Lyla

[burk]

Hi, I am new to this however have been reading all posts for some time now. I have suffered for two years and now believe I am on the right track thanks to this site. My question is...does anyone have information regarding Dr. Mokri? I am in the process of obtaining an initial appt with him however if he is not the best then I guess I am going to California! I am tired of suffering and being treated like a drug seeker! I too am a nurse and questioning my carrer choice! I feel horrible/sad for all of you but grateful for this site and the support and companionship that I read everyday as spouses are not always so understanding! It is reassuring to know that I am not alone and I pray for each and everyone of you for relief, a cure! I am currently a sponge trying to soak up all knowledge that I can prior to any appts. It is me or them and by george I am going to beat them at this game!! thank you , thank you!!!

[bonniemaggie]

Lyla:
Dr. Mokri focuses on brain leaks. He has written a lot of articles about ICH. [an aside: try searching PubMed to see what these folks have written (Mokri, B = 97 articles, Schievink, W = 142 articles). Many of these articles are about ICH. www.ncbi.nlm.nih.gov/sites/entrez ]

If you have a spinal leak, the gold standard is Wouter Schievink at Cedars-Sinai in LA.

I am seeing Robert Wharen at Mayo-Jacksonville. He apparently trained Dr. Schievink. Dr. Wharen is accomplished at dealing with ICH & CSF leaks, as you will read if you search this forum.
But Dr. Schievink is passionate about the condition, and really focuses on dealing with it.

[vini]

welcome lyla

the the US folks will help you with this

just wanted to welcome you, hope you get to see the right doc it so important

[burk]

first of all THANK YOU for the reply. A short snapshot on my story. It started one day while sitting at my computer at work. I felt a burning spider web like sensation on my left temporal area. It started as burning then pain. Exruciating pain on the right side of my face and then settled in my neck. The only relief was lying done. absolute relief. I spent two years doctoring. I have had all nerves in my neck burnt, prolotherapy, teeth extractions etc. I have thrown more prescriptions away than I got filled. Treated as a drug seeker with a migraine. After two years of suffering I finally could not take it and started searching the internet. It took going outstate to Wisconsin to get a diagnosis and be treated as if I was not nuts. Thank god I came across this site. I have obtained more information from this site than any doctor. I have searched all of minnesota looking for a specialist in spontaneous leaks. Dr. Mokri appears to be the only one however I did go to the Mayo ER because I could not take the pain anymore and that was a dissapointing plan as the ER doc told to me tie a band around my head to divert the pain. Of course, I blew! I was a step away from being admitted to the psych unit and when I left there were two cops that appeared to be there to escort me out. Needless to say I am leary of the Mayo. I will say I have a new appreciatio for doctors that have been honest and stated "I dont know much about this" "you would be better helped going elsewhere" I have thanked them for thier honesty and as you all know financially this is horrendous and wasting time with doctors that do not know what they are treating. I have had two blood patchs this summer. It took two due to the prolonged leaking. I am now going tomorrow for another one as the pain is returning however after reading this site I now know that I must stay flat for more than the 30 minutes like I did in the past. So I am much more knowledgable thankful to all of you. Wondering I a trip to california is in my best interest or another state. I would be eternally greatful for any suggestions. I know relief is out there and I will find it. does anyone know if the fibren glue patch can be done when the leak is near the brain? again..thank you, thank you, thank you!!! I do believe I was led to you by a higher power!!

[LauraL840]

Have you had ANY imaging studies done to get an exact location of your leak?

Your symptoms line up MORE with a spinal leak .... with the MAJOR exception of how you describe the beginning of this for you! The 'accepted' rule of thumb for cranial leakers is little to no headache ... big-time orthostatic headache for spinal leakers...

Did you have or do you remember having any kind of precipitating event before onset? Try to recall up to a week or so before the onset HA....

Do you have any fluid leaking from nose or down throat?

Fibrin patches (like the blood patches you've had) are not for cranial leaks ... sorry! However, it's vitally important for you to locate the source/site of your leak! Your pain location may not be an indicator of leak location and it could well be that your leak is spinal and not cranial.

