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Excruciating chronic left side neck pain plus lumbar issues

Posted by AlfredB @ab6540183, Dec 23, 2022

Hi Everyone,

I just joined and this is my first post.
I am a 66 year old male that lives in Melbourne Aus.
Thankfully I found this discussion forum in order to get answers in regards to my deteriorating condition.

For the last 20 years I have been an active sportsman doing long distance bicycle riding and body building, but in the last 9 years I have been hit 3 times (2013,2015,2019) by negligent drivers while riding. These accidents have caused me severe whiplash and a multitude of fractures.

Each time I recovered and went back doing my riding passion.

4 months ago I noticed a pretty strong left sided pain around C6 therefore I went to see physiotherapists and osteopaths. But 4 weeks later at the end of August, this pain got even worse when one night while lying down on my loungeroom carpet, I got up and felt multiple crackles in the spine. It didn't hurt at the time therefore I went to sleep and woke up half hour later in extreme pain going from the left side of my neck, left side of my thoracic spine. I felt as if I was twisted. I was unable to sleep or sit. Standing provided some relief but I couldn't sleep.

Things slightly improved over the next 3 weeks.
I had some MRIs done at the end of August 2022 which showed:

C2/C3:
[No protuberant osteophyte, disc bulging, spinal canal stenosis or
neural foramina stenosis.]
C3/C4:
Minimal broad base central and bilateral lateral disc bulging with
associated minimal right intervertebral foramina stenosis
C4/C5:
Broad-based central and right lateral disc bulging with associated
moderate right intervertebral foraminal stenosis
C5/C6:
Disc bulging resulting in moderate bilateral intervertebral foraminal
stenosis
C6/C7:
Right lateral/foraminal disc bulging resulting in moderate right
intervertebral foramina stenosis

C7/T1:
[No protuberant osteophyte, disc bulging, spinal canal stenosis or
neural foramina stenosis.]
Conclusion:
Multilevel disc bulging and multilevel intervertebral foraminal stenosis. To see the complete reports open the attached PDF.

I contacted TAC which in Australia stands for Transport Accident Commission. They are responsible for paying medical expenses for anyone who has been a victim of a transport accident. Every driver in Victoria pays a premium yearly when they renew their car registration.

I arranged an appointment here to see first and orthopaedic surgeon and then a neurosurgeon. The first specialist told me that I had C6 nerve root impingement and the second specialist reported facet joint syndrome in the neck.

The injury is defined as a mechanical injury.
I noticed a discrepancy between the 2 opinions which left me frustrated. None of the specialists can pin point the exact source of the pain. They both recommended pain management and I am currently on Endep 10, Catapress 100 and Targin 10/5 daily.

Also I was told that no operation for this condition was required and ultimately a fusion, if non invasive, minimally invasive therapies didn't work.

This maybe ok as a temporary solution, but it can't be a life long remedy, because these medicines have side effects and I can't even drive the car to the supermarket when I am drowsy.

In the mean time I had C6 nerve root cortisone injection at the hospital on 1 of DEC 2022, but it didn't work at all after 3 weeks.
I actually have more pain than ever before something like 30% more. I queried the hospital, but they told me that it was done correctly.

Just a few days ago I have had fresh, new MRIs of the cervical/thoracic spine and a bone scan of the whole spine.

Yesterday 23.12.2022, according to the pain management specialist and the neuro surgeon, they couldn't find a lot of difference compared to the previous MRIs taken in August. They were perplexed as to why I feel so much pain. They can't pinpoint the source of the pain.

This is not very re-assuring and I have to keep taking drugs for the next 6 weeks. If I don't take the medication I have extreme, 10 out 10 burning pain that starts around left of neck at C6 going through C7, T1, T2, T3. The pain is also spreading aggressively in the left of my trapezius muscle. I have referred pain in the left shoulder, left scapula, left bicep/triceps and in the little, medium, index finger and left thumb. Referred pain is also felt in the right but not as bad. I also get pain going into my left pec muscle but it is not related to the heart. My cardiologist told that I am fine there even though I can get high blood pressure when I am anxious and stressed out.

To make things worse I have also been getting left/right headaches, left ear ache, left sided head scalp numbness and dizziness from time to time in the last 2 months. Just 2 weeks ago I developed a ringing tone in my right ear which is hypersensitive to sounds. I am a total mess.

