To everyone suffering. I am a sufferer. I’m about to see a Neuro surgeon for cervical cfs leak. I have autoimmune. Getting tested for pots and ehlors danlos. I’m scared. Im a single mom with two kids. One sick child with rare autoimmune and my heart just goes out to all of you. We are a special breed. No one understands. I cry a lot. It’s hard but God has been so gracious to me. I love you all. I don’t feel you have to meet someone to love them. I believe people suffering are of the kindest I’ve met and most humble. So I love you all in Christ. Whether you believe in God or not there is something in me that God gave me and it’s an abundance of compassion and love. I know what suffering is. So to all of you and this sweet girl in the video I pray for all of you and hope your life is blessed and healing is in your future.
Oh wow! This video is still getting comments even now... over 3 years later! I am sorry that I haven't had time to keep up with this page or respond to all the comments here.... I will try to post an update video in the near future! Sending all of you who may be suffering from the same symptoms lots of love and support! Hang in there- and don't stop searching for answers!
For those suffering with POTS and corresponding upper neck/headaches and pain...it wouldn't hurt anything but your wallet to get a DMX motion X-ray done on your upper cervical spine. Instability at C1,C2 in your neck are frequently misdiagnosed, and causes many of the same symptoms as CSF leaks and POTS. A standard X-ray or MRI of the neck will not find it.
I think this video just saved my life. Your story is identical to mine except for the pots and having issues at childhood. I've had exact symptoms as you since I got my tonsils and adnoids removed. I have an appt Thursday with my ent dr to see if he can't run tests for csf leak. If not I will have Togo back to my neurologist and ask them to run the tests but at least now I can bring it up and run the tests. I've been depressed for a few weeks now with this tinnitus bothering me and the dizziness. Thank you for sharing , it's nice to know someone else has gone through it and to relate.
Ian Carroll I need help please .. I’m 100% sure that I have a csf leak somewhere in my spine ! I have all the symptoms ,ringing in ears mild headaches nausea blurred vision and a runny nose from the left side only . I’m so scared and now I feel like I’m getting the flu! I’m scared to death that it’s gonna affect my brain or cause meningitis please help
Thanks so much for sharing your story! Just got hopefully my last blood patch almost 2 weeks ago and started vlogging my recovery to hopefully spread awareness!
How many have you had. I had two to repair a post dural puncture headache and now I need another one. The hospital who caused all this mess is refusing to give me a third. I need help
thank you so much for this. I have a CT myelogram scheduled in the morning and have been so terrified I've already cancelled twice. Now, I'm praying I do have a CSF leak. For 7 years I've had what was diagnosed as daily migraines. This year I was diagnosed with Ehlers Danlos Syndrome and now I'm thinking these migraines may be due to Chiari, CCI or CSF leak. Thank you SO much for sharing your story. I feel very encouraged that there is hope after being bedridden the past year.
There is hope! Being bedridden is so hard because you start to question everything... I've been there. I hope they see something with your myelogram results... but even if they don't, ask for a second opinion to look for even the slightest thing that looks abnormal.
Kristin Garnell yes exactly! I've started to question EVERYTHING! Unfortunately I had to reschedule again. But am going to pursue this and really got hope again from hearing your story. Thanks so much Kristin
I love your message! I completely relate a million percent to your story, and I’m so grateful to you for sharing your story. Dr Carroll is the best! Brilliant and hilarious!
Thanks you sweet girl for sharing your story. I’m a 64 year old man and I’ve got a very similar story. Next week I’ll get my spine tapped for the first time and I’m anxiously waiting for the results.
Thank you so much for sharing your story! You are brave, strong and I’m sorry you have had to go through this pain and suffering. I’ve been going through much of what you have and an seeing a Dr O’Carrol in Southern California. I’m going in for a cysternogram on August 21st to diagnose a CSF leak. I’m nervous and scared because of the pain. I know I’ll get through it. I just want to feel better. I’ve had Lupus for 31 years so pain is not new, just old. It’s good to know there’s an end in sight for the headaches, nausea and overwhelming fatigue. Love and prayers for you.
Hi, I was diagnosed with pots a few months ago after having symptoms since April after having 4 hip surgeries. My worst symptom I have is a terrible headache that I have 24/7. I just had a myelogram done 2 weeks ago and found that I do have a csf leak and will be making a trip to CA soon hopefully to get treated.
Did you make the trip to Ca? By any chance did you see a Neuro surgeon at Cedars Sinai? I’m seeing a doctor there in a few weeks for cfs leak. I’m scared. His name is Dr. Shveink. I wondered how your trip turned out and who you saw and how you’re feeling?
I haven't been diagnosed yet, but for well over 2yrs I have all symptoms and passed out twice and had a seizure last year. It all started due to a car accident I was in. Where I live in Nova Scotia Canada the doctors haven't totally believed me including the one CSF leak specialist. I found out Dr. Schievink in LA does phone consultation. So I'm hoping he will help me cause I'm broke and almost 8 months bedridden. Thanks for sharing your story!