So I guess for starters I'd see about getting full spine MRI with myelographic sequencing and full spine CT with and without contrast ... neither of these require LP to inject imaging contrast and would likely only show something GLARINGLY obvious. Also, you should have MRI brain and 'thin-slice' high resolution CT of brain and possibly sinuses and temporal bone.

If NOTHING shows on brain (have neuroradiologist look at MRI for tonsillar herniation, meningeal enhancement, pituitary enlargement, etc - all signs of intracranial hypotension) and nothing obvious on spine, then I'd consider CT and MR myelogram with intrathecal contrast injection (this requires the dreaded LP) and MAKE SURE THEY TAKE YOUR OPENING PRESSURE!

Did you get full or only partial relief from your blood patches? Do you remember the volume? Were they lumbar level, thoracic? How many days/weeks between the two? How long was relief? Your answers may help determine if leak is spinal or cranial too.

I'm not sure about Dr. Mokri and what he's currently doing for leaks. He's definitely in the 'pioneered and paved the way for the science' category, but the people here who have seen him seem less than pleased overall. We haven't seen him. He is more the 'spontaneous cranial' guy ... and he's also more the 'wait and see' guy. So as far as 'where do you go from here', I think that all depends on what you want! If you're getting good resolution with blood patching, I'd consider keep trying ... if you get a positive leak site ID'd as spinal, I'd try fibrin ....

OK, that's probably enough of me 'brainstorming' your post! LOL

It's nice to meet you and I'm sorry to meet you and thanks for 'un-lurking'!

[burk]

OMG! I am so happy you responded. I have had CT's, MRI's with and without contrast, all of head and neck w/ negative readings however Dr. Sa my diagnosing doctor performed an MRI that proved the "brain dropping" he stated by measurement readings of my brain and skull was the indicator for the leak. He also stated that it is like finding a needle in a haystack regarding locating the leak as well as costly. I have been believing that my leak is cranial! I never even thought of the possibilty of a lumbar leak due to the location of the pain and location of the onset of pain. The week prior to onset there were no injuries, trauma or bumps that I can recall that could have caused it. I have had a spinal 14 years ago. whiplash many years ago but thats about it as far as my memory recalls. What tests should I request? I will definetly ask for my reading prior to the proicedure and make sure I write it down so that I can inform you as all of you are my one and only resource! My heart goes out to you and I thank the lord every time i read this! What is your opinion on massages? I no longer see chiropractors! Back to your questions. No fluid leaking however I am watching for that now and not just regarding it as a runny nose-I NEVER THOUGHT!! I got total relief with the first patch and was in heaven and acted like it to! that is probably why it did not last very long and then had a second. they were done last summer. The pain has returned and I have requested another one which will be done tomorrow however I am also leary because I am directing these treatments as I do not have a specialist yet which I am currently working on I just dont know if Dr. Mokri is the one for me???? I am willing to travel far and wide to find the right one. I live in minnesota. Please keep brainstorming for me!!! i will check in the morning prior to leaving the my appt. have a good night!!!!!

[burk]

its me again! I am sitting here thinking about all the posts I have read about drainage and NEVER once thought i could be experiencing this as well! NOT ME!! LOL. I feel like a little kid in the candy store and not knowing which way to go and so excited that I found you guys that I am in disbelief!! and my tears are finally tears of joy!! i am going to watch every sniffle etc! I am on a mission now, your mission so I am glad you are letting me join!! I want to just ramble so I will sign off for now!!!! talk soon!

[burk]

Yes it is me again! have so many questions running in my head! tell me about nasal leaking! is there a strip type test, quicky, to determine if I am draining? thanks again!