The mental depression has been really bad and I have been isolated at home because I am unable to enjoy life like I used to.

Recently when I sit and lie down I feel numbness in my legs and feet. When I stand the problems seems to disappear.

My main frustration is the lack of answers and solutions to fix these problems and two specialists can't agree on a course of action.

I have been doing a lot of research and learned that referred pain can be caused by pressure on neck functional nerves and by facet joints sensory nerves but I don't which one is the culprit. Not even the specialists know.

I am worried that if the compression is not removed in time from those nerves (assuming that it is nerve related) I may get a neuropathy and get paralysis.

My bladder/kidney/liver functions are currently fine.

I don't know if anyone in the Mayo community has come across this and knows something about it.

While searching I found this site which looks promising:
spineconnection org
They can fix a lot of spine related problems.

I haven't received the December MRIs/Bone Scan yet.

Thanks and regards

Alfred

Shared files

summary of mri xray (summary-of-mri-xray.pdf)

Interested in more discussions like this? Go to the Spine Health Support Group.

jm1 | @jm1 | Feb 20, 2023
In reply to @ab6540183 "Hi Jennifer, this neck issues are also causing me other intermittent problems such as: 1) General..." + (show)
@ab6540183

Hi Jennifer,

this neck issues are also causing me other intermittent problems such as:

1) General un-wellness
2) Periods of clear thinking alternating with periods not so clear
3)Headaches that come and go
4) Left earache and jaw ache
5)When bending forward slightly I feel more pain in the left side around C7/T1 and concurrently feeling it in the left lumbar spine, groin, leg and foot
6) Anxiety for no apparent reason
7) Shortness of breath. Struggling drawing air
8)Blocked nostrils even though I am not sick, no sinus, hardly any mucus
9)Dizziness
10)Mental fog. Because I am deaf in my left ear, I feel a pulsating fullness.
11)Seeing blurry at times
12)Something in neck shifting making a single knock sound
13)Balance issues when walking also due to pain in the right hand lumbar nerve impingement
14)Hypersensitivity to sound, mainly cutlery hitting plates sounds.
15)Right side tinnitus as mentioned before.
16) Periods of high blood pressure.
17)Constant fatigue, arms weakness, shoulders pain.

I tell my pain management doctor but he doesn't address these issues.

The inflammation on the right end side has disappeared after taking 900mg of magnesium, I couldn't believe it.

Last night after having my worst pain, it suddenly disappeared after standing on 4 legs like a dog and applying the ice pack for a long time. Unbelievably I went to sleep without taking any meds and slept 6 hours straight, woke up to go to the toilet, went back to sleep and woke up at 7:30. I was feeling good. But later in the day my neck pain started rising, but still sort of bearable

Currently I have a sharp stab between C7 and T1, I am feeling tired, light headed and short of breath.

I am going to get my vertebral arteries checked soon after having seen the neurologist on 13/2/2023.

I wish I never got these bad issues after 20 years of peak physical activity.
In all this trouble I have faith in GOD and pray.

I have attached a picture of me in better times back in 2008.
That day I rode 220km non stop. It is called Around the Bay in day Melbourne Australia.
I kept riding until August 2022 when this problem struck for the first time. I haven't been riding since September 2022. I hope that I can get out of this condition and go back to some normality.

Thank you

Alfred

Jump to this post

Hi Alfred,
So glad you had some relief and take note of what helped you get that sleep.
1) Magnesium helps muscle spasms and contractions, also aids sleep. Beware can cause diarrhea and tummy issues. As an athlete you probably already knew that.
2) My Best Buddy ICE, finally helped you YAY!!! Sometimes I fall asleep on ice, altho not recommended.
3) continuous med dosages have increased effects. If you follow a consistent regime yiu get ahead of the pain instead of catching up.

Some new recs:
1) try some saline spray for nostrils, as amityptline causes dryness. I have gone up to 25 mg for anxiety , but beware, you are taking oxy too, so ASK YOUR DR. , I don't take them together and at least 4- 6 hours apart as per my Dr.
2) i have a zero gravity chair. They sell zero gravity outdoor lawn chairs for approx $50. It helps take pressure off my spine so I can rest.
3) get a pulse ox unit. Track your oxygen breathing and pulse. Keep log, with medicine times. Shortness of breath could be from anxiety or some of your meds. Keeping the log with a comment section can help you and your Dr's track your pain relief and determine better med solutions.

