My ME is in remission

[valentinelynx]

Just wanted to share this post, which explains my Invasive Cervical Traction test:

https://medium.com/@jenbrea/path-to-diagnosis-part-iii-traction-ff041cbdf9b4

"Then we went to thirty pounds of traction. At thirty pounds, something extraordinary happened. I did not anticipate it. It took me by complete and total surprise.

I felt…normal."

This brought tears to my eyes. I can only imagine, and hope, to experience something like this someday! Thank you for sharing your experience... and putting to bed the doubters who say it would be impossible to know if you are better in a day or two under traction. You didn't need a day or two: it was nearly instantaneous once the pressure on your brainstem was relieved by adequate traction. Furthermore, it wasn't some "non-ME-related symptoms" that were relieved, but that feeling of ever-present illness that I and I assume many others here know so well.

 

[pattismith]

Just wanted to share this post, which explains my Invasive Cervical Traction test:

https://medium.com/@jenbrea/path-to-diagnosis-part-iii-traction-ff041cbdf9b4

"Then we went to thirty pounds of traction. At thirty pounds, something extraordinary happened. I did not anticipate it. It took me by complete and total surprise.

I felt…normal."

your story is so amazing, I can't believe how doctors failed to see your neurologic syndrome, it is so impressive.
How they possibly missed that you were just stopping breathing, it's unbelievable (but I do believe you of course).
I look forward to read the head pressure measures, thank you for sharing so much hope for other patients.

 

[Pondering]

Just wanted to share this post, which explains my Invasive Cervical Traction test:

https://medium.com/@jenbrea/path-to-diagnosis-part-iii-traction-ff041cbdf9b4

"Then we went to thirty pounds of traction. At thirty pounds, something extraordinary happened. I did not anticipate it. It took me by complete and total surprise.

I felt…normal."

Amazing both in content and the quality of the writing! Thank you so much for sharing your experience.

 

[valentinelynx]

Thinking about your disagreement with the surgeon about whether you stopped breathing or not: I would assume, because you were receiving deep sedation for the pin placement for the halo that they were monitoring your breathing. This is usually done with a sensor to pick up exhaled CO2 attached to the nasal cannula or face mask. I wonder if, instead of complete apnea, you were having episodes of very shallow breathing called hypopneas. These could look normal breathing on a tracing from a monitored nasal cannula or mask (these aren't sealed so the quantity of CO2 exhaled is not an accurate measure of depth of breathing), but feel inadequate to you, like you weren't getting adequate air exchange. Just a thought.

 

[JenB]

Thinking about your disagreement with the surgeon about whether you stopped breathing or not: I would assume, because you were receiving deep sedation for the pin placement for the halo that they were monitoring your breathing. This is usually done with a sensor to pick up exhaled CO2 attached to the nasal cannula or face mask. I wonder if, instead of complete apnea, you were having episodes of very shallow breathing called hypopneas. These could look normal breathing on a tracing from a monitored nasal cannula or mask (these aren't sealed so the quantity of CO2 exhaled is not an accurate measure of depth of breathing), but feel inadequate to you, like you weren't getting adequate air exchange. Just a thought.

I was having complete apnea but it was not lasting long enough (15-45 seconds) for me to desaturate. Unless you are looking very closely, I imagine it is easy to miss things because the machine does not alarm. When I had an invasive angiogram (at a different hospital), the anesthesiologist eventually noticed I was having gaps in respiration but only after the first few times it happened. She called it “breath holding.” I really can’t say why she missed it the first several times other than that my blood oxygen saturation remains normal. (Except when I was in the ICU the night before, without my collar, and had gotten in a particularly bad position—the night nurse confirmed this. I would go down to the 80s, sometimes 70s and the machine would alarm.) The next article is all about breathing, the dynamics of which became very clear once my surgeon realized this was something to investigate. When the apnea would happen, I could not move my diaphragm or chest wall muscles at all. Occasionally, I could make my diaphragm quiver, but not enough to do even 1% of an inhale or exhale.

@jeff_w experienced similar difficulties getting medical professionals to recognize his apnea.

This is a good reminder I need to explain this more clearly, especially for medical professionals.

Note: I was not in a halo.

 

[AlleyCat]

@JenB I have been following you since I Googled "what to do when drs give up on you" and your Ted talk came up. I watched it and cried because I knew, right then, this is what I have. It took a while to convince any drs. But I have just been getting worse, nothing helps. Then I saw Jeff's post on here and started thinking about all my symptoms. I have read all your updates on Medium including this last one about the invasive cervical traction. You explained my "episodes" of passing out that I've had for the last 20 years. I have never had a dr who could figure out why I have the "episodes". I even went to the ER while having one and the dr told me it was a migraine.