[Robbysmom5]

Hi - I felt the same way as you did when I first posted and got responses. (Especially from Laura :) )
There is a thread in CSF testing for nasal/ear leaks. I will look for it and bump it up.
Good luck with your blood patch. (ask for the location and volume)

[LauraL840]

Lyla,

Regarding cranial leaks and fluids. There is no 'quick test' to determine if fluid draining is CSF. The best test is what's called a Beta 2 Transferrin. Beta 2 is found only in CSF, vitreous humor (intraocular eye fluid), and perilymph fluid (very small amount). To get an ACCURATE test, the fluid has to be collected and handled correctly. It's often frozen and sent to special lab for testing. The Beta 2 protein breaks down very easily and many places mess up this testing process and come back with false negatives. Mayo (however) is one of the best places for testing and many facilities overnight samples packed in dry ice for Mayo to test. I'm not sure the total fluid amount needed to test, it is in an article that's on a thread called 'Beta 2 Transferrin' ... I'll try to bump it up for you later.

CSF is CLEAR, thin fluid. It mixes with mucous and blood readily, so if you've got drainage that's mixed it conceivably could contain CSF. However, IF you've got a cranial leak, there should be times that you just leak clear fluid. Many cranial leakers' fluid only leaks down their throat and not out their nose! I'm sure one of them can give you better specifics on what I'm going to say they might notice, but what I recall is that they comment on the TASTE (metallic-salty), many complain of sore throat and higher incidents of acid reflux. These symptoms are consistent with CSF draining down throat as it's irritating to tissues (other than the brain).

Regarding massage ... go for it. I'd definitely avoid chiro and anything that involves manipulation. Acupressure massage would be better than acupuncture (my opinion only) as it targets larger areas and is not as 'site' specific as acupuncture.

If you got total relief with your first blood patch my guess is that you're a spinal leaker (also because of the orthostatic nature of your HA which is typical spinal and completely atypical for cranial). Since you got relief, I would do more blood patches and TAKE IT VERY easy for several weeks/months following before going on a 'needle in a haystack' invasive search for a leak site. I'd avoid a lumbar puncture at all costs (right now) and instead opt for treating via blood patch. At some point you have to decide when to pursue more aggressive treatment, but it sounds like you could heal with patching, so I'd stick with that right now.

IF IF IF you decide for more imaging - see if you can get them to do full spine MRI with myelographic sequencing .... myelographic sequencing IS NOT a MR-myelogram ... it's a setting that they program into the MR software to have it capture images and 're-stack' or order them in a certain fashion that looks like a myelogram image of the dural layer. There is NO lumbar puncture at this point, so little risk of causing additional leaking. Have you had a lumbar puncture to inject contrast with any of your other imaging studies?

Patient directed medical care is a dangerous thing! And what seems so simple (plug the darn leak and my HA goes away) can often be more complicated than we think. My husband and I 'directed' our medical care for the first 14 months with limited success but no long term improvement. We learned more than they knew about leaks but had physicians who were willing to read the research and learn more about what to do before proceeding. However they always fell back on their knowledge base which contained little to NO experience with chronic spinal leaks. We had MUCH better care, quality of care and outcome when we decided 'enough is enough' and went to LA to see Dr. Schievink. Now we have a neurosurgeon who knows INFINITELY more than we could ever hope to know about spinal leaks, a proven track record full of success stories (despite some not-so-successful stories that you can read on this board), and a desire to see us to the end of this darn leak!

If you can see an expert in their field ... go.

My personal opinion of your post is that you have better than a 75% chance of your leak being spinal. You don't really have any 'tell-tale' cranial leak symptoms. But because this all started with an excruciating headache it is natural to assume that the 'problem' is all in your head! It also sounds like your leak is spontaneous in nature and not related to a traumatic event. Spontaneous cranial leaks are MUCH rarer than spontaneous spinal leaks....

If you can see an expert in their field ... GO! :D
I am VERY BIASED as to who I would recommend, so if you want a 'referral' to see Dr. Schievink, I'm happy to give it! If you want to see someone else, I think Dr. Wharen at Mayo Jacksonville (FLA) is having success with leaks and Dr. Linda Gray-Leith at Duke in Durham (NC) is having success treating leaks. However, Dr. Gray is a neuroradiologist with no 'assembled' team of interventional experts, so she's somewhat limited to blood patches although she told us she would do fibrin (but had not ever done fibrin in 10/08 when DH saw her).

