20 patients now found positive for CCI / AAI, there must be many more...

[StarChild56]

My situation has worsened because I was frustrated w not getting super clear responses from traction and starting to doubt my cci diagnosis and so when I got my new traction device, I went up to 30 pounds, recklessly overdoing it. Boy, I’m sure I have cci now. I had the worst rebound effect, basically lasting two days so far, and it’s right when I have to travel to a new doctor for an appointment. I’m sure my instability has worsened. Both neck ache and the neurological symptoms. It’s my fault, and now I’m bummed that talking to bolognese will likely take awhile because I’m worsening

Oh, I am so sorry! Dr. Kaufman was very firm with me that I should not exceed 20 lbs when I'd upped it to 25lbs cause it felt better...so I can imagine 30 lbs. I hope you have recovered.

 

[StarChild56]

hoping those who have been to dr B or further in the process then me could give me your thoughts and help me with my concerns.
I ve posted this already but the jest is..... I spoke to his office and asked about sending dr b a cervical MRI with flexion and extension and any other info he would like done with a Tesla 3 MRI since my kind GP was willing to write it up before she left on maternity leave.
I called the office and was told by the receptionist that it wasn't necessary he could read any MRI. I asked in as many kind and respectful not pushy ways why I thought it might be necessary to get this "other" MRI done. she said, no fill out the papers on line send the MRI and we will get back to you.
I let it go wrote about it here and then called back again. She then said they had a meeting and she will send me ALL the new paper work he now wanted from "us" and to send the old MRI of my cervical vertebrae and my lumbar vertebrae.
I send it ,then the receptionist called me and made an appointment for June for a teleconference. no other information.

I want my "diagnosis" to be heavily weighted on my MRI. ( the best MRI for his reading) I am worn out on misdiagnosis's based on my symptoms. I wasn't expecting so much paper work on my symptoms as part of the basis of a diagnosis.
300.00 is a lot of money for me and I am now afraid that my "appointment" is going to be being told I should have another MRI done. Something I was trying to avoid by calling the office to find out exactly what he wanted before I sent anything from the bloody beginning.
wondering if anyone else has sent him a standard MRI and had him make a diagnosis based on just that?

could you tell how much he weighed the symptoms vs the MRI?

were you told anything prior to your consult?

did the office tell you they didn't see anything on the MRI or did you have to have an appointment with him to

hear that you didn't have anything on the MRI?

have no idea if this appointment means he sees something or I have to have this appointment to be told he didn't find anything.

thanks so much, frustrated!!!!

I have an appointment coming up soon. My MRI was in an open MRI and only a .3 Tesla which Dr. Bolognese said had poor quality images but I have my diagnosis of CCI anyway (I did have flexion and extension views). I agree with @toyfoof that they would not bother with a consult if they did not see any evidence in the MRI.

 

[lafarfelue]

so when I got my new traction device, I went up to 30 pounds, recklessly overdoing it

Man, I'm sorry you've injured yourself... I guess this is a personal request; please please PLEASE approach all treatments with more caution and look after yourself more steadily?? I think that 30 pounds suddenly would injure even a healthy person's neck and spine. It would be so awful to cause yourself more damage and add something like CCI/AAI to your illness when it may not be quite the case already (without full assessment completed yet).

I say the following out of concern and care: From watching your self treatments etc here for a while, it seems like a common pattern of behaviour for you (upping dosages suddenly or extending yourself/a treatment a little too far)? Is there someone you can bounce these ideas off before you go do them? Sleep on them, perhaps, before jumping in?

 

[Remi]

I had to pay almost 1000 pounds out of pocket for the scan if I remember correctly. Some of that money was because I elected to have a scan of the lower back as well, as I have had lower back issues for ten years and there was evidence of a collagen/cushioning problem there too.

I then had to pay another hefty sum of money (no less than 500EUR) to see the neurosurgeon specialist in Barcelona. The scans were forwarded to him. The face-to-face consult alone was 300EUR. You basically pay 300EUR to have a neurosurgeon tell you there is nothing that can be done or that has proven to help CCI other than surgery, which I find questionable. In large part this is questionable because of the financial component.

You really need to go out of your way to get a CCI diagnosis. I don't know if this might help you being as you're in the States, but I know that I payed about 200EUR or so to get an official, signed diagnosis of CCI. If one day I return to Canada, I think this might help me get a tax cut for disability. I know that this point is relevant for some of us who look into financial stuff and who do not live in horrendous parts of the world where social assistance does not even exist.

I'm really glad you could pay all this and the surgery!
I got quoted £1250 as a discounted price for neck MRI by someone who went to London. Do you remember what your cost would have been just for the neck? Do you know the fee of Gilete to look at the MRI?

