After MRI with contrast of brain, cervical, thorasic, and lumbar my csf leak was not detected. From what I am reading this is pretty normal not to find the leak. I was dx with intracranial hypotension a week ago after suffering headaches for 5 weeks and being put through chronic migraine treatment torture. I did a nerve block, IV treatments at home, several IM medicaitons, oral meds, several trips to the ER and nothing was helping. Finally my Dr. ordered the Lumbar Puncture and there realized the pressure was so low. I am on bedrest for now and IV fluids at home for the next 7 days and advised drink a lot of fluids. My Dr. said if not better by Tuesday they will attempt a blood patch even though they don't know where the leak is. I am hesitant with that and looking for advise from those that have been through this. Symptoms I have had over the past month are the headache of course that sometimes just 1 side sometimes both mostly feels like a lot of pressure, jaw pain pressure, numbness in my face/cheek, a lot of recent pressure around the bridge of my nose. I have numbness down my legs, feet, hips, and especially my toes, heels and knees. I hear ringing and popping/tapping noise in my head/ear all the time. If I remain in bed my pain is 1/2 but after sitting up for 20-30 minutues is starts to rise and within an hour easily I can be at a 10. I hope this all sounds a like for you all and that my dr. really is on the right path. She stated yesterday my brain MRI looks normal just kept stating no leak. Any suggestions, comments would be appreciated. Thanks, Michelle from Ohio
Oh Michelle,
These are my EXACT same symptoms from a year ago. It is touture. I am going out today (I got better!) but I know how badly I needed to message someone who knew what it felt like. If you would like to contact me, I can share what I did and what worked and what didn't, I tried everything.
I hope you feel better soon ❤
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Hi Michelle,
The illness I had was called spontanious hypo tension of the brain. I had holes in my spinal column which allowed my spinal fluid to slowly run out. This caused many many problems. I had about 5 blood patches until it finally worked.
Headaches: I had numerous nasty headaches. I was prescribed a middle of the road headache medication called Tramadol which helped somewhat, though there are more powerful medications, check with your doctor. Csf leaks are many times very hard to find. The headaches, numbness and pressure could be caused by the lack of spinal fluid you have which effects the function of the brain. One of my symptoms was a loss of motors skills. This greatly effected my speach, my ability to walk and also caused drooling. I am no doctor but it sounds like to relieve your symptoms you will have to have a blood patch. I won't lie, they can be unpleasent to say the least. This illness is extremely rare and usually takes a fairly good amount of time to solve.
On the bright side though I made it through after about six years of numerous surgeries, blood patches and more MRI's than I can remember. You will know if your fluid runs really low because you will get even more symptoms however this in a way is good because it will confirm that you do infact have a leak.
Please feel free to contact me with any questions you may have. I made it threw and so can you.
All the best,
Michael
I guess I just don't understand where they would insert the blood patch if they don't know where the leak is. I guess just pick a spot in the spine and hope it travels to the leak and wish for the best. I am looking at getting a second opinion as well I just want to get another set of eyes on my MRI's as well. Have you done IV fluid at home? My doctor is giving me 1 liter a day at home now and also pushing me to drink as much as possible too.
Hi Michelle,
my expeirences with blood patches is this. They insert a neddle into your spinal column, (lower back) filled with your own blood. It can be very painful but other people don't have much of a problem with it. I had this done in an out patient surgery room. First the blood patch was put in and then later I had saline put in to sustitute for the lack of fluid. After the proceedure I had to go the recovery room and lie flat for about an hour and half or two. This is to keep you from getting a severe headache. MRI 's are by no means perfect in finding leaks.
Blood patches are also by no means perfect. There is also a sythetic patch that you may want to keep in mind if the blood patchs continues not to work. The blood patch in therory "SHOULD"patch the hole or holes but again it is far from a perfect process.
No I've never had IV fluid at home but the many visits I made to different hospitals I most times had IV fluid.
The best way to tackle this illness is this. 1. Keep asking questions! Again this is a rare problem and it was my experience that most doctors have little or no knowledge on this matter. Get a second and third and possible a forth opinion. I even went to the Mayo Clinic and thought that they would have all the answers, they were clueless as most others were. The most important thing is this. Tackle one problem at a time. There are so many problems with an illness like this that it is easy to become overwehlmed. Again I made it threw. I'll spare you some of the more grusome horror stories. Also I hope you have a good support system so you can talk things out. Because this type of illness is rare it at times can make the patient feel isolated. Keep pushing and always remember that I came out of it better than ever. Even though it was a hell of a trip.