REPLY
AlfredB | @ab6540183 | Feb 20, 2023

I had i real bad set back last night. I couldn't sleep all night, the meds, the ice pack didn't work.

I feel burning pain, feels like a vulcano erupting. It is around the left of neck bottom, further down and to the left side. My body and face feel as if I have a fever but haven't when I checked my temperature. It is out of control, my all neck is burning on the left, When I sit or lie down I feel a corresponding pain, tightness in the left lower back, groin, leg and foot. The left of my back has no impingement only my right.

What is going on?
I had a CT and bone scan today for neck and thoracic but can't make it because I excruciate when lying down and sit down. I can't stay still.
I have to call my doctor this morning because I don't know what to do. Should I get some physio, osteo or acupuncture? I don't know. I feel quite lost as to what is causing so much burning.

Alfred

REPLY
1 reply
jm1 | @jm1 | Feb 20, 2023
In reply to @ab6540183 "I had i real bad set back last night. I couldn't sleep all night, the meds,..." + (show)
@ab6540183

I had i real bad set back last night. I couldn't sleep all night, the meds, the ice pack didn't work.

I feel burning pain, feels like a vulcano erupting. It is around the left of neck bottom, further down and to the left side. My body and face feel as if I have a fever but haven't when I checked my temperature. It is out of control, my all neck is burning on the left, When I sit or lie down I feel a corresponding pain, tightness in the left lower back, groin, leg and foot. The left of my back has no impingement only my right.

What is going on?
I had a CT and bone scan today for neck and thoracic but can't make it because I excruciate when lying down and sit down. I can't stay still.
I have to call my doctor this morning because I don't know what to do. Should I get some physio, osteo or acupuncture? I don't know. I feel quite lost as to what is causing so much burning.

Alfred

Jump to this post

The burning is from the nerve being aggravated..
In 98 before my surgery, I felt like someone was putting a scorching hot iron on my skin. From my L4 the burning went down the side of my hip to the top of my foot. I was constantly packed in ice and on a ton of meds. At this point, I feel someone from your family should be staying with you to help you with meals and daily living activities. I was unable to care for myself when in that much pain. In my opinion, physio, osteo or acupuncture will make it worse at this point. Hope your can see the surgeon SOON. Prayers🙏

REPLY
vlk420 | @vlk420 | Feb 20, 2023
In reply to @ab6540183 "Hi everyone, How are you? Yesterday I went to the physiotherapist locally who did a very..." + (show)
@ab6540183

Hi everyone,

How are you?

Yesterday I went to the physiotherapist locally who did a very gentle manipulation of the neck.

After the session I felt better but later yesterday evening I started feeling a sharp pain around the left side of T3 approximately and the right of T1.

How can something like this happen out of the blue?

When I went to bed to lie down I felt pain in those areas and they felt painful, tight and slightly numb.
While I was lying down on the right hand side ( I can't sleep on the left side or the back because of more pain) I felt that, especially my left leg, was getting more numb than the right leg as well as the foot. Also some left groin tightness and numbness.
Can thoracic issues affect the legs at those levels?

This pain was being felt despite me taking Targin 10mg, Amitriptyline 10mg and Diclofenac 50mg .The pain medication didn't help much.

What is causing these pains? Nerve or facet joint related?

Also the bilateral tinnitus is driving me insane. Still feeling bad pain in shoulders, palms and fingers of my hands on and off.

I asked my pain management doctor but he takes very long to reply to me.

Thank you.

