Results 1 to 9 of 9

Thread: LP then 3 Blood Patches, Doctors give up.

  1. #1
    New Community Member
    Join Date
    Aug 2016
    Location
    NorthWest Montana
    Posts
    5

    Default LP then 3 Blood Patches, Doctors give up.

    Hi,

    I had a LP June 7th to test for MS(it came back negative). However, following the LP I had a 10/10 positional headache, crawling to bathroom, eating from laying down position etc. So 3 days later I had a blood patch # 1. Which reduced my 10/10 to a 5/10. Then July 3rd I had blood patch #2, no change in positional headache. August 1st I had blood patch #3, no change in positional headache. I can't sneeze, cough or walk up the stairs without making my headache worse. I wake up every morning without a headache and lay there in bed thinking this is the day...then 30minutes later the headache comes on and last ALL day.

    My doctors here in MT have thrown their hands up saying it's impossible to still have an LP headache after 3 blood patches. Where do I go and how do I get this fix when doctors say it can't be true after 3 blood patches? What next steps diagnostically will help prove it's an LP or other? I found a Dr. Shievink in CA and have sent my info to him, but I imagine it will take a long time to get in and would love to end this headache sooner than later.

    Thank you for any guidance, advice or success stories.

  2. The following user says "thanks"


  3. #2
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,728
    Blog Entries
    11

    Default

    Hi MTheadache,

    Welcome to BrainTalk!



    Though I've had MS I've never had a lumbar puncture and don't envy those who have had to go through it.

    I strongly urge you to find a new doctor or at the very least insist on getting more assistance from your current doctors, maybe by underscoring the amount of pain you are in and how long it has lasted. I did a bit of Googling and easily found mention of a lumbar puncture headache lasting 19 months:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660496/

    Also, there is this general information (from the Mayo Clinic) that you probably already know, but reading it might persuade you that a headache that severe and lasting that long shouldn't be ignored:

    http://www.mayoclinic.org/diseases-c...n/con-20025295

    Dr. Shievink looks like a good possibility. I hope you'll hear something soon on that.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  4. The following 2 users say "thanks"


  5. #3
    New Community Member
    Join Date
    Aug 2016
    Location
    NorthWest Montana
    Posts
    5

    Default

    Thank you Agate! I did send my records to the Mayo. They are currently under review. I wish I had known the repercussions of an LP upfront, the intervention radiologist that performed it was very casual about the chances of a headache. He was even shocked when I came in for the 1st blood patch. If there are any other LP leakers out there this is what I have found out so far. It is not only the needle size, but needle type and how many times they reposition the needle. So, if they use a cutting needle which yields faster flow and repositioned several times, leakers could be fighting multiple tears instead of one puncture hole. It is so frustraiting, bc I am not only dealing with the neuro symptoms I went in for the testing for, but now saddled with one heck of a positional headache. Thank you again for responding. I will keep you posted!

  6. The following 2 users say "thanks"


  7. #4
    New Community Member
    Join Date
    Aug 2016
    Location
    NorthWest Montana
    Posts
    5

    Default

    I spoke with Dr. Shievink and I am head to LA! for 4th a blood patch and if that does not fix it...surgery :(

  8. The following 2 users say "thanks"


  9. #5
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,728
    Blog Entries
    11

    Default

    MTheadache, I'm so glad you'll be able to see the doctor you found. I hope that that 4th blood patch will be the answer for you, without need for surgery.

    I have the impression that the LP is a test that needs considerable technical expertise to be done right.

    You do know that there's a CSF leak section here? It's been quiet recently but you might find some similar experiences described in the threads there:

    http://www.braintalkcommunities.org/...uid-(CSF)-Leak
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. The following user says "thanks"


  11. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

    ((((((MTheadache)))))) ~

    TO BRAINTALK!

    So glad that you found us, but I'm very sorry for the pain you've been enduring for 2 months. I looked up Dr. Shievink, and his credentials are impressive, plus Cedars Sinai is an excellent hospital/medical facility. LA is a giant metropolis, so I would guess that Dr. Shievink has far more experience (and state of the art equipment) than you would find in Montana.

    Since you mentioned that the LP was to rule out MS, what are your neuro symptoms, which led to the LP? We have a very active MS forum here at BrainTalk (which is Agate's home forum). You might try posting there with your symptoms to see whether they ring a bell with anyone.