Keep a notebook with your research, questions, treatments, time-line of symptoms, etc. Go ahead and have copies of ALL your medical records relating to this event. Get copies of imaging studies, etc. All of this will be an advantage for you as you can discuss your case and refer to important facts easily!

ASK QUESTIONS! Lots and lots of questions!

[burk]

Ok. Had BP today. injected 18cc into lumbar dura space (if that is correct verbage). at the lowest part of my spine. 188cc was about all I could handle.. more painful than the last two. I have had them w/o anesthesia. I have been experiencing horrendous amount of acid reflux. No drainage that I can tell in the back of the throat, no sensation anyways. Nasally I am draining clear liquid. do have a friend that works in the local hospital lab and I am going to collect some this evening and he will test it. not sure if I will be able to collect today due to laying down. I am just shocked about the spinal leaking. for the past two years I honestly believed that my problem was cranial. Do you suggest I start the process with Dr. S now or wait a bit being I just had the bp. I am terrified of directing my own care and even more terrified that I am being allowed to. I did ask the interventionalist today about the possibility of nasal drainage and he said that unless I have had a recent injury it is very unlikely and of course my first thought was to get back to you. I am in need of direction. I am at the point of having some one tell me what to do and I will do it and it appears that that person is going to be you, this site. so please let me have it. After reading about Dr. Mokris concervative style I am leaning towards Dr. S. what do you think? is it too soon? I am also concerned about the accuracy of the nasal fluid after reading the post however I am still going to do it, being it is free but not put alot of faith in the results if negative. I did taste it with a questionable salty tast but at the time my head was spinning and very easily could have imagined anything. better go back to bed. thanks again!!!! how am I ever going to repay you!!!!!! BLESS YOU ALL!

[burk]

oops! 18cc was injected. and to correct my first post the pain started in the RIGHT temporal area and has remained there, not left. sorry!!!

[Sally Girl]

I sent you a private message.

Having taken my daughter to Mayo (though not to Mokri), I would never recommend going there. Yikes, they are closed minded at Mayo (Rochester).

Cheryl

[burk]

quick symptom question. I have been having sinus type facial pain primarily feels as though sinus cavity is hollow, heavy with a dull ache. i am surprised I am feeling this today as i have been on bed rest today. any ideas or just another paranoid thought? have a good night.

[curranmom]

burk - Welcome to the site and sorry you have to be here.

I was wondering how your headache feels since the recent bp you had done? I would have to agree with Laura that I would consider you to be a spinal leaker. Have been told by the best (Dr S) that you don't have the orthostatic headaches that you are clearly having with a cranial leak. However there could also be a small chance of having both. I am without a doubt a spinal leaker but I have had all the cranial leaking issues and also had a positive Beta 2 Transferrin test while being treated for my spinal leak. But I have also fallen down some stairs at a point and hit my head pretty hard and that is what started my cranial leaking issues possibly. So could one have both a cranial and spinal leak, maybe.

You question about if its too early to contact Dr S my answer would be no, if I were you I would gather all my medical records, films, etc and send them to him. He will take a look at what you send and make any suggestions to you from what he sees and he does this free of charge, what doctor do you know would do that. So I don't see what would hurt for you to do this especially with as frustrated and wit ends as you sound with doctors (which you will see is many of us here). Dr S will tell you the truth what he thinks and wont lead you down a path that isnt the right one I believe.

I tried getting into Mayo to see Dr Mokri and that was a joke, not only the time to wait to see him but so many other issues I definitely found out that Mayo was not the route for me, but that is something you would need to figure out for yourself.

I wish you the best, and like I said I am interested to see how you feel with your EBP you had. If you are interested in the address for DR S let me know and I will PM you what you need.

Take care - Kim

[burk]

HI, Thanks for your response. today is not good. got up and posterior head ache is bad. Just took a pain pill so will see with that. Yes, think I need to go with Dr. S. Please send me his information. Today I will start getting ALL medical records and films together. thanks! The nasal headaches are not new and have been shrugged off due to ignoring the fact it could be a factor with this. As you can tell I have been trying to play doctor. I have to stop guessing. I am not a doctor and do not want to be one!