OMG this is my story .. 20+ years now of trying to figure out what is wrong with me. EDS/POTS/IBS/Fatigue/pain etc day in and out forever. I got an upright MRI and of course it came back negative for Chiari but it did indicate lots of stenosis and bone spurs in my deteriorating spine (EDS). I'm 42 and POTS has been ruining my life for years. This is the first time in a while I've felt any hope.. Like you it's been one "normal" lab after another for years. It wasn't until I literally passed out on a tilt table that anybody took me seriously and even then their answers are "here eat salt, good luck" .. I'm trying to get ahold of Dr. Carroll but so far no response, I'm so excited that I'm being impatient. Thank you for making this video. btw.. I only get occasional headaches but when I do they're pretty bad and posturally affected. Do you know of anybody with a story where headaches aren't so prominent? For me, POTS and fatigue are the most prominent symptoms. Also, I've talked to 100's of POTS patients and I haven't met many people who start the day POTS free and finish the day with full blown POTS (every day!). I also have lots of little things like sensitivity to sound, light, dizziness, feelings of swaying when I move my head certain ways, hormone imbalances (several neurological oddities).. so, I'm hopeful this will pan out for me. Any thoughts, advice, contacts, anything is welcome. Again, thank you for making this video. You're helping save people's lives and apparently so is Dr. Carroll.
Matthew Mackay email Dr Carrol. I can give you his email if you don't have it. He replied to me the other day. He gave me instructions to do a 48 hour lie flat test and studies to take to my neurologist and local doctors near me who can test for leaks.
Golden Carter yes, he responed to me with the same advise. Ive tried and been denied by several local neurologists so im having trouble finding any local help. I may have to go out of state which is expensive and prohibitive. I may try the 48 hour test first.
Hi Kristin! Thank you so much for sharing this story- this is seriously my story, too. I am undiagnosed, but just realized that I probably have EDS and a CSF leak, only my leak is cranial. I was wondering if we could possibly chat/email sometime, as I live in MI too and am trying to find a path to diagnoses. I am so tired of doctors brushing me off and I know in my gut I'm on the right track. Thanks again, and I hope you are doing well!
POTS can be secondary to so many things: Fibromyalgia, EDS (hypermobility), tethered cord, Chiari Malformation, Mast Cell Disorders, thyroid issues just to name a few. Lyme Disease as well must pe considered even though chronic lyme is not a recognized illness. Treating the root cause is the way to go.
I've been leaking for 3 years - totally bedridden in utter agony. I've literally lost everything. Dr. Carroll told me since he can't find my csf leak on an MRI, and because his 3 blind blood patches didn't work, that I will be bedridden the rest of my life. Totally devastated and full of despair. He said no one will patch me going forward so my PCP have up on me as well.
OMG how do I get to see him? I live in Vermont. Had neck surgery, many spinals, many whiplash’s and super flexible as a kid. After my pregnancy in 2006 has a spinal headache and never recovered. I became very symptomatic in July/August after vascular surgery (they did a another spinal). Now I possibly have POTs. My heart rate will spike as high as 202 (no heart condition). Diagnosed with migraines since forever ago. Going to Boston for autonomic testing. Beta blocker doesn’t really help. Went from running to having to lay flat. Did the doctors really lay flat test and that definitely helps. Had a cervical neck mri which showed bone Spurs, tumor and nerve sheath cyst. Also get pain and numbness in arm and legs that comes and goes. My head pain comes and goes and so does my energy. I literally will feel the battery drain. Exercise (running & yoga) are huge triggers. I’ve been take by ambulance for severe migraines from yoga and running. When I saw him and you on UA-cam I was like this is me!!! Please help!!!
I have only spent four weeks sitting and crying because of the pain. When I lay down I seam to be fine. I have been to the hospital once got meds and sent home. When I understood what was happening that when standing I was fine when laying I was fine .but sitting if I sit up to long my pain jumped from 4 to 10 in 5 secs. So I have been laying in bed everyday trying to walk around the house but even standing causes me to get dizzy and nauseated, with pain and pressure. I am waiting for and app for a MRI but tom I am going to the er again. Explain what is happening and hopefully get a patch done and get some relief. I watched your video and I am so happy that u finally got or relief .
Hi Kristin! I hope you are feeling fine by now! I was diagnosed with csf leak a year ago and had had 3 bloop patches. Now I can walk but I feel my head all the time and I can bend or pic something from the floor. My doctor tells me ist the recovery but my last bp was 4 month ago ... could you tell me if in your case was the same?
Hi Kristin ,thanks for sharing your story,I am glad that you are doing we now .my son diagnosed with CSF If you please tell me where were you treated and the name of dr
OMG for three months I've been bed bound feeling am dying from pain and those sharp head stabs in and out of ERs for nothing. Now am still bed bound but less pain basically have to be effortless physically and mentally not to have the headaches and nausea. Am having an abdominal binder with a tennis ball squeezed on the lumbar puncture site to help. Am praying for self recovery since no Dr is willing to patch me here! I don't know psychologically how long I can put up with this situation.
@@prathamrballal1229 POTS disappears as soon as the the leak heals, instantly. It's a compensation phenomena when the brain loses its fluid the heart compensates to pump up more blood to keep an equal brain volume.
Thanks so much for sharing your story! I have similiar symptoms, which all started after a whiplash/concussion injury that hasn't really improved over the last 18 months. I'm in so much pain and I've been unable to return to work! What kind of doctor would I need to see for one of these scans? Spinal surgeon?
