Repeat Leaker Update

[repeat leaker]

Thought I would provide and update on my leaks:
I am in Chicago and had a multi site injection blood patch by Dr. Shaibani at Northwestern. I have never felt better after a patch until I had an MRI with contrast and violently vomitted. I think I popped some holes. Headaches have been really bad.

I am having another blood patch tomorrow and am confident it will go well.

As a sidenote my arm pain and neck pain has decreased dramatically immediately after the patch.


RL

[Concerned Gal]

Hang in there Repeat Leaker. After my last blood patch, I vomited several times a day for nine days. Although i'm not 100% (and MRI shows some mild enhancement meaning still low pressure) I am stacks better than I was. I also had excruicating headaches for those nine days although my were also when i was lying down.

Take care, let us know how you go.

[PainInTheNeck]

Repeat leaker...

I wanted to "ditto" Concerned Gals post. Hang In there!!! I will be thinking of you and please keep letting us know how you are doing. I am selfish to some extent because I want to know how people are getting along after different Doctors have worked on them. I feel a trip to Cedar Sinai is out of the question for me(financially) but I may need to go to Dr. Mokri at Mayo or your Dr. Shaibani in Chicago.

Best wishes to You!!! Shelly

[Baffled]

I am glad that you are feeling some relief. How soon after this patch will they do the next patch? How many patches have you had? How many times have you been down this same path? Have you had a multiple level patch before?

I am relatively new to this forum and have only posted one time. I have sent a couple of messages to a couple of people here but have not written to you before. I am encouraged by everyones positive attitude and support! Everyone's information has helped me, thank you.

I look forward to hearing about your healing. It sounds like it will be in perfect time for the holidays! Take Care. Baffled

[repeat leaker]

Quick update - I just got back from 2 weeks in Chicago. I am feeling ok, still having some headaches. Good news is I am also getting some headaches lying down now also. Just going to take it really easy over the next few days. I have an egg timer set to 1 hour and drink a large cup of water each hour.

Baffled to answer some of your questions:
*Dr. Shaibani did a repeat multi level blood patch one week after. However, I don't think he normally likes to do them so quickly because of the high volume he is putting in. Considering my residence is PA and I needed to get home to family he did another patch at 1 week.

*The last patch was my 13 blood patch, only 3 have been multiple site patches. I have also had one glue injection. All of these since summer of 2001.

Also, I don't know that there is any published data on multiple site blood patches, however the multiple site technique allows for more blood volume to be injected, thus increasing the odds of a successful patch. For this episode I was able to get 35ccs then 25ccs. I have heard of single site BPs getting 20+ ccs, however I have always had too much disomfort when trying to get that high.

Hope this helps.
RL

[PainInTheNeck]

BIG HUGGGGSSSSS to you RL. It sounds like you have been through he!!. I wish I could help you in some way. This is such hard thing to deal with. If this doesn't work...are you going to consider going to Cedar Sinai in L.A.? Or have you already been there?

I hope you continue to heal and feel better.

Shelly

[repeat leaker]

Yes, if I am not better by New Years I will make a trip to LA to see Dr. Schievink. I am hopeful that my patch is healed and I just need to force in fluids???..... I have been out to LA twice in the past two years.

Thanks for the kind thoughts.

RL

[guineapig]

Quick update - I just got back from 2 weeks in Chicago. I am feeling ok, still having some headaches. Good news is I am also getting some headaches lying down now also. Just going to take it really easy over the next few days. I have an egg timer set to 1 hour and drink a large cup of water each hour.

The last patch was my 13 blood patch, only 3 have been multiple site patches. I have also had one glue injection. All of these since summer of 2001.

Hope this helps.
RL

Hi repeat, currious, why do you think having headaches prone is a sign of improvement? hmmmm.

What have the drs' reasonings been behind single location patches after doing double patches? My doubles have been more effective than the singles.

How effective was your glue? And am still more currious about doing blood patches after a glue patch. Are you leaking from the same location?

[repeat leaker]

I have always gotten "reverse headaches", which are headaches that are intense upon lying down, even to the point of waking me up at night. When I get up the headache goes away. These headaches have always been a sign to me that I am the right track.

Unfortunately the issue I am having now is both - headaches that are bad when I am up, but resolve when I lie down. After a period of lying down they seem to come back (reverse headache). My assumption here (again I don't know - just guessing) is that I still have a leak but am taking in enough volume that when I lie down and am not drinking i get the "reverse headache". Again I have no clue - I am just really tired of pain and very bored. This is my 2nd time out of work this year and the 4 time in 4 years.

Also, not sure if my leaks are in the same place. I have avoided getting mylograms whenver possible due to the unsure nature of my leaks. It appears I have a connective tissue disorder that is causing leaks spontaneously. I therefore don't want anything to purposely puncture the dura unless I absolutely have to. Thus, I generally try bp treatment first.

The glue patch I had did not seem to work over the long term. I eventually had a multiple site blood patch a few months later.

Also, I might have confused some. I am only doing multiple site bps, not single sites. The comment I posted earlier was merely a reference to multiple site vs single site bps. I don't know of any data that says 30ccs through a single site is any less effective than a multiple injection of 30ccs.

Where do you get your multiple site bps done at, which hospital?

RL

[Baffled]

Thank you for taking the time to answer my questions. I appreciate it.

I too have had headaches which have awakened me during the night and go away after I get up. I am somewhat relieved to hear that this has been a good sign for you. This happened many weeks after I had my second blood patch. I was confused at that time as to why the headache pattern had changed.

You mentioned that you have a connective tissue disorder. Were you diagnosed with it before or after you experienced your first leak? What type of tests did it take to determine this?

You have been through numerous situations. How long does your typical leak last? I had my second blood patch back in August. I know that it did not work. My doctors believe that it has. I continue to have difficulty bending without getting a balloon head or a build up of pressure in my head. I get that same feeling when going up the stairs, as well. There are other things going on but that is the most dominant symptom. Have you experienced that? I want to resume life as "normal" but have let lots of things go to avoid bending.

Hope you are feeling good for the holidays! Take Care, Kris

[repeat leaker]

The theory of the connective tissue disorder is merely that - a theory. Dr. Schievink, in a published paper, and based on meeting with him, has indicated this is most likely the cause of my (and my moms repeated leaks). I have not had any specific workup and have been trying to get into Johns Hopkins (highly rated for connective tissue related treatments) however they have not replied to my repeated attempts.


I too experience much of what you said - the headache can vary from day to day. This AM I woke up at 4 and have not gotten rid of the headache at all. I have started drinking my water again this AM, have taken a pain pill, and will lie down to seek relief.

Happy Holidays
RL