Dear Dr

Some Examples of Why I Have This Web Page….

I have had a PDPH [Post Dural Pucture Headache] for almost a month now! I received it after an Epidural Steroid Injection. I have had four blood patches, to no avail. What else can I do? I am unable to work or carry on with my normal life.

Just a message to let you know that I've linked your web pages on Spinal Headache Prevention to my web page.

Having suffered from a spinal headache for 3 months… I feel I have a mission to do anything I can to prevent these horrendous headaches.

I had a spinal headache for 2 weeks. I did not known what was wrong for several days, except that I had never hurt or thrown up so bad in my life. Since then I've been up for long periods three different days followed by bad headaches.

In May of this year, I had a spinal tap, to rule out MS.

I had a horrible headache starting the next day and lasting for about a week.

I just wanted to let you know that I enjoyed reading your article. Unfortunately, I suffered from a Spinal Headache after the birth of my second son just a few weeks ago. Lucky for me it only lasted for 7 days.

It was indeed the worst pain I have ever encountered. I wish more doctors would read your article so other people would not have to endure what I had to.

You can put me on your books of having the longest dural puncture headache.

It's been 2 months and 1 week for me.

I'm actually going in today to my doctor for a check-up. I still have the headache, but it's not excruciating like it was for the 1st month. I'm starting to think that I should try to have the blood patch, but the side-effects make me nervous. But waiting another month to see if it goes away just turns my stomach. Anyways, I'm printing your article for future reference.

I developed a spinal leak after surgery and spent 9 days in the hospital, 5 of those days with a drain in my lower back. It was the worst headache I have ever had. I now have a leak that is not repairable say my doctors.

The first LP [diagnostic lumbar puncture] gave me a severe headache for one week. The second LP, which took less than 5 minutes to do, caused me to have an incapacitating headache with body pain and vomiting for one month. I have had 3 blood patches which each helped for a 24 to 36 hrs. To date I still have what has been diagnosed as low pressure headache due to LP by several neurologists and one headache clinic. They all say it is a direct result of the LPs……. Too bad you didn't give me the LP. You sound like a much more caring doctor than the doctor who gave me the LP since mine dumped me as a patient after I became so sick with LP headache. Apparently I am not the only patient he has treated badly because his right to practice at [name deleted to protect the guilty] Hospital was suspended for two years. Too bad he wasn't suspended before I let him put the needle in my back. Too bad there aren't more doctors like you who don't want to see patients suffer.

[A few words from a none-too-happy (but honest) anesthesiologist:]

With all due respect, I have a problem with your approach [of using the Internet to spread the word]…I can understand that you feel you have a discovery that the world should know about.

I believe your intentions are pure….

I don't really care, because I hardly do any spinals…

I also think that this may lead to some patient somewhere sueing his doctor, "because didn't his stupid doctor read the article on the internet" [or the "Regional Anesthesia" Journal]

[To which I say, if that's what it takes to wake doctors up, they are hard of hearing!]

[TWO MONTHS AND COUNTING….]

Dear Dr. Hatfalvi,

I read your article on avoidance of lumbar puncture headaches with great interest, and much sadness, as I am an unfortunate sufferer. I had a lumbar puncture on May 13th, and as of today, July 24, I am still very

much feeling the effects. ..

Besides the burning, bursting feelings (which have subsided enough now that I can carry on my activities, but are nevertheless very uncomfortable and troubling)which arise when I change position from sitting to

standing, or strain, etc., there is a constant pressure in my head and I now experience my facial pain which was not there prior to the puncture. (it has been over 2 months).

[July 25] I had a spinal tap done on Monday July 20 and still I'm gettingheadaches! I'm ready to chop my head off.

I recently had an LP done at XXXXXXX medical center, resulting in a severe spinal headache. I had a blood batch performed unsuccessfully the next day. It was a week before the pain diminished to the point I could sit up….

I hope your work helps at least one person avoid this. If it does, it will have been worth your time. BTW, I heard of your web site from a newsgroup I participate in regarding MS.