My family practice dr is the only one who listens to me and she tries to help. She sent me for a 3T cervical MRI last December and I have a hemangioma on C7 so have been waiting for my appointment with a neurosurgeon on June 21. (almost here, so nervous) I don't know if they will listen to me or not but they did tell me to be prepared to have an 1 to 2 hour appointment so they can get a complete history. And that more than 1 person will be in the room because they like to have more than one set of eyes and ears on a problem.

Also your comment about feeling normal made me cry. It's such an unreal thing to think of after feeling so unwell for so long. I can only hope.

To @JenB and @jeff_w Thank you from the bottom of my heart. You have at least given me hope and better yet information. And knowledge is better than hope any day.

 

[Alvin2]

Just read this coincidentally

https://www.bbc.co.uk/news/world-us-canada-48266430

I am curious what medication she was given.

 

[nandixon]

I am curious what medication she was given.

Sounds like her worst symptoms were involuntary movements, so she may have found relief with a drug used to treat dystonia.

 

[Alvin2]

Sounds like her worst symptoms were involuntary movements, so she may have found relief with a drug used to treat dystonia.

I'm not sure that would work, but according to wikipedia

Different medications are tried in an effort to find a combination that is effective for a specific person. Not all people respond well to the same medications. Medications that have had positive results in some include: diphenhydramine, benzatropine and atropine. anti-Parkinsons agents (such as ropinirole and bromocriptine), and muscle relaxants (such as diazepam).

https://en.wikipedia.org/wiki/Dystonia#Treatment

 

[nandixon]

@Alvin2, She (Hailey Dickson) calls it "dystonia" in an Instagram post but when I watch the accompanying video she made of her involuntary movements, it doesn't really seem like dystonia, but I'm not sure.

 

[valentinelynx]

Unless you are looking very closely, I imagine it is easy to miss things because the machine does not alarm. When I had an invasive angiogram (at a different hospital), the anesthesiologist eventually noticed I was having gaps in respiration but only after the first few times it happened. She called it “breath holding.” I really can’t say why she missed it the first several times other than that my blood oxygen saturation remains normal.

Actually, I'm appalled. I don't think there's any excuse for an anesthesiologist to be paying such poor attention to the patient that she doesn't notice apneas. It can take several minutes for desaturation to occur if you are receiving supplemental oxygen. That's the reason for monitoring expired CO2. And, if the anesthesiologist was unaware of apneas of 45 seconds, the only reason could be (assuming CO2 monitoring was used) is that the apnea alarm was disabled, which is dangerous. I'm afraid too many of my colleagues get lazy and rely on alarms when they should be watching not only the monitors, but the patient! And if you are going to ignore your monitors and your patient, then you should at least keep your alarms on! Gah!

 

[valentinelynx]

I am curious what medication she was given.

For tremors or spasticity from neurological causes (other than Parkinson's), there are many possibilities. These include benzodiazepines, particularly clonazepam, other agents such as gapapentin or pregabalin, or the anti-spasmodic medications such as baclofen or tizanidine.

 

[Rikirkpatrick15]

Just wanted to share this post, which explains my Invasive Cervical Traction test:

https://medium.com/@jenbrea/path-to-diagnosis-part-iii-traction-ff041cbdf9b4

"Then we went to thirty pounds of traction. At thirty pounds, something extraordinary happened. I did not anticipate it. It took me by complete and total surprise.

I felt…normal."

Hi @JenB ,

I have just been diagnosed with CCI and possible spinal stenosis by Dr. Henderson. I made an appt with him after reading your story. I know he doesn't do the same traction tests that Dr Bolognese does. Is the traction test used to confirm if the patient needs surgery or to actually determine what the position of the cervical spine should be? I am just a little worried that without the traction test, if I get surgery from Dr Henderson, that I won't get the same results you had. I plan to send my tests to Dr Bolognese for a 2nd opinion, but I live closer to Dr Henderson so being treated by him would be more convenient. Any comments you could make on this would be so appreciated.

Riley

 

[JenB]

Actually, I'm appalled. I don't think there's any excuse for an anesthesiologist to be paying such poor attention to the patient that she doesn't notice apneas. It can take several minutes for desaturation to occur if you are receiving supplemental oxygen. That's the reason for monitoring expired CO2. And, if the anesthesiologist was unaware of apneas of 45 seconds, the only reason could be (assuming CO2 monitoring was used) is that the apnea alarm was disabled, which is dangerous. I'm afraid too many of my colleagues get lazy and rely on alarms when they should be watching not only the monitors, but the patient! And if you are going to ignore your monitors and your patient, then you should at least keep your alarms on! Gah!

I am glad you are appalled but the delay in recognizing this happened in two different hospital ORs. At least I got to those ORs and it was eventually noticed. At ERs and in consult rooms, multiple doctors were entirely unconcerned. @jeff_w had a similar problem getting doctors to recognize his apnea. Maybe he can shed more light.

 

[GypsyGirl]

I am curious what medication she was given.

