Odd reaction to physical therapy and injections

I think it would be helpful to have a little more information. What diagnosis led you to be getting injections and PT? How many times has this happened?
Also, what is in the injections?
Have you discussed the reaction to the shots with your docs?

Well facial swelling started in 2016. In that year I start to wake with my right arm asleep, had to shake it. 2018 sweating started only on the right side of my neck at night. Low temps started after exercise and I would feel sick. Other issues would could be seizures started in 2017. In 2019 adjustment with a activator at c7 and neck head pain started. Stretching my right shoulder (blade) and pain started there. June 2020 pt, exercising start the previous symptoms. In August pool pt moving me left had the room spinning. Pinching of the front of the neck start pain odd feeling up the right of my face along with chest and sinus congestion. Half of my mouth going numb at that time to date is really bothersome.this has lead to cortisone shot in the ball of my right should for arthritis I had no pain there until the shot. Pain in my neck with weather changes and the ability to duplicate ringing in the ear and dizziness. Lead to the latest trigger point injections. This is the simplest explanation. I have HHT so no nsaids.

As for problems caused by injections, that sometimes happens from the medication, and other times by the solution used to carry the medication to you body. What doctor did your injections?

Have you had any nerve conduction tests done? Numbness makes me think nerves might be pinched or compressed somewhere in shoulder or neck.

What do the doctors think might be causing this? Besides the chiropractor and PT, who has been treating you?
Sue

I have seen 4 primary doctors, spine surgeon, shoulder surgeon, physical medicine, neurologists, knee np,general orthopedics and 2 pain management docs, 5 physical therapists and er docs.
Told possible pinched nevers to 5 pinched nerves. Also degen disc and swollen muscles. I am not allergic to lidocaine or cortisone. I was also offer spinal fusion but I didn't think it was a legit way for surgery. Othe spine doc said surgery won't help and it's not my neck. With no pinched nerve how can it be a nerve.

@ahommer and Sue, you are asking great questions. I am jumping in here because a lot of the symptoms you are describing can be related to cervical spine issues and/or thoracic outlet syndrome (TOS). I have both of those and have had similar things happen before I had spine surgery. When muscle spasms pulled my spine out of alignment, I had vertigo (room spinning). Waking up with am arm asleep does happen with TOS. Pain in shoulder blades and pain between shoulder blades is a symptom of a cervical spine problem. TOS affects blood flow to the brain, and if you also have an upper cervical vertebrae that gets independently rotated, it stretches the vertebral artery that runs through it and reduces blood flow to the brain. TOS patients can pass out by turning their heads. That actually cuts off the flow of arterial blood and a seizure and fainting look pretty similar. Have you had neurological testing related to seizures? That would be a logical step if your doctor thought this was happening.

My doctor tested me for TOS by listening to my pulse in my neck, having me turn my head, and the pulse stops completely. The tightness of the neck which is usually greater on one side, affects jaw alignment, and in turn than compresses nerves that run to the face and jaw. I have had tingling in my face with this too.

Your physical therapist doesn't understand what is going on with your neck, and there is a risk that a PT can cause further damage if you have spine instability. It doesn't sound like any of your providers know what is wrong and continuing physical treatments can put you at risk without correct information. You referenced a chiropractic adjustment in 2019 causing pain from then onward. If you had instability in your spine, something like that can be dangerous.

Everything you said here strongly suggests a cervical spine problem with the possibility of TOS. TOS is most often missed and not understood by most doctors. You may want to consider an evaluation of your spine and testing for TOS, and you should do that at a muti-disciplinary medical center that also lists TOS as a condition they treat so you will be able to find specialists who understand it. Mayo is an excellent place for that if you are able to come.

Here is a link that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
If you wish to request an appointment at Mayo Clinic, you may use this link to get started.
http://mayocl.in/1mtmR63
Have you been evaluated by a spine specialist before? Do you have imaging of your cervical spine such as an MRI or X-ray that may show a degenerative condition? (Note: I just saw your other post that was published while I was writing this response to you.)