Hey Kristin! I stumbled upon this video and this sounds exactly like me! Although I have t fainted, but I feel like I’m going to sometimes. Just curious as to what type of doctor is the doctor who decided to finally do a spinal tap? I’ve been trying to get a doctor to suggest that. Any info would be awesome, thanks!
I had a water like drip coming from my right nostril, about 1 oz every 10 minutes. I knew something was strange, as I was not congested and the left nostril was fine. This all started Nov.1st, 2018. I was seen by my ENT doc a few days later. After CT scan, MRI, Beta 2 transferrin fluid sample testing, and a sore painful nose, Dec 13th is my surgery date. I will be in surgery in less than 14 hours from now, scared and very nervous. My ENT doc did a nasal scope in the office and pretty much knew it was a CSF leak as soon as he saw bubbling at the base of my brain. Wish me luck folks! Gotta sleep now.
Update. I did have my surgery, had to have a total of 3 surgeries, 2 csf repairs and 1 lumbar drain placement. Was in the ICU for 15 days, lying flat, head of bed up only 30 degrees to eat. I had nausea, hallucinations from all the meds, and lost 17 pounds. Came home on Dec. 31st. No more dripping, yayyyyy!
Stella Artois - thank you for the initial info and update. How are you doing now? I'm pretty certain I have a csf leak. Now to convince my doctor to do appropriate tests.
@@687805 are you seeing an ENT specialist? I know this sounds crazy, but do you know anyone that has diabetes and tests their blood sugar? If your drainage tests positive for glucose, that is a sure sign of CSF leak. I hope you get well. I am doing much better, still dealing with nausea, but other than that, I'm good.
Did it started dripping when you positioned your head at certain angles or even when your head was in a normally straight position and it was still leaking ?
Hi Kristen, I just watched this entire video of your treatment of a CSF leak and am still reeling from what I just watched! I was diagnosed with pots last August and just last week was told by a neurologist that they think I have a spinal cord leak and want to do a blood patch. What caught my attention is you said you were from Michigan and so am I. I'm currently seeing a cardiac doctor at U of M Ann Arbor and was wondering if you have someone in our state that you have been dealing with. My current cardiac doctor doesn't want to do the patch because she doesn't think it's a leak. I'm desperate to try anything to get my life back but am scared to death to have someone mess with my spinal cord.
+Yvonne Fil unfortunately I didn't have any luck with doctors in MI(I'm from the UP) But if you think you have a leak.... I hope you can find a doc there that'll be willing to do a patch!
Thank you for this video Kristen. I believe I have a csf leak. I can recall numerous head traumas as a child, along with that came ringing in the ears or partial loss of hearing (changes constantly, also depends on sleeping position) constant headaches (also change with position and activity), neck pain and stiffness, my vision changes daily, constant drainage, constant runny nose, salty taste in my mouth from drainage etc. I need to convince my doctor to do some real tests in short order. Any tips? Thanks. I'm from a small town in Michigan also. No... not flint. It's not something in the water lol. I'm familiar with that line from the doctor "Oh, you're depressed." Well yeah, because I feel like shit everyday! The depression is just a symptom of a bigger problem! Dr- "well, nothing I can do for you if you won't accept my diagnosis." What! Called an uber to get yourself to surgery!? Wow! Good job! Glad you made it through despite the struggles.
Get to a bigger hospital. I do blame a lot of my years being mis-diagnosed from living in a small town.... and I am so blessed that I happened to be living so close to Stanford when I was finally diagnosed!
#1Lazer most of the doctors now are bs.. they don’t really care or listened what’s the real problem Of the patient.. they are too lazy to find, search, studies and the easiest way for them to diagnose you was to prescribed you an anti depressant!
I honestly don’t know what I have... i always feel dazed and get bouts of dizziness, I have really bad sinuses and have had three procedures, including one major surgery. I also feel really tired and have a lot of pressure in my eyes. I have really bad neck pain, mostly when I bend my neck. Back pain too but its very spontaneous and it’s usually more really bad tightness. I do have headaches too but I wouldnt say they are insane, I feel like they are tension headaches.
Hi Kristin, do you know of a way to get a hold of Dr. Carroll? I recently gave birth on Aug 29th where I received a traumatic epidural. I woke up the next day with a spinal headache and they did two blood patches to get me on my feet again. Now 3 month later, I am pretty much confined to my house and bed. I suffer from headaches, crippling neck pain, back pain, dizziness, ringing in the ears, as well as many other neurological symptoms. I am unable to care for my baby and I am desperate for help. I went to the hospital many times begging for another blood patch and they refused it to me saying it was a liability. I just need help, I want my life back so badly
Is it possible to have weak shaking legs during walking and have seizures with pots? Do you need a wheelchair? I'm not diagnosed with POTS, but I get very sick if I stay up too fast since I've been a teenager. My stomach goes crazy too. I have incontinence too and need diapers. It is so hard to walk and staying for a long time is very shaky, so I've bought a wheelchar! The only sure diagnostics by me are In the last lumbar vertebra I have an osteochondrosis and an ISG-blockade! Did you have a very long trip from doctor to doctor too? After the bladder infection and the Otitis in the Winter 2014 / 2015 I felt like I didn't get my old power back! After the summer with over 40 degrees Celsius my legs are weak all the time. If it's very hot they're feeling like there are ants and nails on top! In 2016 it startet with falling down on the floor!