It might be a reference to Diamox, generic name acetazolamide. It's a common diuretic medication used for idiopathic intracranial hypertension (among other things), and can help take pressure off the brain. High pressure is one of the reasons Chiaris can form, as pressure in the brain pushes the cerebrellar tonsils down into the spinal cord. Some Chiari malformations resolve once the pressure from the brain is less. Resolving Chiari could treat all the symptoms mentioned.

The Driscoll Theory explains more clearly the specific areas in the brain affected and how it works. If you Google for the PDF, the explanation for Chiari is on page 17. An eye doc discovered the use of Diamox when she and her children developed related issues, developed this theory, funded the research herself... Diamox in effect cured them and I think she has a POTS treatment clinic now.

 

[JenB]

I do think in that first OR I must have alarming eventually. The apneas could be much shorter than 45 seconds, though, if I wasn’t in what was the most provocative head position for me.

 

[Alvin2]

@Alvin2, She (Hailey Dickson) calls it "dystonia" in an Instagram post but when I watch the accompanying video she made of her involuntary movements, it doesn't really seem like dystonia, but I'm not sure.

For tremors or spasticity from neurological causes (other than Parkinson's), there are many possibilities. These include benzodiazepines, particularly clonazepam, other agents such as gapapentin or pregabalin, or the anti-spasmodic medications such as baclofen or tizanidine.

This would all be trial and error since all these medications were designed for other targets.
Someone asked her on Instagram what medication it is and she didn't answer. I can't blame her but it would be nice to know.

It might be a reference to Diamox, generic name acetazolamide. It's a common diuretic medication used for idiopathic intracranial hypertension (among other things), and can help take pressure off the brain. High pressure is one of the reasons Chiaris can form, as pressure in the brain pushes the cerebrellar tonsils down into the spinal cord. Some Chiari malformations resolve once the pressure from the brain is less. Resolving Chiari could treat all the symptoms mentioned.

The Driscoll Theory explains more clearly the specific areas in the brain affected and how it works. If you Google for the PDF, the explanation for Chiari is on page 17. An eye doc discovered the use of Diamox when she and her children developed related issues, developed this theory, funded the research herself... Diamox in effect cured them and I think she has a POTS treatment clinic now.

Very interesting. I had done a quick google but had not come across this but will look into it further when i can.
From what i can tell there is no official drug treatment available for chiari

 

[GypsyGirl]

Very interesting. I had done a quick google but had not come across this but will look into it further when i can.
From what i can tell there is no official drug treatment available for chiari

Her paper (The Driscoll Theory) is worth a read. As far as I know, this isn't "official" drug treatment for Chiari, but she's presented at some continuing educations conferences (for EDS or POTS, I forget which, maybe both) explaining why Diamox should be considered for such. Her publications, youtube channel, prettyill forums, anecdotal cases of patients in various un-affiliated forums, and research is available for perusal. Might be a facebook group too.

As I understand, only some Chiari - that caused by IHH (idiopathic intracranial hypertension) - would be helped by this. But if you fit the appropriate profile, it's a low risk theory to try out compared to say, surgical decompression, and a virtual cure if IHH is the underlying reason.

I find it reassuring to see that there's "more than one way to skin a cat". (as the colloquialism goes - please don't skin actual cats).

 

[Alvin2]

Her paper (The Driscoll Theory) is worth a read. As far as I know, this isn't "official" drug treatment for Chiari, but she's presented at some continuing educations conferences (for EDS or POTS, I forget which, maybe both) explaining why Diamox should be considered for such. Her publications, youtube channel, prettyill forums, anecdotal cases of patients in various un-affiliated forums, and research is available for perusal. Might be a facebook group too.

I will look into it.
And i agree that unoffical or off label treatment is not a bad thing since quite a few drugs have been found to work where they were not designed for. But that said proper testing after identification is a good idea but can be hard to get done.

As I understand, only some Chiari - that caused by IHH (idiopathic intracranial hypertension) - would be helped by this. But if you fit the appropriate profile, it's a low risk theory to try out compared to say, surgical decompression, and a virtual cure if IHH is the underlying reason.

Very interesting. I know i have a chiari malformation but no idea if its causing anything. I don't know how to look into it.
As for low risk yeah surgery scares the hell out of me.

I find it reassuring to see that there's "more than one way to skin a cat". (as the colloquialism goes - please don't skin actual cats).

+1

 

[valentinelynx]

I am glad you are appalled but the delay in recognizing this happened in two different hospital ORs. At least I got to those ORs and it was eventually noticed. At ERs and in consult rooms, multiple doctors were entirely unconcerned. @jeff_w had a similar problem getting doctors to recognize his apnea. Maybe he can shed more light.

I just don't get it. If the patient isn't breathing it is OUR JOB to know that! So sorry about you and @jeff_w 's experiences with my specialty.