Leak Symptoms/Treatment Discussion

[BOBinFLA]

Note: It seems the new replies I’ve started getting to my post ( My Mayo surgery – The Details) have gotten more universal in nature. I thought I should repost Laura’s last reply and my last reply as a whole new thread. Your observations and thoughts are always appreciated. My wife helped to write my reply to Laura so I need to acknowledge her invaluable input. So yes, this is basically a repeat. Hope I'm doing this right.

Bob,

You may be correct that b/c you leaked for 3 years and have enhancement that it may take time for the HA to go away, however I cannot help but make the following point and observation.

Point - If you still have HA and ear ringing, you still leak. This is according to Dr. Schievink and other doctors who treat this.

Observation - DH leaked for 20 months before his surgical repair. He woke up HA-free, completely HA free.


I think if you're still experiencing ANY HA that resembles low-pressure and other leak symptoms, you are still leaking. I really really really don't want to be right in my opinion, but the research shows that sealed leaks mean HA-free patients.

If you continue to improve, then it's possible that his repair has given you significant but not complete healing. This means you could now be a slow-leaker, intermittent leaker, or even just seep fluid. If you 'stabilize' or level off and do not improve in your symptoms, you are probably as 'good' as you're going to get with that treatment. Please don't get me wrong, I DO NOT want to needlessly bring anyone down. My opinion is based strictly on what we have experienced and what we have read about leaks. There always will be leakers who experience healing vastly different from what is considered 'the norm'. I just think you all should be prepared that you've made an extremely important STEP towards healing and that there may be other steps you have to take before this is completely behind you! The disappointment that follows an 'incomplete' treatment or procedure is devastating to all involved. Believe me when I say that we have lived through that devastation and only barely survived! :(

- Laura

Reply:
Laura

You have been a great, committed contributor to this CSF leaker forum. You have helped all of us understand this condition as if you were a medical professional or doctor yourself. And I sure do hope in this case you are wrong.

As per Dr. Schievinck's papers this condition was first recognized in 1994. Relatively new in the field of Medicine, and I hope the field will be learning new things every day. As you know I saw Dr. Schievinck myself in March of 2007 and in spite of heroic efforts on his part he could not find my leak. I had all the signs and symptoms of a CSF leak including enhancement of the pachymeningies with sparing of the leptomeningies, engorgement of the suprasellar cisturns and pituitary, an opening pressure of zero with a postural headache. Dr. Schievink also hospitalized me for 4 days and infused normal saline into my spine, my HA did not completely resolve with this either. He said he had never come across a case like mine where he could not find the leak. At the time it was hard for me and my wife to stay in LA for a continued workup that was going nowhere.

As you may know Dr. Schievink studied under Dr. Mokri at the Mayo Clinic. At any rate, I think that both Dr. Mokri and Schievink would agree that the Medical Field is still on the learning curve with this disease and although Dr. Schievink, has the most extensive medical publications on the subject his sample size is still relatively small. When we were there he had taken care of about 200 leakers. Perhaps that has doubled by now.

My MRI showed enhancement and engorgement for 3 years. Even when I had any of my 7 blood patches my HA level never went below a 2. It seems reasonable to me that it may take time for this chronic inflammation to resolve. Hopefully this tissue will not become fibrosed and then become meningeal fibrosis. Then even if my leak is fixed I will probably have a HA for the rest of my life.

The good thing is that I do feel different. The nature of my HA has changed and my chronic fatigue is improving every day. The paper you posted by Dr. Mokri regarding intracranial hypertension after repair of a leak, clearly stated that we have a lot to learn about the after effects of fixing a leak. That CSF dynamics (production, absorption) may be different in different individuals.

I must say, that I am grateful to have you thinking of everything you can regarding my condition and I will keep you posted to get your insights. Hopefully, my case will be the exception to the rule, if Dr Schievink is right, that is, if you still have a HA you are still leaking.

The good thing is that Deb and I can drive 4 hours up the road to Mayo for continued care and do not have to truck across the country to Cedar Sinai. As you know, this is quite an excursion for a leaker. I think I laid on the floor in the airport several times. The plane ride and pressure changes wiped me out. Dr. Cheshire the neurologist at Mayo Jacksonville was quite interested in intracranial hypotension and even expressed an interest in reading in our forum.

Well Laura, I hope DH is improving. I will keep you informed on my progress and for now am trying to maintain an attitude of cautious optimism.

Bob

[vini]

hi bob

thanks for posting a idea,s on treatment thread the device I describe below, would I feel control pressure and maintain pressure at therapeutic high / low or healthy levels , the volume of fluid in our body's is small so such a device could also be small and with technology moving fast and this being such a new field, in the right hands could such a device be developed.


with 30 years in the fire sprinkler industry I know a bit about fluid dynamics so as an engineer faced with pressure fluctuation with in a closed system such as the skull and spine which are constructed of bone that has no expansion property s with its pressure relief valve consisting of a membrane with a set aspiration rate eg non return valve and filter with a set mesh orifices on the outlet side of the system.

