Post-Op Headache Update: Occipital Blocks and Lumbar Puncture

General
1

I think I'm finally learning something about the headaches that I've been having since my 2nd decompression. There is still a ways to go - but we've got to celebrate the little stuff, right?

As a refresher, I've been having headaches that are triggered by head/neck movement and position. They are a "blunt" or "aching" pain that goes from the top of my neck to the top of my head. They are happening 3-5 times a day and are usually a 4-8 on the pain scale.

Now to the new stuff:

I had a lumbar puncture yesterday (why does nobody believe me when I tell them I need 2x the local anesthetic for it to work?). My opening pressure was completely normal. I expected this.

I had bilateral greater occipital blocks just over two weeks ago. After the pain from the procedure settled down, I noticed that I was having the same headaches, but the pain distribution only went from the top of my neck up to the bottom third of my head, where the occipital block started. So, my quality of life is a little better, but the blocks did not stop the headaches.

This makes me think that:

-the headaches are coming from my neck, not my head

-I am experiencing nerve pain, although the origin is still unknown

Other things:

-it seems that the only medicine that helps my headaches is muscle relaxer, so they also must be involved somehow

-I have a bulging disc at C5-C6, but It has never really caused me problems. I had it before my 1st decompression

-The last cervical MRI I had was between my 1st and 2nd decompressions.

-I have been tested, and I do not have tethered cord

-I am wondering about craniocervical instability from the surgeries

-I am wishing that I was tested for EDS before my first surgery (It ended up being kind of an emergency situation, so I never got tested) and I am thinking that it might be good to be tested now.

I am seeing Dr. Heffez in a week and I hope that he has some good ideas about where to go from here.

Any ideas from you guys? You are the best resource of all!

2

Thanks for the suggestions, Emmaline.

Sadly, my docs have asked me to stop Aricare while I am on other topical creams they gave me for my neck/head (lidocane-based) and I am not allowed to take magnesium supplements because of some other meds I am on.

I swear, I could be an honorary pharmacist with the amount of medication I have been on since my diagnosis. I am sure many of other people here feel the same way.

3

Hi Donna, just wondering if you have tried a cervical collar. I hope you can get to the bottom of your pain!

4

Donna, glad you are narrowing things down, even a little bit is a big deal! I think you are right to check into CCI from the EDS. I second the suggestion to try a collar. Make sure it is tall enough for the length of your neck- and as I just learned from seeing Henderson (for CCI) the collar is most important at night while you sleep. I’m curious to see what Heffez has to say. I hope hope hope you get a genuine lead at your appt. you have been through a lot.

Jenn

5

I saw Dr. Heffez yesterday.

We ruled out tethered cord and CSF pressure problems. Nor a surprise to me, but very reassuring.

He agreed that my pain is most likely coming from my neck. To verify/treat this I will begin cervical traction. Depending on how well that works we will decide the next step, whether that be more testing or steroid shots in my neck or something else.

The only major deformity in my neck visible under a prone MRI is still my bulging disc at C5-C6, which includes some mild stenosis at that level. I still don't feel that is the major problem here, as it is my understanding that those nerves go to my arms, not up into my head, where the pain is. I'm hoping that if the traction helps I'll be able to get an upright MRI to further investigate the upper part of my neck.

Honestly, after two decompressions I'm just thrilled to go to a neurosurgeon's office with a problem and not have them tell me straight off that I need surgery.

6

GoldenClover and Jenn,

Thanks for the ideas! I, too, thought about a cervical collar - and so did Dr. Heffez.

I tried one maybe two months ago and I really liked the support it gave me, but the pressure it put on the back of my neck actually triggered pain.

I'm definitely going to give it another go. Hopefully being two more months out from surgery will allow me to try it again, or maybe combining it with the lidocane cream I have for my head/neck will make it tolerable. Being able to wear it at night sounds brilliant, as I find myself waking up in the middle of the night because I've moved to a position that causes my neck to hurt.

Thanks!

Donna

7

When I talked with my pain management dr ( who is also a NL) he told me that if you got partial benefit from the ON block then it may take a number of injections before you get the full benefit. I am scheduled for my second one soon. He also did trigger point injections down my neck and trapezius. He said that after that he would use Botox to help with the spasms in my neck ( and you can use it for occipital neuralgia). But I would recommend they do it with interventional radiology so that they don’t inject too deep and it communicates with CSF.

I am having tons of neck issues right now, spasms, and pain in my head ( both burning and a feeling like someone is smashing my head in a car door).

I tried accuouncture but it didn’t work for me,just made the opposite muscles spasm, but you might want to try it?

8

WHO is Dr. Heffez? He seems to do a lot of surgery? I am suspicious of docs. now. I have been misdiagnosed my entire life until 3 years ago---and still no competent Dr. within 500 miles of us knows how to treat this-----Not even at the University of Nevada Medical Center (YOU know, the place where they treated the tiger magician who got mauled in Las Vegas?) I feel like this CM will kill me. I have a 14 yr. old daughter who needs me. I don't know where to turn.

9

Oh, about the cervical collar, I use one as well for support when the pain gets bad. As a normal cervical collar it eventually rubbed on my occipital nerve and caused more pain, so I sewed a sock like thing for it to shrink it down a few cm's that seems to help as I can get some support but it does not rub on my occipital nerve.