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4 months in bed, I can honestly say I am unsure of my future. I need a REAL doc. I now have constant cycles of high pressure,followed by leaks through my nose. Doc finally gave me Diamox a few months ago…but there has been little if any change. In Sept. after i thought i was dying,had very high fever,could barely move my neck & hubby swears i was having seizures(especially in my sleep) I was convinced I had meningitis, called the doc & he ran a CBC- his nurse called me 2 days later & said it was normal …this went on for nearly a month until i decided to get antibiotics from a relative…sure enough after about 4 days on them i felt a whole lot better, then i log in online to view the test results & my white count was very high. I was def worried at this point..I requested a CT myelogram to find the leaks(plural) & doc. refused saying they were unreliable & they already confirmed the one through my nose, I’m convinced i have more. Had another appt. on Dec. 1st. Doc says to me I know how you feel.. after my last appt. HE started having really bad headaches & via CT MYELOGRAM it was confirmed he had a leak also..i say great let’s order the test so i can possibly get on with my life…he agrees & tells me he will email the instructions in a week or two. 3 weeks go by, NO EMAIL. I call the office & get nowhere,then get an email shortly after that says he’s not comfortable ordering it yet for another 4-5 months due to it’s inaccuracy & COST….OMG I email back & said let my insurance co. worry about the cost…please order the test ASAP. no response…. this should be illegal!!!!!!!
chiari 5-6, csf leaks,Intercranial hypertension/hypotension,swollen optic discs,dermatographia, vit d deficiency, POTS, & constant pain.
4 months in bed, I can honestly say I am unsure of my future. I need a REAL doc. I now have constant cycles of high pressure,followed by leaks through my nose. Doc finally gave me Diamox a few months ago…but there has been little if any change. In Sept. after i thought i was dying,had very high fever,could barely move my neck & hubby swears i was having seizures(especially in my sleep) I was convinced I had meningitis, called the doc & he ran a CBC- his nurse called me 2 days later & said it was normal …this went on for nearly a month until i decided to get antibiotics from a relative…sure enough after about 4 days on them i felt a whole lot better, then i log in online to view the test results & my white count was very high. I was def worried at this point..I requested a CT myelogram to find the leaks(plural) & doc. refused saying they were unreliable & they already confirmed the one through my nose, I’m convinced i have more. Had another appt. on Dec. 1st. Doc says to me I know how you feel.. after my last appt. HE started having really bad headaches & via CT MYELOGRAM it was confirmed he had a leak also..i say great let’s order the test so i can possibly get on with my life…he agrees & tells me he will email the instructions in a week or two. 3 weeks go by, NO EMAIL. I call the office & get nowhere,then get an email shortly after that says he’s not comfortable ordering it yet for another 4-5 months due to it’s inaccuracy & COST….OMG I email back & said let my insurance co. worry about the cost…please order the test ASAP. no response…. this should be illegal!!!!!!!
Oh, Hon, I’m so sorry this is happening to you. You need something positive to happen FOR SURE. You are right. You need a “real doctor”. It is possible that you have a leak because your pressure was high enough to form a hole so the fluid had a place to go! Personally, I suffer from high ICP (and it sounds like you may, also). If so, the doctors may decide NOT to seal the leak(s). But you DO need someone to help you. There are a cluster of EDS docs in the Baltimore/D.C. area. I know of a patient with at least 5 leaks who is seeing Dr. Daniele Rigamonti at John Hopkins. Perhaps he can help?Meanwhile, are you taking an mast cell medications? I think it is worth discussing that with your doctor, my friend. We are seeing such a huge link between external communicating hydrocephalus and mast cell disorders, that it may just be the “shot in the arm” you need to get over this hump.
Please keep us posted as to how you are doing and feeling, OK? You are not alone, FOR SURE. The world is just realizing how much we struggle with this condition. But answers are coming! Did your doctor order a beta 2 transferrin test for your suspected CSF leak? And I agree. It’s time to do some doctor shopping!
Big hug,
Hang in there – we’re with you,
🙂 Dianachiari 5-6, csf leaks,Intercranial hypertension/hypotension,swollen optic discs,dermatographia, vit d deficiency, POTS, & constant pain.