Alfred

Jump to this post

Hi reading your message and it sounds a lot like my life, how can this happen? I don’t know if my leg and foot pain is all part of my recent diagnosis of (Nutcrackers syndrome) A rare vascular condition, and no doctor appointment available till late April, I am not able to get comfortable even with heat, ice, rest, ext.
I can’t sit down or it feels like there is big rock 🪨 on my tiny ischium bone( on left side, even lying down now hurts, rare ichiofemoral hip impingement syndrome they just found too, my doctor has referred me to a specialist currently waiting on seeing a Vascular Surgeon that knows how to treat this terrible so called Morbid condition, it’s really caused A nightmare for me , I can share more because I found out that it’s caused Everything from heart attacks out of no where, no kidding I would be fine and go to bed and wake up sweating and become nauseous and couldn’t stop vomiting. This went on for a couple years, doctors said at the time they figured it was from stress., even sent me to see a psychiatrist, lol. I haves kidney stones, UTI’s, Pelvic congested syndrome,, I was diagnosed in my early 20s, and had a hysterectomy in 2003, for large cyst., and painful periods I was having.
Also I was diagnosed after becoming gravely Ill 😷 with Graves Disease I was treated for in my radioactive iodine for this and have been on Thyroid hormone replacement therapy ever since to replace the one removed from radiation treatment

I have a lot of unanswered questions , concerns and fears regarding about what’s next for me because my disease has gotten worse, I spend more time in bed and called about getting a air mattress because of my pain, I have no subcutaneous fat, and was diagnosed with Lipodystrophy syndrome. I’m sorry for rambling on

REPLY
vlk420 | @vlk420 | Feb 20, 2023
In reply to @ab6540183 "Hi everyone, How are you? Yesterday I went to the physiotherapist locally who did a very..." + (show)
@ab6540183

Hi everyone,

How are you?

Yesterday I went to the physiotherapist locally who did a very gentle manipulation of the neck.

After the session I felt better but later yesterday evening I started feeling a sharp pain around the left side of T3 approximately and the right of T1.

How can something like this happen out of the blue?

When I went to bed to lie down I felt pain in those areas and they felt painful, tight and slightly numb.
While I was lying down on the right hand side ( I can't sleep on the left side or the back because of more pain) I felt that, especially my left leg, was getting more numb than the right leg as well as the foot. Also some left groin tightness and numbness.
Can thoracic issues affect the legs at those levels?

This pain was being felt despite me taking Targin 10mg, Amitriptyline 10mg and Diclofenac 50mg .The pain medication didn't help much.

What is causing these pains? Nerve or facet joint related?

Also the bilateral tinnitus is driving me insane. Still feeling bad pain in shoulders, palms and fingers of my hands on and off.

I asked my pain management doctor but he takes very long to reply to me.

Thank you.

Alfred

Jump to this post

Hi reading your message and it sounds a lot like my life, how can this happen? I don’t know if my leg and foot pain is all part of my recent diagnosis of (Nutcrackers syndrome) A rare vascular condition, and I am not able to get comfortable even with heat, ice, rest, ext.
I can’t sit down for very long or it feels like there is big rock 🪨 on my ischium bone( on left side, and my foot, on the left side, very painful, I can’t stand or walk very fast or far , my PCP thought I had a Neuroma on my foot and sent me to Podiatrist who said this was not a neuroma, and a recent diagnosis of rare ichiofemoral hip impingement,( imaging from MRI ), sudden unexpected pain shout down from Inside my groin area down inside my leg on the right, I never been so scared , my doctor referred me to a orthopedic specialist who has done injections now to calm down my nerves. With minimal pain relief. I’m currently waiting on seeing a Vascular Surgeon that knows how to treat this terrible so called Morbid condition, Nutcrackers it’s really caused A nightmare for me , I can share more because I found out that it’s caused Everything from heart attacks out of no where, (no kidding) I would be fine and go to bed and wake up sweating and become nauseous and couldn’t stop vomiting. This went on for a couple years, doctors said at the time they figured it was from stress., even sent me to see a psychiatrist, lol. They would be stumped as to why my heart ❤️ was going crazy even told me I had a rare tumor called a Pheochromocytoma, but I don’t know, the doctor said she saw it on my kidney and ordered another test, I do have something on my kidney that always shows up, however shows no changes I had kidney stones, UTI’s, Pelvic congested syndrome, I and had a hysterectomy in 2003, for large cyst., and painful periods I was having.
Also I was diagnosed after becoming gravely Ill 😷 with Graves Disease I was treated for in my radioactive iodine for this and have been on Thyroid hormone replacement therapy ever since to replace the thyroid gland removed from radiation treatment
I have a lot of unanswered questions , concerns and fears regarding about what’s next for me because my disease has gotten worse, I spend more time in bed and called about getting a air mattress because of my pain, I have no subcutaneous fat, and was diagnosed with Lipodystrophy syndrome.
Have had lots of Tendonitis in joint and inflammation, I have Osteoporosis and have had spinal fusion at L5- S1, cervical fusion C3-C4, multiple finger surgeries from Trigger finger release and hand surgeries, 3 shoulder surgeries, and a few more!
From my understanding of the new diagnosis now more test and possible biopsy samples, stents, rearrange the whole vascular system IDK