I found your web page about Spinal Headache prevention too late. My wife had a Spinal Tap done 3 days ago and cannot lift her head because of the pain in her head. She has not had the blood patch yet (it will be Monday before Insurance will cover it).

[ My only comment is "UNBELIEVABLE…. and TRAGIC"]

[FIVE MONTHS OF HEADACHE… and COUNTING]

[October 25]

After months of searching the internet it was a pleasure to discover your site. Someone listed it in a news group either about MS or Chronic Pain. I did a search in

http://www.dejanews.com for spinal+tap+headache and it came up.

My wife had a tap in May. Within a few hours the headache hit and has been quite severe since (now late October same year) [FIVE MONTHS]. She has spent many days lying down. Coke did help a bit but for only shot intervals. No headache tablet relieved the pain.

Her Doctors are finally now saying that they will look at her again at the hospital where she had the original tap. Until now they ignored her headaches saying they would go away.

[Kind words from another anesthesiologist]

Just a note of encouragement from a fellow anesthesiologist. Your efforts are appreciated and valuable. Please continue.

[ Even the children suffer….]

My 5 year old daughter had an emergency spinal tap 3 weeks ago for possible meningitis. The test results were negative. She had the severe headache, not for 24 hours, more like 3 days, after the 3 days it wasn't gone but better

[Kind words from an anesthesiologist in Greece]

I read your article in the internet and a light of hope embraced my soul. As an anaesthesiologist I find myself in the condition to treat that undesirable kind of misfortune, the postspinal headache after epidurals. That will be very kind of you if I could have some information about your proposal. Frankly I'm really much interesting to it. As you stated there is not much to do when something like that occurs. I also know it and unfortunately some of my patients. So a sign like [your article] is a present to all. I wait with impatience to your reply . I work in a maternity clinic in Greece. Thanks in advance.

I suffered from a spinal headache in October when I had my child. My

headache lasted for 4 weeks.

We found your article, unfortunately we found it too late.

My friend's chronology:

5/18 He receives a mylegram and starts experiencing headaches

5/24 He receives 1st blood patch but it doesn't make the headaches go away.

6/01 Headaches won't go away, he gets 3 days of medicine.

6/04 He receives 2nd blood patch, headaches are gone for two days then

return.

6/08 The doctor who did the blood patches tells him to see his family

doctor and that the headaches are not being caused by a spinal leak….

I wish I would have known about this 2 years ago - I had (6) spinal taps

…

I had headaches like I've never had before - I can't even describe the pain!

I bookmarked your site in case I ever have to have another one (I hope not!). The spinal taps were worse than brain surgery! I wound up having surgery again to repair the leak.

I am 27 years old.

I had never had a headache in my 27 years.

In May of this year, I had a spinal tap, to rule out MS.

I had a horrible headache starting the next day and lasting for about a week.

It was indeed the worst pain I have ever encountered. I wish more doctors would read your article so other people would not have to endure what I had to. Luckily, I also have a very supportive husband who did everything for our family for the week I was down.

Thanks again for all of the information!

Dear Dr. Hatfalvi,

I have been searching the Internet for information regarding spinal headaches as my sister is currently experiencing one from a recent lumbar puncture done to rule out (or in) MS, vascular malformation, or neoplasm…... I want to express to you how thankful I am to have found your web site. I wish I would have found your information prior to my sister's LP. I have had an LP and did not experience any problems, so therefore, thought everything would be fine for her and recommended she do it. I did not feel comfortable though with having her internal medicine doctor perform it; I would have preferred she had an anesthesiologist perform it…… I am very pleased to know someone like you exists in the medical field. I have always said there are good doctors, but they are one in a million.

Finally, a few words written about the page by an anesthesiologist on a medical newsgroups:

Read this article. Didn't like the intent to alarm a patient audience.

I think the mechanics has merit- creates a plug- effect- haven't heard this before.

[Are you afraid of an informed patient?]

THANK YOU FOR YOUR ENCOURAGING WORDS! WE ARE MAKING A DIFFERENCE.