Have you been checked for connective tissue disorders? Since that is one of the major things that can cause CSF leaks? Also you look exactly like me and my sister. The nasolabial folds, the lips, the eyes are slight asymmetry. But seriously when I look at you I see what people mean when they say I have something 'elvish' about me.
😵 sounds like my story... 😨 I had SVT. It had an ablation... But also still have Orthostatic Hypotension But also have a darn weird clunking in my neck c0-c3 somewhere... had an epidural last May that made me worse! And Every Doctor... just attacks the tension and depression... no diagnosis But no headaches really just crushing Occipital tension My tilt table failed only when they gave me Nitro Later in life Benzodiazepines made me worse after Tolerance set in
Robert Long -- I'm nearly bedbound with ME/CFS and am considering trying Klonopin, but am also aware of the risks. May I ask how many years it was before tolerance set it?
Kristin, I our stories are so similar it's scary. I was wondering if I could possibly personally reach out to you somehow? I was diagnosed with POTS ten years ago (when I was 16). I take midodrine and a beta-blocker for my heart. 6 months or so ago, I developed daily migraines to the point where I can barely function. I have been hospitalized, I've been to several doctors, been put on different meds, had a number of treatments- nothing has worked. I feel like I've been given a life sentence and I want my life back! I really think I could possibly have a CSF leak after watching this video. Is there any way I could somehow speak to you?
Hi Kristin, are you still doing alright? I live in sweden and been in the hospital for 5 weeks today. They´ve found that I´m leaking but don´t how much. I´ve done about 3 or 4 MRI´s and 2 bloodpatches.. but still feel awful. I´ve tried to get in contact with Dr IC but without result. Can you help me with his email? I´ve looking at your "story" every time I feel a little bit down..ThankYou
is csf leaks caused by surgical methods considered an illness/disease or just a csf leak? and will it go away forever (treated by graft and suturing) or?? also will the dura grow back? or must the patient rely on the graft permanently. thanks
Hello Kristin, thank you so much for sharing your story. It might be my case as well. Could you please tell me, where was your leak located? Back of the head, lumbar area? Is it possible to be leaking CSF from your tailbone area? Please advice, if you can. Thanx!
can you please find me on fb and help me? I am 99 percent sure I have a csf leak.. I can't get into dr carroll until end of July.. I can barely leave the house
Sure Mallisa! I know doctor Carroll's schedule is getting really full these days.... if you have any questions let me know and I"ll do my best to answer.
I did have a lot of vision changes... when I would have dizzy spells my vision goes dark like tunnel vision. And I also see floaters (like big white blocks of light) and I'd get like little twinkling lights and my vision would get fuzzy...
YES! When I was leaking really badly, the slightest posture change or bending down to pick something up was TERRIBLE! It would send pulsing sharp pain throughout my head. Now that I'm sealed.... I don't have that anymore. But I have had what we are calling a "micro leak" that I must have sealed on my own, and during those 4-5 days I also had the same feeling when bending down.
To everyone suffering. I am a sufferer. I’m about to see a Neuro surgeon for cervical cfs leak. I have autoimmune. Getting tested for pots and ehlors danlos. I’m scared. Im a single mom with two kids. One sick child with rare autoimmune and my heart just goes out to all of you. We are a special breed. No one understands. I cry a lot. It’s hard but God has been so gracious to me. I love you all. I don’t feel you have to meet someone to love them. I believe people suffering are of the kindest I’ve met and most humble. So I love you all in Christ. Whether you believe in God or not there is something in me that God gave me and it’s an abundance of compassion and love. I know what suffering is. So to all of you and this sweet girl in the video I pray for all of you and hope your life is blessed and healing is in your future.
How is ur pots
How did your doctors apportionment go?
Oh wow! This video is still getting comments even now... over 3 years later! I am sorry that I haven't had time to keep up with this page or respond to all the comments here.... I will try to post an update video in the near future!
Sending all of you who may be suffering from the same symptoms lots of love and support! Hang in there- and don't stop searching for answers!
Kristin Ann thanks for sharing your story. I found it because I am fighting for my mom. She was misdiagnosed and I am fighting for her recovery
How are you 3 years later? Do you have ringing in the ears or headaches?? Please let your followers know.
For those suffering with POTS and corresponding upper neck/headaches and pain...it wouldn't hurt anything but your wallet to get a DMX motion X-ray done on your upper cervical spine. Instability at C1,C2 in your neck are frequently misdiagnosed, and causes many of the same symptoms as CSF leaks and POTS. A standard X-ray or MRI of the neck will not find it.
Everything you went threw for those 6 months I’ve been going threw for 2 months I’m finally going to get my blood patch this video gives me hope!!
HI how did your blood patch went? Did it cure your pots symptoms? I had my 1st blood patch but I' AM still having the same pot symptoms.