REPLY
AlfredB | @ab6540183 | Feb 21, 2023

@jm1 @vlk420

Hi jm1 and vlk420,

Thanks for all the help and the heart breaking stories about your health. I really feel for you guys, because I am going through physical and mental health issues myself.

Just a little bit over 7 months ago I hardly had any issues, I was capable of doing things, do my sports etc.

How can 7 months change your life, from hero to zero? 😢

I feel very depressed daily, the pain is not abating, the brain is under attack 24/7, your thoughts are centred around the pain because you can't shake it off. Nearly constant headaches and bilateral tinnitus.

I haven't been driving the car for 2 months due to the fact that is painful to seat. Attending my appointments by taxi is a challenge. Some of my appointments are located near the Melbourne AUS central district, 30km each way. I can't find a sitting position that is suitable, worsened by taxi drivers that go hard on the brakes, take off too quickly or go over speed humps too fast.

Yesterday I had to cancel my CT/Bone scan appointment because I was too sore to lie down in those scan machines. I also cancelled the C6 nerve root injection planned for next Friday. I won't be attending my wife's birthday (70) party on Friday at the local pub with her brothers and sisters unfortunately, because I just have too much pain when I sit down. She is not happy about this, but I find it hard to pretend that I am happy while I am in this extremely negative state of mind.

Sorry jm1 yesterday I did go to see an acupuncturist before I read your message afterwards.

I was there for 2 hours. The acupuncturist told me that my body is dry inside and I need to hydrate it more.
I told her that I have a massive burning pain in the left side of my neck. After she put the needles in my neck and back gently, she got me to walk around the office for 10 minutes. I did buy some Chinese herbs that would help me stay hydrated once mixed with water. When I got home, I noticed that my left neck pain had gone down quite a bit, but now the pain had shifted to the right hand side, weird. I am hoping that it will improve.

If I touch gently around C6, C7 on both sides I can feel pain in the neck connecting with pain in my lumbar spine, strange.

I have 2mm retrolisthesis of C4, C5 and 1.5mm spondylolisthesis of C6. I am wondering whether the vertebrae with the 2mm retrolisthesis are pushing against my spinal cord when I slightly bend over causing all those other pains. I asked my doctors but received no answers yet. The doctors' attitude is frustrating me, because I am the one in pain and should be getting answers. Their are wasting my time while I am getting worse.
All I received is meds and more meds, but no real solutions while they are getting paid. I have read that a lot of people around the world with this issues get worse because of mis-diagnosis and lengthy delays in assessments.

I have noticed that I have a hard painful lump on the right between C4/C5 roughly. What is it?
Better check it out shortly.

I do have fear of surgery because I may need a 3 level fusion (maybe C4-C5-C6 I don't) which may restrict my movements and prevent me from driving a car.

My Italian friend from Italy advised me that he got over his issues with physio, ozone therapy and exercises for 12 months. Obviously his condition wasn't as bad as mine.

Recently I struggle to get up from bed, it takes my a couple of minutes to slowly get up, then wash my face and make cappuccino for me and my wife in the morning. I also feel pain in my hip joints.

My social life does not exist anymore. People that called themselves "my friends" never call or visit me to find out how I am going. I only receive calls from some so called "friends" when they have a computer/network problem because I have had 30 years experience in Information Technology. I am not earning any money at the moment and am relying on government's assistance to get by. In May I will start getting my old age pension which won't be a lot of money. To make things worse we have 2 adult sons on mental disability that need to be cared for. With the current cost of living rising weekly it is going to be difficult to manage bills, etc.

