Which doc to see, where to go, please help

[eman]

Jan 2006 I had a nerve disease workup at Mayo Clinic, Rochester (the nerve problem was nutritional and is no longer a problem). Part of the workup involved a lumbar puncture, which gave me a massive spinal headache. I had my first blood patch at the Mayo, it worked for a couple days, and slipped before I got on my airplane back home to Alaska. I didn't survive that first plane ride to St Paul. My CSF leak opened full bore, and I was evacuated from the airplane to a Hospital in St Paul for a few days. I was later givin another Blood patch, and sent home on my way. I got back to Alaska, and the blood patch was holding, later that night, it slipped again, and I got a very mild orthostatic headache, accompanied by a drunken dizziness (disorientation), very hard to explain, intemittint left sided headache, with focus around my left ear, and a massive feeling of "pressure" in my head. I lost my job, and was unable to work. I had two EBP in Alaska, which improved me, but didn't put me back to normal.

I could get no help in Alaska, being that we only have about 3 Neuros in the state with no expertise in these Matters. Eventually I went back to the Mayo, saw Dr Mokri. He told me to wait 3 more mo, and if I was still having the Orthostatic symptoms, to come back. He was right, and my symptoms finally cleared in May (5 mo from the LP date). Also, I might add, that my MRI, and CTs were all perfectly normal at this time, despite the symptoms.

2 weeks ago, I had a very serious flu, and high fever that seemed to have opened up the CSF leak. My orthostatic symptoms are back. They are very irritating and debilitating. I'm just not sure what to do at this point. Being that my MRI/CT have been normal, what are the chances that Cisternograpy or a Myleogram will identify my leak? It's possible that it another 5 months, It just might heal again on it's own, but my concern is if it opened up again, this could just continue my entire life. Should I go back to Mokri at the Mayo, or go somewhere else. Are there any other world pros in CSF/ICH out there? Mokri was not my original doctor at Mayo, so I felt much resistance getting back there for a consultation with Mokri. I had to shake down patient services to get anything done. They kept saying since I had normal MRI, and to seek services in my local area (no Drs in Alaska that can help). Please, if anyone has any info that could help, let me know. I'm praying to god that I can continue working and make it through. I know 100% that my issue is CSF related. That LP changed me.


eman

[eman]

My main symptom is a slight headache, and massive pressure on my left side of my head/ear while upright. If I lay down for a while, it'll pass. I am able to move around symptom free in the morning for about 10 minutes, until the brain drain kicks in. Does this sound like symptoms anyone else is experiencing? Of the blood patches I had, they did seem to improve me each time. Before my first blood back when I got back home, if I tilted my head up in the shower, I would come near blackout, the next blood patch fixed this, but didn't clear up my left sided pressure/dissorientation. This took about 5 months to go away on it's own.

Are the symptoms I'm experience typical of a Lumbar puncture leak?

If blood patches didn't work, what next? I'm willing to bet my MRIs will show nothing. If standard MRI doesn't show any brain drain, is the yeild on Cisternogrophy or a Myleogram reliable? Any advice is appreciated. Thanks,

[Edward]

Hello E-Man,

Sorry to hear of your problems. I am suffering from an apparent cranial CSF leak brought about due to a head injury...so I cannot really help you out much. But there are other kind folks here who do have spinal leaks and I am sure they will get back to you before too long.

Your experience with the lumbar puncture is certainly making me think though. I am scheduled for a cisternogram in a couple months to look for my cranial leak. Of course, that involves a lumbar puncture so I am not too sure I want to have that done! Nothing like being stuck between the old rock and a hard place (but I know you can relate to that).

You have certainly come to the right place for support and for some good company.

Take Care....Ed.
:)

[waterlover]

Hi Eman,

I'm sorry to hear of your plight....sounds much too familiar. And so disappointing to hear more physicians respond with the same old answers. My doctors here in Boston did tell me that the cisternography/ct myelogram only finds 80 % of spinal leaks......I suspect the 80 % are probably spontaneous leaks or big tears from epidural catheters.....and the remaining 20% include smaller LP leaks. But just because a needle is smaller doesn't mean it produces any less symptoms. A hole is a hole if it doesn't heal and ultimately will leak enough csf to produce meningeal enhancement and pull the brain down.