 

[mattie]

I'm really glad you could pay all this and the surgery!
I got quoted £1250 as a discounted price for neck MRI by someone who went to London. Do you remember what your cost would have been just for the neck? Do you know the fee of Gilete to look at the MRI?

GM286 did not have the surgery, only the diagnosis.
MRI by Medserana in Hannover for me was 1820 euros. (01-2019)
Online evaluation was 260,70 euros. (01-2019)
Prices may change.

 

[Remi]

OK, thanks. Cologne quoted me 900 for any MRI this year, but Gilete prefers London.

 

[frozenborderline]

It’s interesting that some people were told by bolognese that if they didn’t have a dramatically positive reaction to traction not to seek imaging. I had some positive reaction to traction but hard to say if dramatic but I had a lot of the symptoms of cci. And I had *some* benefit from a hard collar adjusted right, but I wouldn’t say dramatic. And now it seems my imaging has shown cci as bolognese is going to have a consult w / me.

One thing that kind of bums me out is just having a hard time gauging my response to traction. I generally get a positive response but it doesn’t help w PEM a lot, usually only w the pressure headache and dizziness, and so to get an accurate gauge of my response to traction, it was difficukt when doing it scheduled w a Pt as sometimes I wouldn’t be having vertigo or symptoms flaring during the time we were supposed to do traction. When the PT trained my sister to do traction, this was good as I could do it whenever I had a flare, and so I got more positive results that way. -and we wrote that on the writeup we sent to bolognese. Hopefully e takes that into account. All in all I think that the traction trial has been difficult because of my staking so much on this diagnosis that I have gotten nervous and second guessed so much that it is difficult to gauge my true reaction to traction. It’s generally positive I think, but when there’s so much resting on this decision, I think my mind becomes clouded by doubt and I am not paying attention to my body. Which is part of why I took so long to get back to bolognese with the writeup.

But all in all, with the symptoms that I have, which I have written about in more detail elsewhere, I am fairly sure that I have cci and that it is contributing to my problems. And I am also fairly sure that the PEM would prevent me from just doing conservative treatment for it and strengthening my neck muscles. So that basically leaves surgery and the expensive stem cell treatments that some have benefited from.

Although I have to admit I’m also curious about bpc-157 and electromedicine.

 

[Yuno]

[QUOTE="debored13, post: 2197012, member: Although I have to admit I’m also curious about bpc-157 and electromedicine.[/QUOTE]


Sorry, but what is bpc-157?

 

[Remi]

Medserena quoted £1,070 for cervical spine MRI with flexion and extension. They also have a cranio cervical junction MRI in neutral with rotation to the left and right. This also looks at CFS. Both together are £1,395 but a Dutch lady can refer me for £1,250.

 

[frozenborderline]

I am trying to keep bologneses office updated, since my symptoms have gotten worse both due to that one time overdoing traction and due to travel for doctors appointments (I use collar but it’s not enough to offset the damage from being dragged into a car and being in car seat is not perfectly flat)

I am hoping that they will take into account my newly worsened symptoms when considering surgery or not. We are also on his waitlist because June 3 is awhile away. Also almost considering spending the money for a report from gilete, but not even sure that we have enough imaging, since I didn’t get rotational view in my mri. Although I’ve been told that my cci is very clear in my imaging so maybe he’d pick up on it without additional imaging.

 

[frozenborderline]

From anyone here who has cci, any tips on managing symptoms while deteriorating? Traction helps only short term. Helps w the pressure headache, and vertigo and even w sensitivity to stimuli and energy to a small extent. Really feel that the instability has worsened I can almost feel my vertebrae slipping

 

[StarChild56]

From anyone here who has cci, any tips on managing symptoms while deteriorating? Traction helps only short term. Helps w the pressure headache, and vertigo and even w sensitivity to stimuli and energy to a small extent. Really feel that the instability has worsened I can almost feel my vertebrae slipping

I am sorry you are deteriorating. I can tell you what has helped me:
PT ¨exercises"- which can be done lying down/reclining. There are isometric exercises specifically for my neck which I can tell has strengthened my neck. Combined with 2 exercises I have to do sitting up (so sometimes I can not do them but usually I can find a couple times in the day where I can) that correct posture (scap squeezes). Core, deep core TVA muscle strengthening which can be done laying down.

All of these (and a few more) which I do throughout the day and some days hardly at all if I am doing worse) have made a big difference for me.

On top of that, I have a special pillow (a contoured natural gel and latex) which is the only way other than no pillow I can lay down (I sleep on my side, then move to back, then to side due to pain).

Far infrared heating pad which I use daily on the back of my neck/head and upper shoulders.

Laying down/reclining vs. being upright.