I haven't been getting enough exercise, because I fear that the pain may get worse. Anyway yesterday evening I forced myself despite the pain to go for a short slow walk, I nearly covered 2kms. It wasn't too bad.

Best regards to all.

Alfred

REPLY
2 replies
vlk420 | @vlk420 | Feb 21, 2023
In reply to @ab6540183 "Hi Jennifer, thanks for your extensive comment which provides me a lot of information. I really..." + (show)
@ab6540183

Hi Jennifer,
thanks for your extensive comment which provides me a lot of information.

I really feel for your condition. I can see that you are a battler and wont' give up.

The last week whenever I lie down in trying to sleep, the left side around C6/C7/T1 I believe, I get a really tight knot. Feels as if something is stabbing deep inside. The pain becomes unbearable therefore I get up to reduce the pain because for me standing helps in mitigating the pain. But then I have a sleepless night.
I have been taking the recommended pain medication which is made of Endep 10mg , Lyrica 25 mg and Diclofenac 50mg. Currently this medication is hardly helping me in dealing with the pain. The only tablet that helps is Targin 10/5. I am bit worried taking it because of the possible interactions with the other tablets.

This an excerpt of my pain management specialist to my local GP:

MENTAL HEALTH
Alfred demonstrates significant anxiety, feeling “on edge”, depression, frustration, and despair which
he mainly attributes to worsened pain since August 2022. Domestic stressors include 2 children with
special needs. He is currently requiring diazepam prn.

ANALGESIA
• Diclofenac 50mg bd.
• Endep 10mg nocte – side effects including morning sleepiness.
• Pregabalin 25mg nocte prn.
Previous medication trials include Pregablin 25mg (not effective; side effects included mild nausea
and sleepiness), and Targin (very effective for pain management, side effects included “passing out”).
During our previous consult, I initiated Norspan patch 10mcg/hr and Clonidine 50mcg tds. Alfred
trialled Norspan patch for 1 week but found it ineffective. He has trialled 2 tablets of Clonidine only.

PROGRESS
Since last review, I referred Alfred for CT SPECT and bone scan and repeat MRI cervicothoracic spine
(given severe change in neck pain since November 2022 cervical epidural injection). (It was actually 1/12/22)

Bone scan reported:
• Some increased disc degenerative activity at C5/6 with less-marked disc degenerative activity
at C4/5 and to a minimal degree at C6/7.
• No increased cervical facet joint activity; slight increased activity in the left T2/3 facet joint.
• Lumber spine – marked increased disc degenerative activity at L2/3 and L5/S1, slight
increased activity at right L4/5 and left L5/S1 facet joints.

MRI cervical/thoracic spine reported:
• Mild-to-moderate C4/5 and C5/6 central canal stenosis.
• Right C4/5, left C5/6 and right C6/7 foraminal stenosis.
• Thoracic upper and mid facet joint and costovertebral degenerative changes.
• Left paravertebral mass distal to the left T2/3 neural foramen (nerve sheath tumour is most
likely).

Alfred’s worst pain complaint is left-side lower neck pain, between midline and 4cm left of midline,
described as burning and stabbing, improved when standing, and worse when lying supine and with
most activity / physical task. Alfred describes some periods of minimal pain (only when standing up) , and other periods of excruciating pain. Given that pain is worse when supine, sleep is greatly affected.
Other complaints include hand and feet numbness, intermittent left hand pain, and low back pain.

Differential diagnosis include:
• Left C7/T1 facet joint pain, given MRI report of moderate left C7/T1 facet joint arthropathy in
the setting of 2mm C7/T1 anterolisthesis.
• Left T2/3 facet joint pain, given bone scan report of increased activity in the left T2/3 facet
joint.

Today my pain management specialist called me after me complaining about the ineffectiveness of the medication and he proposed that I have the following in the next few days:

CT guided left C7/T1 T1/T2 T2/3 facet joint steroid injections

I am so scared of the cortisone injection now because when I took it on 1 Dec 2022 it caused more pain that I never had before the injection. Did they do it right? . The cortisone injection (Transforaminal C6 nerve root) was not proposed by my current pain management specialist, but it was recommended by the Orthopaedic Clinic of the Alfred Hospital here in Melbourne Australia. after I presented myself at the emergency department the week prior due to excruciating pain.

