really am I that surprised that the medical profession "failed" me once again. I'm just taking it one day at a time, and I know that I'm the one who knows best for my own welfare. So I think at this stage, I should wait it out a bit and give myself the best chance of moving forward.

Hope everyone else is hanging in there!

[repeat leaker]

So sorry to hear your story.

My recommendation is to NOT have that dr. benefit at all from publishing your case. He is using you and clearly does not have much knowledge in this area.
CSF leaks are a rare condition that drs recognize as a potential to get "recognition". However, as a community of leakers we should ensure that our horrible stories are only told by caring physicians who are truly trying to help us and others that come after us.

This moron is not one of those caring physicians we need, based on the post. His "study" may end up hurting our leaking community versus helping us. My sense is his article may be about spontaneous resolution to leaks - which I think all of us on this post know from weeks of pain, suffering and emotional ups and downs is not always true.

Don't let him profit from your pain and suffering if you don't trust him. Walk into his office and demand your chart, scans to be returned. Let them know that since you have been miraculously cured there is no need for them to have any record of you.

Sorry for the passionate plea - but I have seen this before with another member of my family with a rare condition. The family read about the case in a journal, without consent or pre-review of the material.

RL

[Jaded1xx]

If you all had any idea how much it helps me to know that others like me have been so rudely mistreated by the very people who are supposed to help us... Sometimes I don't know what's worse - the physical pain or the emotional pain that can be caused by callous and uncaring docs and nurses. I cannot even count the number of times that a doc has asked me what I'm doing to fix my leak. What have I NOT done??? I feel as if I'm constantly having to defend myself - and for what? Do they think that having multiple lumbar punctures and invasive procedures is something I do for fun??? There are times when I lay home in pain because I cannot tolerate the verbal abuse and side glances I get when I go to the Urgent Care or ER. I usually end up in tears from frustration, pain, and a deep ache in my heart. Whether or not I am ever "cured" of this thing, my life will be forever changed for the worse due to the ignorance of these people. The medical profession has definitely lost my respect.

Sorry, just needed to vent a bit!! ;)

[Baffled]

It seems that many of us have had some frustrating experience with a doctor along the way. I too experienced a doctor thrilled to take me on but then when she realized an article already existed, my case was easily dismissed. In one way, I guess that was a blessing.

I would like to believe that there are several good sources of medical information regarding csf leaks but do not have the medical background to determine which ones are more correct. When I met with Dr. Mokri, he told me a reliable source of information is: "Neurologic Clinics of North America." It contains comprehensive articles.

[Concerned Gal]

Well, not sure what to do now about the article. i had hoped in a 'too good to be true way" that someone knowledgable would see my scans and see something that no one else has been able to detect. And i know the lead researcher on the article is the guy who actually has a clue (even though he's too busy to see me in person :rolleyes: ), so I'm hoping that he will prevail and not the dr who clearly has no clue on the topic.

hope we are all doing okay.

[Edward]

Hi Everyone,

I've got to get my editorial comments into this discussion also!:p

Between years of dealing with my autoimmune disease and now months of dealing with this leak, I, like the rest of you, have "had it" with our modern medicine. Doctors cannot help that fact that they do not know everything but what they can help is how they treat people. I have come to the conclusion that medical schools must not teach students how little we really know. Rather, it seems that most doctors have too much confidence in what they do know and not enough respect or awareness for what they do not know.

I was reading the other day that some scientists predict that our knowledge of medicine is proceeding so rapidly now that someday we may cure all disease and in fact we may acheive immortality for mankind/womankind. Anybody else here find this just a little bit humorous! Like my wife said, whoever wrote that must have different doctors than mine!:D

In all fairness though, doctors do have a very tough job. I could never be a doctor - there is just too much uncertainty involved. Every time I made a diagnosis I'd be second-guessing myself because I know from my own experience that many times illnesses do not behave as the textbooks say and tests are many times subjective or not accurate.

Have a great day....Ed.

[dagaz]

I have a question, obviously I have tried many many surgeries to try an have my csf leak repaired. Nothing has worked, I have given up trying. My question is, since meningitis is rather rare and you are not suffering from debilitating head aches or head aches at all, why bother going through Lumbar Punctures and such when the LP can cause a leak? I would say count your blessings and if you begin to get head aches that are helped when laying flat then get your questions answered by a neurosurgeon who has extensive knowledge of CSF Leaks.

I'm sorry you have gone through so much:(

[Edward]

Hi Dag,

I am curious about your comment on meningitis being rare. From what I have read, meningitis with CSF leaks is not rare but is rather a very likely complication. What source is it that you are referring to that says meningitis is rare? I hope you do not think I am trying to bother you on this point. That is not my purpose at all. I, like some other people on here, are very concerned about the threat of meningitis. Some, like me, have small leaks with few symptoms and if I knew that my chances of meningitis were minimal then I would probably just live with my leak. But, I have come across numerous references relating CSF leaks to a substantial risk for meningitis (including a Mayo study that showed that even people with occult leaks developed recurrent meningitis).

Again, I hope to hear back from you on this point because I think this is an important subject that should be discussed. I don't want someone sticking a needle in my spine or opening up my head to do surgery if I don't have to! By the same token, I don't want to sit around with a false sense of security only to get smacked by meningitis.

Have a great day!

-Ed.
:)

[Edward]

Sorry Dag,

I realized after I posted my message that you were responding to a message regarding spinal leaks - not cranial leaks. I agree with you, from my understanding, meningitis is not a big risk for spinal leaks.

I think though in the past you have also suggested that meningitis may not be such a big risk with cranial leaks either. I am so curious to hear where you have heard that from because everything I read suggests otherwise.

Take care....Ed.

[Concerned Gal]

I think an interesting point to note here, is that the headache/pain isn't the only symptom of a spinal leak. The sensation of the neck being squeezed similar to being choked (goes away when lying down), the loss of hearing, the general disorientation that comes with a leak, and the pressure changes when bending (to name a few symptoms) can be all dehabilitating, worthy of seeking medical treatment and needing the leak fixed to live a satisfactory life, especially when you have a confirmed csf leak through mri and myelogram.

I personally think that if one considers the condition "unliveable" and if another ct myelogram could provide a confirmed site for surgical repair, then I think it is an option that should be considered. Yes, you are opening yourself to possible further complications, but sometimes you need to go through these tests to get progress. Especially if you have your whole life ahead of you.

I know of a lady who went through 3 or 4 myelograms until they found a possible leak site, they went in (surgery) saw the leak clear as day, said that would never have healed itself, and is now living a normal productive life.

just my opinion.

[Edward]

Hi Concerned Gal,

I am sorry. I hope you did not think I was making light of your situation when I agreed with Dag that meningitis is not a big risk with a spinal leak. I did not mean for it to come across that way but I can see how it could have. I'm in a totally different boat then you. I have few symptoms with my apparent cranial leak (other than ear discomfort) so my main concern is getting meningitis. That is why I am always "harping" on the meningitis thing. So, my comments to Dag were solely on the subject of meningitis. With that said, I TOTALLY agree with what you are saying for your current sitaution. Given how troubling/painful/debilitating the symptoms can be for you it is certainly worthwhile to pursue generally-accepted medical practices to address those problems. There is risk in everything in life but that does not mean we should not try. Especially, like you say, when you have your whole life ahead of you.

Take Care....Ed.
:)