[wobbles]

Hi:
For what it's worth...I agree that you are probably a spinal leaker. The most common area for spinal leaks is the thoracic spine. Sometimes the EBP will help even though it is placed in the lumbar spine just from the temporary increase in pressure; but it will not usually heal a thoracic leak permanently- for that you need a targeted thoracic patch. So your first order of business is to have a full spine imaging done. Take my advise and just go to Cedars...their imaging know-how is superior to other facilities and they are much more likely to discover your leak. Save yourself LPs that don't find your leak....get it done at Cedars!

As for your friend doing the Beta 2 transferin test for CSF. I'd be very surprised if he can do it at his lab - I was told that only 2 labs did in in the US...Mayo and one in LA......He may be thinking about checking for glucose which is the "old" test. It is unreliable as an indicator for CSF. Actually I wouldn't worry about whether your dripping is CSF or not....unless there is a HUGE amount of fluid leaking ALL the time a cranial leak is not causing your HA symptoms (per Dr S...HA = spinal leak).

Good luck in your journey!

wobbles

[Sally Girl]

Lila, good advice from Wobbles. It was great talking to you, and I wish you the very best! Something I forgot to tell you, what your doctor in "S" told me.

They didn't "believe in" pain meds because animal studies showed that taking pain meds isn't helpful.

And I thought, is that the best argument you can give for not "believing in" pain meds???

He didn't offer to inject or burn any of Anna's nerves! He said he had nothing to offer...what an appointment it was.

Cheryl

[burk]

Great advice! I am going to take it! will start w/ sending med records to Dr. S. Another symptom question.. is there any correlation between eating a fatty type meal and getting some relief? I don think I can wear a abdominal binder as i cannot wear tight fitting clothing as this causes increased pressure type headaches. Does this mean anything in the leaker world? none of this things are new for me. just trying to get any and all info trying to decide if i am partially nuts or not. thank you! today went better after pain meds. able to work 1/2 day-but took it very easy, will work 1/2 day again tomorrow. thanks for the support! I am clinging to each and every one of you!!

[burk]

forgot to ask....is there any correlation w/ massages, chiro or natural alternatives such as adjustments to the thoracic area as I have had these in the past to sorta "put back into place" type treatments. could I have worn something done to cause the leak? I have tried all natural alternatives as well, oils and you name it.

[LauraL840]

There is ONE (only one at this point) article where it's documented that a chiropractor caused a spinal leak when manipulating the spine. So it's "possible". I suspect that something more was going on in that patient that increased the risks of that person developing a leak and that the chiro was just the straw that broke the camel's back!

So, to answer your question ... there is a very limited correlation between chiro and leaks.

I know you feel frustrated with your condition and having directed much of your medical care ... and this is a great board for support and advice and getting knowledge and direction. But be careful to use this information and advice in conjunction with a doctor! In an earlier post you said "I am in need of direction. I am at the point of having some one tell me what to do and I will do it and it appears that that person is going to be you, this site. so please let me have it." I think it's safe to say that most EVERYONE here understands your level of desperation and frustration to get better. However that 'desperation' can lead people to believe in almost anything or anyone that gives them hope! I think going to Dr. Schievink and allowing him to set the navigation for your care is wise. He knows what he's doing ... he's been doing it for a LONG time with a fairly significant success rate. But keep in mind, none of us are doctors! :) We can all tell you our experiences and what we decided to do and how that went and what we'd do again and what we'd skip and what worked for us and what didn't and what was a huge waste of time ... but we can't tell you what will 'fix' YOU!

I hope you don't think I'm dashing hopes or anything ... I've just KEENLY felt your frustration and desperation myself and would have done ANYTHING to make my husband better. I'm just glad 'anything' wasn't available to us! And even now I can look back on the week he was hospitalized here in NC and what his first docs at UNC were willing to do to him and am somewhat appalled at the direction they took his 'care'.