I also requested a booking to see another neurosurgeon in a couple of weeks to get a second opinion.
Currently I do not know if I suffer from facet joint syndrome or my C nerves are being compressed by the discs or else.

The anxiety is always high when I am in pain and I have thoughts that I might not make it. Every doctor tells me that I can't die from pain, but quality of life is 0 at the moment. I can't shift my focus off the pain. I tried to meditate but it is extremely hard when the pain at 10 out of 10, 24/7.

I am not sure if I should go ahead with the above cortisone injections because I know they may not last long and am worried I may get more pain. I would have thought that maybe medial branch nerve block injections would have been more suitable for identifying the culprits.

Best regards

Alfred

Jump to this post

Sorry to hear, I feel exactly like you, I’m praying this Specialist Vascular Surgeon who treats the rare condition of Nutcrackers Syndrome
Can save me, but no promises I have read, lots more test, I feel I’m going nuts, because it’s rare and that seems like this crazy thing has been with me all my life, but now it gotten worse and I don’t think I can make very far , crazy how this happened, I had asked my family to please get an autopsy on me and let me know what they found, lol! This was until last week when I finally got a diagnosis
I’m serious, I’ve been trying to find out what happened to my left side for so many years and suddenly my right side also is hurting on the buttock bone with severe left foot pain in different parts of my foot even, veins in my left arm spasm veins will suddenly engorge and get really tight and stiff, then return to normal, what I find confusing is why they couldn’t find it sooner I’ve had 2 heart attacks, mysteriously, people don’t believe that when they see me because I’m so small sadly . I have to wait till April now to see doctor here and see what they say, I hope I make it to see that, and hope like hell I can get back on my feet, I like you was Very active physically fit, now atrophy and weak , depressed yes! Frustrating yes, give up No, never stop fighting

REPLY
1 reply
vlk420 | @vlk420 | Feb 21, 2023
In reply to @ab6540183 "@jm1 @vlk420 Hi jm1 and vlk420, Thanks for all the help and the heart breaking stories..." + (show)
@ab6540183

@jm1 @vlk420

Hi jm1 and vlk420,

Thanks for all the help and the heart breaking stories about your health. I really feel for you guys, because I am going through physical and mental health issues myself.

Just a little bit over 7 months ago I hardly had any issues, I was capable of doing things, do my sports etc.

How can 7 months change your life, from hero to zero? 😢

I feel very depressed daily, the pain is not abating, the brain is under attack 24/7, your thoughts are centred around the pain because you can't shake it off. Nearly constant headaches and bilateral tinnitus.

I haven't been driving the car for 2 months due to the fact that is painful to seat. Attending my appointments by taxi is a challenge. Some of my appointments are located near the Melbourne AUS central district, 30km each way. I can't find a sitting position that is suitable, worsened by taxi drivers that go hard on the brakes, take off too quickly or go over speed humps too fast.

Yesterday I had to cancel my CT/Bone scan appointment because I was too sore to lie down in those scan machines. I also cancelled the C6 nerve root injection planned for next Friday. I won't be attending my wife's birthday (70) party on Friday at the local pub with her brothers and sisters unfortunately, because I just have too much pain when I sit down. She is not happy about this, but I find it hard to pretend that I am happy while I am in this extremely negative state of mind.

Sorry jm1 yesterday I did go to see an acupuncturist before I read your message afterwards.

I was there for 2 hours. The acupuncturist told me that my body is dry inside and I need to hydrate it more.
I told her that I have a massive burning pain in the left side of my neck. After she put the needles in my neck and back gently, she got me to walk around the office for 10 minutes. I did buy some Chinese herbs that would help me stay hydrated once mixed with water. When I got home, I noticed that my left neck pain had gone down quite a bit, but now the pain had shifted to the right hand side, weird. I am hoping that it will improve.

If I touch gently around C6, C7 on both sides I can feel pain in the neck connecting with pain in my lumbar spine, strange.

I have 2mm retrolisthesis of C4, C5 and 1.5mm spondylolisthesis of C6. I am wondering whether the vertebrae with the 2mm retrolisthesis are pushing against my spinal cord when I slightly bend over causing all those other pains. I asked my doctors but received no answers yet. The doctors' attitude is frustrating me, because I am the one in pain and should be getting answers. Their are wasting my time while I am getting worse.
All I received is meds and more meds, but no real solutions while they are getting paid. I have read that a lot of people around the world with this issues get worse because of mis-diagnosis and lengthy delays in assessments.