My story is posted throughout here. Fewer of us exist with lp leaks that last a long time but we do exist, more than the medical community wants to face. I had two epidural shots and ended up out of commission for about two years and then slowly improved to where I'm completely functionl but still have head pressure especially with exercise. I showed my husband your post because it is really a clone of so many of us and as someone with a lp leak, I understood the disbelief that physicians give you. After my husband read it, he just shook his head because it was so much like my story. Physicians are convinced lp holes always close 100%, that it is some guarantee of life, like the sun rising every morning. Exactly how and what they base this belief is unknown....but it is costing people valuable care and compassion with this condition. Anyway, your sincerity and confidence of symptoms, knowing that indeed that lp did change you is something you must continue to confront your doctors with. You know best!! And on the positive side, I do believe the overwelming number of lp leak cases do eventually heal. Some have lingering symptoms but are able to function completely. So, think positively, eat healthfully and hydrate yourself and in time I suspect you will get better. My thoughts are with you.....I know it is not easy. Feel free to private message if you'd like more info. My best--Waterlover.

[Concerned Gal]

Eman,

Firstly, we all know what you are going through! And i'm sorry. No one should go through this.

When I read your post, my feeling was that yes the LP was a contributor in the emergence of your leak, but I just have this feeling that you were predisposed in some way. you said you were already experiencing some neurological/nerve problem. I guess when there is one problem, there often tends to be more. Ask around here and you would be hard pressed to find someone with just the one health issue. but for some reason your body (like most people's here) couldn't heal itself. The symptoms you are describing are pretty typical of the ol' leak. Maybe you have a weakened dura and the LP just brought it to light ? (just thinking aloud)

Firstly, the MRI you referred to...was it with contrast? If you have an MRI with contrast and you don't have meningeal enhancement the leaks have been known to be harder to locate and treat (got this from a very well-respected neuro I emailed). If you had the enhancement I would be more inclined to go for the myelogram to confirm site of leak. If you didn't, a myelogram is still a good option, just may not be as good a chance of locating leak. I also have had a csf flow study (which is same as myelogram but they use a different dye and imaging device). The imaging is like the equivalent of a satellite photo (woudn't recommend).

The fact that you healed initially is a really good sign though. But since it has returned only 8 months after you managed to kick it last time, it may have been that it was still there all along (but significantly milder). When I got sick for the first time I was also experiencing a few colds/flus just prior to it getting really bad. Might be something in that...

It if it was me. I would wait it out for another month with total rest. Plenty of fluids, and eating. No Bending, Stretching, live like the tin man (that's what it feels like when you walk around really stiff) and maybe even get an abdominal binder (known to assist). If I saw no signs of improvement, I would go probably another lumbar blood patch first, then if no response, a myelogram.

As for knowledgeable drs....they are few and far between. I'm in Australia, so I'm the first one my Drs have seen. But in saying that, they haven't been too bad. I have had some minimal email contact with a Dr in US, plus the help of the great people on here. And my outlook is that we will probably all be predisposed to getting leaks in the future, just take one day as it comes.

HOpe this helps. Sorry if i'm all over the place and a bit blunt. I've had a long day and it's time for bed. I really wanted to respond to you as a fellow spinal leaker though.

Also, I was of the understanding that flying can increase your leak. Your experience does support that but I'm wondering whether anyone else has noticed a difference when flying? I'm too scared to!
Take care

[waterlover]

Eman,

Just a few points to add to Concerned Gals comments.
From what studies show and my physicians explained, the cisternography tends to show a general area where the leak might be but it doesn't pinpoint it. So, in fact it could validate you that you are leaking but not really help in treatment per se. The myelogram tends to pinpoint the leak area better but may not show anything. Both require lumbar punctures but involve different substances- the cisternography uses a nuclear contrast and the myelogram is a dye. I actually had both done in the same LP. A mri with contrast could show csf pooling in the spine or enhancement in the brain. But most likely not the leak itself. As told to be my a neurosurgeon/friend, myelogram holes almost never show up on imaging but when he has opened up patients for surgery after performing myelograms, he said, they sure can leak!!

