I can't beleive I am still having so much pain around my incision after 13 weeks , I can be walking and all of the sudden I get this awful pain that litterly stops me from moving it hurts so bad but only for a few minutes. I can hardly touch the spot that is half way between the back of my head and ear.. it is so tender does anyone else have that or had that?
The doctor called confirmed I have a CFS but I missed his call he left the message on my machine.. This is ????? I am calling to see how you are feeling but it is not urgent , you do have a CFS leak like we thought we need to discuss the next steps to take.. I will call later this week. GEshhhhhhhhhhhhhhhhh .. So, I called the office and talk to his Assistant (she is amazing) and she said he was in clinic for the next two days and he wanted to know if I was still going to take my trip in 3 weeks back to Ontario.. I said yes, if he is not going to do anything I can go to ontario with pain or stay here.. ummmmmmmmm not even a question.. Well, he wanted to make a clinic appointment..(they are 15 min appointments) No can't I get in to see him within the next two weeks.. after the MRI, Spinal tab, having to go back the next day for more test.. I would like know what he found ,she said well he said he has more urgent people to see.. UMMMMMMMMMMMm he screwed up I said He needs to fix it , I am not living on med to cover up my pain. She was so sweet and said I understand I will try and fit you in but no promises..
Really, He said right after my MRI that I had a leak and we needed to pin point where it is coming from.. he said if it is coming from the bone easy fix.. steriods for a week or two and we can get it cleared up.. So if it is not urgent and he confirmed a leak then don't you think he would take the time to write the prescription so I can stop having such pain head pain that feels like a bad tooth ache? I am so angry that I can't do much and he doesn't think it is that important.. my face is twitching more , my pain is so bad I have a heating bag with me to gets some relief..
I really need to go see my family it has been two years.. I want to take the kids to Canada's wonderland and niagra falls.. they have been waiting and counting down.. If I don't go so he sees me for 15 mins , he might write a prescription or he might schedule another surgery.. but not for weeks.. I am so angry with him and hurt that he hasn't even discussed with me what they found although the technicians did.. All he has confirmed is one phone calls saying yes there is a leak and the other one we have found that is is a CFS leak just like he thought..
Has anone had a CFS leak? If so how long did you wait to have it repaired? or is this pain on the side of my head and the incision soreness normal after a CFS leak?
I could really use some help I am just so upset and confused on what to do..
I’m sorry you are having such problems. I had an MVD in jan and about three weeks later there was stuff leaking and I went to my local ER I live in sarnia Ontario and had my surgery in London so the ER doctor called the
Nuro resident in London Ontario and they rushed me to London cause they were worried about CFS leak I was in hospital for 24 hours while they ran test . They said that if it wascf
Csf they would have to think quick as it could cause a bigger problem. It wasn’t CFS it was an infection. I would say if you aren’t getting anywhere with your Niro doctor I woul go the ER and say that you have a confirmed CFS leak and it’s very painful
And want to make sure it’s not getting worse cause you haven’t got an appointment without Nuro. They might send a resident around to see you. If anything it will give you some peace of mind or they will set up an action plan for you.good luck
I'm not a doctor but it would seem that something wasn't done correctly in your surgery? I had severe and chronic drainage in my sinuses following a surgery to my face, and was having severe problems with low blood pressure when I spoke with a pulmonary doctor who said that a puncture to my sinus during surgery could have caused a leak, and that when Cerebral Fluid leaks out that it has to be replaced, and that she thought something like this could be affecting my blood pressure. I did not have a CSF leak, thank goodness but rather may have suffered an injury to my vagus nerve.
It is a very serious issue and if I were in your shoes I might consider looking for someone whom you know that can recommend a reputable and honest second opinion Neuro. Doesn't sound like I would want this Neuro doing anything more to me? Just my two cents. CSF Leaks are VERY SERIOUS and it sounds like he is guilty of something, therefore is blowing you off out of fear.. Again, just my opinion from much personal experience in the psychology of doctoring.