I hope that you're able to get some improvement from this last blood patch! Remember, just because you don't get immediate improvement doesn't mean you won't get further improvement! Sometimes it takes a couple of weeks for the full effects of the blood patch to take place.

[burk]

Thank you, Laura. I needed that. My huge concern if financial as well. I am sure you can all relate to that. However. This week I have been pursuing another job opportunity that wil increase my benefits and sick time so I can postition myself for a lengthy recoup time as well as cover the costs. Just a few minutes ago i recieved a call and an offer to work with our state dept. I of course accepted and feel that with this last blood patch it will buy me some time to get those much needed insurance coverages as well as short and long term disability as you know I can no longer get it on my own-they would certainly put a rider on me. I hope this patch holds, have faith that it will and then I will plan for some sort of treatment as my curtain job does not have sick time available. My husband is disabled due to a MVA and if I go down my family goes down and I cannot let that happen but I cant let my health continue to go either! I am in the process of contacting Dr. S. I believe I could have the imaging her in my state then send to him...what do you think. but dont you think I should wait until I am fully symptomatic again?? or do it now??? the inital part of contacting him is in process. I will no longer seek medical attention without direction from him. yes it is too scary not a smart thing to do. thank you! do the symptoms that I wrote about earlier mean anything or possibly related to this or am I just reaching. I have read that cafiene is helpful and when I ear fatty meals (mcdonalds etc) I usually have coke so is it the caffiene that helps or the fatty foods. Just wondering!!!!

[LauraL840]

If the patch is working and you are symptom-free (completely) then you aren't leaking and imaging would be a waste (time and money).

If you're going to contact Dr. S, then I'd wait and see what he presents you with. He might think of things that no one here would. I do know that he's fine with you having imaging done where you are and sending it to him to review. We've done that many times and he's accepted those studies and not had us repeat them when we went out there for treatment.

Caffeine can be helpful for some (but not all) leakers. I don't know and haven't read anything about high fat meals ... wouldn't see 'how' that would help.

If you can go searching back through this forum and read posts about restrictions following epidural blood patching ... you should follow ALL restrictions diligently, however ridiculously overboard they may seem to you! That you get relief with EBP is greatly in your favor for healing without further intervention!

[Sally Girl]

I have read migraine forums for years. Some migrainuers feel better if they eat a really fatty meal. The theory on that is because it takes so much of your body's resources to digest the meal, the focus is on the stomach, rather than the head. It's like the blood, energy, whatever--needs to go "down to the stomach" to do a job there.

I haven't a clue if there is any "science" to this. It is just speculation on the part of migraineurs, that I have read over the years.

Cheryl

[wobbles]

RE: having the imaging done at home vs Cedars...wait and ask Dr S.....for some reason he did NOT want me to have the myelograms done here in Fresno, even though he has let others send him studies......When I asked him why he insisted that I have them done at Cedars he told me that they have a better track record for identifying the leaks. One thing for sure...Cedars does a myelogram much differently than any I have had done in Fresno. None of them here ever showed my back full of cysts...not myelograms...not MRIs...not cisternograms...no imaging EVER showed them! Hard to imagine considering how many of them there are...and how BIG some of them are. At any rate...wait and see what the expert, DR S, recommends before you decide what and where to get imaging.

good luck with all of this....healing is possible!
wobbles

[burk]

thank you for the heads up. I spoke w/ Dr. S's assistant and all is in the works. I will definetly take your advice and his! I would rather have any tests that will be right the first time and no more false readings by yahoos who dont know what they are looking for! thanks again!

[dagaz]

Welcome..
More often than not, people with certain conditions will acquire more knowledge about the condition, one by living with it and two speaking with others with the same condition.
My leak started after a brain surgery gone wrong, besides my leak I ended up with DI= diabetes insipidus... most nurses want to test my sugar... and to add to it some Dr.'s haven't heard of it.
I have had 16 brain surgeries including my initial tumor removal, and have been given no hope.
I hope your case is different.
For your headaches try laying flat and see if it helps... your head must be flat as well...

Good Luck

dagaz