I suppose the million $ question is why don't these leaks heal? Many on this forum have other health issues, some involving overt immune issues.....which in my mind makes perfect sense. On the old csf forum, there were numerous people with MS, lupus etc. who needed lp's to treat/diagnsose their conditions, and took much longer to heal. However, there are others (including myself), who did not have any obvious issue. I was involved in competitive sports, worked professionally and have a family......I led a full life. I probably did have something subclinical going on.....which most of America does. As a nutritionist, I'm guessing your nerve problem was a B6 or B12 deficiency, both which can be fairly easily reversed. Most doctors treat it lightly and would never connect it to the dura not healing. Perhaps, however, it is connected to other nutrients of yours being slightly subpar contributing to the slow healing process. I'm speculating, and obviously not a physician but my point is everyone's biochemistry is different and our body works as an integrated system.....although many physicians would have you believe otherwise....every system affects one another. I also think there are structural/mechanical reasons why the dura might not close efficiently.

Some of the other experts in this area are Wouter Schievinck at Cedar Sinai in LA, Christine Lay in NYC. Also, mentioned by Csf Challenged is Timothy Hain...I've seen some of his papers, though I forget where he is located. I would consider some help from a licensed nutritionist, who has some experience in complementary care....it is an area recognized now by the American Dietetic Association. Healing begins with nutrients. My best, waterlover.

[horizontal handmaiden]

eman,

Your daily, neurological symptoms are spot on with a CSF leak, but of course you already know that, and there are other symptoms as well. I have experienced spontaneous tears throughout my spinal dura in multiple locations up and down the vertebrae, presenting anteriorly, posteriorly and laterally, large and small since the beginning of 2002. Some tear sites have been patched surgically in two separate open spine operations, because countless ebp's and fibrin glue injections and protracted lumbar drainage failed. My last CT/myelogram and cisternograms evidence "multiple, tiny, lateral tears" in the mid thoracic region, which are completely different sites than the other tears. I've also had epidural catheters placed for trials of normal saline, also to no avail. Your 10-minute morning routine is also my own before I "go flat" for the remainder of each day. But we are grateful for our mobility, and small windows of verticality, yes? I view this as God's particular grace to me. I will echo the responses already made to you, and add the following.

1. I do not have any contributing medical condition that companions with CSF leakage or is an underlying, contributing factor. The only ongoing medical condition I had in the past (and still have) is migraines. The symptomatology is of course quite different and not related to compromised duras. A neurologist or neurosurgeon experienced in the treatment of our condition understands this marked difference.

2. An experienced neuroradiologist or neurosurgeon will read a CT/myelogram, a cisternogram, or an MRI with a practiced, skillful eye, and an open mind; others may not. My body made its way through several major medical centers/teaching institutions in California before it came to rest with a neurologist who subspecializes in this condition. He can spot "leaks" on the studies that others cannot outright, OR by carefully identifying abnormalities at nerve endings which then lead to confirmatory findings on the operating table. I know this from personal experience and from that of at least one other patient.

3. CSF leak sites are darn hard to identify, notwithstanding the above. I've had both postive and negative cisternograms and CT/Myelograms, positive and negative brain MRI's, yet the condition is present all along. Negative findings does not always mean a leak is not present. This has been the experience of other patients I know as well.

4. There is consideration that spontaneous CSF leakers may have a predisposing condition related to connective tissue, e.g., Ehlers-Danlos. I've been evaluated by geneticists without any such findings, in addition, I do not have that symptomatology or a family history. The same is true for other leakers I know, but my own neurosurgeon has treated a spontaneous leaker with an underlying connective tissue disorder. Your leak seems related the LP puncture (rather than spontaneous), but is the current leakage from the same site or a new site? Of course, you wouldn't know unless you submitted yourself for one of these studies and the leak site is identified. I've been told that lumbar punctures made for the purpose of a myelogram "cannot happen" but I don't believe that is the case ... for all patients. I've personally never had a leak site identified that directly relates to the placement of the lumbar needle (also punctures in my neck for the same study), but still, I'd be reluctant to accept that as a blanket statement. So, caution reigns.

