Any news about SPI 1005?

I would say, if you have no symptoms, then why do the test?
Also, insurance woudn't cover it if no symptoms.

 

The article in the link I posted said some of the people who had IJV compression were asymptomatic except for hearing loss. I've had surgery in my neck that could have caused scar tissue that could compress my IJVs on each side thus I was interested in checking out my vascular situation.

 

I suspect Kurtin has the same thing I have - it's an endolymphatic sac shunt to help keep the fluid in the inner ear in better equilibrium. I didn't apply for the program because I knew that was a middle/inner ear surgery & the list of qualifications excluded people who'd had that sort of surgery.

 

did the sac shunt help?
It helped my cousin's wife for a short while, then she had to have a vestibular neurectomy (2002) as she had a 5-day long vertigo attack and was in the hospital.
I had a 2-hour episode at 11 PM and can feel another coming on now.....

 

I'm sorry you're in the midst of having vertigo attacks, KathyH! I hope it passes quickly & no others follow.

I was told the shunt surgery would end vertigo for me & some testimonials I read/listened to confirmed it had helped others so I opted for it. It did help keep my symptoms more steady for a couple of years then gradually increased tinnitus, ear pressure & vertigo returned. My doctor said the shunt can clog up over time because it's so tiny & apparently it can be cleaned out or replaced, but I didn't think it was worth going through the surgery again. Recovery wasn't a big deal for me, but a small section of skull is removed so the E sac can be accessed & that permanently changes what hearing you have left in the ear. In my case it was like I was hearing underwater i.e. sounds & voices were more muffled or seemed more distant than they were. I wasn't told that there would be a permanent post op change in my hearing which was a bit disconcerting.

 

Fascinating study about venous insufficiency. I printed it out and want to take it to a doctor. But what kind of doctor? A spine surgeon? I don't think there are any of the other types of dr.'s in my area that you mentioned...and at the very least, I would need a referral from a dr. who thinks there might be something there worth pursuing.

Thanks so much for the interesting lead!!

 

Here is an excellent link from Caring Medical in Florida about cervical spine problems.

Symptoms and conditions of cervical spine compression causing internal jugular vein stenosis – Caring Medical Florida

 

11 days actually. No improvement yet, in fact my tinnitus has been louder. Hopefully that is a coincidence and not the drug. I don't have an issue with vertigo - that is under control with Betahistine. I will report back as soon as something happens - good or bad. Thank you.

 

I started an unrelated thread on this topic awhile ago, posted it & realized I was in the wrong place, but the editor wouldn't allow me to delete the message, only modify it which I did, but the original message posted anyway. So annoying!!

 

Today is my last day on the drug or placebo. 28 days on the books. The only thing I can report is that my tinnitus has become noticeably quieter over the past week and I've been less sensitive to hearing distortion on low frequencies. That said, I've had stretches like this before. Other than that I haven't experienced anything notable. No positive, no negative changes or any side effects.

I just finished 3 months on Famciclovir/Valaciclovir as well and will keep going on that. I'm also going to add LDN, low dose naltrexone, soon. My hope is that it works longer term as an antiinflammatory because the only thing I've taken that clearly gives me symptomatic relief of any kind is Prednisone.

 

Thank you for the update. That seemed like a quick month (but maybe not to you, @MrE!). It is difficult to know what's helping when you're taking more than one type of "medication" to treat a specific problem. Seems like a good plan to keep on doing what you were before the drug trial.

 

I totally realize that I run the risk of doing so many things but I've chosen this path. I've literally almost done everything aside from an anti fungal which I'll probably try at some point for a 14 day cycle. The LDN is interesting and I'm eager to see how it goes - I have two month now before I get the real SPI-1005 so I have a good trial period for LDN.

I really should do a post chronicling my journey because I've truly done just about everything.

 

Another quick update for those of you that are interested. I just completed my 28 day check in which includes an audiogram, blood work, general physical, and a questionnaire. One thing I've decided to do during this process is not see my audio results, simply because it takes me away both physically and mentally from my recovery goals. You could say I'm hiding, but it serves almost no purpose to know at this time. So I can't speak to whether my PTA changed for better or worse. However, I can speak to the words in noise test and this time around was interesting. 28 days ago, in my bad ear, it was an absolute disaster. I couldn't get one word. I couldn't even guess. The test ended very quickly after they played the same thing over and over with no success. This time around, I could hear a bit of the noise and could take legitimate guesses at the words. I don't know if I got any correct, but I went through about 6-8 words that I had a good guess at. Keeping in mind I'm bilateral, in my good ear, I went deeper into the test by about 30%. The test gets progressively harder, and this time I went deeper into the test before I couldn't make out the word.

So overall, an interesting experience. Maybe I've been taking the drug, maybe not. Maybe it was a better than normal day for my hearing. Either way something was different this time.

I thought I'd share this out, for those of you following along. Now I go 56 days with nothing and then get the real thing for sure on July 11th. In the meantime I will continue to take my antiviral.

 

Whether or not it was a good day or the SPI-1005/placebo, it's always encouraging to notice improvement on any aspect of a hearing test! I'm sorry to know you're bilateral, but really glad that one ear hears significantly better than the other.

 

Yes, bilateral unfortunately. Pretty much from the beginning. Despite all of this if I can stabilize my hearing I can probably function quite well for the rest of my life. That is if the vertigo continues to stay at bay.

 

So, I have a week left on my drug/placebo.
I have felt absolutely no change other than some bad tinnitis and hypersensitivity in the bad ear for the last week. A very tiny bit of vertigo last night at bedtime, but really nothing bad. I have been doing exhaustive labor outside at church for the last week. Almost wonder if my low sodium intake and sweating is throwing things off balance. Who knows... I am hoping that I have the placebo. Time will tell.