All the best, feel free to contact me,
Michael
Interesting, I always thought if there is an answer, the Mayo clinic would have it. Speaking of MRIs I have a MRI image of what I believe could possibly be CFS leak in my spine around C1 (I have a lot of strange unexplained neurological problems like tinnitus, photophobia, weakness, dizziness etc...)
Any thoughts or ideas guys and girls? This is a T1 sagital cut so *i think* it could either be fat or an actual leakage...
Hi OntarioDude,
The Mayo clinic was a bad joke. Do the same thing as every other hospital but expecting different results is insanity, The Mayo Clinic to a tee..........
You and your doctor may want to investigate this test further, it is called a Radionuclide Cisternogram. It may in fact be a much better way of finding leaks.
Michael
I have had this condition twice now, the latest being the last weekend in November... MR is not the best tool for finding the leak location but can tell where "pooling" occurs. Flouro-myelogram and ct-myelogram have found the locations of the dural leaks in my cases. The first one was pretty elusive and took a procedure that had never been used at that institution...dynamic ct-myelogram. So they placed the needle in fluoroscopy then wheeled me over to the ct, lit me up with contrast and started taking pics, that way they could see where it leaked out. This last weekend the neurorad was able to see it under flouroscopy after lumbar puncture with contrast. Anyway, if I can offer any insight let me know. It's no fun, but hang in there...
Thanks, if you don't mind what tests did they do and how much did they cost? I live in Canada so anything would be out of pocket and I'm just trying to figure out how much it would cost roughly...
Thanks Kurt. What kind of symptoms you were experiencing? Was the leak in your spine or brain?
I have a wide range of symptoms: muscle shaking, twitches, tingles, cramps, fatigue, light sensetivity, sound sensetivity, tinitus, rib cage pain, shortness of breath etc... so puzzled right now they don't fit any one typical common neuro disorder...
I started with a weak neck, heavy head feeling, then my head kind of goes numb...tingling all over, burning sensation in my tongue, hot and cold sensations mostly on my face, light headedness, muscle weakness on the fronts of my arms. Both times I've been treated it was pretty emergent and I was in critical neuro care at the university of utah so I wasn't up and about. Cost, not sure, we have very good insurance. The tests I had are all imaging, MR, CT, X-ray. The procedure that has fixed me up both times is hi volume blood patch. Both times the leak has been in middle spine...t6 to t8 the first time....t8 to t11 this time. Right now I'm on a good mend, hopefully back to work next week.
Hello Michael
Is it possible to get more info from you? Ive been bedridden with this and have been out of state three times, mylegrams , 6 lumbar punctures, tons of meds, mris , ct scans, 2 blood patches, ive lost my job, cant drive, lost my apartment. This started 10 months ago. Blottle support from my family because they think I'm crazy. Im broke because of this. I live in Florida and just saw a neurosurgeon out of town which my mother has said shes not driving me anywhere else, but this surgeon suggested two more blood patches with two weeks space but to do it where i live. Now my blood pressure is getting pretty low. Im worried about my health. Please share what ever you can with me. Id be happy to even give you my email address. Congrats on beating this nasty illness.
Michelle.
Thank you for posting this . Congrats . Id love to give you my email. Ive been bedridden 10 months. Tons of meds, mris, mylegrams, two blood patches. Going for another blood patch soon. Ive been to three states with little help. Drs shake their heads.ive lost my job, apartment and cant drive. My mother says were broke and no more driving places. I hope i can give you my email address.
Oh god. What a nightmare. I'll send you my email address and we can converse privately
I'm not sure how to send a private message. I'll give you my Facebook name if you want to private message me there?
Michelle Arlidge Bremner
Michelle
Thank you so much for responding. I dont havea. Fb page. Im going to see if I can try to private msg you on here.
I cant figure private msging on here either. Do you have twitter? brito_devin
Im in a red dress next to my husband....my profile pic
I found private msging. Click the envelope by my name. I sent you a private msg. 😀
Your symptoms match mine....did the blood patch help at all? Can I show your post to my neurosurgeon? I am in Ohio. I have literally been through hell since my brain surgery on Nov 25, 2013.
Would I be able to talk to you about everything that you went through?