5. My treating neurosurgeon is a believer in our condition, and boy, is that ever half the battle! Wouter Schievink is the director of the Vascular Neurosurgery Program at Cedars-Sinai, Los Angeles, California. You can see his primary specialty is in vascular disorders, however as I mentioned, Dr. Schievink has been subspecializing in our condition -- both spontaneous tears and those presented from trauma such as accidental punctures -- since the late 1990's I believe, and has published medical articles to this end. Not all of his patients are thrilled with their association with him (for various reasons, some seems to be understandably sheer frustration from lack of cure, some of it may be personality conflict), however I have found his work and opinions credible and his compassionate nature of help to me; he performed my second open spine surgery. Since 2005, we've come to the same conclusion that I am no longer a candidate for surgery, however I know he has performed repeated open spine surgeries for other patients who also have persistent tears presenting in various areas of the spine like me, but who he obviously believes to be a surgical candidate. In addition, Dr. Schievink's staff is efficient, organized, informed, and responsive; this is the best such team I've encountered in the medical community for this condition, and I believe his leadership sets the tone. I present the following information in the event you are interested in making a contact: Wouter I. Schievink, M.D., Maxine Dunitz Neurosurgical Institute, 8631 W. Third Street, Suite 800E, Los Angeles, CA 90048; telephone (310) 423-7900, fax (310) 423-0810; nurse, Kate Bailey; office manager, Cherry.

My sympathy to you, eman, and to the challenges this silly condition presents!
h.h.

[eman]

Thanks all for replying. h.h. before I read your post, I'd already started proccess of making an appointment with Wouter. I do have a soft tissue problem as well, although I was not told this until months after my LP. Prior to the poke, I had absolutely no problems with headache, or orthostatic symptoms. My original reason to head to the Mayo Clinic was an evaluation for neuropathy. It ended up blaffling them, and they left me with possible small fiber, or a nutritional deficiency. I believe it was nutritional, being that after a few mo of vitamin and sublingual B12, I improved, but my orthostatic symptoms remained after 4 blood patches (they improved). So I went to be evaluated for nerves, and was given an injury that can really debilitate me. Myself and my wife are a bit of a wreck. We are planning the trip to Los Angeles next week, and are worried that the tests might injure me, and I will be stuck in an LA hospital. We just don't know what to do. I'm praying to god that the leak studies will show something. My standard MRI/CT with contrast last year showed no indication of the syndrome, even though my orthostatic symtpoms were extremely powerful.

I am very scared. I went from a working man a couple weeks ago, to being disabled again from something I thought had healed (that mysterious leak that the average doctor or even neurologist will say is impossible). Life if bizzare. Wish me luck, and once again, thanks everyone for the responses.

Are any of you on permanant disability for this condition? I may be enacting my short term soon. I can't work like this. Any info is appreciated.

eman

[horizontal handmaiden]

eman, Your fear is palpable and understandable, and I can certainly relate.

Yes, I am on permanent disability. I believe you are wise to pursue your disability options, as currently you are unable to work, and your personal history with this condition is unpredictable at best. I was a sole proprietor in February 2002, and therefore not eligible for state disability benefits. Thoughtful friends started me on the process for social security disability, which is a long, arduous and often baffling circumstance. There is a forum on BrainTalk dedicated to SSA chat, and you are welcome to personal message me if I can be of help.

h.h.

[suburbanlady]

Does anyone have any experiences with Dr. Kern, an ENT at Northwestern Memorial Hospital in Chicago? I'm going to him for a CSF leak endoscopic surgery I have coming out of the nose. I saw on this forum another doctor mentioned from Northwestern, but I was wondering if anyone had heard of or had any experiences with him? Im being told by the varioud doctor's I have seen for this leading up to my surgery that there should only be a one week inthe hospital stay or less and about 2 weeks of light rest. From what I'm reaing on the forum from you guys I'm getting a different story. Are these ENT's sugar coating what I am in for? I have also been told that 90% of these leaks are fixed the first time and I should be back to wrok in about 3 weaks.
I'm reading about pain, lying down, repeated leaks, loss of work, etc. My leak is form the nose and in the middle of the front pasrt of my face in the brain and is small they say. Give me the real 411!! from: Suburbanlady...

[squeakysmum]

eman,

while nobody has been able to help my husband, we have had contact with Dr. Bill Dillon at UCSF and Dr. Ali Shaibani at Northwestern, both of whom were very sympathetic, understanding and communicative. (Not that their sympathy and understanding have helped, but it was more than we got from Mokri, who flat out refused to see him without explanation. At least they took the time to look into the situation.)

I think they would certainly be worth contacting.

-Christina