How Is Everyone and Thanks for this Board!

[Edward]

Hi Everybody,

Hope you are all having a good day. The board has been kind of quiet this past week so I thought I should see if we are all still awake!

I just wanted to say thanks to all of you who participate in this message board. I cannot imagine how lonely and isolated I would feel if I did not have a few people to talk with who can relate to my situation. It helps me so much to go back and read some of the previous posts and stories. By leaning on each other we are indeed stronger.

...Wishing us all health and strength....Ed.:)

[PainInTheNeck]

Hey There Ed! What a nice post. I know exactly what you mean about how much it helps. I felt so isolated and scared and alone until I found some fellow leakers that had been through it or were goig through it. The Docs don't really have a grasp on how completely debilitating this is and so without you all I would have also thought I was crazy!!

I am well enough to pretty much do whatever I want now. I have "episodes" of internal pressure. I describe it as like having a blood pressure cuff inside my body but that doesnt even really do it justice. I also still have the ringing in my ears and sometimes I could swear there is family of elves running loud machinery in my head (LOL). Went to the Doc this week and he thinks it will just take time for the meningi to get back to their normal placement.

I am sad to report that my Mother tripped on her stairs yesterday morning and broke her left foot which threw her down the stairs and she broke her right ankle/lower leg in 5 places. She had surgery last evening and so the good news is I can help her. She helped me so much when I was sick.

Hugs to you all and well wishes! Shelly

[repeat leaker]

Well my story this week is so pitiful it is actually funny. It truly shows the challenges with this condition.

On Tuesday I went to a pain clinic to try and figure out a way I could better manage my pain (medications etc.). I have been out of work for 2 months and being home isn't doing any good. In the pain clinic the doctor was talking to me and noticed my right eye was dilated. When she asked me I told her it had hurt a little during the day but didn't really notice. She told me it was most likely the pressure on the nerve and to immediately get a CT in the ER. She scheduled me for a blood patch the next day (wed).

I got a CT scan of the head - normal of course. When I got home, late because of the ER, my wife and I arranged to get our kids setup over at a friends house. We drove 1.5 hours with traffic and upon arrival at the blood patch the doc said she wasn't going to do the blood patch because the CT was normal. She also said there was nothing they could do for the pain without further direction from neurology (who doesn't have a clue about leaks) and neurosurgery (same thing!). My wife and I were speechless. The good news is I didn't have to have another poke, but it was the epitome of frustrating. What do we do know was the subject of our traffic filled drive home.

Anyway, I have been trying for some time to get in at Johns Hopkins since I live on the East Coast and finally secured an appt, but not until Feb 13. Today I saw my neurologist and he told me I should get, you guessed it, a blood patch.

I am going back to work on Monday and see if it makes any difference. If it doesn't I am not sure what I will do - but at least it won't cost me a copay.

Wow - the therapy of typing. Sorry for the long uninteresting post - but I do feel better after!

Oh - and a receptionist that will remain nameless told me there was no way I could have a leak again....I respectfully told her thank you for her educated diagnosis but I prefer to talk with the doc that charges me money for such insight.

RL

[GingerLox]

Dear Ed and all.............Thanks for the post! I check back here almost daily to see if anyone has any new developments. I do appreciate the support on this site. I was up til 4:00 am last night with lots of thinking time and my mind wandered to you all. Ed.........How is your sinus infection? Did you ever get it under control to give you a little more peace with the threat of menenigitis?

I am still waiting on the phone call from my doctor to set up the flourescein and pledget tests. Last time he called at the beginning of the week and I was in being tested within a couple of days. It feels weird to be looking so forward to these tests. I so hope they have some luck in locating it this time!!!

The ice was melting on the outside of the house this morning as I laid in bed, and I was thinking how it sounded so much like the fluid running through my ears!!!!!LOL~

GingerLox

[Concerned Gal]

Hi all,

Glad to be in the company of such great people...and fellow sufferers. I too like to check back in often to see how we are all going.