On the intake side we have the choroid plexus the manufacturing plant and pump now normally the pump would cut in and cut out on demand by means of a pressure switches sensing high and low pressure as set by the aspiration rate and thus maintaining normal positive pressure at a set value above the ambient blood pressure to maintain the blood brain barrier

transversely from an engineering point of view the choroid plexus, pump could run at a constant flow, the pressure maintained by the aspiration rate by increasing and decreasing the mesh orifice to allow spent CSF to pass to drain thus maintaining system pressure that way or a bit of both ( a pressure relief valve )

fluid dynamics what is pressure = compression of a liquid or gas

measurement PSI KPA bar millibar feet head ect

method fluid compress increase pressure/ expand decrease pressure
increase volume increase pressure/ decrease volume decrease pressure in a restricted flow pressure vessel

constants
pressure vessel bladder/ lining is confined by a structure of greater in tensile strength than the force exerted from within

variables effecting constant pressure
supply and demand
ambient air pressure / blood pressure
ambient temperature /blood temperature
leak

an engineering solution to stabilize pressure would be to to fit an expansion chamber and pressure relief valve the expansion chamber is a vessel that contains a diaphragm when pressure is to high a piston will allow it to expand thus reducing pressure if low pressure is detected the piston compresses the diaphragm increasing the pressure thus maintaining a steady pressure within the system without loss of volume regardless of supply and demand the pressure relief valve only operating when parameters are exceeded so minimal loss of fluid

a leak in the system

this will cause havoc with the pressure in the system the pump will be starting and stopping or running all the time the aspiration rate will be increasing and decreasing the mesh orifice size as pressure is gained and loss,d
the leak is fixed all the settings are wrong, high pressure in the system
I hope that on the horizon there is a expansion chamber and pressure relief valve being developed by a medical team with the technology moving fast with medical implant technology sorry if this seems to over simplify things but its just how i think

kind regards Vini

[wobbles]

vini:
Phew...think I got most of that.....maybe you are the one who's supposed to develop the devise? Maybe that is the higher purpose for your leak? Maybe you need to put the idea forward to one of the large teaching hospitals like Mayo or even Dr S? Maybe they never thought of developing such a devise.....just a thought.......

keep up the good ideas...we can use all the help we can get!

wobbs

[Tamaretta]

Our neurologist bought a fighter pilot suit hoping to improve Tay's intracranial pressure (to improve Tay's quality of life NOT fix leaks!!!) but Taylor was too skinny for the suit, i.e. no compression of the limbs......

[vini]

thanks all

I have this much clearer in my mind I am adapting concept to to address the leaking, low / high CSF pressure under production , over production and fluctuating production, whilst incorporating a circulatory reservoir that dose not alter pressure also diaphragms, operating by means of solenoids control, power sensory , systems , mechanics and theory hope to post schematics, but may take me a short while , Monday evening UK time, then we can see if its medically feasible fund able god willing

vini :confused:

[Concerned Gal]

way over my head at this time of night.... :D

But great work.

On weird treatments (fighter pilot suit is a new one :eek:) has anyone ever thought of hyperbaric chamber. It seems to have a good rap for getting your body full of oxygen to increase healing properties. Just thinking about it over the last year or so and not sure if I ever mentioned it.

[vini]

hi CG all

I think the the doctors ,were trying to increase taylors CSF pressure by compressing the limbs to raise blood pressure and pressure on the connective tissue / blood pressure ,thus raising CSF pressure, the negative G suite is used to stop pilot black outs at supper sonic speeds, were the blood rushes from there heads ,I cant see how it would work as it would also raise cranial blood pressure

Vini :confused:

[Tamaretta]

We were going to try the HO Chamber way back when Taylor had Lyme's disease but she improved on IV Rocephin. When we found her leaks at the hospital in 2005, they had one in the Wound Care Center in the same hospital but my insurance wouldn't pay (again) and the doc in charge of the Wound Care wouldn't approve it because we didn't have any "documentation" that it would help, despite the numerous attempts by my pedi neuro. I recently looked into it again when she wasn't leaking just a mere 3 weeks ago (ha!) desperate for SOMETHING to help (before the Hurricane). There is one (or was one) in Clear Lake (about an hour away) that is not attached to a hospital and will take anyone if they have the $$ AND will allow one person (such as parent) to go with one paid patient; however, Clear Lake was hit pretty hard from Hurricane Ike. We will do the triple high volume blood patch first and go from there.

[LauraL840]

I too, looked at HO, couldn't find a doc worth their salt to comment on it. If I recall, I asked Dr. S about it, but I don't think he thought it very favorable, may have been something about the pressure and how it affects the leak?