Tell them you need to speak to him personally. Tell them you want him paged! Let him know what ER you are going to and be sure his reports are available to him.
I'm not a doctor but it would seem that something wasn't done correctly in your surgery? I had severe and chronic drainage in my sinuses following a surgery to my face, and was having severe problems with low blood pressure when I spoke with a pulmonary doctor who said that a puncture to my sinus during surgery could have caused a leak, and that when Cerebral Fluid leaks out that it has to be replaced, and that she thought something like this could be affecting my blood pressure. I did not have a CSF leak, thank goodness but rather may have suffered an injury to my vagus nerve.
It is a very serious issue and if I were in your shoes I might consider looking for someone whom you know that can recommend a reputable and honest second opinion Neuro. Doesn't sound like I would want this Neuro doing anything more to me? Just my two cents. CSF Leaks are VERY SERIOUS and it sounds like he is guilty of something, therefore is blowing you off out of fear.. Again, just my opinion from much personal experience in the psychology of doctoring.
Thanks Sunshine I asked his office today to fax acopy of the tests to my doctor and my Nero Doctor ( but he does not do the MVD surgery so he referred me to another doctor but I ended up with this one.. So I will at least be able to know what the found this week (what kind of a leak and where it is coming)
Can I do that? they will make me wait in the waiting room. But I think I am going to see the doctor that my neuro wanted me to go to in the first place. Not sure I want this one doing anything to me
Hippie1 said:
Tell them you need to speak to him personally. Tell them you want him paged! Let him know what ER you are going to and be sure his reports are available to him.
I was there a few weeks back with a headache that I could not deal with and I waited in the waiting room, then on a bed for 2 hours and then a resident Neorgo seen me took some blood tests, did a cat scan see the leak (that is what started my surgeon to do more test) but then they put me in a dark room for another 3 hours checking on me till my head ache and pressure was manageable. I am going to see my doctor thursday and she said if she has a cancellation she will get me in Wednesday, CFS leak can't clear up by themselves? Because I can't beleive this doctor said it was not urgent but confirmed I had one but didn't tell me where or anything else , I was thinking maybe the test results showed it was coming from the bone and it would drain on its own.
Kc Dancer Kc said:
Go To ER Please!
This is nothing that should be dealt with lightly! Let Us Know!!!!!
Thank you Andrea, I am headed back to London, Ontario to see my family for three weeks but I admit I am a little scared to leave with my head hurting but I know that if I have another bad head pain I can go to the St. Thomas Hospital and they will take care of me right away that is the only peace of mind that I get from not knowing where this leak is. But I will be seeing my doctor this week because I request the Surgeons office to send copies to my doctor and the Nero Doctor I have been seeing for 2.5 years.
AndreaD said:
I'm sorry you are having such problems. I had an MVD in jan and about three weeks later there was stuff leaking and I went to my local ER I live in sarnia Ontario and had my surgery in London so the ER doctor called the Nuro resident in London Ontario and they rushed me to London cause they were worried about CFS leak I was in hospital for 24 hours while they ran test . They said that if it wascf Csf they would have to think quick as it could cause a bigger problem. It wasn't CFS it was an infection. I would say if you aren't getting anywhere with your Niro doctor I woul go the ER and say that you have a confirmed CFS leak and it's very painful And want to make sure it's not getting worse cause you haven't got an appointment without Nuro. They might send a resident around to see you. If anything it will give you some peace of mind or they will set up an action plan for you.good luck
I really hope your doctors appointment goes well. If you are in London and you by chance get an attack or are in pain and need to go to a hospital I highly recommend university hospital in london Ontario. This is where I had my MVD yes it only worked for a few months and on the 28 th I will be having a spinal cord stimulation trial put in. If you end up at the hospital they will pages neuro resident and a head doctor pages to come and see you. They are awesome there. They will put your mind at ease. I really hope you get answers and the doctor knows that this needs to be taken care of ! Good luck
Cathie Lynn said:
Thank you Andrea, I am headed back to London, Ontario to see my family for three weeks but I admit I am a little scared to leave with my head hurting but I know that if I have another bad head pain I can go to the St. Thomas Hospital and they will take care of me right away that is the only peace of mind that I get from not knowing where this leak is. But I will be seeing my doctor this week because I request the Surgeons office to send copies to my doctor and the Nero Doctor I have been seeing for 2.5 years.