I have noticed that I have a hard painful lump on the right between C4/C5 roughly. What is it?
Better check it out shortly.

I do have fear of surgery because I may need a 3 level fusion (maybe C4-C5-C6 I don't) which may restrict my movements and prevent me from driving a car.

My Italian friend from Italy advised me that he got over his issues with physio, ozone therapy and exercises for 12 months. Obviously his condition wasn't as bad as mine.

Recently I struggle to get up from bed, it takes my a couple of minutes to slowly get up, then wash my face and make cappuccino for me and my wife in the morning. I also feel pain in my hip joints.

My social life does not exist anymore. People that called themselves "my friends" never call or visit me to find out how I am going. I only receive calls from some so called "friends" when they have a computer/network problem because I have had 30 years experience in Information Technology. I am not earning any money at the moment and am relying on government's assistance to get by. In May I will start getting my old age pension which won't be a lot of money. To make things worse we have 2 adult sons on mental disability that need to be cared for. With the current cost of living rising weekly it is going to be difficult to manage bills, etc.

I haven't been getting enough exercise, because I fear that the pain may get worse. Anyway yesterday evening I forced myself despite the pain to go for a short slow walk, I nearly covered 2kms. It wasn't too bad.

Best regards to all.

Alfred

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I truly hope you can get some answers and pain calms down. Vascular compression and hip impingement, affects major nerves and can stop you in your track, that’s what it did to me

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AlfredB | @ab6540183 | Feb 22, 2023
In reply to @vlk420 "Sorry to hear, I feel exactly like you, I’m praying this Specialist Vascular Surgeon who treats..." + (show)
@vlk420

Sorry to hear, I feel exactly like you, I’m praying this Specialist Vascular Surgeon who treats the rare condition of Nutcrackers Syndrome
Can save me, but no promises I have read, lots more test, I feel I’m going nuts, because it’s rare and that seems like this crazy thing has been with me all my life, but now it gotten worse and I don’t think I can make very far , crazy how this happened, I had asked my family to please get an autopsy on me and let me know what they found, lol! This was until last week when I finally got a diagnosis
I’m serious, I’ve been trying to find out what happened to my left side for so many years and suddenly my right side also is hurting on the buttock bone with severe left foot pain in different parts of my foot even, veins in my left arm spasm veins will suddenly engorge and get really tight and stiff, then return to normal, what I find confusing is why they couldn’t find it sooner I’ve had 2 heart attacks, mysteriously, people don’t believe that when they see me because I’m so small sadly . I have to wait till April now to see doctor here and see what they say, I hope I make it to see that, and hope like hell I can get back on my feet, I like you was Very active physically fit, now atrophy and weak , depressed yes! Frustrating yes, give up No, never stop fighting

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I will pray for you, for all of us to get better, have a way out🙏⛪. When need urgent help. Life is hell daily, there must me some light at the at the end of this dark tunnel.
Sometimes I wonder when will get out of this hole.

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1 reply
jm1 | @jm1 | Feb 22, 2023

I am so very very sorry you cancelled your transforaminal injection for C6. The transforaminal is a much more effective injection for me,
( and more difficult, your current pain mgmt dr may not be skilled enough to do it, hence he declined it, that happened to me, he just kept doing worthless intralaminar epidurals that gave me zero relief) I really hoped it would bring you releif. My Dr gives me 1 Zanax to take 45 mins b4 the procedure so I can relax. Someone drives me. Glad the acupuncture helped you and didnt cause a bad reaction. Hope you see the new surgeon soon, I know you fear a surgery, but perhaps he can also change your meds to something that works better for you, since your pain dr isnt listening to you. I know you don't like the meds and many times it sounds like you skip them, and 2 days later you are back in very bad pain. I must stress consistently taking them is very important, they build stronger effectiveness over time. And like I stressed before please Stop bending forward, it only adds unnecessary stress to the problem.
Said a rosary for you yesterday. It's always darkest before the dawn.🙏

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