I thought I was finally over my yr long HELL. I’m def positive i have high ICP…. I took 2 weeks off of work & did not leave my bed(other than the bathroom)did everything it says to do for a leak. drank lots of water & caffeine, then on the 5th day it felt like my eye balls were gonna pop outta my head every time i sat up. SOOOOO I started back on the diamox, slowly at first 125mg 3 times a day,felt a little better, increased to 5 times a day, better yet. back to work i go :)…..later the same day I was getting out of my car & happened to drop a 20$ bill & of course it was windy, I ran after it …..maybe 20 feet. on the way back to the car my head started pounding in the back & sure enough within about an hr all those lovely symptoms came back…my nose is now leaking again. Oh yeah Dr. Diana ..the masto stuff…I’ve been on atarax 4x per day,for about 22 yrs. now for dermatographia. also I printed out the Driscoll theory to take with me, doc said he didn’t have time to look at it(right now) & commented “that’s the problem these days, people play doctor via the internet” He looked at me(guess the look on my face said it all, he said you don’t agree? I said well doc,i’ve had 18 ANA,9 hiv antibody(no i don’t have risky behavior),countless CBC & other basic blood tests, never to find anything in my blood, although i suggested i had high ICP w/leaks at 8 previous appts. starting many years ago, it wasn’t until I started research on the INTERNET did i get anywhere. silence….and of course a little smirk from me :p think i’m gonna put my daughter through med school, what’s a few more years….LOL.
Hi dawnrulust,
Good for you! We are the captains of our own ships, and no doctor can know everything. We must gather information, and use it as we think it pertains to us. One of my favorite videos is the Ted-talk from e-patient Dave. I’ll put it on my site — will you pop on and watch it? It is QUITE motivating! Social media and internet research changed his life. (And has no one ever watched Lorenzo’s Oil???!!!) Ha. Hang tough, my friend, you got this one. Don’t forget a mast cell stabilizer (ask your doctor about Cromolyn sodium, OK?). big hug, Diana
dawnrulost,
Good job at holding your own! If you can’t find a reasonable doctor, I could PM you the list of low dose naltrexone doctors in your State. You would have to call and confirm that they understand your condition and have the expertise to treat you, but at least you could be reasonably assured that they are capable of thinking outside the box, and are used to patients that have had the run around with doctors who don’t respect them.
I am new to this and any forum. This post regarding csf leaks reminds me of myself. My Canadian, BC and Seattle Washington doctors have advised me to learn to cope with my symptoms but do not have any help to offer. I do not have any medications or suggestions other than look for help to cope.
I do not have a diagnosis but have every symptom of CSF Ottohrea and a family history of connective tissue disorder, and ascending thoracic aortic aneurysm. My face is swollen on the side that weeps fluid near my ear but also on my cheek and chin and one side of my forehead and all over my scalp. I have symptoms of POTS or some kind of autonomic problem. It’s very frustrating. I can not even get a doctor to look for a leak even knowing I have had two epidurals during caesarian sections.
We can not get the beta transferrin test here. The eye doctor even remarked that i have unusual fluid in my eyes! I think I’ve always had high intracranial pressure. I have tortuous blood vessels in my neck and large hepatic hemangioma. My neck is always stiff. I frequently have facial and body spasms. Apparently no chiari herniation on mri. My shoulders are always extremely tense. And I’m a very calm reasonable 53 year old woman.
I have three children with various skeletal problems of scoliosis and kyphosis and fatigue, heavy head feelings are familiar in this family. Any help to at least get the test to locate a leak would be appreciated. Thank you to Dr. Diana for your support!I am new to this and any forum. This post regarding csf leaks reminds me of myself. My Canadian, BC and Seattle Washington doctors have advised me to learn to cope with my symptoms but do not have any help to offer. I do not have any medications or suggestions other than look for help to cope.
Is it just me? I equate “learning to cope” with “giving up”. No, there are medical explanations for our illnesses, I have no doubt. Amina, could no one in Seattle get you some Diamox to try? If you have no contraindications (like sulpha allergy), it would seem to be such a low cost/low risk option for you that may give you some well-deserved relief! Doctors prescribe it routinely for going into high altitudes. Sometimes the medical profession can be incredibly frustrating. Been there. Got the T-shirt! Cope — Schmope. We need answers! Dog-gone-it!!! Working on it!