I'm not having as good a time as I have been. For a couple of months now I've been able to be more active with my spinal leak (after thoracic blood patch). Have been able to get out of the bed, out of the house, and even to work for a bit. Basically trying to be "normal" again. Last few weeks I've been feeling it a bit more. Before I was getting excruciating head pain as the main symptom, but now I'm getting a tightness/clamping feeling in my neck (always left side!). It feels like someone has a firm hold around my neck when it happens, and I think it's starting to happen more often. I've still been trying to live a normal life but it's starting to get me down a bit. Now i'm working more (than I was) I'm getting more tired and I have noticed that if I try and lie down during the days, i'm a whole lot worse. Once I"m up in the morning, I have to stay up as short lie downs seem to mean that the feeling happens more and is more overwehlming.

I have another MRI of the spine on Tuesday with contrast. I know what you are thinking - MRI of spine are useless for finding leaks. However, apparently they are going to try something different and really "zoom in". It seems like it's more for an academic perspective to try and see what my spine really looks like in detail but hey, i've got nothing to lose at this stage. I'm going to give it a go and hope that something, even if it's just more education etc and not find the specific site, comes of it.

But it's not all doom and gloom, I have had a few really good days though. And i attribute it to no bending (don't even bend over to clean my teeth/wash my face), keeping straight at all times, plenty of water, plenty of food (i've noticed that i get the feeling more so leading up to my next meal - so i'm eating as often as I can stomach it and it does seem to help a bit), ensuring I lie abolutely straight in bed on my side with my head looking straight ahead of me, only lying on one pillow, trying not to look down (so no reading unless I hold it up in front of my head).

Anyway, best be off. Take care all!

[Concerned Gal]

And for a few personals:

Shelly - I'm so glad you are doing as well as you are. Sorry to hear about your poor mum. wishing her a speedy recovery! Make sure you keep looking after yourself though.

Repeat Leaker - what can I say! The medical profession certainly can be um, frustrating :) Good luck with going back to work. Although it's hard to be back and not right, i'm glad to have a sense of normality and to use my mind a bit. And as for the receptionist, it gave me a bit of a laugh. I would have been so tempted to tell her thanks for that, I usually actually have to sit in the waiting room for ages when the dr runs late, get my concerns brushed aside and have to PAY to get told that i don't have a leak. (I think we have a similar sense of humour) :D

gingerlox - i can totally understand your "can't wait for tests". Sad isn't it. Good luck with it.

Edward - hope you are hanging in there. As a spinal leaker, I often find it hard to share anything constructive with you that might help you out. But I'm hoping that you aren't worrying as much about the meningitis thing. Yeah, it's a possibility, but my thinking is that we have to trust our bodies will do the right thing by us (HMPH, you may say as look what we are all dealing with) but i've found you just have to go with it. Don't take absurd risks, but don't worry about it too much. A less stressed body due to a less stressed mind can't be a bad thing. But i understand your concerns, I'm on immunosuppressants for another condition so I'm a sitting duck also.

Baffled - Just a shout out to my dear friend. Hope you are going well.


And apologies for any typos/wrong words. I've noticed i'm continually writing the wrong words. Anyone else have this? I only noticed the other day i kept writing "pain" instead of 'brain". Maybe i now just associate "brain" with "pain" as being one and the same. Even in this sentence now I wrote "know" instead of "now" but picked up on it after. GEEZ!

[Baffled]

Hi,

The last couple of weeks, I have been bending and taking on more "normal" tasks such as loading a dishwasher and doing laundry. I still get some pressure feelings, but nothing like it was. I am slowly making progress in the right direction. (I usually start to fizzle by 11 or 12.) Gosh, it feels good to be able to do things again!

I have taken on a very part time and very flexible job. It feels good to engage my mind once again. I am so much slower than I have ever been. I am hoping that it all comes back to me and that I can pick up my pace.

Thank you to everyone for all of the help and information that you have posted and shared. I have learned from all of you.

[Edward]

Good to hear from you folks. Here are a few specific comments for each of you:

Shelly: You are scaring me with the "elves in the head" thing! LOL Seriously though I am sorry to hear about your Mom. You take good care of her!

Repeat Leaker: Sorry to hear of your recent "saga." And that comment the receptionist made is totally inappropriate. It sounds like you handled it very diplomatically though. But didn't you just want to be a smarty pants and say something like "I forget now, where was it you received your medical degree?"