    Perhaps when you see Dr. Shievink, you might discuss your symptoms with him. While you're there, he might refer you to a neurologist, who could help diagnose you. It can't hurt to ask.

    Please let us know when you're scheduled for Blood Patch #4, so we can send you positive, healing energy. And be sure to let us know how it all turns out.

    Safe travels and success ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  12. The following 2 users say "thanks"


  13. #7
    New Community Member
    Join Date
    Aug 2016
    Location
    NorthWest Montana
    Posts
    5

    Default

    Earth Mother 2 Angels. Thank you for the positive energy. I do love Montana, it is beautiful, but yes Doctors don't come here to practice to be on the cutting edge of medicine or technology, so I have really not done well getting care here.

    My symptoms came out of no where. I had onset of lower back pain with no incident to cause it. Nerve pain then started to radiate down both legs followed by muscle cramping,buzzing in feet/numbness, flushing of chill bumps and then came the muscle twitches all over. No muscle weakness and I have had two full body EMG/NCS(even in my face) and they came back normal. So they ordered the LP to rule out MS. It came back negative, so the "speculate" but can not confirm on the MRI that there may be some nerve compression in my lower back throwing switches.

    I actual got a call from Duke's CSF program as well as Dr. Shievink at Cedar Sinia . I have decided to go with Duke bc Dr. S is a neurosurgeon and Duke CSF program is Neuro Radiology, so they focus more on dynamic blood patches that include fibrin glue and blood guided by x-ray. They are going to not only do a posterior patch on L3/4 but an anterior patch as well by entering thru my side. The procedure is on Monday 8/29. I am nervous bc this will be the 4th posterior patch and 1st anterior patch. Hope to sticks so I can avoid surgery with Dr. Shievink. After much research it appears that surgery of the Dura puts you at high risk for infection.

    This board is full of wonderful and informative people. I hope I am am able to help some one too. :) I will keep posting on this thread to update how the leak is going

  14. The following 2 users say "thanks"


  15. #8
    New Community Member
    Join Date
    Aug 2016
    Location
    NorthWest Montana
    Posts
    5

    Default

    Update: It's been 7days since my patch and I am back from Duke Medical. Dr. Timothy Amrhein performed the patch using CT Scan. He did a 360 degree blood/fibrin glue patch. He did 4 patches in 1. So in all I have been patched 7 times, but this last one was a 4 for 1 :) It allowed him to get completely around the dura. As of now my head hurts worse. My back hurts as well, but that is typical for me after patching for about 2-3 weeks. The nerves in my lower back do not agree with spinal needles. I am not sure if I'm in rebound high pressure or my body didn't accept the patch. I am to talk to Dr Amrhein by ph to see if we wait and see or attack again with another patch!
    I did find a CSF private group on Facebook that has been very informative. So if anyone is looking for support for CSF I highly suggest checking into that group.

    I hope all is well braintalk! I will try to get this updated often.

  16. #9
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

    ((((((MTHeadache)))))) ~

    Thank you for updating us on your procedure at Duke Medical. I'm sorry to hear that your headache is worse and that you also have back pain. I hope that Dr. Amrhein will be able to help you, and that your symptoms abate very soon.

    I'm glad that you found an active CSF group on Facebook, where you're receiving the support and feedback you need.

    Please do return and let us know how you are.

    Sending a healing prayer for you ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Similar Threads

  1. Sad that I can't Give
    By SuzE-Q in forum Multiple Sclerosis
    Replies: 10
    Last Post: 12-25-2014, 12:37 PM
  2. just to give you a laugh....
    By andromeda31 in forum Child Neurology
    Replies: 8
    Last Post: 09-06-2013, 05:49 AM
  3. three failed blood patches, now a diagnosis of borderline-POTS? any advice?
    By darpa6132002 in forum Cerebrospinal Fluid (CSF) Leak
    Replies: 1
    Last Post: 07-07-2013, 12:12 AM
  4. Give This A Try
    By Porkette in forum Epilepsy
    Replies: 2
    Last Post: 10-24-2012, 01:44 PM
  5. A new neurological disease in primates inoculated with prion-infected blood or blood
    By flatfish in forum Creutzfeldt Jakobs Disease (CJD)
    Replies: 0
    Last Post: 06-03-2012, 08:43 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.