Hi Diana
I am not sure if this is the place to reply to your post. Hopefully it is. The Seattle doctor offered psychiatric, internal medicine and rheumatology consults. No diamox or help with the intense pressure in my ears and head. No testing for csf leaks and no answers for all the facial and scalp swelling, not to mention the POTS symptoms. In BC my many consults have not added any information to help me. I can’t believe this all started with a dermatology consult 10 years ago. Back when I could function. I suppose I’ve always dealt with symptoms but was able to brush them off or thought it was ‘normal’. I hope the neurosurgeon can help but have no idea if I will get to see him. Yes I could use some positive and if diamox helps I would try it even with a sulpha allergy. I’ve read the allergy to sulpha as antibiotic differs from Diamox.
Thank you for the cheerful support.Hi Diana
I am not sure if this is the place to reply to your post. Hopefully it is. The Seattle doctor offered psychiatric, internal medicine and rheumatology consults. No diamox or help with the intense pressure in my ears and head. No testing for csf leaks and no answers for all the facial and scalp swelling, not to mention the POTS symptoms. In BC my many consults have not added any information to help me. I can’t believe this all started with a dermatology consult 10 years ago. Back when I could function. I suppose I’ve always dealt with symptoms but was able to brush them off or thought it was ‘normal’. I hope the neurosurgeon can help but have no idea if I will get to see him. Yes I could use some positive and if diamox helps I would try it even with a sulpha allergy. I’ve read the allergy to sulpha as antibiotic differs from Diamox.
Thank you for the cheerful support.Smarty! Yes, most people don’t end up having an issue with sulpha… Idea! Here is a blogger with pointers on asking for Diamox: http://slingsandarrowsofoutrageousfortune.wordpress.com/2012/12/20/diamox-pointers/ I hope that helps! Hang in, Hon…
Praying that this helps me! Just got a trial of Diamox! Had an appt with my GPs locum. He listened to my poor description of what I see as the trouble and said yes to diamox! I hope this is just the beginning of a semblance of health.:) will try a low dose which means chopping up the 250 mg tabs into quarters!
Praying that this helps me! Just got a trial of Diamox! Had an appt with my GPs locum. He listened to my poor description of what I see as the trouble and said yes to diamox! I hope this is just the beginning of a semblance of health.:) will try a low dose which means chopping up the 250 mg tabs into quarters!
Hi Amina! Exciting! Hon, If you have symptoms of hydrocephalus and your docotr has given you the OK, be sure to make your evening dose count! We “drain” poorly when we lie down — that is when our pressure can be at its highest. Let us know! And be sure to stay alkaline! 😉
First dose of diamox 62.5mg and tripled it at bedtime. I know it doesn’t repair the cranial csf leaks or locate them but if it relieves the intense pressure maybe they will heal. Then i will perhaps have more wrinkles on my face. One doc told me “its as if you have natural Botox”. My face is that stretched with fluid. I feel it against my eardrums. What is it with excess fluid? Never where we want it!:) thanks for the input! I feel blessed to have hope today!
Where will the csf fluid go if the leaks heal and I have cranialcervical instability? I think I do. My raw data, MRI just arrived.I printed out the Driscoll theory to take with me, doc said he didn’t have time to look at it(right now) & commented “that’s the problem these days, people play doctor via the internet” He looked at me(guess the look on my face said it all, he said you don’t agree? I said well doc,i’ve had 18 ANA,9 hiv antibody(no i don’t have risky behavior),countless CBC & other basic blood tests, never to find anything in my blood, although i suggested i had high ICP w/leaks at 8 previous appts. starting many years ago, it wasn’t until I started research on the INTERNET did i get anywhere. silence….and of course a little smirk from me :p think i’m gonna put my daughter through med school, what’s a few more years….LOL.
LOL! here here, well done girl!
For some reason, with SOME doctors, they forget that many illnesses are still a puzzle. By banding together on social media, and by studying rare diseases together, we can learn a great deal. To shrug that off is not smart! Just ask E-patient Dave, whose doctor RECOMMENDED social media for his rare form of cancer. He was able to get help that his doctor wasn’t able to find, and the brand new treatment cured him! Here is his TED talk! http://youtu.be/oTxvic-NnAM Stay strong, my friend. 😉 Diana
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