If I am upright (which is rare; when I go to PT or a doc appoinment or lab) - I use my neck collar but not to exceed 4 hours per day (which I am never out that long).

Oddly, I have a passive motion machine for the low back (back 2 life) and that helps me many times with my shoulders and neck.

When I am able to, getting onto a back stretcher - ¨True Back" is the one I use. You can have the higher part for your upper back or lower and I use it for both (with a pillow under my head). It helps to realign my spine and reduce the horrific pain/stiffness I get in upper back, across shoulders and neck.

The manual cervical traction I get weekly and now she added in (approved by my specialist) some myofascial release really helps. But it is not permanent in the sense of how good it feels when she does it - it is AMAZING I FEEL so much relief. That of course does not last. But overall my neck pain has lessened, frequency, duration and better response to meds for my many migraines has been consistent and is a big improvement for me.

I think you will feel much better after your consult with Dr Bolognese (Iḿ sorry if I am mistaken about this my brian fog can interfere).

Wishing you all the best.

 

[StarChild56]

Should add - these ¨exercises" I do are gentle enough that they do not cause me to crash (although a few times I did until I realized how little I needed to try...for instance for the isometric neck exercise, where my hand is against one side of my head she said to use max 50% of my strength to push against my hand...and I used too much and it hurt - I have figured out what amount of force to use). I am tired afterward but I am always exhausted. So I am saying I figured out how much I can do spread out over the day almost all done laying down so that I have strengthened my muscles and not suffer bad PEM.

 

[frozenborderline]

Cci symptoms worsened again and getting a few recent crashes where it was hard to talk and impossible to move. Now wondering what to do to alleviate it. Don’t want to overdo traction , obviously since that’s part of what caused this worsening (but def not all Bc traveling and being upright for appts was part of it). Have a bolognese appt June 3. So it’s a waiting game. And my house is not wheelchair accessible AND it has mold and I’m mold sensitive. I’m wondering if it might be good to do Jeff’s bed foot up method again or also try the inversion table some since that would provide more gentle traction that could supplement manual or device traction. Need relief. wondering about if gilete would do sliding scale and also if we could rig up a van to be medical transport vehicle with bed strapped in somehow

 

[frozenborderline]

Have pain both in the areas where the vertebrae would be (like deep in neck under base of skull, both sides). Also have worsened vertigo and pressure headaches. Going through huge amounts of aspirin and gabapentin. The one silver lining? Since my symptoms worsened, 100% positive response to traction. No doubt in my mind that cci is responsible for many of my symptoms.

 

[StarChild56]

(like deep in neck under base of skull, both sides)

Some of my worst pain is there - where the base of my skull meets the top of the neck, both sides (though often my left is worse). I definitely get relief with manual cervical traction and also myofascial work in the neck (approved by Dr. Kaufman). It actually always aches to some extent but worsens as well.

I'm sorry you are doing worse and about the mold in your home. I hope things get better and worked out for you quickly.

 

[mattie]

Maybe interesting for dutch patients:

Coming Saturday 18-05, Hotel Mitland in Utrecht, The Netherlands:
zebrazworld.com has organized an afternoon with lectures on CCI/AAI in EDS and ME-CFS patients

Dr. Gilete and Dr. Oliver from Teknon Hospital Barcelona will be present. (drgilete.com)
(these neurosurgeons performed my fusion surgery)
Dr. Visser (stichtingcardiozorg.nl) will be talking on the effects of CCI on the autonomic nerve system
(this cardiologist diagnosed me with ME-CFS and POTS in 2016)

 

[frozenborderline]

Have any of the patients with cci surgeries or diagnoses considered contacting a researcher or clinician to make a case report published about them ? @jeff_w , @JenB @mattie
Although w / the latter two you are both early in recovery, I guess I’m generally wondering how this whole paradigm gets quickly moved from “anecdotal/theoretical” to becoming empirically tested. Because as promising as the gains from fusion surgery are, it would Be cool if researchrds also got to the root of why the collagen is failing so there would Be molecular, non surgical treatments. I guess it comes down to lack of funding and difficulty deciding what to prioritize in research, but if I was a researcher I would find anecdotes of full recovery that were believable rare, and promising.

 

[frozenborderline]

Also wondering. ABout a study that is just on diagnoses of cci in patients w /ME rather than a case report of surgery. Could kaufman do this, since he has so many patients w this? Also @jeff_w have you considered writing up the mechanical theory in a medical hypotheses journal ?

 

[hezza]

lectures on CCI/AAI in EDS and ME-CFS patients

That is so cool that they are already lecturing on this in ME/CFS patients. Wish the neurosurgeons in the states would do this & put it up on YouTube.