I think this video just saved my life. Your story is identical to mine except for the pots and having issues at childhood. I've had exact symptoms as you since I got my tonsils and adnoids removed. I have an appt Thursday with my ent dr to see if he can't run tests for csf leak. If not I will have Togo back to my neurologist and ask them to run the tests but at least now I can bring it up and run the tests. I've been depressed for a few weeks now with this tinnitus bothering me and the dizziness. Thank you for sharing , it's nice to know someone else has gone through it and to relate.
Kristina! So happy you can relate.... Let me know how the tests went?
Did you get help?
Ian Carroll I need help please .. I’m 100% sure that I have a csf leak somewhere in my spine ! I have all the symptoms ,ringing in ears mild headaches nausea blurred vision and a runny nose from the left side only . I’m so scared and now I feel like I’m getting the flu! I’m scared to death that it’s gonna affect my brain or cause meningitis please help
Thanks so much for sharing your story! Just got hopefully my last blood patch almost 2 weeks ago and started vlogging my recovery to hopefully spread awareness!
How many have you had. I had two to repair a post dural puncture headache and now I need another one. The hospital who caused all this mess is refusing to give me a third. I need help
No cure for pots
thank you so much for this. I have a CT myelogram scheduled in the morning and have been so terrified I've already cancelled twice. Now, I'm praying I do have a CSF leak. For 7 years I've had what was diagnosed as daily migraines. This year I was diagnosed with Ehlers Danlos Syndrome and now I'm thinking these migraines may be due to Chiari, CCI or CSF leak. Thank you SO much for sharing your story. I feel very encouraged that there is hope after being bedridden the past year.
There is hope! Being bedridden is so hard because you start to question everything... I've been there. I hope they see something with your myelogram results... but even if they don't, ask for a second opinion to look for even the slightest thing that looks abnormal.
Kristin Garnell yes exactly! I've started to question EVERYTHING! Unfortunately I had to reschedule again. But am going to pursue this and really got hope again from hearing your story. Thanks so much Kristin
I love your message! I completely relate a million percent to your story, and I’m so grateful to you for sharing your story. Dr Carroll is the best! Brilliant and hilarious!
Thanks you sweet girl for sharing your story. I’m a 64 year old man and I’ve got a very similar story. Next week I’ll get my spine tapped for the first time and I’m anxiously waiting for the results.
csf leaks can also be in the nasal cavity, sinuses and ears. that would involve seeing an ENT doctor.
Thank you so much for sharing your story! You are brave, strong and I’m sorry you have had to go through this pain and suffering. I’ve been going through much of what you have and an seeing a Dr O’Carrol in Southern California. I’m going in for a cysternogram on August 21st to diagnose a CSF leak. I’m nervous and scared because of the pain. I know I’ll get through it. I just want to feel better. I’ve had Lupus for 31 years so pain is not new, just old. It’s good to know there’s an end in sight for the headaches, nausea and overwhelming fatigue. Love and prayers for you.
Hi, I was diagnosed with pots a few months ago after having symptoms since April after having 4 hip surgeries. My worst symptom I have is a terrible headache that I have 24/7. I just had a myelogram done 2 weeks ago and found that I do have a csf leak and will be making a trip to CA soon hopefully to get treated.
so happy to hear this! I hope the patch helps you as much as they have helped me!
Did you make the trip to Ca? By any chance did you see a Neuro surgeon at Cedars Sinai? I’m seeing a doctor there in a few weeks for cfs leak. I’m scared. His name is Dr. Shveink. I wondered how your trip turned out and who you saw and how you’re feeling?
How do you get in to cedars Sinai? I need help please.
No cure for pots
I haven't been diagnosed yet, but for well over 2yrs I have all symptoms and passed out twice and had a seizure last year. It all started due to a car accident I was in. Where I live in Nova Scotia Canada the doctors haven't totally believed me including the one CSF leak specialist. I found out Dr. Schievink in LA does phone consultation. So I'm hoping he will help me cause I'm broke and almost 8 months bedridden. Thanks for sharing your story!
OMG this is my story .. 20+ years now of trying to figure out what is wrong with me. EDS/POTS/IBS/Fatigue/pain etc day in and out forever. I got an upright MRI and of course it came back negative for Chiari but it did indicate lots of stenosis and bone spurs in my deteriorating spine (EDS). I'm 42 and POTS has been ruining my life for years. This is the first time in a while I've felt any hope.. Like you it's been one "normal" lab after another for years. It wasn't until I literally passed out on a tilt table that anybody took me seriously and even then their answers are "here eat salt, good luck" ..
I'm trying to get ahold of Dr. Carroll but so far no response, I'm so excited that I'm being impatient. Thank you for making this video. btw.. I only get occasional headaches but when I do they're pretty bad and posturally affected. Do you know of anybody with a story where headaches aren't so prominent? For me, POTS and fatigue are the most prominent symptoms. Also, I've talked to 100's of POTS patients and I haven't met many people who start the day POTS free and finish the day with full blown POTS (every day!). I also have lots of little things like sensitivity to sound, light, dizziness, feelings of swaying when I move my head certain ways, hormone imbalances (several neurological oddities).. so, I'm hopeful this will pan out for me. Any thoughts, advice, contacts, anything is welcome.
Again, thank you for making this video. You're helping save people's lives and apparently so is Dr. Carroll.