AndreaD said:
I’m sorry you are having such problems. I had an MVD in jan and about three weeks later there was stuff leaking and I went to my local ER I live in sarnia Ontario and had my surgery in London so the ER doctor called the Nuro resident in London Ontario and they rushed me to London cause they were worried about CFS leak I was in hospital for 24 hours while they ran test . They said that if it wascf Csf they would have to think quick as it could cause a bigger problem. It wasn’t CFS it was an infection. I would say if you aren’t getting anywhere with your Niro doctor I woul go the ER and say that you have a confirmed CFS leak and it’s very painful And want to make sure it’s not getting worse cause you haven’t got an appointment without Nuro. They might send a resident around to see you. If anything it will give you some peace of mind or they will set up an action plan for you.good luck
I stayed home for a week and just stayed horizontal IE I lay down or stayed on the couch. as soon as I stood up HUGE pain. went nowhare felt great as long as I was flat.
On my follow up appointment with my Nurologist he called an ambulance and I went straight to hospital.
very large risk of infection past the Blood Brain barrier aparently. I stayed in hospital for a week on meds until I could stand without pain and the leak resolved
so that was 27 days after the surgery I think. That was untill I was released from hospital the second time.
You should not take this lightly as said it is very dangerous.
BUT a CSF leak can be fixed "sometimes" with a blood patch. IE they take your blood and treat it, inject it into the Spinal area where the liquid is the blood then goes to the leak and clots. (worst explanation ever but google may tell it better!!)
I had to have the steroids
I hated the steroids
I really hated the steroids BUT that was MY reaction. I had a very poor reaction to that drug and will never have them again. Dethamaxone or something..... never again. Took me a year to get over them
the surgery I was ok the Dex sucked.
But that was my reaction only.
Please go to hospital and get your self well.
Oh and try the lying down thing. stay there for a few hours, see how you feel
Thanks Simon you are right when I lay down in about an hour or more I start ti feel a bit better. Right now I started feeling this week like I have the flue cold and very hot chills I will be seeing my doctor tomorrow . She is the one that said I had a tissue infection and for the second time been put on antibiotics. So she is going to go over everything and start a plan. Thank you for sharing
Good reason to get the Hubby to do the work and stay on the Couch / Bed and just recover as best you can.
remember that the MVD surgery is a big one and sometime there is an expectation that you can just bounce back quickly. I didnt. Not after the CSF leak. Let your self heal.
Simon
Cathie Lynn said:
Thanks Simon you are right when I lay down in about an hour or more I start ti feel a bit better. Right now I started feeling this week like I have the flue cold and very hot chills I will be seeing my doctor tomorrow . She is the one that said I had a tissue infection and for the second time been put on antibiotics. So she is going to go over everything and start a plan. Thank you for sharing
Yes, Bob I did and I seen him yesterday, I have a bone leak where they drilled the whole, but he thinks I might have a bone infection so we did a CT Scan yesterday and he will get back to me to day. I have tissue building up around the teflon so we have to redue the MVD but if there is not bone infection then it can wait till I get back from Ontario. He said the leak will heal itself in time the tissue will grow over it and contain it. So I will wait for results today.
I had my Mvd done July 11. Won’t home July 14. Back into Er on July 18 with major Cfs leak. Had lumbar drain put in on July 19. Sitting in neuro trauma with a bag of brain juice attached to me, an now was informed that it will be a slow drain process due to the air bubbles that got let into my brain! Omg! I just want to feel better.