@hommer I think you need some more opinions from other spine specialists. It took 6 opinions for me before I found a surgeon who got it right and he was at Mayo. If you have thoracic outlet syndrome, that will complicate diagnosis because of overlapping symptoms. I can answer your questions about cervical fusion because I am a Mayo spine surgery patient, so please ask any questions you have. I had a single level fusion at C5/C6 and had great results. Here is my story:
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Thank you! I have been have problems getting dizzy and feeling weird. I was sent to a seizure specialist for another issue that started one year after this issue. I swear they are all connected and even though they found some things I am told none of it is why I am doing so poorly. My friends want the happy active me back. I was a nut disc golfing 2 to 3 times a week at the gym 3 times a week, hiking when I could to now I can barely get up.

@ahommer When C1 & C2 are twisted or rotated, it can bring on vertigo. That is what happened to me, and when my PT realigned those vertebrae (gently), the vertigo stopped until the next spasm moved things and started it up again. I actually fell backward when I looked upward at a time when my C1 & C2 were skewed. There is also a condition called Bow Hunter's Syndrome where C1 & C2 stay turned to one side. Muscle spasms will happen if you have a spine issue because your body is trying to protect the injured area.

When you seek out a specialist, go to the very best. You have already been stumping your doctors and that just turns into a parade of spine surgeons that may run away from a complex case because they don't understand it or don't want to fail and have that on their record, so pick the most intelligent and "recognized in their field" surgeon that you can find. I looked at where they trained, read their research papers, and for how they excelled with scholarships and awards because I wanted a surgeon at the top of his game who loved his job, and I found him. When you read their literature, you find out what cases interest them and you need to be a good fit for what they like to do. I had 5 spine surgeons refuse to help me and the only surgeon who understood my case was Dr. Fogelson at Mayo. I asked him why he wanted to be a neurosurgeon and his answer was because it is hard and is challenging and he enjoys solving difficult problems. That is the kind of surgeon that you want. I wish I had started there first instead of wasting 2 years trying to find help with doctors who didn't want me as a patient. I am the patient who found my own diagnosis in medical literature and I found what 5 spine surgeons missed. When I asked for an appointment at Mayo, I sent that literature in with my request. You can do the same thing with the extensive article about thoracic outlet syndrome and how it relates to your symptoms. Make sure you phrase it as a question asking if your case may be like this literature has described. It is the doctor's job to make the diagnosis, and make sure you are not telling him how to do his job.

If your neurologist did not suggest TOS as a possibility, they should have because it is something they should know about, but many doctors miss it. I was tested at Mayo to reconfirm that diagnosis with tiny blood pressure cuffs on my fingers as they raised my arm and turned my head and they got a measure of how the blood pressure changes. I had a consult with a thoracic surgeon who consulted my neurosurgeon while I was at the appointment. That is what is so good about Mayo. It is a team effort among all your doctors. Mayo has many spine surgeons with various sub-specialties.

If you want to try to be seen at Mayo, you may want to call and see if your health insurance is in network as a first step, then use this link to contact them. http://mayocl.in/1mtmR63

They will arrange for you to send in your imaging and records for review and you can request them to be sent to a particular surgeon if you wish. I did that because my type of symptoms that were also described in medical literature as "a rare presentation of symptoms", were mentioned in another paper co authored by Dr. Fogelson. I knew that he would know about a case like mine. Up until that point, I had been given many wrong answers by other surgeons.

Is there anything else I can answer for you? What is your next step?

I have requested an appointment. C5 or c7 keeps twisting out. Where pain management put the needle in were not hurting before now I have pressure and pain. The doc notes showed he put needles in the left and it was the right. Praying I can get in to mayo to figure this out. I want my life back.

@ahommer After your initial request, someone at Mayo would contact you to arrange for imaging and records to be sent in. I would suggest you write a letter to include describing your symptoms and discussing how your doctors have not figured out what is wrong. You can mention what they have done and your results. Do you have documentation from a physical therapist that your vertebrae are twisting? If yes, send that too. You can mention that no one has tested you for thoracic outlet syndrome and that you are wondering if you have it and if it is complicating your symptoms with your spine problem. I think this will help if you can document how your doctors have failed to get a proper diagnosis for you. I'll keep my fingers crossed for you!