Matthew Mackay email Dr Carrol. I can give you his email if you don't have it. He replied to me the other day. He gave me instructions to do a 48 hour lie flat test and studies to take to my neurologist and local doctors near me who can test for leaks.
Golden Carter yes, he responed to me with the same advise. Ive tried and been denied by several local neurologists so im having trouble finding any local help. I may have to go out of state which is expensive and prohibitive. I may try the 48 hour test first.
@@GLGC688 do you still have the email add of dr caroll? I want to contact him for csf leak
@@mattmackay76 do you still have the contact information of dr carroll?
Hi Kristin! Thank you so much for sharing this story- this is seriously my story, too. I am undiagnosed, but just realized that I probably have EDS and a CSF leak, only my leak is cranial. I was wondering if we could possibly chat/email sometime, as I live in MI too and am trying to find a path to diagnoses. I am so tired of doctors brushing me off and I know in my gut I'm on the right track. Thanks again, and I hope you are doing well!
Brittany Sides hi , how are you doing now? Did u get diagnosed and treated ? If yes where ?
Can anyone help me with this? Been to dr no help? What do I do
No cure for pots
POTS can be secondary to so many things: Fibromyalgia, EDS (hypermobility), tethered cord, Chiari Malformation, Mast Cell Disorders, thyroid issues just to name a few. Lyme Disease as well must pe considered even though chronic lyme is not a recognized illness. Treating the root cause is the way to go.
VIDFIO the tarlov cyst maybe is the source of all this problem. Cyst in sacrum.
sweet jesus, ty so much for this video.
Im happy you've found ease from all of that, I hope I can find something at the root of all my PoTS symptoms like you did.
No cure for pots
I've been leaking for 3 years - totally bedridden in utter agony. I've literally lost everything. Dr. Carroll told me since he can't find my csf leak on an MRI, and because his 3 blind blood patches didn't work, that I will be bedridden the rest of my life. Totally devastated and full of despair. He said no one will patch me going forward so my PCP have up on me as well.
I am so happy for you. This is Wonderful that you are doing better
Have you ever considered MAST cell disorder? It coincides with POTS.
OMG how do I get to see him? I live in Vermont. Had neck surgery, many spinals, many whiplash’s and super flexible as a kid. After my pregnancy in 2006 has a spinal headache and never recovered. I became very symptomatic in July/August after vascular surgery (they did a another spinal). Now I possibly have POTs. My heart rate will spike as high as 202 (no heart condition). Diagnosed with migraines since forever ago. Going to Boston for autonomic testing. Beta blocker doesn’t really help. Went from running to having to lay flat. Did the doctors really lay flat test and that definitely helps. Had a cervical neck mri which showed bone Spurs, tumor and nerve sheath cyst. Also get pain and numbness in arm and legs that comes and goes. My head pain comes and goes and so does my energy. I literally will feel the battery drain. Exercise (running & yoga) are huge triggers. I’ve been take by ambulance for severe migraines from yoga and running. When I saw him and you on UA-cam I was like this is me!!! Please help!!!
Hi did your pots symptoms cured when they fix your csf leak??
I have only spent four weeks sitting and crying because of the pain. When I lay down I seam to be fine. I have been to the hospital once got meds and sent home. When I understood what was happening that when standing I was fine when laying I was fine .but sitting if I sit up to long my pain jumped from 4 to 10 in 5 secs. So I have been laying in bed everyday trying to walk around the house but even standing causes me to get dizzy and nauseated, with pain and pressure. I am waiting for and app for a MRI but tom I am going to the er again. Explain what is happening and hopefully get a patch done and get some relief. I watched your video and I am so happy that u finally got or relief .
Hi Kristin! I hope you are feeling fine by now! I was diagnosed with csf leak a year ago and had had 3 bloop patches. Now I can walk but I feel my head all the time and I can bend or pic something from the floor. My doctor tells me ist the recovery but my last bp was 4 month ago ... could you tell me if in your case was the same?
Hi Kristin ,thanks for sharing your story,I am glad that you are doing we now .my son diagnosed with CSF If you please tell me where were you treated and the name of dr
I wish you complete wellness soon :)
Dear Kristin AnnThanks so so much for this video I will explain things when I have a momentI just wanted to say thank you so much
OMG for three months I've been bed bound feeling am dying from pain and those sharp head stabs in and out of ERs for nothing. Now am still bed bound but less pain basically have to be effortless physically and mentally not to have the headaches and nausea. Am having an abdominal binder with a tennis ball squeezed on the lumbar puncture site to help. Am praying for self recovery since no Dr is willing to patch me here! I don't know psychologically how long I can put up with this situation.
No cure for pots
@@prathamrballal1229 POTS was a consequence of the Csf leak
How is ur pots now
@@prathamrballal1229 POTS disappears as soon as the the leak heals, instantly. It's a compensation phenomena when the brain loses its fluid the heart compensates to pump up more blood to keep an equal brain volume.
But I am struggling past 3 years
Poor sweetie. I know this story. Sending prayers and blessings and love ❤️
Thanks so much for sharing your story! I have similiar symptoms, which all started after a whiplash/concussion injury that hasn't really improved over the last 18 months. I'm in so much pain and I've been unable to return to work! What kind of doctor would I need to see for one of these scans? Spinal surgeon?