GingerLox: Thanks for asking about my sinus infection. After two rounds of antibiotics (plus decongestants and a steroid nasal spray) it seems to be gone. That was making me especially nervous so thank goodness I was able to get it under control. Please keep me posted as to the results of your upcoming tests. Sometimes when my ears are not "running" very much it seems like I just get a slight seep into the ears with no noticeable dripping down my throat (actually it is like this a lot). So this makes me wonder if a leak is that slight would they even be able to find it on a test like you are going to have. Do you notice that your symptoms vary considerably from hour to hour or day to day?

ConcernedGal - I hope that MRI provides you with some information. I have actually read that they are using MRI more and more to find/locate CSF leaks (at least with cranial leaks) so maybe you are on the right track. And thanks for your encouragement with regard to the meningitis fear. Yeah, despite all my health problems and now this leak maybe my body still does know something about protecting itself! I hope so anyway.

Baffled - Glad to hear things are going in the right direction for you. It is good to read encouraging updates like yours!

-Ed.

[guineapig]

Repeat,
I don't get it, what is with a suspect cranial leak and blood patch! I understand that epidural blood patches are for spinal leaks only. A head CT and a spinal blood patch, hmmmm. Yes, yes, we know, I know the doctors are lost in their deitieness, but ummm, I am missing something?

Dumb doctors. Many leaks are "cryptic" (the official medical lingo), and ebps are scheduled accordingly from clinical, patient history and symptomatology.
Ohhhhh, my fingers swell with anger... no, professional medical disillusionment. I think, I think I've lost faith. Yes, that's it, I'm converting. I wonder if my insurance will cover a visit to the local plumber. Heck, I think he will even do a house call for my next patch; he just might plug my hole. You know, they charge like a doctor.
guinea


Well my story this week is so pitiful it is actually funny. It truly shows the challenges with this condition.


I got a CT scan of the head - normal of course. When I got home, late because of the ER, my wife and I arranged to get our kids setup over at a friends house. We drove 1.5 hours with traffic and upon arrival at the blood patch the doc said she wasn't going to do the blood patch because the CT was normal. She also said there was nothing they could do for the pain without further direction from neurology (who doesn't have a clue about leaks) and neurosurgery (same thing!). My wife and I were speechless. The good news is I didn't have to have another poke, but it was the epitome of frustrating. What do we do know was the subject of our traffic filled drive home.RL

[guineapig]

Hey Concerned,
Yahh, the neurosurgeon suggests the same, as you say, "zoom in" MRI. My spinal leak was found by my head but confirmed by ct-myelogram. If you can, would you get and post the MRI details, magnet strength and whatnot.

Regarding a full stomach, I don't know about a full belly in particular, but it is known amongst the educated medical establishment that lying prone (on your gut) increases csf pressure because of the increased abdominal pressure. Tests confirm, it works, headache is reduced by this activity; and if you order now, I'll throw in some reduced diplopia; and as extra bonus, for the next 10 callers, vertigo and ataxia will be at reduced price.... sighing.

I adhere to the straight back (including neck), don't use abdominal muscles, keep pressure off the spine principle as well.


Hi all,


I have another MRI of the spine on Tuesday with contrast. I know what you are thinking - MRI of spine are useless for finding leaks. However, apparently they are going to try something different and really "zoom in". It seems like it's more for an academic perspective to try and see what my spine really looks like in detail but hey, i've got nothing to lose at this stage. I'm going to give it a go and hope that something, even if it's just more education etc and not find the specific site, comes of it.

But it's not all doom and gloom, I have had a few really good days though. And i attribute it to no bending (don't even bend over to clean my teeth/wash my face), keeping straight at all times, plenty of water, plenty of food (i've noticed that i get the feeling more so leading up to my next meal - so i'm eating as often as I can stomach it and it does seem to help a bit), ensuring I lie abolutely straight in bed on my side with my head looking straight ahead of me, only lying on one pillow, trying not to look down (so no reading unless I hold it up in front of my head).

Anyway, best be off. Take care all!