Hey Kristin! I stumbled upon this video and this sounds exactly like me! Although I have t fainted, but I feel like I’m going to sometimes. Just curious as to what type of doctor is the doctor who decided to finally do a spinal tap? I’ve been trying to get a doctor to suggest that. Any info would be awesome, thanks!
Kristen, did they explain what caused the leaks to begin with? Was it some spine alignment puncture, or something explicit that punctured it, etc...?
I had a water like drip coming from my right nostril, about 1 oz every 10 minutes. I knew something was strange, as I was not congested and the left nostril was fine. This all started Nov.1st, 2018. I was seen by my ENT doc a few days later. After CT scan, MRI, Beta 2 transferrin fluid sample testing, and a sore painful nose, Dec 13th is my surgery date. I will be in surgery in less than 14 hours from now, scared and very nervous. My ENT doc did a nasal scope in the office and pretty much knew it was a CSF leak as soon as he saw bubbling at the base of my brain. Wish me luck folks! Gotta sleep now.
Update. I did have my surgery, had to have a total of 3 surgeries, 2 csf repairs and 1 lumbar drain placement. Was in the ICU for 15 days, lying flat, head of bed up only 30 degrees to eat. I had nausea, hallucinations from all the meds, and lost 17 pounds. Came home on Dec. 31st. No more dripping, yayyyyy!
Stella Artois - thank you for the initial info and update. How are you doing now? I'm pretty certain I have a csf leak. Now to convince my doctor to do appropriate tests.
@@687805 are you seeing an ENT specialist? I know this sounds crazy, but do you know anyone that has diabetes and tests their blood sugar? If your drainage tests positive for glucose, that is a sure sign of CSF leak. I hope you get well. I am doing much better, still dealing with nausea, but other than that, I'm good.
Did it started dripping when you positioned your head at certain angles or even when your head was in a normally straight position and it was still leaking ?
WOW.... sending you my love and support!
Hi Kristen, I just watched this entire video of your treatment of a CSF leak and am still reeling from what I just watched! I was diagnosed with pots last August and just last week was told by a neurologist that they think I have a spinal cord leak and want to do a blood patch. What caught my attention is you said you were from Michigan and so am I. I'm currently seeing a cardiac doctor at U of M Ann Arbor and was wondering if you have someone in our state that you have been dealing with. My current cardiac doctor doesn't want to do the patch because she doesn't think it's a leak. I'm desperate to try anything to get my life back but am scared to death to have someone mess with my spinal cord.
+Yvonne Fil unfortunately I didn't have any luck with doctors in MI(I'm from the UP) But if you think you have a leak.... I hope you can find a doc there that'll be willing to do a patch!
Thank you for this video Kristen. I believe I have a csf leak. I can recall numerous head traumas as a child, along with that came ringing in the ears or partial loss of hearing (changes constantly, also depends on sleeping position) constant headaches (also change with position and activity), neck pain and stiffness, my vision changes daily, constant drainage, constant runny nose, salty taste in my mouth from drainage etc. I need to convince my doctor to do some real tests in short order. Any tips? Thanks. I'm from a small town in Michigan also. No... not flint. It's not something in the water lol.
I'm familiar with that line from the doctor "Oh, you're depressed." Well yeah, because I feel like shit everyday! The depression is just a symptom of a bigger problem! Dr- "well, nothing I can do for you if you won't accept my diagnosis."
What! Called an uber to get yourself to surgery!? Wow! Good job! Glad you made it through despite the struggles.
Get to a bigger hospital. I do blame a lot of my years being mis-diagnosed from living in a small town.... and I am so blessed that I happened to be living so close to Stanford when I was finally diagnosed!
#1Lazer most of the doctors now are bs.. they don’t really care or listened what’s the real problem
Of the patient.. they are too lazy to find, search, studies and the easiest way for them to diagnose you was to prescribed you an anti depressant!
I honestly don’t know what I have... i always feel dazed and get bouts of dizziness, I have really bad sinuses and have had three procedures, including one major surgery. I also feel really tired and have a lot of pressure in my eyes. I have really bad neck pain, mostly when I bend my neck. Back pain too but its very spontaneous and it’s usually more really bad tightness. I do have headaches too but I wouldnt say they are insane, I feel like they are tension headaches.
Hi Kristin, do you know of a way to get a hold of Dr. Carroll? I recently gave birth on Aug 29th where I received a traumatic epidural. I woke up the next day with a spinal headache and they did two blood patches to get me on my feet again. Now 3 month later, I am pretty much confined to my house and bed. I suffer from headaches, crippling neck pain, back pain, dizziness, ringing in the ears, as well as many other neurological symptoms. I am unable to care for my baby and I am desperate for help. I went to the hospital many times begging for another blood patch and they refused it to me saying it was a liability. I just need help, I want my life back so badly
I was wondering how are you? Did you recovered? Were you able to get another blood patch?
Is it possible to have weak shaking legs during walking and have seizures with pots? Do you need a wheelchair?
I'm not diagnosed with POTS, but I get very sick if I stay up too fast since I've been a teenager. My stomach goes crazy too. I have incontinence too and need diapers. It is so hard to walk and staying for a long time is very shaky, so I've bought a wheelchar! The only sure diagnostics by me are In the last lumbar vertebra I have an osteochondrosis and an ISG-blockade! Did you have a very long trip from doctor to doctor too?
After the bladder infection and the Otitis in the Winter 2014 / 2015 I felt like I didn't get my old power back! After the summer with over 40 degrees Celsius my legs are weak all the time. If it's very hot they're feeling like there are ants and nails on top! In 2016 it startet with falling down on the floor!
Hi, how long after your blood patch were your pots symptoms got resolve?
Have you been checked for connective tissue disorders? Since that is one of the major things that can cause CSF leaks? Also you look exactly like me and my sister. The nasolabial folds, the lips, the eyes are slight asymmetry. But seriously when I look at you I see what people mean when they say I have something 'elvish' about me.
A blood patch is considered surgery? I thought it was just a procedure you can go in and out?
Here is the link to the video of the talk that my doctor gave: ua-cam.com/video/QyvWxobqKrc/v-deo.html
I am wondering if it leaks everytime you bend over? It happens to me sometimes, thanks 😊
😵 sounds like my story... 😨
I had SVT. It had an ablation...
But also still have Orthostatic Hypotension
But also have a darn weird clunking in my neck c0-c3 somewhere...
had an epidural last May that made me worse!
And Every Doctor... just attacks the tension and depression... no diagnosis
But no headaches really just crushing Occipital tension
My tilt table failed only when they gave me Nitro
Later in life Benzodiazepines made me worse after Tolerance set in
Robert Long -- I'm nearly bedbound with ME/CFS and am considering trying Klonopin, but am also aware of the risks. May I ask how many years it was before tolerance set it?
Kristin, I our stories are so similar it's scary. I was wondering if I could possibly personally reach out to you somehow? I was diagnosed with POTS ten years ago (when I was 16). I take midodrine and a beta-blocker for my heart. 6 months or so ago, I developed daily migraines to the point where I can barely function. I have been hospitalized, I've been to several doctors, been put on different meds, had a number of treatments- nothing has worked. I feel like I've been given a life sentence and I want my life back! I really think I could possibly have a CSF leak after watching this video. Is there any way I could somehow speak to you?
How are you doing now? Did you finally get the right treatment?
Hi Kristin, are you still doing alright? I live in sweden and been in the hospital for 5 weeks today. They´ve found that I´m leaking but don´t how much. I´ve done about 3 or 4 MRI´s and 2 bloodpatches.. but still feel awful. I´ve tried to get in contact with Dr IC but without result. Can you help me with his email? I´ve looking at your "story" every time I feel a little bit down..ThankYou
is csf leaks caused by surgical methods considered an illness/disease or just a csf leak? and will it go away forever (treated by graft and suturing) or?? also will the dura grow back? or must the patient rely on the graft permanently. thanks
I believe I have a Csf leak and I don't know what steps to take
The Prince Bravo me too!😭
I use to see some thing about a meter mov. A is any one aware of that Vid ? Ive suffered 29 years unable to stand...hardly at all.
Thank you!!
Hello Kristin, thank you so much for sharing your story. It might be my case as well.
Could you please tell me, where was your leak located? Back of the head, lumbar area? Is it possible to be leaking CSF from your tailbone area?
Please advice, if you can. Thanx!
I had multiple leaks in 3 different places..... Yes- it's possible to have a leak I think pretty much anywhere in your dura.
I am not a doctor but AFAIK the dura doesn't reach down to the tail bone
can you please find me on fb and help me? I am 99 percent sure I have a csf leak.. I can't get into dr carroll until end of July.. I can barely leave the house
Sure Mallisa! I know doctor Carroll's schedule is getting really full these days.... if you have any questions let me know and I"ll do my best to answer.
Did you have any vision changes while all this was going on?
I did have a lot of vision changes... when I would have dizzy spells my vision goes dark like tunnel vision. And I also see floaters (like big white blocks of light) and I'd get like little twinkling lights and my vision would get fuzzy...
Kristin, does it get worse when you tilt your head to the floor while standing?
YES! When I was leaking really badly, the slightest posture change or bending down to pick something up was TERRIBLE! It would send pulsing sharp pain throughout my head. Now that I'm sealed.... I don't have that anymore. But I have had what we are calling a "micro leak" that I must have sealed on my own, and during those 4-5 days I also had the same feeling when bending down.
What hospital did you get the blood patch
Where were the leaks? And did you have to get a CT done before each blood patch?
I had multiple leaks... in my neck area, mid back and lower back. No, I only had the CT Meylogram done the one time.
Are you still okay to this day? ♥️
Your story sounds so much like my story.
Were you ever tested for Lyme disease?
Interested indeed
I have the same thing
Hi Kristin, would like to ask u more in instant int messaging somehow...am I able to add.u to FB?
Hey Moni,
You can message me on instagram: instagram.com/pots_survivor/
or my email is krgarnel@gmail.com. ( I don't want to publish my FB on here)
I'm gonna see a neurologist soon
And the amount of money we spend Omw 🤷♀️
You look like ballerina Sarah Mearns
No cure for pots